Myelodysplastic Syndrome (MDS)

Posted by kjjjrader @kjjjrader, Nov 8, 2019

I am a caregiver for my husband who has recently been diagnosed with MDS. He has MM which he was treated for with a stem cell transplant using his own cells in January of 2018. He did 18 months of Revlimid post transplant as maintenance. His counts always were low once he started treatment and he had three incidences of pneumonia in those 18 months. The last time was September 2019 his neutrophils dropped to 300 and his hemoglobin (9.3) and platelets (83) also dropped. None of his counts recovered very quickly so they did another bone marrow biopsy and discovered the MDS. His MM is in remission but they discovered MDS. With the new diagnosis of MDS he no longer takes revlimid.

My question is, are their other people on connect who have gotten MDS from treatment or even have MDS? How long have you had MDS and are they monitoring it or have you had a bone marrow transplant with donor cells? And how was the transplant? We have lots of questions. So any answers would be helpful.

My husband started treatment for his MDS in January. When he was diagnosed the results from the Chromosome and Genetic testing showed he had a missing TP53 gene and 17 out of 20 abnormal chromosomes. He was a candidate for a new phase 3 clinical trial. Luckily he got on the trial and on the clinical drug as it was random for the drug. His treatment schedule is 4 days of infusion with the clinical drug and the 4th day he also gets vidaza injections. Then he has another 6 days of vidaza injections. for a total of 10 days of treatment and then 18 days off. He is responding very well to treatment with no adverse side affects. He feels great. His hemoglobin stays in the 11 & 12 range. His platelets are low but not extreme. However his neutrophils seem to stay low. We are suppose to be on 28 day cycles but he we have had to have the last 2 cycles held an additional 3 weeks before the neutrophil count improved enough. We are waiting to start cycle 6 now and this has been an additional 4 weeks and we still don't know if he will have treatment until Friday. Very frustrating when you have a 5 hour drive and have to stay over night when he does have treatment. So not being able to plan anything because you don't know when you will have treatment is causing lots of anxiety. Have others on connect had to have treatment held this long for low blood counts? I feel this is excessively long and keep worrying that he is progressing to AML. The doctor doesn't want to do treatment with the low neutrophils because if they have anyone die while on the clinical trial they will quit the trial.

On a good note however the TP53 gene has come back and he is down to 1 abnormal chromosome. The transplant team will not plan a transplant until we get to 0 abnormal chromosomes. We had some of his family tested and his brother is a match if we decide or get to the point of a stem cell transplant. Because my husband had an auto sct in January 2018 he is very reluctant to go that route again. He came through it ok but it took along time for him really feel good. In fact I think he feels better now on the days he doesn't have any treatment than he felt since the auto transplant. They tell us the odds of a successful transplant are low because of the abnormal gene and chromosomes. So not sure if quantity of life or quality of life is better. They also tell us the type of MDS he has will progress to AML and if it does he is no longer a candidate for a transplant. Also if this treatment quits working he will no longer be able to have a transplant. So some hard decisions to make.

Our lake cabin has been a good place to go this summer. We can isolate ourselves on the lake and also on the golf course at home. So we try to enjoy our time when we have no treatment. Just cannot make plans for when treatment will be. Have a good day everyone.

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As for lenghty treatments for low blood counts, my wife was diagnosed with MDS in 2013 (CLL in 2006) and was treated every three weeks up until last year when the treatments became so ineffective it had to be every week. In January of this year, she was diagnosed with AML, received chemo twice and got her transplant in June. She had one abnormal chromosome. Her counts are still low 50 days out but haven't gotten worse so we're still hopeful.

As for quality of life, we had that discussion a long time ago and it is THE most important consideration for us.

Best wishes for you both!

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