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.

Hello @kjjjrader and welcome to Mayo Connect. I am sorry to hear of your husband's new diagnosis of MDS. Your concern and questions are certainly understandable. As I'm not familiar with this diagnosis, I found some information on Mayo Clinic's website. If you click on this link, it will take you to a lot of information, especially about symptoms and causes. As I read it, I realized that there are different types of MDS. Did your doctor mention which diagnosis of MDS that your husband has?
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
If you would like to meet others who have had stem cell transplants and bone marrow transplants, Connect has a discussion on this topic. Here is the link,
https://connect.mayoclinic.org/discussion/bone-marrow-transplants-1/?utm_campaign=search
If you would like to post a question to any of these members, just click on the "Reply" button under their post and you can post directly to that member.

How is your husband feeling now? Is there any treatment planned for him?

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We were told it could possibly be this type, Bone marrow with 40% cellularity is consistent with MDS ringed sideroblasts with multilineage dysplasia, 15% ringed sideroblasts . Cytogenetics and Next Generation Sequencing not back yet.
Here are the rest of the results.
The results are abnormal and indicate a 5q deletion in 65%
of nuclei, most of which was monosomy 5, and a 7q deletion
in 69% of nuclei, some of which was monosomy 7. These
results are consistent with this patient's diagnosis of MDS.
My husband feels great right now. This is the best he has felt since he started the revlimid. Which he has been off of since mid September. His blood counts are stable with the last 2 lab test. Hemoglobin 9.6, platelets 135 and neutrophis 900. At this point we have not had another consult with the doctors at Mayo but our local oncologist is doing a watch and see. Labs every 2 weeks and we will see him again after the first of the year.

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@kjjjrader

We were told it could possibly be this type, Bone marrow with 40% cellularity is consistent with MDS ringed sideroblasts with multilineage dysplasia, 15% ringed sideroblasts . Cytogenetics and Next Generation Sequencing not back yet.
Here are the rest of the results.
The results are abnormal and indicate a 5q deletion in 65%
of nuclei, most of which was monosomy 5, and a 7q deletion
in 69% of nuclei, some of which was monosomy 7. These
results are consistent with this patient's diagnosis of MDS.
My husband feels great right now. This is the best he has felt since he started the revlimid. Which he has been off of since mid September. His blood counts are stable with the last 2 lab test. Hemoglobin 9.6, platelets 135 and neutrophis 900. At this point we have not had another consult with the doctors at Mayo but our local oncologist is doing a watch and see. Labs every 2 weeks and we will see him again after the first of the year.

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@kjjjrader If at some point you feel that a second opinion would be helpful, I would encourage you to make an appointment with a Mayo facility. Has your husband ever been seen at Mayo before?

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@hopeful33250

@kjjjrader If at some point you feel that a second opinion would be helpful, I would encourage you to make an appointment with a Mayo facility. Has your husband ever been seen at Mayo before?

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We have had a second opinion at Mayo. We are waiting for our local oncologist to visit with the doctor we saw at Mayo to go over the final results of the biopsy. He had his first stem cell transplant at Mayo for his MM.

Mostly we are wondering if others have MDS, how long, what treatments, etc.

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Are there any members on connect with MDS (Myelodysplastic Syndrome). How long have you had MDS? What treatments have you had? What side effects have you gotten with treatment? Did you have a bone marrow/stem cell transplant? How did that go? We are looking to get any answers from people who have this cancer and how it is going for them.

We will be doing treatment at Mayo in Rochester. We are hoping to get into a clinical trial. Treatment will start after the new year.

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Hello at @kjjjrader. I'd like to invite @motherofdragonsdk, @jaylevel1, and @cybears to this discussion as they have all posted about living with MDS or caring for someone who has it. You can see some of their posts here in the meantime, https://connect.mayoclinic.org/discussion/mds/. It is good to hear that you will begin your treatment at Mayo Clinic in the upcoming new year. How are you doing with symptoms while wait to begin treatment?

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My husband has not had to have any extra treatment at this time. His blood levels are low but not requiring any transfusions, We are just trying to enjoy the time with no treatment. He was taking Revlimid up until September for MM. Since being off of that his appetite has gotten better and he says he feels the best he has felt in over two years. Although I see the fatigue with the low hemoglobin. We are just looking for information from people who have this cancer. You can find all sorts of information for MM but not a lot for MDS. Any information from people who are living with this would be helpful.

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My husband was Dx'd with MDS 5q deletion during March 2018. After 67 weekly Procrit injections at 40,000 units. Procrit failed in October 2019. During all that time his hemoglobin never rose above 9.5, and during the last several months it hovered around 8. He started Revlimid when Procrit failed.

