how roy is doing

Post Operation!

2006-12-15T11:59:00.000-05:00

Well, I found a computer in the hospital and decided to give a new post-operation update.

According to all the nurses and doctors that have given their opinion, Dr. Shellenberger did a great job. The scar and swelling are much better than they expected. I was able to get out of bed and sit in a chair for 2 1/2 hours the morning after surgery. Today, I have been able to get up a walk around. My range of motion is good so far, but I'll require a lot of physical therapy to keep the arm and neck from freezing up. The therapists have been very helpful.

I'll be in room 919 at MD Anderson until Monday. Then they will move me to the 7th floor in a "leaded" room where I'll be given my radiation treatment. I likely will NOT be able to have visitors after they start. They expect that I'll be able to go home Thursday or Friday.

I'll update again later... Thanks everyone for your support and concern. I know Melinda and the Kids appreciate it also.

Roy

"No Stone Left Unturned"

2006-12-12T07:43:00.000-05:00

Boy, am I overdue for an update! More than 3 months have gone by since the Shands bad news... For those that haven't been updated by me personally, I apologize. I know many of my old friends and distant relatives depended on the blog for updates. The Shands experience didn't cause me to give up the fight, but the desire to give constant updates on the blog was squashed. But now I'm back. Here's a full and lengthy update...

Shands Says "No", MD Anderson Says "Yes"

After Shands decided not to help me, I found out that one of the best head and neck surgeon's from Houston had recently relocated to Orlando and had a lot of experience with my specific cancer. I was able to get a referal from Dr Bibliowics to see him.

Melinda and I went as soon as possible to see Dr. Shellenberger at MD Anderson. Although his opinion after reviewing my case was that the previous doctors went about treatment in a way that left me with few current options, he agreed without question that he would take me as a patient and would "leave no stone left unturned" trying. We were very impressed with his attitude and willingness to help, unlike the doctors at Shands.

We then went on a roller coaster ride of changing ideas and opinions about how bad or good things were and how to approach treatment. I'm not resentful of this experience, because they were really trying hard to do the very best thing for me. And although it was difficult to go through it, I felt like we were in the best of care.

At first, it was viewed that the tumor wasn't around the carotid artery or at the skull base and that surgery could and should be done right away. Then it was determined that the cancer was dead (not "viable") and that surgery should wait until it returned. After doing a checkup with a fine needle aspiration, we found that the cancer returned. Then a new CT Scan shouwed that maybe the tumor was in fact around the carotid artery. With cancer back, surgery was inevitable...with it around the carotid, it was going to be very high risk. But we started moving towards that event, probably about three or four weeks ago.

Before I go on with the current update, let me introduce "my team" to you. The three key players are Dr. Shellenberger, Dr. Mañon, and Dr. Tseng. Here are their bios from the MD Anderson site. All are very experienced and I'm comfortable with the level of experience, expertise and humanity of all three.

Thomas D. Shellenberger, DMD, MD
___________________________________________________________

Dr. Thomas Shellenberger, head and neck surgeon, is a member of the Thoracic/Head & Neck Specialty Section at M. D. Anderson Cancer Center Orlando. He holds certification from the American Board of Surgery.

Dr. Shellenberger comes to M. D. Anderson – Orlando from The University of Texas M. D. Anderson Cancer Center in Houston where he recently completed a clinical and research fellowship in Head and Neck Surgical Oncology. He also completed the Physician-Scientist Training Program in the Graduate School of Biomedical Sciences of University of Texas at Houston. Additionally, Dr. Shellenberger fulfilled fellowships in oral and maxillofacial tumor and reconstructive surgery and in hyperbaric medicine and problem wounds at Jackson Memorial Medical Center at the University of Miami.

He completed his internship and residencies in oral and maxillofacial surgery and general surgery at Jackson Memorial Medical Center. At Jackson Memorial he served as the chief resident in oral and maxillofacial surgery and in general surgery.

Dr. Shellenberger holds doctorates in medicine from the University of Miami and in dental medicine from the University of Pittsburgh.

Dr. Shellenberger has received numerous awards including the Young Investigator Award from the American Society of Clinical Oncology, 1st place winner of the Bristol Myers Squibb Award in Clinical/Translational Research from the University of Texas M. D. Anderson Cancer Center and the Byers Award from the American Head and Neck Society.

He has published original articles in several peer-reviewed journals and authored chapters in text books of head and neck surgery. His translational research interests include angiogenesis, invasion and metastasis of squamous carcinoma. His clinical research interests include complicated thyroid cancer and sarcoma of the head and neck.

Dr. Shellenberger is a member of the American College of Surgeons, American Head and Neck Society, American Society of Clinical Oncology, American Association of Cancer Research.

Rafael Mañon, MD
__________________________________________________________________

Dr. Mañon, whose specialty is thoracic, head and neck cancers and gynecologic oncology, is a board-certified radiation oncologist with M. D. Anderson Cancer Center Orlando.

Mañon completed a residency in radiation oncology at the University of Wisconsin (UW), an internship in internal medicine at Jackson Memorial Hospital in Miami and earned his medical degree from the University of Florida. AT UW, he served as the chief resident of radiation oncology during his final year and as an instructor in radiotherapy technology.

Mañon brings a wealth of experience in Helical Tomotherapy to M. D. Anderson – Orlando. Through the University of Wisconsin, where tomotherapy was created, he is researching and developing more aggressive treatments for cancer, with the aim of improving cancer cure rates while maintaining a clinically acceptable level of side effects.

Fluent in Spanish and English, Mañon received the Outstanding Achievement in Science, Engineering and Mathematics Award from the Office of Naval Research. He holds memberships in many professional societies including the American Society of Clinical Oncology, American Society for Therapeutic Radiology and Oncology, American Brachytherapy Society and the Association of Residents in Radiation Oncology. He has made presentations at several national meetings of these societies.

Additionally, Mañon has published several peer-reviewed articles in medical journals including the Journal of Clinical Oncology, Radiotherapy and Oncology and International Journal of Radiation Oncology Biology and Physics.

Jennifer E. Tseng, MD
__________________________________________________________________

Jennifer E. Tseng, MD Dr. Tseng is the Thoracic and Head & Neck Cancer Specialty Section leader and the associate director for clinical research for Medical Oncology at M. D. Anderson Cancer Center Orlando. She received her medical degree from Duke University School of Medicine in Durham, North Carolina.

She did her residency and served as assistant chief resident in Internal Medicine at Duke University Medical Center. She completed her fellowship in Medical Oncology/Hematology at The University of Texas M. D. Anderson Cancer Center. Dr. Tseng is board certified in Internal Medicine and the specialty of Medical Oncology.

Dr. Tseng has received several awards and honors, which include the C.D. Howe Award for Clinical Excellence in Medical Oncology and a Clinical Research Award from The University of Texas M. D. Anderson Cancer Center; the American Medical Women's Award, Hewlett Packard Award, and the Alpha Omega Alpha Research Symposium Award from Duke University, and a Beneficial-Hodgson scholarship from Johns Hopkins University. In addition to her clinical studies, Dr. Tseng has published research on various topics including molecular alterations in lung cancer, gender differences in lung cancer, and novel agents in the treatment of head and neck cancer.
__________________________________________________________________

Radical Neck Dissection

OK, let me bring you all the way up to date. Tomorrow, December 13, 2006, Dr. Shellenberger will do a Radical Neck Dissection. We are visiting him today to learn specifically what he plans to accomplish.

"A radical neck dissection is an operation used to remove cancerous tissue in the head and neck". "The purpose of radical neck dissection is to remove lymph nodes and other structures in the head and neck that are likely or proven to be malignant. Variations on neck dissections exist depending on the extent of the cancer. A radical neck dissection removes the most tissue. It is done when the cancer has spread widely in the neck. A modified neck dissection removes less tissue, and a selective neck dissection even less". (For more info, surgery details and recovery, see this web site: http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/radical_neck_dissection.jsp )

I have three key areas of risk: 1) having to remove the carotid artery, 2) damage to the vagus nerve, and 3) overdosing radiation treatment. All three are high risk situations and are real concerns to Dr. Shellenberger.

Last week we simulated a complete acclussion to the carotid (cutting blood supply to the brain off completely by inflating a baloon inside the carotid just below the tumor location). The test went very well and I showed no sign of possible stroke. So this concern was greatly reduced this past week. Now we have the nerve damage and radiation issues to deal with. Hopefully, I'll be able to give you an update on these two areas after surgery!

"That's All Folks!"

Well, I did it... updated my blog. I really thought I wouldn't have the time or patience to do it. But I'm glad I have the news posted for those that have been left in the dark. I really do appreciate the interest and support so many friends and family have shown. Thank-you!

Roy

Shands Results

2006-09-03T08:01:00.000-05:00

As planned, I went to Shands and met Dr. Young on Wednesday. He spent a lot of time going over all the details of my case and examined me thoroughly. He recommended I come back on Thursday to allow the doctors on the "tumor board" to examine me as well and see my scans. Dr. Young seemed very positive and said he felt the tumor had not surrounded my carotid artery, meaning it probably would not have to be removed. (This issue of where the tumor is interesting. The doctors can't agree on whether it's encasing the artery or not. Kind of tells you where we are with cancer treatment... without cutting you open, they really don't know so much after spending $1000's of dollars on MRI, CT and PET Scans). He said if it did have to be removed, they could get to the skull base without major complications... so I felt pretty good as I left Wednesday.

On Thursday I went to where the tumor board meets for their weekly conference. There were many cases being evaluated, probably 15 or more. We were all taken to different examining rooms so the doctors could visit with us as their schedule called for. After about 45 minutes, the group of doctors and residents/students started down my hall, which had 7 examining rooms. I was number 6. It seemed like an eternity before they got to me. Prior to coming in, I overheard a group of doctors, including Dr. Werning, the ENT specialist Dr. Bibliowicz referred me to, talking down the hall. He said to the coordinator, "What do I tell number 6, that we can't do anything for him?". "Yes". My heart sunk. They were going to just tell me they couldn't do anything with the tumor? Well when they came in, I let them get to the point, then I started to ask many questions. The bottomline came down to a few basic issues. First, Shands recently has taken a new position on radical neck dissections after tumor treatments. Dr. Mancuso, who is on the tumor board, is also a well known doctor and author worldwide. He wrote a paper and presented it last year on the subject of neck dissections. They are evaluating patients based on CT Scans and the size of the remaining tumor tissue and now reducing the number of neck dissections by more than half. In fact, I believe his paper said more than 70% were unnecessary. His position is that the complications of the neck surgery reduce the survivability of the patient. In other words, it's better to leave the mass in the neck and live with whatever the resulting survivability is in that case. Second, they do not do artery ressections at Shands. They do not remove the carotid artery and replace it with a graft from the leg. They believe the complications far outweight the benefit. Dr. Werning explained some of the complications in detail to me, but I was shell-shocked and don't recall all the details.

