Some highlights from the week prior to my meeting with BB:
* A lovely dinner with BJ at a restaurant I had not tried before, So. We discussed a few topics of interest:
- UAMS has been prescribing more Revlimid than anybody in the world to hundreds if not thousands of patients for a longer period of time than anybody in the world and has seen no incidence of increased secondary cancer. BJ attributes Celgene's own statistics to small sample size. My own opinion is guarded -- I don't like the fact that Celgene noticed anything, although I do understand that sample size can make a bit difference and UAMS has much better data than anybody in the world, and ultimately the risk is worth the reward as Revlimid plays a major role in the cure that I am pursuing.
- BJ notes that UAMS has been using maintenance therapy for 20 years, the first 18 of which were in the face of people saying it did no good, and that they view the recent broadening of acceptance of maintenance therapy with equal parts satisfaction and irritation.
- There are people who remain alive nearly 20 years after Total Therapy 1 (unlike current therapies, this is a small percentage) who are reluctant to discontinue their medications which include Thalidomide and Interferon. In the case of Thalidomide, its benefit is long since exhausted since any residual disease would have developed resistance to the drug by now. In the case of Interferon, it was never proven to be efficarious! Yet patients are afraid to change the regimen, particularly if they tolerate the therapy without side effect. BJ noted one patient in particular who is on a MAJOR dose of Thalidomide (over 1g a day!) who was reluctant to dose reduce even though the protocol at UAMS has been a fifth of that amount for years now. I wonder if I, myself, will be reluctant to dose reduce / discontinue medication after the three year mark when the vast majority of the "cure signature" has been determined. Or after the six year mark when recurrence rates are effectively zero. Hmm....
- I had previously succumbed to vanity and had a dermatologist in LA freeze off a single wart that had appeared on my right index finger. When this chap (no initials as I'm about to rip on him a bit) did that, he saw some as-yet-undeveloped naughty tissue around my fingernail so he froze that off as well. Except it came back so he froze it off again, and again, and told me to put this acidic cream on it, and trimmed the nail, etc. After all these treatments over a period of three months, the right side of the nail looks pretty unpleasant. The dermatologist out here thinks the nail matrix (the part of the body that produces the nail) has been scarred and will never work again and I'm going to have to have it surgically pared back and my fingernail will only be about 80% of the width that it should be -- forever). Mindful that the actor Roy Scheider had been successfully treated for Myeloma only to perish from complications that began with some kind of cellulitis, I asked BJ to look at the finger. She recommended I meet with a dermatologist at UAMS and would set up an appointment for me.
* I made the pilgrimage to Whole Hog BBQ for a delicious pulled pork sandwich. This is one of the things I miss about living in Little Rock. But frankly if I lived here full time I would probably be cured of Myeloma only to die of heart disease since these sandwiches are too good to resist! Behold the glory! (note: the "V" on the BBQ sauce denotes "Volcano" sauce which is so hot you have to get it from behind the counter rather than from the container of six different sauces on each table).
* I ran into J and B B (the other BB referenced a few posts ago) who looked great! Unfortunately, the next day they learned that their struggle continues...Pomalidomide (next generation Velcade) failed to deliver results and so now the Natural Killer cells are the next step, but the non-dr-BB has disease that has escaped the marrow and this must be eradicated before the NK cells can do their thing. I continue to be humbled by the strength and grace of people with this disease, particularly those with a more aggressive form than I.
* One advantage of having the MRI rejected by insurance is that I reduced it to only the essential stuff -- basically we are interested in tracking the resolution of my former "hot spots" so there's no need for MRIs of every other part of my body. As a result, I got in and out of that tube in about 40 minutes which beats the heck out of the 3+ hours (between the full body MRI and the separate bone marrow "DWIBS" scan) that it usually takes!
Okay, so to the important matter...well, actually my meeting with BB deserves its own post as this is getting rather long. : )
ReplyDeleteCANCER CARE