Thursday, February 22, 2007

medical update

Su left Wednesday afternoon for Brooklyn, but she'll be back on Monday for my appointment the following day with Dr. Stiff at Loyola. Only last night did we finally review our notes from my appointment with Dr. van Besien on the 15th. We both had been staying up late working busily since then. She was working to finish a project for her employer by a deadline and I was trying to complete that Fatimid paper. After my appointment with van Besien last week, I turned all of my attention to my studies and didn't do anything regarding cancer treatment until last night.

Unfortunately, Dr. Schuster did not speak to Dr. van Besien about my case prior to the appointment, but here's a summary of what was discussed:

We had concerns about what my most recent CT report stated about my mediastinum. Dr. van Besien's colleague, Dr. Cara Rosenbaum, explained that it is most likely just scar tissue in the mediastinum which is a consequence of all my past treatments. If there was metabolic activity going on (suggestive of cancer) there, then this area should have lit up in both the PET-CT and CT scans.

GND, the chemo regimen suggested by Dr. Schuster and agreed by Dr. Moskowitz, has been used for at least 5 years. It is well-tolerated and has a high-response rate. 3/4 patients improve with this regimen with a high percentage of them achieving remission. The most bothersome side effect is bad mouth sores generally.

Dr. van Besien said I'd receive 3-4 cycles (2 weeks on, 1 week off) of GND totaling 9-12 weeks. He told us about the existence of a trial study at UChicago Hospitals that combines the chemo regimen and an antibody treatment. Whether I receive the aforementioned GND or this trial treatment that includes antibody therapy, the aim is the same: remission. The antibody treatment, however, might promote a more positive response from my body, thus leading to a quicker and more effective remission. Ultimately, of course, the decision to participate in the trial is up to me. UChicago is a member of CALGB, a national clinical research group of medical institutions, such as Sloan-Kettering and Dana Farber, that collaborates on cancer research. This was the first time that Su and I had heard anything about such a trial or organization. Before I sign-off on it, I would like to get Dr. Schuster's opinion as well as Dr. Stiff's.

Dr. van Besien, like all of the other specialists whom we have consulted, agreed that a second transplant is my best chance of achieving a cure. There is no precedent for anyone achieving cure from just the chemo regimen, such as GND. A transplant, therefore, is needed. He told us that 3 factors determine the outcome of the transplant: 1. health of patient 2. status of disease at point of transplant (results are best if disease is in remission) 3. quality of donor. Since I'm in fine health other than the presence of the Hodgkin's, he said, the first point is in my favor. It is assumed that the GND and/or antibody trial treatment would get me into remission. So, all things being equal, the quality of the donor will be the most important determinate in the outcome of the transplant he concluded.

He told us that there is a low chance that a match will be found. Only 20-23% of African-Americans in need of a donor actually find one. A cord blood search would, then, be undertaken if no donor is located. Interestingly, he recommended that my parents be HLA-typed although there is a 1/100 chance that they'd be a match. Since my father himself was treated for Hodgkin's Disease over 5 years ago, I assume that he wouldn't be a good candidate.

I think Su and I would agree that the most beneficial piece of information - by that I mean no one had told us this before - from our appointment was what he had to say concerning the different cancer centers offering mini-transplant treatments. There is, he asserted, a controversy among the various participating cancer centers about the conditioning regimen that is administered before transplantation. There is in other words no consensus about what conditioning regimen is best. Some places give a higher dosage of chemo which increases toxicity, but others use less chemo which increases chance of a relapse. He said at UChicago a moderate amount is administered. Their conditioning regimen is composed of Fludarabine, Melphalan, and Campath. He said the evidence shows Campath has been effective in reducing the risk of GVHD. The goal is to prevent relapse and the adverse effects associated with a high level of toxicity.

Sloan, MD Anderson, Fred Hutchinson, UChicago, and the others will each administer the conditioning regimen differently, which is to say there is no silver bullet. Among the three centers (Sloan, MD Anderson, and Fred Hutchinson) that I have considered for transplantation, he said the competence and expertise is superb. He himself had worked at MD Anderson in the past. Not one of these institutions, he argued, had a monopoly or any tangible advantage over the others, because he said that any news about medical advances or breakthroughs would be disseminated among the nation's centers in a relatively short time. Moreover, they collaborate with each other on treatments so specialists are aware of what their colleagues are doing around the country. All things being equal, he believed that what it comes down to are the location of the cancer center and my support network. Since I live in NYC where my support network is based, Sloan would he said be my most likely choice.

Among the general population of transplant patients, 20% have fatal complications from the transplant. Based on my age, health, and an assumed good donor, he said he'd put a 10% of fatal complications from the transplant. There's a 20% chance of GVHD. The effects of GVHD, however, vary widely he stated from minor to severe. If I were to get GVHD, I would be given medication for 6-18 months until the condition improves. I should expect at the very minimum at least a 3 month disruption of life following the transplant and like Dr. Moskowitz, he agreed that the first year post-transplant is most important.

If I decide to sign-on, there are a few steps that must be taken care of before treatment can begin. He wants me to take another PET-CT, get a Hickman catheter inserted, a bone marrow biopsy done (which I haven't had before), and receive a MUGA (aka ECHO) - heart function test.

I called Coleen, the HLA-NMDP coordinator at Weill-Cornell, this afternoon, asking for copies of the HLA reports of my sisters, Denise and Dawn. Even though they weren't matches, I'd like to bring the reports to my appointment with Dr. Castro-Malaspina on March 3rd. I took this opportunity with Coleen to inform her that one of the possible matches identified by the NMDP was most likely me. I told her the story of how this came to pass. She said this person was a 10/10 match and 26 years old, so yes, considering my story she agrees that that's most likely me. Interestingly, she said such occurrences do happen. Sadly, however, she told me that in one similar case a patient had no other match but the one that was identified - himself. At the moment, there are two individuals who might be matches for me. She is waiting to receive more information from the NMDP about where they are in the process of matching-donating. Dr. Schuster, she said, wants to get the ball rolling as soon as the treatment is completed here.


Comment Anonymous Emily said...

Hey man.

Tim and I have been thinking of you. I'm glad my sis is taking good care of you. If there's anything we can do (other than put out lots of good energy and love), please let us know.


6:43 PM  
Comment Blogger Duane said...

I'm doing okay at the moment, but I'll keep your offer in mind. Thanks Em. :)

8:20 PM  

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