So what does all this mean? Good question. Dr. Werning could not and did not tell me his expectations for my survivability. He did say that the cancer would come back if the tumor is not removed but also said the cancer would come back if the tumor was removed. He based that on the fact that the tumor is from recurrence. He acted as though it didn't matter what we did, cancer was going to come back. I asked him about Erbitux and it's impact on the results and what he was saying. He didn't know about Erbitux! Neither did Dr. Young. They said they were on the surgical side not the treatment side. Well to me, that factor makes a big difference, considering that the statistics say the survivability into year five, disease free, is in the 80%+ range versus 40%+ range without it. So I'm disappointed that they were not able to give me a better assessment that included the impact of Erbitux. I left Shands feeling that I'd received a death sentence, just wasn't told when the execution was...

We agreed that going to MD Anderson for another opinion was appropriate, for a number of reasons. That's the next step. I'm also trying to get my doctors to tell me exactly what they believe is going to happen if I do not have the remaining mass removed. Regardless, I'm trying to stay positive while being realistic about the situation. I have already called Dr. Bibliowicz office and will try to get into him this week. I also plan to talk with Dr. Castillo. I'm sure he and Dr. Sombeck, the radiologist will have some interesting feedback. I suspect it may come down to leaving the remaining tumor mass in place and examining it for recurrence frequently. What I'm concerned with is the artery and nerves...I'm have various problems with them now. Am I facing more nerve related problems? Am I high risk for a stroke?

Well, regardless of the medical prognosis, I'm trying to get back to my "normal" life for as long as I can. I went to all three days of the District Convention of Jehovah's Witnesses last weekend in Kissimmee and was able to see my daughter Lydia get baptized as one of Jehovah's Witnesses. I also have been able to return to the weekly Bible Study meetings at the Kingdom Hall. This week was my first official week back at work. I took over my old job of managing the front office and I'm very happy to be able to contribute to the operations again. So I'm not feeling "sick" most of the time now. But I realize my limitations and I'm trying to rest as much as possible.

I'm looking forward to meeting with MD Anderson and will update everyone as soon as I know anything more. Thanks once again for all the encouragement and support.

CANCER FREE

2006-08-22T08:27:00.000-05:00

The results of the tumor and tongue biopsy show no live cancer cells. In fact the doctor joked about the aggressiveness of Dr. Castillo and said that he doubts I have a live cancer cell anywhere in my body. Good news....

So what happens now? Next step is to remove the remaining mass from my neck. There is always a chance that cancer cells are in there and will cause a recurrence of a cancerous tumor. So the standard procedure is remove the mass with surgery. Is this a big deal? Usually it doesn't sound like this type of surgery is too dangerous or difficult. However, I have some unique complications. First, the tumor surrounded the carotid artery, the jugular vein and several significant nerves. Describing what will happen in the surgery, I understand that they will likely remove part of the artery and replace it with a graft from my leg. This also isn't a major complication, according to Dr. Clift, a vascular surgeon we spoke to. However, the tumor appears to be right up against the base of the skull. This does create a complication when trying to re-attach the graft to the artery. More on all this later when we get more information....

My local doctor is recommending me to Shands in Gainesville at the University of Florida. He is not confident that he can perform this surgery and believes I need to be in a more advanced facility like Shands. So as of today we have a referral recommendation from Dr. Bibliowicz, my local ENT doctor, for Shands. Shands has called me and said they have an opening for an appointment next Wednesday to meet with a doctor. This appointment will be a consultation, where he reviews all notes, reports and tests, and he will examine me. If he decides to do so, he will take my case to the tumor board on Thursday. This review board will decide if they will take my case. If so, I'll get a surgery appointment.

More later. Thanks for all the positive support. It does make it easier to go through all this.

Post Pet Scan Update

2006-08-16T10:10:00.000-05:00

Well, a lot has happened since the Pet Scan and the news that the cancer cells in the tumor appear to be dead. After I got the results from Dr. Sombeck, my radiologist, and before going to see Dr. Castillo, my oncologist, I started to feel very dehydrated again. I was throwing up a lot and not being able to keep anything down, water or Ensure. I completely blacked out two different times, falling on the floor completely disoriented. When we went to see Dr. Castillo, we told him what happened and also showed him the lumps on my leg and back. He confirmed that the results of the Pet Scan looked good and that we needed to decide what to do next as far as surgery was concerned. But he said we needed to also find out what was going on with the black outs. So he suggested that I be admitted to the hospital right away. His plan was to do testing to see why I was blacking out and also to request a number of consults with surgeons in the area to determine the next steps.

Hospital Stay

Later that evening, I was admitted to the hospital. They started testing right away. The first thing they needed to do was blood work, but had a very difficult time finding a vein. After 4 attempts, Carlos, the nurse, found blood but then I felt completely dizzy. I was really panicked, not being able to catch my breath. Carlos did his best to get me to focus and breath without panicking, but then I passed completely out. I woke up to smelling salts, which was a first for me. He had to crack two of them open to get me to wake up. After stabilizing, I was sent different places for testing my brain and heart, which included an MRI that lasted an hour, an EKG, a doppler on my leg veins, and a heart related monitor. I was a bit out of it through that night, but remember going and going until mid morning doing tests.

The next goal was to make sure I was completely rehydrated and fed. My weight, which I had been successfully maintaining at about 172, was now 158. They decided to give me a PICC, which they could draw blood from, give me medicine and feed me. But short term they used regular IV and started to give me lots of fluids, which included 2000 calories. My blood count was a problem in the first few days I was there, with my white blood cell count down very low. They had me on visitor restrictions, which I never did read but understood included not being able to have flowers in the room and visitors had to use sanitizer, etc. Not sure why they were so concerned at first. I actually felt fine. Once the fluids started to be given to me, my dizziness mostly stopped. The next day, they finally arranged for the PICC procedure. That was interesting...they set my room up as if it was an operating room. Anyway, it was painless and quick. It certainly was a relief when they came to take blood later.

So during the second and third day in the hospital, the doctor consults started to come in. They were there to evaluate the tests performed and also to give there opinions/suggestions regarding next steps for the treatment of my tumor. I had many doctors and physician assistants come see me. It was great because I could ask any questions I wanted and they were very patient. They covered neurology, cardiology, vascular surgery, and ear, nose and throat specialists/surgery. Regarding the tests and black outs, the general consensus was that they were caused from carotid hypersensitivity and dehydration. When the carotid artery is compressed, it tells the brain to lower the blood pressure. My carotid is already compressed from the tumor and when I turn my head, say to get out of bed and stand up, the carotid is further compressed. This could cause an immediate drop in blood pressure. Combined with dehydration, it would cause the immediate black-out. Seems plausible to me. I've only had mild cases of dizzyness and a feeling that I was going to black out since. I'm being able to tell when it's happening and can sit back down and let it pass before I do pass out. So we are past this issue.

The next thing was the recommendations for next steps in the treatment of my tumor. These recommendations were complicated by a few issues. First, as I've mentioned before, I will only have bloodless surgery. Given the involvement of the carotid artery, this could complicate the surgery. Then there is the issue of who and where the surgery would be done. This issue turned out to be somewhat political and in many ways more difficult to deal with than the blood issue.

First on the blood issue. Jehovah's Witnesses have an arrangement for working very closely with the doctors and hospitals on the issues of bloodless surgeries. They know which doctors and which hospitals are cooperative and are experienced in bloodless surgery. So we contacted the chairman of the committee that deals with the doctors and hospitals in our area. We gave them the names of the doctors we were working with and they were able to give us guidance to make our decision as easy as possible. Very quickly, we knew of several ear, nose and throat (ENT) surgeons and vascular surgeons that would agree to surgery without the use of blood and were very qualified and experienced in these methods. So this issue was not very difficult to deal with.

Then we had to decide on where the surgery would be done and who would partner with who. We had to have an ENT and vascular surgeon. The ENT would be the lead surgeon, so identifying this role was most important. So why would this be difficult? Let me explain...

Dr. Castillo, who is the oncologist, decided to take the lead in organizing the surgery. He certainly didn't have to do this and it's probably outside the scope of his normal role. But Dr. Castillo and I have been through a lot together and have a good relationship. The erbitux treatment was basically a collaboration of patient and doctor, creating a unique relationship through the process. So I followed his lead, as he admitted me to the hospital and started to organize all the doctor consults. I already had an ENT, Dr. Bibliowicz. He did my original biopsies and diagnosed the cancer. But, Dr. Castillo tried to get Dr. Bibliowicz to agree to come see me and eventually do surgery in the Florida Hospital South location. But Dr. Bibliowicz only does surgery in Florida Hospital East, a much smaller hospital and one that most of Dr. Castillo's associates do not recommend. Their argument, which seems valid, is that the South location has more invested in better equipment and that any given time of the day there are 15 to 20 of the best surgeons and doctors in the area in the hospital. At East, they say maybe 2 or 3 are there at any given time. That could make a difference if something went wrong or a doctor needed another opinion. Dr. Bibliowicz wouldn't even see me at the South hospital. He said he hadn't been there in 10 years and wouldn't even know where to park. Digging a little deeper, I found there were some doctor politics involved, which I didn't care to get mixed up in. So, initially, I followed Dr. Castillo's lead and saw another ENT surgeon. This mushroomed into a big deal. There is a protocol among doctors that you want to make sure you operate within. You don't just change doctors... Long story short, after the new ENT recommended I go to Shands in Gainesville for this surgery and Dr. Bibliowicz also recommended the same, I reconciled with Dr. Bibliowicz. He is my ENT doctor again, although he will not be doing the surgery. Problem solved.

