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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders group.

I was diagnosed with MDS, specifically Refractory Anemia with Ring Sideroblasts in 2013. I became transfusion dependent 11/2 years ago. Is there anyone out there who is or has been treated with Azacytidine for RARS? Has anyone been treated for iron overload with Deferasirox?

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@hklass

I was diagnosed with MDS, specifically Refractory Anemia with Ring Sideroblasts in 2013. I became transfusion dependent 11/2 years ago. Is there anyone out there who is or has been treated with Azacytidine for RARS? Has anyone been treated for iron overload with Deferasirox?

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Hello @hklass. I would like to invite @dchavian, @nchase, @jaylevel1, @teammeadows, @donnaclabaugh, to this discussion as they have all discussed being diagnosed with MDS, and a few mentioned taking vidaza (Azacitidine) as well.

@hklass, if you don't mind explaining, what is the difference of MDS and MDS with refractory anemia with ring sideroblasts?

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@hklass

I was diagnosed with MDS, specifically Refractory Anemia with Ring Sideroblasts in 2013. I became transfusion dependent 11/2 years ago. Is there anyone out there who is or has been treated with Azacytidine for RARS? Has anyone been treated for iron overload with Deferasirox?

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The myelodysplastic syndromes are grouped into about 6 different categories. The category I’m in is Refractory Anemia with Ring Sideroblasts. Refractory anemia is a condition in which the bone marrow fails to produce sufficient normal red blood cells. Iron molecules, rather than helping the red blood cells to produce hemoglobin which carries oxygen to the cells of the body, simply form a ring around the nucleus of the red blood cells, causing iron overload.

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@JustinMcClanahan

Hello @hklass. I would like to invite @dchavian, @nchase, @jaylevel1, @teammeadows, @donnaclabaugh, to this discussion as they have all discussed being diagnosed with MDS, and a few mentioned taking vidaza (Azacitidine) as well.

@hklass, if you don't mind explaining, what is the difference of MDS and MDS with refractory anemia with ring sideroblasts?

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Is there nobody with MDS out there? I really need to contact someone who has been treated with Vidaza (Azacitidine) What about treatment for iron overload with Deferasirox? I'm afraid to take these treatments because I only have a problem with my red blood cells, but both of these meds will reduce my white cell count as well as my platelets. I'm afraid that the meds will be worse than the illness.

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@hklass

Is there nobody with MDS out there? I really need to contact someone who has been treated with Vidaza (Azacitidine) What about treatment for iron overload with Deferasirox? I'm afraid to take these treatments because I only have a problem with my red blood cells, but both of these meds will reduce my white cell count as well as my platelets. I'm afraid that the meds will be worse than the illness.

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I have been diagnosed with early MDS and I'm wondering if anyone else has had petechiae on your ankle, foot, instep, and heel that started out red and turned brown after that. My foot does swell up after being on it for a while and the instep begins to hurt and swell also. There is also a black spot on my instep which my PCP said is a superficial blood clot. I saw my hematologist on Thursday but forgot to ask him about it and of course, the office is closed today. Does anyone have any ides if this will remain this way or if it will eventually dissipate?

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@beanglow

I have been diagnosed with early MDS and I'm wondering if anyone else has had petechiae on your ankle, foot, instep, and heel that started out red and turned brown after that. My foot does swell up after being on it for a while and the instep begins to hurt and swell also. There is also a black spot on my instep which my PCP said is a superficial blood clot. I saw my hematologist on Thursday but forgot to ask him about it and of course, the office is closed today. Does anyone have any ides if this will remain this way or if it will eventually dissipate?

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I have been diagnosed with PV and an early complaint before having. 2 mild strokes leading to the diagnosis was a right foot problem similar to yours. Three doctors looked at my foot could not diagnose any specific problem and insisted that I just learn to live with it. After the PV diagnosis when I had 2 mild strokes, the hemotogist also claimed that my foot issues had nothing to do with the diagnosis of PV or the strokes. After the strokes, my foot pain and discoloration faded. Now it is back and am concerned about having another stroke.

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@barbie75

I have been diagnosed with PV and an early complaint before having. 2 mild strokes leading to the diagnosis was a right foot problem similar to yours. Three doctors looked at my foot could not diagnose any specific problem and insisted that I just learn to live with it. After the PV diagnosis when I had 2 mild strokes, the hemotogist also claimed that my foot issues had nothing to do with the diagnosis of PV or the strokes. After the strokes, my foot pain and discoloration faded. Now it is back and am concerned about having another stroke.

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Thanks for your reply. My PCP did not seem to be concerned about it. I showed it to my hematologist/oncologist and he didn't seem to be concerned about it. I had an appointment to have an ultrasound on my legs and to see a vascular surgeon but had to cancel because I also have Chronic Intestinal Pseudo Obstruction and Sjogren's and was just too sick to go to the appointments. I have researched MDS and petechia is one of the symptoms of MDS. What is PV and which doctors do you see?

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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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