Choices

Now that I have seen Dr. Ramchandren in the U.S. for my second opinion, and have rec'd the results and his opinion I am quite torn on what the future brings me with regard to treatment options. The options mentioned at the appointment were R-ABVD, ICE, or even RITUXIMAB alone. The thing that has been mentioned by 3 Oncologists I've spoken with is that I would need another transplant. This time an Allogenic Stem Cell Transplant.

This is what has me torn. I have gone through the transplant process before with an Autologous transplant in 2008. I feel I have not totally regained my strength or immune system since that one. That, is part of the reason this scares me. I am still weak and have a compromised immune system from the last one, I know what I went through with that one. Not sure I want to do that again first of all, but the risks of an unrelated donor, allogenic transplant scare the hell out of me. The prospect of having a match with a sibling donor have become slim to none. I've been trying to find the good in it but the odds of even the good are against me.

So I look at it this way, quality of life for the short term or being sick, increasing the pain of my neuropathy, and then there's the possibility my system does not come back up to normal after the transplant. That in itself is enough to scare the hell out of anyone. I took that risk the first time, taking it again just does not make sense to me right now.
At the end of this post is an excerpt from "The Journal of The American Society of Hematology" which speaks of some of the death rates related to this procedure during one study, which does not mean this happens in all cases, but worthwhile reading none the less, as it is a side effect no matter how small or big that I have to consider.

I have an appointment in the next week to see my oncologist here in Windsor and I will be having a pretty in depth conversation about it to say the least, and to go over the report from Dr. Ramachandren as well.

Similar to mine minus the striping

So not fun right now, dealing with looking for a new vehicle, as our van has an "unknown" electrical problem which keeps activating the anti-theft system and shuts down the van as your driving it, this is when it will even start! Anti theft system shuts down everything, just like pulling a plug on something electrical. So the cost of search out the problem and TWO licensed mechanics not being able to find the problem we have decided to write it off and just move forward looking for a new vehicle, "disposing of" or selling the old one a.s.a.p. as it needs to be moved from where it is. And then there is my health issues as well as Brenda's health issues, her ulcer has been acting up regularly even with her meds. With me and my problems, that's enough to give anyone an ulcer! Surprised I don't have one, or maybe I do, who knows, all I do know is it is a lot to deal with, but with the help of each other family, friends, and other sources we will get through it all.
So I leave you with love & hugs no matter where you are in your journey.

Transplantation-related mortality and outcome
Of the 101 patients included in this study, 52 died during the follow-up period, and 49 are still alive at a median follow-up of 413 days (range, 60-1326 days), of these 35 (71%; 95% CI, 58%-84%) achieved and remained in complete or partial remission (Table 6). Disease progression or relapse occurred in 40 patients (40%; 95% CI, 30%-50%) at a median time of 76 days (range, 6-781 days) after RIC allo-SCT. Thirty-four deaths were directly attributed to disease progression or relapse. Twelve deaths were attributed to aGVHD or cGVHD, whereas 5 patients died of infections. The overall cumulative incidence of transplantation-related mortality (n = 18) was 18% (95% CI, 10%-25%) at a median of 138 days (range, 7-420 days) after RIC allo-SCT. However, it is noteworthy that among these 18 patients, 2 patients died from DLI-related GVHD following disease progression. In addition, among the 18 patients who died from TRM, most (n = 13; 72%) were older than 50 years. Only 5 patients (5%; 95% CI, 1%-9%) died of transplantation-related toxicity before day 100. Among patients who died of TRM, 11 were in the group of 46 patients who received the higher ATG dose of 10 mg/kg or 7.5 mg/kg, whereas 7 were in the group of 55 patients who received the lower ATG dose of 2.5 mg/kg (P = NS).

( Just a note to add: The van is no longer our problem, auto wrecker will deal with it now. Scratch that worry off the list!)