Well, I ended up staying in the hospital 8 days before being discharged. The nurses, techs, doctors of Ten Tower were GREAT! They brought my weight back to 171 by the time I was leaving and took great care of me. The reason I stayed so long was partly because Dr. Castillo said it would be easier to transfer to Shands as a patient instead of discharging and readmitting. However, Dr. Bibliowicz said that something new showed up on the MRI that was done earlier in the week and that he recommended a new biopsy of the tongue and a second aspiration/biopsy of the tumor itself be done. (I had an aspiration of the tumor done earlier in the week during my stay and it showed no cancer cells in the tumor. But Dr. Bibliowicz wanted to do it a second time while looking at the tongue). He wanted me to discharge from South and come see him two days later. I did and he reviewed the results of the MRI and showed my his concerns. First, there was "an uptake" on the tongue that had not been there before. He also was concerned about how close the tumor tissue was to the base of the skull. Too close and it would be impossible to deal with the artery properly during surgery. So he asked that I go immediately and get a new CT Scan, which showed bone structures better than MRI. Then we would schedule the outpatient surgery in East for the tongue and tunor biopsy. We took care of all this very quickly.

So these concerns and issues are still outstanding... I saw Dr. Castillo yesterday. He is communicating and coordinating with Dr. Bibliowicz. I'm goiing to see Dr. Bibliowicz this afternoon and should hear the resolution of these outstanding issues. He's already sent info to Shands and identified the two doctors he recommends and Dr. Castillo agrees. So...depending on the outcome this afternoon, I may be on my way to Shands for surgery very quickly.

More later. I will not wait so long this time... promise.

How is Roy Doing?

2006-07-27T19:25:00.000-05:00

This past week has been a real roller coaster of emotion and activity. After last Monday, when I was told my blood count was too low to have my treatment, I went back Tuesday and Wednesday for neupogen shots to boost my white blood cell count. I also started taking diflucan to treat thrush. On Thursday we left for North Florida again to attend Betty's funeral on Friday. We were also able to visit some with my dad, Sarah and Granny in White City. Under the circumstances, I thought it was probably best I hadn't had a chemo treatment or I probably would have felt too bad to take the trip. We returned to Orlando late Saturday. Melinda drove just about the entire trip...I was beat.

That Saturday night, I felt a lump on my leg just above my knee. The skin was red over it and it was sore. Concerned, I started looking on the Internet for information. I thought that the 7 hour trip on Saturday may have caused a blood clot. Based on what I read about the dangers of clots, I decided I better go to the emergency room right away. Well, the emergency room doctor determined that what I had was cellulitis, a bacterial infection of the skin and underlying tissues. This was probably caused by bacteria entering the broken sores from the erbitux rash, which basically had covered most areas of my body. With the compromised immune system, I didn't effectively fight the bacteria. My white blood cell count had come up to 6.6, within the range that is required for me to receive treatments. So the neupogen was working. The doctor gave me an IV antibiotic and also prescribed an oral antibiotic, but warned me that if the infection grew at all, he wanted me to come back and be admitted to the hospital for treatment and observation. I was relieved that it wasn't a blood clot, but I guess the infection was serious also.

Monday I had my appointment for a PET Scan. That whole process went very well. I had an appointment to meet with my radiologist on Thursday so he could give me the results of this scan.

Tuesday I had my appointment for chemo treatment. When they did the blood test, it showed my white blood cell count at 4.4, just below the acceptable range for treatment. It had dropped again since Sunday. I mentioned that I had the cellulitus and they said I needed to see Jan, the nurse practitioner, before they would decide on treatments. Jan looked at the cellulitis and said it looked like we started treating it early and it was looking good. She wanted me to go ahead with the treatment. So I had my chemo and erbitux treatment this week. I also was given a steroid to help the inflammation of the cellulitis and they gave me saline for possible dehydration. So...it was back to normal for treatments.

On Wednesday I went into work in the morning for a short meeting. While there, I discovered another lump on my back, just under my shoulder. This worried me greatly. Was it another lymph node, maybe cancerous? Or was it more cellulitis? Either way, I was worried. I decided to wait until Thursday when I met the doctor to get his opinion. I slept for many hours Wednesday afternoon!

Today, Thursday, I had my appointment with the radiologist for the results of the PET Scan. The verdict is...

PET SCAN RESULTS

Obviously there is still a lump in my throat, I can feel it. So I expected the doctor to give the current size and tell me what he recommended for next steps to shrink the tumor. When he came in the room, he said, 'well as far as the neck tumor, it looks like good news.' The way he said that made me happy and nervous. I immediately mentioned the cellulitis on my leg and that I found another spot on my back the day before. He said he saw the spots on my back in the PET Scan. He wanted me to take my shirt off and take a look. He said that there is an SUV (standard uptake value) for each spot they see. When the SUV is in a certain range, I believe he said above 12, then they believe the mass has the density of a malignant tumor. But the spots on my back had an SUV of 2 or so, indicating that they were just swollen spots, not malignant tumors. Then he said the tumor in my neck was similar now. He suggested that the tumor is mainly swollen dead cells, although it is about 2.8 centimeters (compared to the original 4.2). He said he is confident that there are no other suspicious areas of concern and that we should stop all treatment immediately and schedule another PET Scan for 8 weeks out. So he is going to confer with my oncologist, Dr. Castillo and decide next steps. He scheduled me for a scan on September 5 and a follow visit on Sept 8.

The news is good, although a bit hollow... seems more like art than science. I stop everything now to see how things look in September. If it's still cancerous at that point, I would guess we start up the treatments again. Well... we will see.

I'll provide more info after meeting with Dr. Castillo next week.

The Loss of a Great Friend and Second Mom

2006-07-17T22:33:00.000-05:00

Let me start this update by telling you about my dear friend Betty Gregg and how she's helping me even after her unexpected death this past week. Betty, who considered me one of her sons and a person I cared for greatly, was diagnosed last year with lymphoma. We had been keeping up with each others progress over the past months. Her prognosis was actually good. We all thought she would progress with treatments and live many more years. But suddenly she had a complete failure of the function of her bone marrow, causing a blood condition that rapidly led to her death this past Sunday. Melinda and I were there when she took her last breath. It was very difficult for me to watch. First, she was as close as a blood relative, like a second mom. She cared very much for Melinda and I and always did what she could to take care of us. Second, like me, she had cancer with a very positive prognosis. Knowing that the side effects killed her, not the cancer, was very sobering. I suddenly realized that I better get serious about making arrangements...just in case. You never know what is going to happen. So, for the first time, Melinda and I have seriously discussed what will happen if I were to die from this cancer or the treatment of it. It was actually a relief to talk it. I have Betty to thank, in death, for this help.

Latest Treatment Status

Visiting Betty in the hospital this weekend, which I am so glad I did and have no regrets doing, did have an effect on my blood counts. My white blood cell count came down to 1.8. The acceptable range is 4.1 to 10.9. I also have thrush, a mouth and throat problem caused by a compromised immune system. So I couldn't take the chemo treatment this week. Over the next three days, I'll have neupogen shots, which stimulates white blood cell production. I'm also taking a medication for the thrush. Hopefully I be back to "normal" soon and back to chemo treatments. The plan is to have my next chemo treatment this next Tuesday, the day after my pet scan is scheduled.

Also starting next Tuesday is erbitux again. I talked with the nurse practitioner (Jan) and the doctor (Dr. Castillo) today and discussed going back on erbitux. My opinion, based on all the papers I've read and clinical trial results, is that my survivability is much higher with erbitux than straight chemo. I requested that I be back on it if at all possible. They agreed as long as we monitor the side effects carefully and quickly end the treatment if we get a similar flare up as before. I feel good about the decision.

Understandably, I have a lot of pressure from family and friends to get a second opinion and possibly look for alternative clinics for care. I agreed to pursue a second opinion and see what other options may be available. I discussed this also with Jan and Dr. Castillo. Both were very positive about this and even gave me references and opinions. Jan worked for MD Anderson for 26 years and recommended them. She gave me a local contact number, an office around the corner from where I'm treated today. Dr. Castillo said that I would need to consider where to go for surgery as the priority. He said the best center for this type of surgery in Florida is Shands in Gainesville. He also agreed that the MD Anderson center in Houston was very good. Melinda and I also discussed looking into Moffet in Tampa and the bloodless clinic in Jacksonville. So we've started this process. Melinda contacted MD Anderson and is making arrangements to send the information they requested to get started. (I thank Betty for this progress as well. She made me much more serious about what is going on and not allowing myself to become too passive, just accepting the care I have).

Thanks to everyone who continues to encourage me and the family as we go through this difficult time. So many are persistent in their support and I really appreciate that...even if I don't tell you so personally.

Bye for now...

By the way...

2006-07-05T12:31:00.000-05:00

Did you see my son's comment on my last post?

"Wow dad. Just the way you talk is so cool. Remember that you're the number one living example I look to right now, in terms of how I want to be. So, its nice to see you being so tough, when you have to search so hard for any kind of incentive to be. Cya later."

Makes it all worth while...at least for another week or so! As most of you know, Daniel has spent the last two months down in Ecuador. He is returning home August 5. We are very proud of him and impressed with how he's handled the opportunity so far. It's great to see your children grow up and make good decisions on their own.

It's Summertime... Is this ordeal over yet?

2006-07-05T11:30:00.000-05:00

Well...no, and probably not for a while. But I'm trying to stay optimistic.

The End of Antibody Therapy

Many of you read my comments to my last post regarding my scary bleeding episode. I took the picture to my doctor and when he saw it he immediately decided to stop ALL treatment to allow me to recover before going on. He said he needed a live specimen to work with and this treatment combination was killing me. So he decided that when we start back up, we would only use chemo. The erbitux and herceptin would no longer be given.

So for the past two weeks I've had no antibody treatments. In some ways I've started to feel better, mainly related to nausea and diarrhea. In fact I'm not having to take any medication right now for anything, including the steroids. But...the erbitux and herceptin are obviously still effecting my body. My sores and splits on my fingers and feet have increased over the past two weeks. But I'm being able to manage.

The beginning of Chemo Solo

Doctor Castillo still seems optimistic about treating this cancer and getting rid of it. We started chemo treatments by themselves this Monday (July 3). He believes with the progress made by the radiation and antibody therapy up to this point, the chemo alone will finish it off. I'm not so optimistic. I have a pet scan scheduled for next week (I think...) which will tell us exactly where we are with the tumor, as far as size and location. There is still some concern about how the tumor is restricting the carotid artery and jugular. I suspect the scan will show that the tumor is about half its original size and is still surrounding the artery.

Thanks for all the support!

