Post Operation!

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"

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
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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

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

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

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?

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

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...