Bone marrow transplant for low risk MDS?

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• November 14, 2020 at 3:34 pm #53459
  ellebeegrace

  Participant

  We saw my husband’s hematologist on Thursday. The appointment in September we were told he has MDS and started Retacrit shots. Thursday we saw the hematologist himself instead of his nurse practitioner. I went in with a list of questions, which he very quickly answered. He also gave me the BMB pathology report I requested.

  I am not sure if this doctor is maybe somewhat inexperienced with MDS or if he is just not used to patients doing their own research. He very quickly and briefly told us a little about MDS. It seemed like he was about to go into more detail and started to mention ring Sideroblasts and then he stopped and said that didn’t really matter and switched to saying he is going to do a referral to UAB in Birmingham to talk to someone about a bone marrow transplant.

  He said since my husband is young (55) and in good health, that he would be a good candidate and that it would be a cure. He was very upbeat about that, with no mention of any risks. I am not sure what makes him say my husband is in good health, although I guess it could be much worse. He has COPD/emphysema, and was about to have a heart cath for what we thought was severe stenosis – which was yesterday and is thankfully only moderate stenosis. Wouldn’t the COPD/emphysema be some concern though?

  Anyway. When I asked questions, we found out my husband’s type is MDS-RS-SLD. The doctor wasn’t even going to mention it if I hadn’t asked. I asked him about risk level and he said he’d say it’s low risk. From looking at IPSS-R, etc, it does look like he is low risk.

  He also has not needed any transfusions. He has had 3 Retacrit injections so far and his hemoglobin came up to 10, from around the 8-9 it has been all year. Dr is increasing the injections to every other week now instead of every 3 weeks.

  I have read that BMT is mostly recommended for high risk, not low risk. So I am not sure why he so enthusiastically recommended seeing someone about a BMT.

  Has anyone else experienced this? Had BMT recommended for low risk?

  We wanted a referral to UAB anyway, so we’ll see what we find out there. I just can’t quite make sense of the local hematologist though.

  November 14, 2020 at 5:43 pm #53460
  Kathie Wolf

  Participant

  One of the things we learned early in this disease is that everyone reacts to it differently. My husband was diagnosed in 2017 with low risk with one mutation and now in 2020 we are in Remission after 8 months of Vidaza. Our Oncologist did not start out telling us that a BMT was the best option, but he was in his early 70s. At 73, we did have a consult with the Transplant Specialist at Stanford, and felt the risks were significant and we would pursue the chemo first. Thankfully, it has worked well for him. My husbands health is great, he’s back to hiking 10-15 miles a day and backpacking. Other than MDS, no other health issues. Having the consultation should be very helpful to you. A BMT is not without risks and there may be a point in your husbands disease progression when you want to pursue that. For now, gathering the information is good. My husbands labs are all now completely normal after a year of running in the 10-11 range. He celebrated his 74 birthday in August and has been off the Vidaza since September. We used Procrit and he responded well, but developed a superficial blood clot so it was no longer an option. Good luck! Hopefully his hemoglobin will get better and he will have more energy.

  November 14, 2020 at 8:13 pm #53461
  ellebeegrace

  Participant

  Hi Kathie, thank you for sharing y’all’s experience! That’s great that your husband responded so well to treatment! It gives me hope to read about others getting better.

  I know every case is so different, and everyone responds to treatments differently. Illnesses like that are the most frustrating! I have Ehlers Danlos Syndrome myself, which isn’t life threatening with the type I have, but it is one of those illnesses where every one of us is different and there’s no one single treatment that helps everyone. I guess the plus side is that because of that I am already used to researching medical stuff.

  I am sure we’ll feel better with seeing a doctor at UAB. Although even with experts I still do my own research and not blindly trust them.

  This has been a stressful couple of months, first being told that the anemia was probably nothing, to being told it’s MDS but not given much info and feeling pretty lost, to the Dr seeming to downplay things but suggesting BMT. I guess everyone here can probably relate to the stressed, anxious, lost feeling though. I hate that anyone has to go through this, but I am glad to know we are not alone!