Although I haven't been posting often or replying to comments frequently, I really do appreciate all the support I've received. So many friends have shown interest from the very beginning until now, tirelessly checking in, asking how I'm doing and leaving encouraging comments. It means a lot. More later...

TIME TO FACE THE BLOG

2006-06-20T23:48:00.000-05:00

As you may have noticed, it's been a little while since I updated the blog. Wonder why? Maybe you think I'm too busy doing other things now, maybe feeling much better with less time... no, but wishful. Maybe I've been sleeping all day everyday and can't get the energy to login... no, I'm not that bad off. Maybe I haven't had any good news lately and just haven't felt like getting online and complaining about my current state of mind and how many new side effects have plagued me... maybe.

Today, when I waited at the third floor window of the Cancer Institute to get called back for my treatments, I saw a man helping a lady in a wheelchair in the parking lot. She was a cancer patient, or she wouldn't be coming in this building, but she appeared to have a great attitude. She had a great smile and was enthusiastically greeting someone near her. And I thought, "Wow. If she can have the quality of life issues and circumstance she has and still have that kind of attitude, how could I allow my situation to get me so down?" Seeing her up closer, as they neared the door, I realized that she had both legs amputated. I'm guessing she still had cancer and all the horrible side effects that go with the territory...

During my 5-hour session today, I also saw how cancer can have a very different effect on a person with a bad outlook on life and a negative attitude. My view of this situation could be wrong, as one person pointed out that I told this to, but the affect was positive for me so I'm holding on to my original opinion. Although I was able to sleep for probably 3 of the 5 hours, I woke up overhearing a man two seats down talking rudely to one of the nurses. I'm starting to know all the nurses in this office, having been there every week for about three months, and I know this nurse is very caring and as helpful as she can be. The man began to complain that he was in miserable shape, hurting basically from head to toe. He said he wasn't told he would have this type of reaction and, after only two treatments wanted to stop. He inventoried his every side effect and demanded that she be able to repeat this to the doctor when she called him and asked why she wasn't writing everything down. She didn't say, but the answer was easy... everybody in the room, probably 25 of us, had the same side effects and MORE. She returned with his charts and kindly mentioned that he was offered counseling and educational sessions on the treatments, and that he didn't attend or refused the appointments. He denied that he had ever been offered information on what the side effects would be. He went on to tell her how bad he felt and said to get the doctor on the phone. He wanted to be given medicine so that he wouldn't hurt and wouldn't have to deal with the side effects. They did agree to give 1mg of some sedative, but then he demanded 2mg. For the sake of us all, I was hoping they would give him enough to go to sleep...for a long time, or at least until I could leave. Another doctor came in and refused...giving an answer that included several medical terms that he couldn't understand and made him be quiet. He would get the 1mg. Later he would tell his friend who showed up that they gave him saline and tried to play mind games with him, making him think they were giving him a sedative. He never did shut up, so he might have been right (but I doubt it). At one point, loud enough for the group of 25 to hear him, "I'm to the point of being suicidal...I've thought about it, I'd rather die than have these side effects". Then unappreciately adding, "Do you want to take responsibility for what happens?" He groaned and moaned for the rest of my stay. I wish I could have been finished sooner and gotten out of there, or that they give him his own room or corner so that he could sulk and complain in his own misery and not negatively effect the lives of similar cancer patients and hard working nurses and doctors who are trying to help. I do not want to be anything like this man. It's sad that he has cancer...but it's even more sad how he's handling it.

So you see why I'm blogging today. I finally have something positive to say... If these experiences had not happened, all I could think to say... or complain about... is how my side effects have gotten worse and I'm starting to get very depressed about it. But maybe today, I turned a new corner. Life could be a lot worse. Besides the woman with half a body, or the patient I mentioned before with an eye lost to cancer, or the ungrateful patient who was so self-absorbed he can't help himself, there are MANY people that are in a worse situation that I am. I have a lot to be thankful for... and to be positive about. Not the least of which are all the caring people in my life who continue to be concerned, even though they have their own concerns and problems that deserve their attention. The comments on this blog and the many messages delivered by members of my family are VERY encouraging and I appreciate it.

Don't worry too much about me. I have both eyes, a whole body still, and not self-absorbed. And my situation is looking very positive, although the temporary side effects make it seem far worse than it actually is. I'm dealing very well with the old side effects, learning how to treat or deal with each one. It was the new side effect of herceptin...diarrhea and vomitting...that has recently caught me off guard. I was just getting use to drinking enough Boost/Ensure/Carnation Instant Breakfast/Shakes (THANKS DAISY FOR THE STEAK AND SHAKE TREAT!) to maintain weight and drink enough water/Gatorade to stay hydrated. The new side effect sent me back to the dehydration issues with a vengence. This problem leads to headaches, general fatigue, low blood pressure, more weight loss, and other bad things. But today, the nurses worked with the doctor and came up with a new regimen to handle the vomitting/nausea and the diarrhea. So...maybe I'll successfully attack this new symptom and be able to deal with life positively again. I hope so, because the guy I had to listen to today was VERY depressing. The thought of complaining like him and making so many others around you feel bad made me determined to stay positive. Yes, I want you to know what I'm dealing with, but I do not want it to come off as complaining.

Sometimes bad examples are very good for us... one of the great benefits of the Bible. I actually appreciate the wisdom and value of documenting bad examples more after today. I think posting today's bad example was a positive thing to do, especially if others learn from it. I know I did.

Roy

We've Only Just Begun

2006-06-01T09:28:00.000-05:00

Well, I've been impatient to hear from my doctors, but I've also been dreading it. My intuition and sense was that the answer wasn't going to be good. Dr. Castillo called early this morning and said he spoke with Dr. Bibliowics. Based on his last examination, Dr. Castillo told him that there was still a significant amount of disease in my neck (the tumor was still present). He said he has not seen the response to radiation and erbitux he had expected. Dr. Bibliowics said that based on where the tumor is located and its size, surgery would be "tremendously difficult". They recommend then a second round of therapy, this time erbitux with chemotherapy not more radiation. So...I'm expecting to hear from the nurse today for the new schedule, but we believe I'll begin next Monday taking erbitux, taxol, carboplatin and herceptin (www.herceptin.com), another antibody therapy that has mainly been used in breast cancer patients but now used for neck cancer as well.

More later... see the other recent post below (from last night) for more on how I'm doing.

Roy

Bitter Sweet End to Radiation

2006-06-01T00:34:00.000-05:00

Yes...radiation is over and that's great! But where does that leave me now? I'm not sure and very frustrated by it. That's one of the reasons I haven't posted this past week. I'm waiting for answers so I can provide some meaningful news. I have three doctors involved and can't get one of them to tell me what's next. The doctor in charge, the ear, throat and neck specialist, or surgical oncologist, is suppose to confer with the others, the medical and radiation oncologists to determine next steps. Well, so far, no word from Doctor Bibliowics, the surgical oncologist. Doctor Castillo, the medical oncologist treating me with erbitux, said he was going to talk with him last week and let me know what the decisions were. He would like to keep me on erbitux until surgery, but hasn't been able to tell me if that was the plan. I missed this weeks treatment of erbitux because of the Monday holiday. No reschedule yet, so I asume I'm going to go through this week without erbitux. Doctor Sombeck was out of the office last week when I had my normal weekly doctors visit with the radiation oncologist. I met with his backup instead, who couldn't tell me herself what was next after radiation. Before the week was over, they gave me an appointment notice for a pet-scan in 8 weeks, nothing else. I'm not certain what that implies. Was he scheduling me for a pet-scan for after the surgery or before? In the midst of the temporary confusion, I'm also feeling my neck and wondering why I still feel a tumor... Not one of these doctors has said the tumor has shrunk the way they expected and that I'm ready for surgery. So, needless to say, I'm frustrated by the whole ordeal this week.

Otherwise, I am feeling better day-by-day. Each day after the last radiation treatment seems to show improvement. I'm being able to drink a lot easier, but still have not been able to eat solid food. At some point, the issue isn't going to be swallowing, it's going to be a matter of taste and appetite. I've tried to eat some small bites of food this week and just haven't been able to do it. However, I am able to drink more than 2 quarts of Gatorade everyday, more water and at least 4 or 5 Ensures/Boost. That means I'm getting the calories and protein I need daily to maintain my weight. I probably did lose another couple of pounds coming into this week, but I should be able to maintain going forward and not be brought down by dehydration the way I was. --- Like I said, the status is bitter sweet. I'm looking forward to hearing from the doctors.

One clear lesson I'm learning and can pass on... quality healthcare doesn't happen automatically. The patient has to be involved for the best care possible. That means self-education, speaking up with questions, concerns and suggestions, coordinationing the views and activities of the various doctors and nurses involved, and taking an active role in determining treatment options and deciding on quality-of-life issues.

I promise to update again as soon as I know what the plan is... Until then, thanks again to everyone for checking in and providing positive, helpful and encouraging comments. (I hope I haven't upset or disappointed anyone by not responding directly to some of the messages. I try, but I don't always have the words to say and the opportunity slips away. One of my great weaknesses...)

Roy

End of Week 7

2006-05-20T07:10:00.000-05:00

One more week to go!... I hope. Since my last post, the big areas of focus have been hydration and weight control. I've been successful in keeping myself hydrated, although I did have to go in a few times for a saline IV boost. Weight control has been an ongoing issue. I dropped another few pounds, just not being able to consistently drink enough Boost/Ensure daily to maintain my weight. Honestly, I'm not overly concerned about it though, knowing I was overweight to start with and still have some fat to give (probably not much more though).

Food Cravings

While sitting in waiting rooms or even in the office where the chemo treatments are given, a common topic of conversation of many cancer patients is food. I was speaking this week to the patient I mentioned before who is also on erbitux and lost an eye to her last tumor. She said she dreamed of eating fried chicken the other night. Apparently, others in the waiting area could relate to this. Like myself and others there, she craves certain foods while others cause terrible nausea to think about. (She also has lost a lot of weight, over 55lbs. She had to be seriously overweight to start with though, because she is still large.) We agreed on a few things we craved in common...like the hot dogs at Home Depot! We also discovered that one food we could still eat in common during our treatments and still tasted good all the way down was a Wendy's Frosty. Isn't that strange?

