Not feeling that great today. I bade farewell to the office today and that was another example of reality setting in. I've been reading about side-effects this afternoon and there is so much poison I'm going to be putting in my body and so much that could go wrong that it's almost overwhelming. Obviously, I realize not everybody gets every side effect and all that...but the reality is, it's all out there and it's scary.
One thing I am going to be sure to question BB about is why he uses Thalidomide in induction and consolidation but Revlimid in maintenance. Revlimid is more effective than Thalidomide, and has much fewer side effects (peripheral neuropathy is a side-effect in about 80% of Thalidomide users but only about 5.4% in Revlimid users). Why not use Revlimid the whole time? It could be that it's distinct enough from Revlimid that it forms another part of the kitchen sink regimen, but if that's the case, does it still need to be used in both induction (two cycles) AND consolidation (two cycles?) -- that almost guarantees long-term neuropathy (in fact, SH, upon seeing the protocol, more or less guaranteed as much, between the Thalidomide and Velcade). Velcade's neuropathy can usually be dialed back with dose control -- Thalidomide doesn't have that characteristic. The other reason to stick with it, posited by Dr. RC, could be that BB was building a statistical model and was reluctant to switch protocols midstream while he was getting data.
I'm going to push him hard on the notion of using Revlimid throughout induction, consolidation and maintenance and see what he says. Certainly SF would probably agree with that protocol.
I have dinner with some people from work soon, so I'm going to try not to have this all hanging over me. It's hard.
Tuesday, January 20, 2009
Quick update
Not too much of substance here but I'm overdue for a brief update.
I'm working out my long list of questions for BB, which should inform my final "decision tree" on what I'm going to have done and where. I was copied on a note from SF to SH talking about my situation, how treatment is needed relatively quickly, and how we've discussed BB's protocol as well as a more traditional protocol without the PACE drugs. It wasn't alarmist, but the implication was clear: the PACE protocol is extremely aggressive and has a host of terrible side effects. I believe both doctors will ultimately support whatever I want to do, but I think they know that PACE is awful and would probably be happier if I went with the more standard treatment.
I spoke with a few more senior people at work to let them know, and today I go in for my last day in a long while to tell the people that work for me (I've told a few of the more senior ones but most of them don't know). In addition to the Disney Channel exec I wrote about last time, another senior person I spoke with knows SF well (his wife went through a transplant for leukemia a few years ago) and had wonderful things to say about him. I have a lot of confidence in him, and yet I'm still torn between doing this here versus at BB's shop. This is one of the things I have to bottom out.
I have my consult with BD tomorrow, and I'll ask him again about secondary marrow impacts of the PACE drugs and the tandem transplant protocol in general. Then my research will be done, unless I can get a phone consult with SJ, who I was scheduled to see on Feb 23rd, but that's too long to wait, I think.
I've been feeling pretty good but the ribs are very sore these days. Some days I need no pain medication, most days I can get by on one or two advil, but lately it's been at least four advil and there have been a couple of Vicodin days. I find, also, that as the day of treatment draws closer, dread is starting to set in. The full BB protocol has four courses of VTD-PACE plus the two transplants. That means six multi-day periods of intense nausea, six periods of neutropenia, etc. I try not to lose out to fear, but it is difficult...and as it gets closer, I'll wrestle with it more intensely.
Meanwhile, I'm taking six capsules of liver.52 herbal formula per day and 8 capsules of milk thistle, and I'm off Lipitor for more than a week now. I'll be interested to see the liver enzyme numbers from my upcoming tests if nothing else.
I'm working out my long list of questions for BB, which should inform my final "decision tree" on what I'm going to have done and where. I was copied on a note from SF to SH talking about my situation, how treatment is needed relatively quickly, and how we've discussed BB's protocol as well as a more traditional protocol without the PACE drugs. It wasn't alarmist, but the implication was clear: the PACE protocol is extremely aggressive and has a host of terrible side effects. I believe both doctors will ultimately support whatever I want to do, but I think they know that PACE is awful and would probably be happier if I went with the more standard treatment.
I spoke with a few more senior people at work to let them know, and today I go in for my last day in a long while to tell the people that work for me (I've told a few of the more senior ones but most of them don't know). In addition to the Disney Channel exec I wrote about last time, another senior person I spoke with knows SF well (his wife went through a transplant for leukemia a few years ago) and had wonderful things to say about him. I have a lot of confidence in him, and yet I'm still torn between doing this here versus at BB's shop. This is one of the things I have to bottom out.
I have my consult with BD tomorrow, and I'll ask him again about secondary marrow impacts of the PACE drugs and the tandem transplant protocol in general. Then my research will be done, unless I can get a phone consult with SJ, who I was scheduled to see on Feb 23rd, but that's too long to wait, I think.
I've been feeling pretty good but the ribs are very sore these days. Some days I need no pain medication, most days I can get by on one or two advil, but lately it's been at least four advil and there have been a couple of Vicodin days. I find, also, that as the day of treatment draws closer, dread is starting to set in. The full BB protocol has four courses of VTD-PACE plus the two transplants. That means six multi-day periods of intense nausea, six periods of neutropenia, etc. I try not to lose out to fear, but it is difficult...and as it gets closer, I'll wrestle with it more intensely.
Meanwhile, I'm taking six capsules of liver.52 herbal formula per day and 8 capsules of milk thistle, and I'm off Lipitor for more than a week now. I'll be interested to see the liver enzyme numbers from my upcoming tests if nothing else.
Subscribe to:
Posts (Atom)
