A 2 to 4 Week Reprieve

The long awaited visit was a bit anticlimatic. So I guess that's a good thing. Numbers report: IGGs 1898, up from 1756, or something like that last month. M protein is at 1.2. It should be zero and has been at 1.0 for the past couple of months, up from a low of .6 in November or December. The white count from last week is 2.1, which is low. Neutrophils, which are the most important white cells are at 1100. I think that following my transplant they needed to be at 1500 before I could leave the hospital. So, I'm definitely immuno-compromised. All I feel is tired and then more tired. I'm dosing with Vitamin C, hoping to fight off any bugs that might want to take advantage.

So, the plan? Rifkin will see me in 2 weeks to check the white count. If it's still low, he'll probably start treatment. Otherwise, if it goes up, he'll wait until my IGGS reach 2000, then he'll start treatment. He feels that the rise of 100 points from last month is not critical. Once treatment begins, he wants to do a 4 drug combination (VDRB) of velcade, decadron (steroid), revlimid (new drug approved at same time velcade was approved) and biaxcin (also known as clarithromyicin)--which seems to be an antibiotic used for serious bacterial infections like pneumonia, streptoccus, etc. Rifkin said this seemed to be the consensus of the group he consulted. He gave us the name of the doctor who just finished a trial on this and said the results were very promising. The doses of velcade and the steroid may be lower than what I was on last summer, which my nerves will appreciate. This VDRB combination has been so effective that physicians are considering recommending this instead of stem cell transplants, which is quite encouraging. Prior to these two new drugs, velcade and revlimid, being approved, there was only one treatment that was thought to be capable of driving this nasty disease into temporary remission--which was stem cell transplant.

Many months ago Rifkin told us that, while velcade and revlimid were exciting developments, drug combinations held even more promise. During this 8 months without chemo, a number of clinical trials have reported their results (results are only published when the trials are completed) and they hold much promise in terms of extending longevity, time to disease progression, etc. So, the longer I go without treatment, the more the doctors know.

And, Rifkin released me to travel to New York this week to visit Susan's cousins, Arlene and Jim, and our friends Sigun and Joe. Rifkin did not enthusiastically encourage us to go, rather I would say he reluctantly approved--no doubt due to the low white count, but on the other hand, wanting Susan and me to have a life. So, with that in mind we intend to "have a life" by going to the ocean for a week. Once again our friends and family are taking care of us, as they have for the past 2 years. I guess I'll provide a new post in about 2 weeks just to let you know what the status is.
All my love,
Dan