Needless to say, I'm looking forward to getting my taste for food back (and ability to eat). There are a number of things I can't wait to eat (and cook) again... The reason I mention this has to do with weight loss. I'm very glad that a side effect of the cancer was weight loss. Losing weight hasn't been easier. It's not like I'm having to work on self-control and force myself to stop eating so I can lose weight. I can't eat, so I lose weight. So at the end of this ordeal, I will be down in the 170s I suspect, close to my ideal weight. But will I be able to stay there? Could I satisfy the cravings I have now and not put the weight right back on? I'm a little worried about that...except for a newly discovered side effect.

Trismus (Lockjaw)

Sean O'Neil (DuPont cancer patient) sent me a note the other day on another thing to watch for. He said, "One additional word of wisdom (ie painful experience) would be to remind you to exercise your jaw during radiation. What I later learned the hard way is that it is very common to suffer from muscle atrophy during radiation - particularly if you are not eating much. The jaw muscles tighten & the end result is that you can no longer open your mouth up wide (which makes it difficult to later eat or yell when you feel better). The medical condition is called trismus (which may not be spelled correctly). The normal or average person can open up their mouth about 3 fingers high - (hand turned at 90 deg angle & inserted into the mouth) . . . by the end of my treatment - I was down to 1-1.5." (For those that want to know more about trismus and its relationship to radiation treatment in neck cancer patients, see the following site: http://www.oralcancerfoundation.org/dental/trismus.htm)

Well, as it figures, I'm having this problem, just not sure how bad yet. I don't eat or talk a lot, so the jaw is very stationary. I assume the effect, if it doesn't progress to something severe, will be a temporary situation I'll have to deal with after the treatments. For how long? No clue. But it does give me the idea that even when I get my taste back and I'm ready to eat Chelsea's famous baby back ribs...I might not be able to.

So even though I have huge cravings and could name the 25 things I can't wait to eat again, I suspect I will be slowed down for a while. A number of things will no doubt work in my favor: habit of not eating, slow healing of the throat, gradual recover from the mucosous problems, and lockjaw.

Last Words

Another side effect of the erbitux which I find very interesting is the dried skin problems. The two common effected areas are the hands and feet. On the hands, I have cracked cuticles (skin where the fingernail meets the cuticle). I've had this on the thumb, index and middle fingers on both hands. The sores are completely symmetrical, whatever sores on the left hand are on the right. Same with the feet. The skin on my heels is drying and cracking, exactly the same way on both feet, making it a little painful to walk. The symmetry aspect only intrigues me because the antibody they are treating me with is cloned... I'm still not completely comfortable being a guinea pig.

Thanks for your comments and encouragement. Everyone has been very supportive. Some of you I haven't seen in a while and really look forward to being with you again shortly.

Roy

Update - IMRT Treatments

2006-05-11T20:12:00.000-05:00

Dante's in South America!

Before I go into what's happening with me specifically, I thought I would tell everyone that Daniel flew out this morning for his visit to Ecuador and Peru this morning. He will be down there for the next 3 months, primarily participating in Bible teaching work with other Jehovah's Witnesses he's staying with. I'm very proud of him and glad he took the opportunity to go. We got a call from him late this afternoon, so we know he got there OK and he seems just fine.

IMRT Radiation Begins

As I mentioned, I would be starting the new IMRT treatments today, the more intense radiation therapy. The transition from one machine to the other made me nervous for several reasons, the first being the increased dosage. But what really concerned me was what appeared to be uncertainty about measurements and positioning when I moved to the new machine. As I was laying on the table with my mask snapped to the table making it almost impossible to say anything intelligible, I listened to the new team discussing the measurements and what they should be. At one point they said I was going to need to go to the other machine and have the old settings marked on my neck, then back to the new machine. After a while, they decided not to do this. Instead, they went and got Stephanie, one of the radiation technicians on the old machine, to help them figure out what the settings should be. Eventually, they said, "Here we go.", indicating that they were leaving the room and the treatments would begin. I wasn't at all convinced that they were confident in the setup and ready to actually begin treatments. On the old machine, I would have 3 or 4 blasts of the radiation treatment. But on the new machine, I had probably 10 or more. The whole time I thinking, "I hope the radiation is hitting the right spot!"

Afterwards, I knew the effects were going to be more intense than before. I could already feel my throat burning before I even left the office. I decided that I better go upstairs and speak with Doctor Castillo and see if the IV hydration should be done, especially considering that drinking/eating would probably be more difficult with treatments from the new machine. When he saw me from a distance, he gave me a thumbs up and a thumbs down sign, asking how I felt. I gave him a thumbs down. He said, "Come on back. I thought I would be seeing you today." He had Marty set me up for the IV fluids and morphine. He also introduced me to another Erbitux patient, and said that we were going through the same things. But after seeing that she had one of her eyes surgically remove because of a previous cancerous tumor, I didn't feel that our experience was similar at all, except that she is taking the same antibody and radiation treatments I am. It was scarey talking to her, because I started to realize just how bad things could be, depending on where the tumor sits. I'm very thankful that I'm currently not at risk of losing an eye or ear from this.

So after the new radiation treatments, the IV fluids and morphine, how am I feeling? Not so great. This week I had made a very strong effort to eat and drink as much as possible. On Monday I took in about 2000 calories, which is good because I could maintain my weight at that amount. Tuesday I took in 1800 and Wednesday about 1300. Do you see the progression? We're going down... Today I've had about 200. The mucous and associated nausea have been overwhelming today. Even the baking soda/salt solution is doing very little to break it up. Trying to eat and drink cause mucous to go further down my throat causing an immediate dry-heave reaction, which causes me to hurt my throat even more. What do I do? Well the plan right now is to do what I can through tomorrow...focus on the weekend, when I'm not taking radiation treatments and start to recover some from the side effects. I'll try to drink and eat as much as possible and hopefully stay close to 187lbs by Monday's doctors visits. I'm scheduled for more IV fluids on Monday, so I'm not overly concerned about dehydration. It's weight loss that I'm focusing on right now...maintain or get the feeding tube.

By the way, many have asked Melinda or I what they could do for us/me during this difficult time. Well, honestly, there's not much you can do physically. Can't eat or drink...and I'm still gainfully employed, being able to take care of our needs. What has been very encouraging, emotionally and spiritually, are the comments on this blog. I really have enjoyed taking the time (and being destracted) writing about my experience. There's a lot of satisfaction in knowing others have shown interest and read the blog from time to time, leaving positive comments. I've really enjoyed reading the comments and responding when I can. I will also try to talk to those that call me, but so often I just can't talk for more than a few minutes before the mouth situation makes it very difficult. So short conversations are usually fine and I'm happy to take your calls when I'm feeling up to it. Otherwise, please leave a comment on the blog. I read them all and I usually respond. Thanks!

Erbitux - Week 6 (of 8)

2006-05-09T01:59:00.000-05:00

OK. We start week 6 and have a total of 3 weeks to go. When I saw Doctor Castillo today, he said he hoped I was ready, "the next few weeks are going to be hell". Oh boy. It gets worse? He said the new radiation machine I'll be on this week is very intense and will have strong side effects. That's the IMRT machine I mentioned before. New technology, is more accurately directed at the tumor and kills less good cells. That's why they crank up the dosage. We'll see how it goes. I believe I'm doing setup only tomorrow on this machine, then start actual IMRT treatments on Thursday.

When I saw Doctor Sombeck, he asked how I was doing. I said, "Good", and immediately he said, "Liar!". We both laughed. At 187lbs, I've lost 30 pounds now. (I have more fat to give though...but both doctors said I can't keep losing this fast. For those that have asked, my ideal weight according to several calculators I've looked at, is about 173 at the higher end. That seems low to me, but based on what I'm still carying at 187, maybe they are right). My blood pressure went from 140 over 80 last week to 115 over 68 today. Indications are, I'm getting to the point of dehydration. Both doctors warned me that I must eat and drink, or I'll have to go on the feeding tube. Don't want that so I promised to try as hard as I could to maintain this week. I explained to Doctor Sombeck how the mucous was causing me to gag constantly and couldn't get food down with it. He told me to rinse and even drink water with salt and baking soda. He said it would greatly thin the mucous out, break it up and allow me to clear it so that I could eat. Well why didn't he tell me about this two weeks ago, I thought! I tried it when I went home and it worked wonders. I was able to eat a little bit of solid food today after drinking this soda/salt water. Doctor Castillo offered to have me come in on Tuesday or Wednesday and allow them to give me a liter or so of fluid through IV to rehydrate myself, giving me a jumpstart this week. I may do that, even I can drink more now.

The Erbitux rash has greatly improved (hopefully as a result of hydrogen peroxide, steroids, and topical antibiotics, not that my body is resisting the Erbitux). I decided to shave while it wasn't flared up. As you can see, I still have a rash, a few burned marks from the raditation and a tumor that still shows on the left side. I'm looking forward to seeing how fast the tumor shrinks with the IMRT...we only have 3 weeks left...or so they've said.

End of Week 5

2006-05-08T04:51:00.000-05:00

Thanks everyone for your comments. I appreciate the encouragement and time you take to see how I'm doing. So how am I doing? That's a good question. It is very interesting to me to see the mix of expectations people have about how a cancer patient should feel. There are so many factors involved and I guess people develop different opinions about how cancer victims are going to feel based on their understanding of the factors. I guess the behavior of the patient and maybe even the caregiver influences that view also. For example, I know of several different cases of patients with Hodgkin's Disease. In one case, the disease was viewed by the patient and caregivers as a grave, dire situation and the patient was was treated as very sickly and weak, in my opinion effecting the prognosis and quality of life short and long-term for the patient. In another famous case, Mario Lemieux, a star hockey player, was diagnosed with Hodgkin's Disease and left his team for six weeks of cancer treatment and returned to finish the season. The last day of his radiation treatments, he flew out and played hockey that night, scoring! He was sick with cancer, and probably had many familiar side effects of the radiation treatments, but did not allow it to make him sickly.

Factors Involved

I want everyone to have the right view of how I'm doing. First of all, the key factor is the cancer itself. As many of you know, tumors don't always cause pain. In fact, the doctors tell me that my tumor itself should not be painful. However, other factors about the tumor that will potentially cause pain or discomfort are: where is the tumor, how large is it and is it pressing on nerves or organs causing other problems? When my tumor is pressed, I do feel pain, but that is because of the location of the tumor. When it was larger, it caused me to have, at different times, earaches, headaches, toothaches, sore throat, and shortness of breath. This was all caused by the pressure of the tumor on nerves and on the carotid artery and jugular vein. As the tumor is shrinking with treatment, all these symtoms are going away. For the past few weeks, I've only had minor problems with these symptoms.

