Myelodysplastic Syndrome (MDS)

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.

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!

Iwas diagnosed with MDS in Jan 22. I was taking injections of "GRANIX" bi-weekly for approximately 28 weeks, with no conclusive evidence of any improvement. My whites, reds, platelets, and neutrophils are all very low. At this point I am not sure what treatment is the best for me. I am 70 years old, single, never married, and no living relatives. I am currently enjoying life and taking the punches as they are thrown. I recently had a bout with pneumonia putting me in CC unit for two days, but recovered and continuing one day at a time. Any suggestions or options for my continued treatment

Hi @davidkreuser, welcome to Mayo Connect. One day at a time…that’s a key to happy survival. ☺️ You sound as though you’re able to take those obstacles life tosses out at you. MDS is a new challenge for you that wasn’t anticipated!

Myelodysplastic syndromes are a group of disorders caused by blood cells that are poorly formed or don't work properly There are at least 6 subtypes of this blood disorder so it’s important to find the specific type. Some people are fortunate to not require any meds for sometime and others find benefit in treatments to delay the progression of their disease.
If you haven’t seen this video yet, I found this helpful in explaining MDS and the possible treatments. It’s from the hematology department at Mayo Clinic.

https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/
Along with the Mayo informational article on MDS:
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977

We have a number of members in this group who have MDS. I’d like to introduce you to @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader and @ikampel2. I hope they’ll be able to chime in and give you some suggestion and options for what has worked for them.

You’ve been on Granix injections for 28 weeks. If your doctors haven’t seen any changes have they discussed other treatment options with you?

Wow sorry to hear this but my journey seems very similar I’m curious wat the trial drug is I’m on the chemo pill an vidaza shots too with low counts an like him waiting to see if chemo lowers my blast cells so I can have stem cell transplant yes tuff decisions but like to know the trial drug we all need luck an hope

My situation is very similar to yours. I am my husband's caregiver. He was diagnosed with MM in 2015 and had a stem cell transplant in 2016 followed by 2 years of revlimid.
In early 2023 his platelet counts dropped below 50. A bone marrow biopsy showed med/high risk MDS. His consultant referred to it as "secondary MDS" as it seems likely to be a result of the chemo he received in preparation for the stem cell transplant - which was successful as it put the MM into remission and gave him excellent quality of life for the next 7 years.
Treatment for the MDS to date has been 7 day cycles of Vidaza every 21 days over 11 months. His platelets recovered reasonably well (80-160), HB was stable around 11, but neutrophils remained persistently low ranging from 0.09 to 1.2 at best. he used gcsf injections to boost his neutrophils on a couple of occasions. In November following a fever he was hospitalised for neutropenic sepsis. Neutrophils were low for treatment in December and we are awaiting another bone marrow biopsy before next steps are planned. In the meantime platelets have dropped to 4 - with no increase following 2 platelet transfusions, HB around 6 to 8 with no change following 2 transfusions and neutropenia persists. We await news and an updated treatment plan.

Welcome, @jdaltonireland. When will you find out more about the update treatment plan? I look forward to hearing what you learn.

More info on myleodysplastic syndrome for us 85 year olds please.

@mkt24 You were asking for some information on MDS so here it is. This info is from Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
There are also many discussions on MDS but they are in the blood cancers group.
https://connect.mayoclinic.org/discussion/myelodysplastic-syndrome-mds-1/
If you just click on the 2nd link , it will take you all the discussions in that group, some of which are on MDS.
You probably know that MDS is not an autoimmune disorder .
Have you been diagnosed with myelodysplastic syndrome? Are you under treatment now?

@mkt24 I was very amiss and didn’t welcome you to Mayo Clinic, so Welcome to Mayo Clinic Connect! I hope I answered your question adequately and you were able to learn something new