Forum Replies Created
-
AuthorPosts
-
David
ParticipantYour treatment choices are your own, and I support any decision you make.
That being said, they wanted to “rush” me into a stem cell transplant at diagnosis too. I’m 53 and other than the low risk MDS I’m in great health. I was diagnosed 2 years ago, and am transfusion dependent, I’m still healthy other than the MDS. I’ve tried Revlimid, it didn’t work. Am currently trying Vidaza, and it’s too early to tell. If it fails, then I’ll continue transfusions until iron overload becomes an issue, with chelation drugs it looks like 2 – 4 years before that will happen.
Bone marrow biopsy results and iron levels are my decision points. If they or my over all health start to become an issue then I’ll open the stem cell door. My research shows if I would have immediately went to stem cell the survival rate was 60% (bit better than a coin flip), waiting until iron is up and/or disease progression shows on my biopsy drops survival rate to 53% (still a bit better than a coin flip). 7% reduction in odds vs 4 – 6 years of “normal” life (I’m still working full time, vacationing, etc. Just with more naps) moved my decision to wait.
Again, I know nothing about your version of MDS or how much research you have done. I do wish you the best with your struggle and hope to hear back from you that you are 100% cured.
ParticipantAfter 2 cycles there is no improvement, but there is change. Per the doctor, “well, it’s doing something”. This is with 2 years of blood work to look back on. As someone else posted Revlimid was a failure for me also. The something it is doing is Platelet related. I have the expected dip immediately and +1 week post cycle. Then my Platelets skyrocketed to 120 (Normal is 58 – 62 range with no variance for the past 2 years), then 133. Then a new cycle started. After second cycle similar results.
Will it effect my RBC? Hope so. Other than injection site pain I tolerate the drug well.
If there are no negative results or reactions I would definitely continue thru 6 or more. Keep in mind, “No, we will continue this course of treatment” is an acceptable response to a doctor’s recommendation.
“Policy” at the cancer center I go to is, 2 units when hemoglobin drops below 7.0 this is too low for me, 7.5 is my fully functional bottom so treatment is scheduled in the 7.8 – 7.7 range to hit this 7.5 target. I didn’t give them an option. I look at it as I’m a senior partner in my care. I want their opinions and recommendations, but if the answer to the question “is there a reason not to do this that makes me feel better” is no then let’s do that.
ParticipantFight against it until the end.
All the research I’ve done, the survivability difference between having it done when you are “healthy” and having it done when the disease has significantly progressed is pretty negligible. Get all the testing and matching done and start the procedure 15 months from now if going thru with it is even an option in your book.
ParticipantCurrently getting Vidaza shots myself.
Any lotion with lidocaine in it helps with surface pain issues (using sunburn lotion because we have it).
Also pay attention to your shot locations, which hurt more than others, etc. Moving an inch this way or that seems to help on the next cycle. I get 3 a day, keep them rotating locations and moving around your body. Arms and stomach are normal. Throw in sides, hips, where ever else they will put them.
ParticipantGet multiple opinions.
Early in my diagnosis (low risk) I was advised to immediately get a stem cell transplant, to never get a stem cell transplant, to take Revlimid, never take Revlimid, etc, etc.
Take all those opinions and combine them with your own research and plan of attack on MDS. Go back to one of the doctors you had the best experience with and lay out your plan with them. If they completely shoot you down, its the wrong doctor. If they offer suggested tweaks to your plan, it is the correct doctor.
ParticipantYou may want to consult with a few cardiologist also to see if cardio-version is a possibility. I say a few because they don’t like to do it unless you are 100% healthy, they do stop your heart and restart it after all. I had A-Fib long before my MDS diagnosis, was on the blood thinners, then finally my cardiologist relented and we tried cardio-version. It’s been 15 years and I’ve never reverted or had an issue.
ParticipantI take Jadenu, 1080 – 1440mg, tolerance dependent.
I’ve found taking it at night is more tolerable as I sleep thru any GI issues and most of the sleepiness side effects. I am still groggy in the morning during the week, weekends the I get enough extra sleep to completely sleep thru the side effects (generally do the 1440 dose on the weekend too).
-
AuthorPosts