Probably the major factors involved that effect how sick a cancer patient is going to be, are the treatment given and the patient's ability to deal with it. Age, health, stress and pain tolerance all play a major part. As you know, my treatment includes radiation therapy and the Erbitux antibody therapy. Each have documented side effects. Then there are the side effects of the side effects to consider. That may sound funny, but this is the biggest problem for me. The radiation is burning my throat and causing me to have great difficulty swallowing anything, including water. It also causes food to taste terrible. My salivory glands have stopped working properly, causing dry-mouth. This creates a situation where your mouth secretes a stringy mucous but can't easily be swallowed. In fact, if I try, my body reacts by throwing up. So I'm constantly having to clear my mouth every hour or so at night, less frequently during the day if I'm not talking, and every few minutes if I'm trying to talk. On top of this, radiation also causes fatigue. I want and need to rest, but I'm constantly having to clear my throat. The Erbitux is causing me to have painful sores in my mouth, adding to the difficulty of drinking or eating. It also has causes an itchy, often painful rash on my face, head and chest.

So how am I doing? Based on a better understanding of the factors... I'm not being able to drink and consume the nutrition I need to feel good. With a lot of effort, I'm drinking enough water to stay hydrated. I'm not able to eat anything solid and haven't eaten during the past two weeks. I'm also not being able to drink the 5+ Boosts a day, required to maintain my weight. So I'm still losing weight very quickly. Although I'm becoming more and more fatigued, I'm having a difficult time getting enough rest. To sum it up...I'm tired and hungry.

This week we are going to a different radiation machine...more later on this. I'm hopeful that I may see a difference in my throat, maybe allowing me to get more down and start feeling better...or at least stabilize.

Weekend in Ocala

I did get some rest this weekend. I spent the time at my mother's house in Ocala. She lives in the country and it's very quiet and peaceful there. Although I did spend some time playing with my two nephews, Alex and Tony, I was able to get some needed rest. I also visitied with my two sisters, Jeannine and Christine, and two of my cousins, Chelsea and Stephanie. It was a good visit. I may do this again!

Erbitux - Week 5 (of 8)

2006-05-02T22:54:00.000-05:00

So this is week 5, more than half way there. It's my 4th week of radiation and I'm really starting to feel the effects of this treatment. I read another account of a man with squamous cell carcinoma and his radiation experience and found many similarities in our cases. He had problems with allergies among other things which I do not, but his description of the radiation effects are very similar to mine. He said he felt like there was a golf ball in his throat much later in the process than when I felt like that. If you want a more detailed idea of what someone with this cancer and treatment goes through, you might want to read his journal (http://www.ampuku.com/Frames/atestimonial6.htm). He also has a few good pictures (one included here) of the radiation equipment and the mask they use to hold your head down to the table when being treated. A few other differences... I have the new machine. I do not have to leave the markings on my neck every day. I also can hold my shoulders down far enough to where I do not have to use a strap as he describes. One thing I can relate to is the tiredness. I thought maybe I was tired from the steroids or other medications, but the more I read, the more I believe it must be the radiation treatments. I'm also having to take frequent naps.

I'm certain I'm losing more weight this week. I'm still not able to eat any solid food. I'm strictly on Boost/Equate and water. I do not believe I'm taking in more than 2000 calories a day, which is probably going to result in losing a few more pounds this week. I'm going to try to take only the high calorie drinks so I can better maintain my weight.

End of Week 4

2006-05-01T08:27:00.000-05:00

Four more weeks to go... I'm half way there. As I shared in the last post, this was a stressful week. Besides Nadia getting really sick and in the hospital, I also took a strange turn for the worse and ended up losing 8lbs altogether. When they weighed me this morning I was 194, from 202 last Monday. But, there's a silver lining to this past week. Nadia is doing much better now and so is our relationship. Somehow, I think we bonded more this past week and became a little closer. Maybe she's realizing how dependent she still is on her parents and that it's not a bad thing. We love her and are very glad she's getting better. Also, as Doctor Sombeck said this morning, "We won't go another week without steroids again". It's good to know what's working and what's not. Hopefully I'll be able to keep eating (drinking) this week and maintain my weight.

The week ended with something very unexpected. A lot of our friends get together on Sunday afternoons to play soccer at a local neighborhood. The younger kids usually swim and play while the older ones play soccer. Besides our friends, it's also a pick-up game including some very good players from around the community. Well, I decided to take the girls this week and watch the soccer game while the girls swam with their friends. After watching for about 5 minutes, I couldn't stand it any more and decided to play. At first I had some difficulty drinking water, but it became easier and easier as the game went on. I mostly played defense, mostly stationary, trying not to over do it. But eventually I moved up to mid-field and actually scored a goal! After three hours of playing I felt great!!! Doctor Sombeck told me this morning that it was fine and to keep it up as long as I could, just make sure I drink as much as possible. So...I'll probably play again next week.

Happy Girl Wasn't So Happy in Week 4

2006-04-30T09:02:00.000-05:00

Nadia in the Hospital

By Friday afternoon, and after the visit from her friends Libby, Dan (the Muffin Man), Kelly, Eric, and her brother Daniel, Nadia was starting to feel a lot better (Picture). Earlier in the week she was diagnosed with strep infection and put on antibiotics. But after a few days, she wasn't responding and getting worse, not being able to eat or drink much and having a hard time just breathing. So, her mom and I took her to the Florida Hospital East emergency room Wednesday night. After almost 4 hours of waiting and Nadia being very uncomfortable there, we decided to return home and go to Florida Hospital South the next morning, which we did. After giving her a check-up, the doctor said she was dehydrated and not responding to the antibiotics. So immediately he ordered a CT Scan and other tests to see what was going on. Besides hydrating her through the IV, they also gave her morphine for pain, additional antibiotics, and steroids to help with the swelling. They admitted her Thursday night and she was in a regular hospital bed by midnight. Melinda and I stayed with her overnight at the hospital on Thursday night, while Lydia and Daniel took care of the house and kids. Although she was improving Friday, she still wasn't being able to eat, so the doctor said he wanted her to stay over another night. Melinda stayed with her and I went home with the other kids. She was finally eating and doing much better Saturday, although still sick with strep. She was released from the hospital in the morning and we brought her home to fully recover. Now if she just sticks to the medications and gets enough rest...she will be a happy girl again soon.

Besides the visits from her friends, she also received a number of cards from other friends and her sisters were able to visit late Friday. All this made Nadia feel much better. Now she's recovering at home and making good progress.

Odd Parallel

By Tuesday evening, I wasn't able to swallow anything. Every swallow was like I was trying to swallow a golf ball. On Wednesday morning I drank a Boost, but it was very difficult and painful. After that Boost, I couldn't eat or drink anything, very similar to what Nadia was going through with strep throat. I asked the nurse that morning after radiation therapy if she could check to see if I might also have strep. She looked and said my throat situation was an accumulation of the radiation treatments and that she expected it to be getting to this point about now. She said I could see my primary physician to make sure. Thursday I was able to arrange with Doctor Cruz (Bert) to be tested for strep. It was negative, twice. So I didn't have strep. But why did I go from being able to eat some soft foods and drink to not being able to do either? Something changed. Be Friday morning, after two days of no drink or food, I was starting to get very concerned. I insisted on seeing one of my doctors, either Sombeck or Castillo (both conveniently at the Florida Hospital South where we were staying with Nadia). I was able to see Doctor Sombeck. After discussing what had happened and what changed with the treatments this week, he said it was more than likely the decision to not be on steroids this week. I received a large dose of steroid on Monday with the Erbitux, but by Wednesday morning, that was no longer effective. My throat was probably restricted from the tumor swelling and the throat itself was swelling from the radiation treatments. So Doctor Sombeck prescribed the normal steroid pack that I take during the week after treatment and a narcotic elixir that I could take and get immediate relief on the throat. I had them filled at the hospital and took them back to Nadia's room. After taking both, I was eventually able to start drinking water again, slowly hydrating myself again. On Saturday, I was able to take the meds, then drink 2 Boosts and water. It causes me to sleep for a while, but at least I have a way of staying hydrated and fed without a feeding tube.

I'm learning a lesson in all this... you have to work with the doctors to get quality health care. They'll make decisions for care without any input from you if that's what you want. But if you get involved and talk to the doctor about how you feel and ask about the options you have, the treatment is a lot better. If I didn't insist on seeing and discussing my situation this week, I suppose I would have ended up being admitted to the hospital for rehydration and giving me a feeding tube. I believe I've avoided that for now...

For those that haven't seen me in a while, I'm adding a picture of Talia and I in Nadia's hospital room this week. As you can see, I still have a hive-type rash and a growing beard. The acne isn't nearly as bad this week, but maybe you can see that it goes down onto my neck and chest as well. A temporary inconvenience...

Erbitux - Week 4

2006-04-24T22:28:00.000-05:00

I went in for radiation this morning and the Erbitux IV drip this afternoon. Everything went well. My weight actually stayed the same as last week, 202. But it took everything I could to put down the food/drinks... I doubt I will weigh the same next week. Doctor Sombeck said I needed to start on the mouthwash now after examining my mouth (w/ Lanocain to numb my mouth and an antacid, I guess to keep the acid from coming up and burning my throat even more). I have a number of sores in my mouth and a constant burn in the back of my throat from the radiation. He said I could just take Boost if I can't get anything else down. I'd need at least 5 a day to be "O.K.". Given the number of calories, I'm guessing he would expect me to lose weight still with only drinking 5 Boosts.

Doctor Castillo came by to see me as I had my Erbitux drip. He clarified what the agenda was going to be. He said he will continue the weekly Erbitux for the duration of the radiation treatments, then will "play it by ear", telling the nurse that they are experimenting and will decide as they evaluate my progress. So I'm just starting the 3rd week of radiation and have a total of 7 weeks of treatments. So that takes me through to May 27. After that, if all is well, I'll recover for several weeks, with surgery probably at the end of June.

Generally, I'm doing OK today. Frustrated about not being able to eat and distracted by the sores in my mouth, but otherwise feeling good. I do not have headaches and other pains that use to keep me awake at night. My rash is still manageable, and I'm very happy about that. The doctor did decide to not have me on steroids this week, after giving me a "massive dose" during the Erbitux drip today. He believes that should take care of the initial swelling concerns after the drip. He said if there is any swelling or the rash gets out of control, call the office and they will prescribe the steroids. He said he was still concerned about TIAs (mini strokes) until the size goes down further. So, I'll be watching for any swelling and headaches that could indicate a potential problem.