After 15 days on Revlimid a slight rash turned progressively worse; the rash and raised skin welts were so severe they could no longer be controlled with Benadryl and Claritin. And his white cells & neutrophils were severely compromised – we were advised that would happen. The oncologist put him on 20 days of Levofloxican (spelling?) as a precaution. But…. his energy was much improved in spite of nearly every blood level being significantly out of range, with hemoglobin at 8. The oncologist said there are four ways to treat 5q deletion: Procrit, Revlimid, Vidaza, transfusions. Then hospice. Does anyone have information from hematologists or oncologists that suggest other treatments can be successful?

In November 2019 a port was surgically placed and he started Vidaza. His energy is somewhat improved after just one 7-day cycle. But the oncologist advised Vidaza would produce no improvement for at least 2 1/2 months. We are confused, surprised, and grateful. He starts the second cycle on January 6th, at which time a blood draw will reveal his hemoglobin level, neutrophils and all the rest. He is 78 years old, not a candidate for stem cell.

I will try to come back here soon to read more, and will be more specific about things as I learn more about treatment. We are reminded by the Mayo hematologist and our local oncologist that "everyone is different"… that Vidaza can work for a couple months, or not at all, or for years. We take it one day at a time.

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@kjjjrader

Are there any members on connect with MDS (Myelodysplastic Syndrome). How long have you had MDS? What treatments have you had? What side effects have you gotten with treatment? Did you have a bone marrow/stem cell transplant? How did that go? We are looking to get any answers from people who have this cancer and how it is going for them.

We will be doing treatment at Mayo in Rochester. We are hoping to get into a clinical trial. Treatment will start after the new year.

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I posted more detail here, just a few posts below…. Revlimid reaction after 15 days – a significant rash, severe enough to discontinue. That was after Procrit failed – my husband – he had weekly Procrit injections at 40,000 units from March 2018 – November 2019. He has been severely fatigued since December 2017 prior to the diagnosis, never having regained enough energy to live a "normal" life. He can walk about 100' at a time, then fatigue sets in. Sometimes he cannot even walk that far. He sleeps 5 or so hours during the day, sleeps all night, wakes up tired, stays tired all day, and cannot perform routine tasks. His hemoglobin now hovers around 8, sometimes going as high as 8.3 during the last six months.

A bone marrow assay with full DNA sequencing at Mayo revealed the 5q about 8 months after the initial bone marrow aspiration which was non-specific but suggested MDS. We are told my husband will be on Vidaza (because Procrit and Revlimid failed) until Vidaza fails, an unknown period of time; then transfusions. We are realists about this, knowing there is no cure, and that his condition will become progressively worse. Too old for stem cell – age 78.

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Has anyone had MDS diagnosis? If yes, how was it treated? Has it become AML?
My husband received this diagnosis a month ago. He will go back to MDA in Oct, .

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@boi683

Has anyone had MDS diagnosis? If yes, how was it treated? Has it become AML?
My husband received this diagnosis a month ago. He will go back to MDA in Oct, .

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Hi @boi683, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about Myelodysplastic Syndrome (MDS). I did this so you can connect with follow members like @5qdeletion @cybears @jaylevel1 @esperanzam @lithuanian @kjjjrader and @ikampel2. Click VIEW & REPLY to read through past posts.

You may also wish to see this discussion:
– Myelodysplastic Syndrome (MDS): how to increase red blood cells? https://connect.mayoclinic.org/discussion/mds/

You ask about MDS becoming AML. Only about one-third of patients will develop AML. Is your husband in a higher risk category? What symptoms led to your husband's diagnosis?

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@boi683

Has anyone had MDS diagnosis? If yes, how was it treated? Has it become AML?
My husband received this diagnosis a month ago. He will go back to MDA in Oct, .

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boi683, my wife was diagnosed with CLL in 2006 and received chemo 2009, remission Jan 2010. They followed her for years and she was diagnosed with MDS in 2013. At first, it wasn't too bad. She went in every three weeks for an injection and life was fairly normal. Then, in 2019, her numbers weren't responding to the injections so we were going in weekly for more injections and eventually transfusions. This seemed like an endless road with no chance for change so I took her to MD Anderson in Houston to see what other options we had. That's when things turned much worse. She was diagnosed with AML! We had driven 3 hours home before we found out and were told to come back immediately… in the dark and in pouring rain! We spent two months there going in and out of the hospital including 21 days of "Protective Environment" where I had to talk to her through a window with a microphone. Her oncologist there told us that the only "cure" was a stem cell transplant which she had on June 9th. It was an allo, son was donor. We just learned a few minutes ago that her chimerism is 100% donor so that's great news! I'm sitting in the parking lot because I can't go into the clinic. 🙂 BTW, I was able to get her transplant done closer to home so we didn't have to live in Houston for 4 months with our two dogs which turned out to be even better since Houston has had such trouble with COVID-19!

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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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