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del 5q failed on Revlimid now to start Vidaza

This topic has 3 replies, 3 voices, and was last updated 5 years ago by Kathy Stermer.

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April 7, 2019 at 5:17 pm #46444

Kathy Stermer
Participant

I am a retired nurse 61yo. My MDS was found a year ago after a wrist fx and incidental finding on lab work. After 8 months of taking Revlimid with minimal results have required 13 transfusions so far and now is deemed ineffective so Vidaza starting this week. Have cared for transplant patients the last 15 years and decided it’s not for me. Odds not great, too many side effects, bone marrow may take but other organs at high risk for destruction and relapse rate too great. Yes I want to live the best life I can with whatever time I have left. I accept we all have an “expiration date” and my preference is to spend it with my family and not in a hospital. I struggle most with trying to just live with this and not fret the “what if’s”. Wishing all of you the best journey possible in dealing with this highly variable disease. My journey will end with Vidaza so crossing my fingers it gives me some quality time without too much hassle.

April 8, 2019 at 9:32 pm #46464

Curtis Hicks
Participant

Kathy…Kathy…Kathy First of all, I’m no expert regarding MDS…but I was diagnosed with MDS in February 2017. I have been on Vidaza for 26 months. That translates to 260 shots of vidaza..26 shots for nausea and well over 100 blood tests to monitor the actions of vidaza! Your oncologist needs to really know numbers with regard to platelets, WBC, and RBC. I have been caught twice with low platelets and received a transfusion each time. Knock on wood, I feel good! I will be 76 on May 1st. Take care…I wish you well! Curtis E.

April 9, 2019 at 12:10 pm #46472

stacey
Participant

Kathy,
Were you on at least a 5 mg daily dose of Revlimid? Also, did your doctor ever try increasing the dose before switching you to Vidaza? I was just wondering, because my impression is that even though it has its own side effects, the Revlimid capsule would have been an easier treatment plan for you than the Vidaza shots.
Wishing you all the best,
-Stacey (also 5q-)

April 9, 2019 at 4:43 pm #46477

Kathy Stermer
Participant

Stacy, was on Revlimid for a year starting at 10mg dose and was was continually adjusted down due to white count being low. Have been neutropenic all year taking antibiotic, anti fungal, and lately anti viral. This disease has so many variables to it no course is set in stone I’m finding. Also had 2 marrows done Oct/Dec thinking something in my marrow had changed but not the case. I’ll give this a whirl. Am fairly at peace now with whatever happens from here forward.
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