Thanks for keeping up and your encouraging comments.

End of Week 3

2006-04-23T07:30:00.000-05:00

Well, I've come to the end of week of 3 of the Erbitux injections. It's actually the end of week 2 for radiation treatments, the area I'm having more affects from now. I'll have 35 radiation treatments total, 5 a week for 7 weeks. So I have 5 weeks of radiation left and at least 2 weeks of Erbitux left. I'm going to ask the doctors what the specific schedule will be tomorrow.

What I'm Thankful For

I don't have bad headaches everyday.
I'm being able to sleep at night.
My face and scalp aren't bleeding and painful all the time now, even though the rash is still there.
I don't feel alone with this problem and experience.
My friends, family and congregation are all concerned, supportive and encouragng.
Everyone at my job is supportive and patient and I'm being able to do alternative but valuable work while sidelined with my therapy.
My doctors, nurses, therapists, receptionists are all very helpful and pleasant.

How Am I Now?

The rash is more manageable now. I'm using a topical antibody that seems to keep it from getting really bad, especially the acne part of it. The rash is still there, making it difficult to shave. In fact, I'm not shaving anywhere except the lower neck where the radiologists need to be able to draw lines on my neck every morning. If it improves more, I may go ahead and try to shave. I'd be more comfortable without a beard than with it...

The current problems are associated with radiation. I'm very concerned, after talking to Sean, about losing too much weight through this treatment. I've tried my best this week to eat everything I could to try to hold at 202lbs. I suspect I may have been succesful, even gaining some back. However, it was very difficult, and it's only week 2 of radiation. The burning in my throat is painful and causes most food to taste terrible going down. The doctor had said I would not feel like eating at a certain point. Well, I'm already there. Besides the throat, I also have sores in my mouth and my tongue is increasingly numb all over, making it very difficult to eat solid foods. So this week, I've had many Carnation instant breakfasts and several milkshakes, which still tastes good. And there is a handful of other foods that still taste OK. Starting tomorrow, I'm going to try the "miracle mouthwash" the doctor prescribed and see if I can tolerate more foods.

For everyone reading my blog and commenting, thank-you. I appreciate it. I hope it is informative, telling you what you want to know about how I am and providing some meaningful details about this disease and treatment. I don't mean for it to burden or depress anyone. I'm positive about the experience as a whole and hope you are also.

Amazing Difference A Day Makes!

2006-04-18T16:13:00.000-05:00

As much as I complained about it yesterday, I thought I should tell you that the rash has substantially improved overnight. This morning my nose was almost completely clear. I suppose this is related to taking steroids yesterday morning with the Erbitux. So I'm certainly going to pick up the steroid prescription for this week, even though there are side-effects to this also. Doctor Castillo said he wants me to take the steroids and an aspirin a day to reduce the risk of TIA (minor stroke related to the restriction of the carotid artery.

I talked to Sean O'Neil some today (from DuPont that went through similar treatment this past year) and he told me that a topical antibody helped him with the rash. I called the nurse and had her prescribe this as well. Maybe I can control this side effect a little better going forward. We will see...and hope... Otherwise, I feeling much better all around today. I forced myself to eat after the radiation treatment, although it was a bit difficult. Sean said that he had a lot of problems going into week three with the radiation, so he said to eat all I can now. I'm trying. Sean lost 40lbs during his treatment! Oh my. He said the first 15 to 20 was OK, he could handle it. The rest was muscle mass and was not good for him. So he's encouraging me to eat as much as possible now, taking in calories and lots of protein. I'm glad to have him available for advice and coaching. (Thanks Sean!)

My Beliefs

2006-04-17T18:58:00.000-05:00

This blog was created as a method of keeping my family, friends, relatives, workmates and other interested persons updated on my progress with squamous cell carcinoma of the neck and it's treatment with the new drug Erbitux. As you'll notice by comments left, there are a wide variety of people reading and commenting, with many different backgrounds and religious beliefs. While this blog was not created as a medium for sharing my personal beliefs, it does seem appropriate that I share some specifics about beliefs that affect my attitude during recovery and will have a major affect on the treatment I'll accept and will not accept. Specifically I want to address two areas briefly in this post, my hope for the future and my view of blood and the medical treatments related to it.

Jehovah's Witnesses

For those of you that don't know, I'm one of Jehovah's Witnesses. In fact, my wife and I were both raised as JW's from birth. All five of our children call themselves JW's. Our parents are JW's but not all our siblings. We do have other family members, cousins, Aunts and Uncles who are JW's as well. Our "extended family" is quite large, "brothers and sisters" from many congregations of Jehovah's Witnesses that we've attended over the years as we've moved around. As you read comments from some of these ones, you'll see references to some of our common beliefs, such as our hope for the future. I felt it appropriate and meaningful for everyone to understand the basics of these beliefs.

The following information can be found in the www.jw-media.com and www.watchtower.org websites.

Resurrection and Everlasting Life

Specifically look at the following reference for further information on this topic http://www.watchtower.org/library/pr/index.htm?article=article_08.htm.

We firmly believe that there is life after death through the resurrection hope. The difference is...we believe that the resurrection is to life on the physical earth for the majority of mankind.

"There is going to be a resurrection of both the righteous and the unrighteous."—Acts 24:15.
"The hour is coming in which all those in the memorial tombs [God's memory] will hear his voice and come out."—John 5:28, 29.
"The sea gave up those dead in it, and death and Hades [the grave] gave up those dead in them."—Revelation 20:13.

Life would then be perfect and everlasting.

"At that time the eyes of the blind ones will be opened, and the very ears of the deaf ones will be unstopped. At that time the lame one will climb up just as a stag does, and the tongue of the speechless one will cry out in gladness."—Isaiah 35:5, 6.
"[God] will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore."—Revelation 21:4.
"No resident will say: 'I am sick.'"—Isaiah 33:24.
"Let his flesh become fresher than in youth; let him return to the days of his youthful vigor."—Job 33:25.
"The gift God gives is everlasting life by Christ Jesus our Lord."—Romans 6:23.
"Everyone exercising faith in him [will] . . . have everlasting life."—John 3:16.

Having this hope certainly affects a person's attitude during treatment and recovery. It provides a sure hope regardless of the immediate outcome. I certainly want to live beyond this bout with cancer, but if I don't, I have a very positive attitude related to my hope for a better future.

Medical Treatment Involving Blood Transfusions

Another area that will have a potential impact on my recovery is my belief in the sanctity of blood. As one reference says:

"Jehovah's Witnesses accept medical and surgical treatment. In fact, scores of them are physicians, even surgeons. But Witnesses are deeply religious people who believe that blood transfusion is forbidden for them by Biblical passages such as: "Only flesh with its soul—its blood—you must not eat" (Genesis 9:3-4); "[You must] pour its blood out and cover it with dust" (Leviticus 17:13-14); and "Abstain from . . . fornication and from what is strangled and from blood" (Acts 15:19-21).

While these verses are not stated in medical terms, Witnesses view them as ruling out transfusion of whole blood, packed RBCs, and plasma, as well as WBC and platelet administration. However, Witnesses' religious understanding does not absolutely prohibit the use of components such as albumin, immune globulins, and hemophiliac preparations; each Witness must decide individually if he can accept these."

Here are some further references for those that want to know more:

http://www.watchtower.org/library/hb/index.htm?article=article_06.htm
http://www.watchtower.org/medical_care_and_blood.htm
http://www.watchtower.org/library/vcae/article_01.htm (videos)

The bottomline is this: I'll accept any treatment that will save my life so long as that treatment doesn't go against God's laws, particulary related to the use and sanctity of blood.

Hopefully these explanations of my beliefs will help you at least understand some of the comments being left and feel better about my state of mind and long-term wellbeing.

Erbitux - Week 3

2006-04-17T18:30:00.000-05:00

I received my third dose of Erbitux today. Doctor Castillo did come by and take a look at my rash prior to the treatment. He didn't look so positive. I asked him if the others taking Erbitux in this facility are having similar responses and he shook his head slowly acknowledging that they were, but it was obvious as he touched my face and asked if I was in pain that he was concerned. I told him it did burn, but it was better than late last week. I also told him I did not take steroids last week. Immediately he said I probably should take them this week, saying it may help with the rash. So I agreed. Then I quickly said as he started to walk over to another patient, "I do not want to stop taking Erbitux". He looked back and smiled, "Don't worry". For now I'm still in the program.

I had radiation treatment this morning and a meeting with Doctor Sombeck. He was sympathetic to the rash problem, but knew it was up to Doctor Castillo to deal with this side-effect. He did talk to me about the more frequent burning in the back of my throat, nausea and my tongue swelling, which are effects from his radiation treatments. He prescribed "Miracle Mouthwash" to make it easier to eat. I told I didn't think I needed it for a while and he agreed I should wait as long as I could considering that it alters the taste of food. As long as I focused on foods that don't make me nauseous thinking about them, I told him I eat as much of that food as I can. He said that was exactly the pattern I need to keep. But, even doing that right now, I'm losing weight pretty fast. I was overweight when I started with this diagnosis in March, at 217. Today I weighed in at 202. As I mentioned before, the doctor expects me to lose 20 pounds, but that was when I had already dropped to 208. So he expects that I'll get down to 190 or so. I'm starting to hope now that I don't lose more than that...considering how fast I'm losing and I'm actually eating what I can.

Well I'm happy that I'm staying with the planned Erbitux treatments. As far as my body is concerned, I felt more sluggish and sick this week after the treatments. I slept a lot this afternoon to try to get over it. I do feel better now. Trying to stay positive...

End of Week 2

2006-04-16T18:12:00.000-05:00

I do not have the reader hooked up to my computer right now to download photos from my digital camera. Otherwise, I would post a shocking picture of my face. The info I have said Eribtux would have an acne-type rash as a side-effect. That's an understatement. What I have is more like leprosy. It's also not only on my face, but also in my hair and now going down onto my chest. It is physically uncomfortable and also very embarrassing to be seen in public. I'm afraid this side-effect is also creating a bit of depression as well. But there is a ray of hope... I read last night that the doctor may prescribe steroids for this rash/hive problem. Well, I'm actually suppose to be on steroids, but for the second week in a row, the nurse has forgotten to give me the perscription when I leave their office. Last week she called in the prescription and I started a few days late on the steroids. I had the rash last week, but nothing like this week. Because of our schedule and the nurse not calling in the prescription until after midweek, I decided not to take the steroids at all. I assumed they were prescribed for swelling issues, which didn't seem like a problem this week. It is possible that the rash wouldn't be so bad if I were on the steroids. So...I plan to take them this coming week. My biggest fear now is that the doctor will decide to take me off Erbitux after he sees this rash. We will see...