  November 16, 2020 at 10:19 am #53468
  Kathie Wolf

  Participant

  Sounds like a roller coaster. While we haven’t enjoyed the news, our Kaiser Oncologist has been great at guiding us through the process and options. She trained at Stanford and the MDS team knows her well, so the connection helps. I hope you get answers from UAB. Feel free to reach out if your have further questions or just need to vent. I am an RN, so like you, I do a lot of research. It helps knowing which sites have good information. The MDS site has several taped presentations on their website that are great and aimed at the layperson. Don’t overwhelm yourself with them, but maybe pick one that is for the newly diagnosed.

  November 18, 2020 at 4:19 pm #53492
  ellebeegrace

  Participant

  Well we got a call from UAB today to schedule a consultation for a BMT. Apparently the hematologist didn’t listen when I told him we wanted to see an MDS specialist for a second opinion and instead he just scheduled a BMT consult.

  So I just spoke with one of his nurses and she is checking with the Dr about what the referral is supposed to be. I don’t think I like this hematologist very much. I am not sure if he is inexperienced, stupid, or money hungry. But if we see a specialist at UAB maybe we won’t have to deal with the local hematologist much. Or we might have to ask to switch to a different local hematologist.

  Right now I am kind of thankful for my general distrust of doctors and my love of research. My husband wouldn’t have questioned any of this, and neither would his sister who used to help him with his medical stuff. He would have gotten a BMT whether he needed it or not.

  We will check out those presentations soon. Thanks for telling me about them! I will wait for a calmer day though! 😉

  November 19, 2020 at 10:15 am #53499
  Michael

  Participant

  I see a local hematologist for routine monthly blood work and monitoring and I travel to a Center of Excellence for annual bone marrow biopsy. I am 68 and diagnosed with low risk MDS. Initial diagnosis was RAEB 1 (6 % blasts), which was done locally. Local hematologist scheduled Vidaza treatment. I sought second opinion at Center of Excellence. Diagnosis was changed with less than 1% blasts. Treatment was cancelled and I remain on watch and wait 5 yrs later. All my treatment decisions will be guided by my COE physician.

  Moral of story is that in my opinion everyone with MDS should put their trust in Ctr. of Excellence and a physician who deals with MDS daily. Local hematologists likely don’t see enough patients to have the experience in dealing with a disease that is so diverse as MDS.

  Best wishes.

  October 8, 2021 at 6:26 am #55045
  Roderick McCune

  Participant

  Michael, are you on any special diet? Roderick McCune

  October 8, 2021 at 12:25 pm #55046
  Michael

  Participant

  Rod~

  No special diet for me. My wife makes sensible meals but I do stray when on my own! When I inquired about lifestyle changes my “MDS guru” said not necessary. Of course hand washing and staying clear of known sick folks have been my social distancing practices long before cover reared its ugly head.

  Best wishes.

  October 8, 2021 at 3:49 pm #55047
  Sue

  Participant

  A second opinion saved my life. I was seeing a hematologist/oncologist regularly for 20 years for a Myeloproliferative neoplasm titled Essential Thrombocythemia. I moved away and had not yet hooked up with a new Dr when my primary care physician called and told me she set up an appointment with a new hem/onc because my labs showed blasts. I went and had a bone marrow biopsy which showed my blasts at 3%. After much personal research, I Wasn’t comfortable with a watch and wait so I researched specialists and found a Dr. whose speciality was MPN/MDs and other similar diseases. I made an appointment and in the two month time frame from when I called until my appointment, my blasts had risen from 3% to 10% and I was told the same thing. I was relatively healthy and the best chance for a bmt to have a successful outcome was now. I am 14 months post transplant. MDS can change that rapidly.

  October 19, 2021 at 4:35 pm #55284
  Tim Zumwalt

  Participant

  I am also Kaiser (Fresno) and thinking of changing. Where is your Kaiser, are you satisfied with your Doc?

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