The Will Rogers Phenomenon

2006-04-12T22:04:00.000-05:00

I have some really good doctors and therapists. They all try really hard to help me understand my cancer and the treatmnent. Of the many questions I've had so far, the one that's been most elusive is, "What are my chances of survival?" This is not an easy question to ask and apparently not an easy one to answer.

I haven't been overly concerned about survival. In fact, I've accepted the fact that my cancer is a serious disease and could cause an early death. I also realize that cancer treatment has progressed well over the years and survival rates for various types of cancer continue to climb. The specific questions of survival really only came up after I read the various reports on Erbitux. Generally, the reports would say that adding Erbitux to radiation treatment of head and neck cancer would "improve survival of patients". Some of the details indicated that it could almost double the survival rate of this type of cancer. So I asked Doctors Sombeck and Castillo about it, wondering what this potential improvement in survival would mean for me. Surprisingly, they gave me very different answers.

Dr. Sombeck & Will Rogers

The initial response from Dr. Sombeck was that none of the statistics in the reports I was reading applied to me. They were all related to first occurrence stage 3 and 4 neck cancer. He classifies my cancer as recurrence, because I had a carcinoma lesion on my tongue in 2001. He said I would need to have statistics from at least another 100 people with my case to answer the question, which simply doesn't exist right now. I'm one of the first Erbitux patients with recurrence. So I asked what he thought my survival rate would be. Then he started to tell me all the problems with statistics and why the answer wasn't easy to give. He told me about the Will Rogers Phenomenon, which has been applied to cancer patients in a number of articles.

The Will Rogers phenomenon is the apparent paradox obtained when moving an element from one set to another set raises the average values of both sets. Will Rogers was attributed with the saying, "When the Okies left Oklahoma and moved to California, they raised the average intelligence level in both states."

A real-world example of the Will Rogers phenomenon is seen in the medical concept of stage migration. As Dr. Sombeck described, in medical stage migration, improved detection of illness leads to the movement of people from the set of healthy people to the set of unhealthy people.

Say you have the following groupings and statistics:

Stage 1 Cancer - 25 people - 80% chance of survival
Stage 2 Cancer - 25 people - 70% chance of survival
Stage 3 Cancer - 25 people - 60% chance of survival
Stage 4 Cancer - 25 people - 50% chance of survival

If you add improved disease diagnostics, such as PET-Scans, it is very likely that some of 25 people in the first group will be determined to be Stage 2 Cancer, but still likely more healthy that the original Group 2. Because these people are not healthy enough to be classified as Stage 1, removing them from this set of healthier people increases the average lifespan/chance of survival of the Stage 1 group. Likewise, the migrated people are more healthy than the people already in the unhealthy set in Stage 2, so adding them raises the average lifespan/chance of survival of that group as well. The numbers could change as follows:

Stage 1 Cancer - 20 people - 90% chance of survival
Stage 2 Cancer - 25 people - 80% chance of survival
etc.

Dr. Sombeck's point? It's very difficult for doctors to give a meaningful answer to patient's questions of survival. They often do not know what diagnostics were used to lead to the published statistics. So I asked again, "With the Erbitux treatment and radiation, what do you think my survival rate will be?" He said, "You probably have a better than 75% of survival into year 5". I didn't press for further explanation...

Dr. Castillo

I told Dr. Castillo about my conversation with Dr. Sombeck. He laughed. He seems to be a lot closer to the Erbitux clinical studies and reports and his overall optimism is much more obvious. He is a huge fan of Erbitux and the monoclonal antibody therapy, hoping that it represents the end of traditional chemotherapy. So his answer was more hopeful and ambitious than Dr. Sombeck. He said that based on my general health and the results of Erbitux so far, I should certainly expect a better than 75% chance of disease-free survival by year 5. He also told me that he considers me more like a first occurrence patient rather than a recurrence, for various reasons that we discussed, suggesting that the published statistics from the clinical trials will likely apply to me as well.

Now you know something about my chances of survival...not a clear answer but hopeful.

Roy

Erbitux - Week 2

2006-04-10T22:04:00.000-05:00

Something Personal From Roy

Thanks to Melinda (and encouragement from the kids) I'm going to do my best to post what's happening with my cancer experience so friends and family will know what's going on when they want to "look in". For those that really know me, this is not something you'd expect me to do...I'm usually very private and would rather not talk about what's going on with me. But this situation is very different...I feel the need to tell those I care for everything I can about the experience. Besides just feeling better about what's happening now, the information may be helpful to some of you later. Sad to say, many people are affected by cancer, so the likelihood that this information could be useful is potentially high.

Timing is Very Good

Let me take the opportunity to personally thank Sean O'Neil, who recently went through treatment for the same type cancer I have, Squamous Cell Carcinoma of the head and neck. Sean, a senior executive in DuPont's Surfaces division (countertop materials), worked closely with us to setup Turnberry Stone, a countertop manufacturer of DuPont products, this past year. Once Sean knew I had also been diagnosed with a cancerous tumor, he immediately took the time to help me. The information he forwarded to me and details of his experience guided me to an alternative therapy approach that promises to have a huge impact on my survival rate and quality of life now and in the future. Sean participated in a clinical study using Erbitux, an antibody therapy that is now being used as an alternative to chemotherpy. You may recall the company ImClone, the company Martha Stewart was in trouble over. They have successfully produced large quantities of monoclonal antibodies that attach to cancer cells and cause the cells to stop growing and dividing, killing the cancer, shrinking the tumor. You can read more about it if you care to at www.erbitux.com. This drug was approved by the FDA for treatment of squamous cell carcinoma of the head and neck on March 2, 2006 (http://www.cbsnews.com/stories/2006/03/02/ap/health/mainD8G36IRO1.shtml), just a few weeks before I was diagnosed. I was so happy to learn of it and the doctors were thrilled that I knew about it and requested to be treated with it. I'm now one of three or four patients (as of two weeks ago) that is being treated with Erbitux for this type cancer in Orlando. Thanks again Sean!

The New Routine

Well, the treatment calls for weekly IV injections of Erbitux (along with some pain medication and steroids to control swelling), along with daily radiation treatments (5 days a week for 7 weeks). After that, they will give my body a chance to recupperate...then surgery (more details later). Today I had my second Erbitux injection and had my first radiation treatment.

How Am I Doing So Far?

After March 14, when I had the biopsies/aspirations to detect the cancerous tumor, I felt a lot of pain. The tumor, which was at 42mm at the time of the surgery, swelled and pressed on nerves giving me the revolving sensation of a very bad ear ache, tooth ache and headache. I discovered I have a problem with codeine-based painkillers, and basically went the first week without being able to find relief from medication. I couldn't sleep or get comfortable laying down...going the first week without sleep and in constant pain. During the second week, I was given demerol and that was great...I could finally sleep for several hours. But the pressure from the growing tumor was tremendous, causing me to have occasional severe headaches. The worst happened while Melinda and I shopped at Sam's one day. I started my slurred speaking during that headache. Later the doctors said I may have had a TIA (minor stroke) or the tumor was just pressing in on the nerve that controls the tongue. Either way...the left side of my tongue is still numb and I'm slurring...very frustrating. The CT Scan and MRI shows the tumor restricting the jugular vein, which is the returning blood to the heart. The tumor is probably restricting the carotid artery, which is carrying oxygen to the brain, a far more dangerous situation according to the doctors. They were concerned about the first dose of Erbitux because of the expected further swelling and potential restriction of the carotid. I took steroids and a daily aspirin to keep the blood thin.

Last Monday I took the first dose of Erbitux as Melinda wrote about. I was worried... But afterwards, almost immediately, I felt great! The pressure was gone almost right away. I still have some minimal pain and the slurred speech is still a problem, but the unbearable pain is gone. I went all the way through the week without really feeling any side effects. On Friday I did feel nauseous and that lasted through Saturday. But that was nothing compared to the pain I was in earlier. Also on Saturday, within a few hours, my face did break out in the acne-like rash and it has progressed rapidly. Shaving is definitely going to be a problem. The doctor said today that I need to be given a "shaving pass" for the next 6 weeks or so. I'm thinking he may be right... Roy with a beard. It's never happened.

Looking Forward

My plans are to post at least once a week and give everyone a reasonable amount of detail. I'm a little nervous about some of the potential side effects that lay ahead...except for one. Doc says I should lose about 20 pounds...while encouraging me to be on a high protein, high calorie diet. This I can live with!

Thanks for "tuning in".

Roy

Here we go...

2006-04-03T22:23:00.000-05:00

Hi everyone!
Today Roy got his first treatment of Erbitux, a drug that has just been approved for treatment of head and neck tumors. It had mostly been used to treat colon cancers until now. He will be getting Erbitux once a week. This is done instead of traditional chemotherapy. It is administered through an IV and he gets a drip that lasts about an hour each time. He will not need a port as he would if he were receiving chemotherapy and the side effects are very minimal compared to the side effects with traditional chemotherapy. We are very happy about that. The most common side effect with Erbitux is an acne-like rash.
Today was the biggest dose - it lasted 2 hours. There were no complications and tonight he is feeling great, which is very nice because that's the first time I've heard him use the word 'great' to describe how he's feeling in at least 2 months. He was worried because the doctor said that he would likely experience swelling and he didn't think he could tolerate any more pressure in that area (neck and throat) but they gave him some steroids to combat the swelling and that seems to have worked really well.
The radiation treatments have not begun because he had to wait a week after his first dose of Erbitux before he could start, but his first appointment there will be next Monday, the 10th. He'll go there Mon. - Fri. and have about a 15 minute treatment each time.
Thanks to all of you who have sent such loving and encouraging e-mails. Roy does get embarrassed at all the attention he's been getting but I know he appreciates it at the same time. He tells me that he will post on here to let everyone know some of his thoughts and impressions as he goes through these treatments. So, hopefully the next post will be from him. He's much less wordy than I am!
Love you all!
Melinda