Low Risk MDS and BMT

[maibl]

My husband was diagnosed in October 2017. Watch and wait for 6 years, this past December (2021), things began to change. He became blood transfusion dependent, was started on Vidaza, 7 days a month. Wasn’t really responding after 4 rounds. Still needed frequent transfusons. Also severely neutropenic, Wbc 1.2 and ANC 0.05. Was also starting to have iron overload (Ferritin level in the 1800 range). Saw the BMT specialist, who wants to move forward with BMT. Now, after round 5 completed, my husband appears to be in remission.Hg 8.7, wbc 4. Now he’s about to start round 6. Primary oncologist sees no reason to “rush” into transplant. Specialist wants my husband to skip round seven, have BM biopsy in August, and go to transplant in September. We are struggling to decide which doctor to follow. BMT is scary, but it’s a cure! My husband is 59 with no comorbidities. Two matches have been found in the Registry. Alternately, he could potentially go on for years with Vidaza.
Wondering if anyone has had simialr situation and how you decide what to do?!?

[Joe Catalano]

Have they looked into red blood cell inducing aranesp etc.

[maibl]

he had quite a few doses of aranesp but then had an extremely high Epoetin
level

[Joe Catalano]

What did the high epoetin level mean they could not give him any more was he less tired, was he more tired? Deara Nesper create the hugging level

[maibl]

it meant the aranesp was not effective

[Anne Ellis]

in my opinion I would go for the transplant while you can,because there are several things that can make him ineligible for a transplant and you may regret it later if you don’t hop on that bus now. my sister has kidney failure and is not a candidate for a transplant so basically all of her options are used up because she gets frequent infections and they will not do a bone marrow transplant if she were able to have a bone marrow transplant it could save her life but now she can’t and so we can’t save her life i..f you can do something that has a chance of putting her into remission permanently..seems like you may regret it if you don’t take the opportunity while you can. bone marrow transplant of course is always risky,but there is nothing now that makes it more risky and if you wait till later it could be more risky. there is also the risk that when you decide you want to do it there is not a donor anymore. there is a risk that he will have comorbidities at that time and not be able to get the transplant. his quality of life would be much better if he has the bone marrow transplant because he will not have to spend a large amount of his time just trying to live….dealing with all the side effects and risks of the medications and transfusions is not fun. it may be working great right now but you will be in a constant roller coaster it’s working and now it’s not working again and will they still do the transplant at that time… being transfusion dependent is a very bad thing. my sister is transfusion dependent and she is miserable. her quality of life is horrible she has iron building up in her liver she is completely exhausted and miserable and constantly needs transfusions. just so you know 8.5 will not be sufficient for your husband to be comfortable over an extended period of time. after a while your blood morphology becomes affected and even when you are at an 8.5 you are still weak and miserable because the blood cells you have enough of them but they are not effective blood cells and so you become sicker and sicker because that 8.5 level is good in numbers but not in quality. all of this would go away if you have the bone marrow transplant.I can tell you that since he is only 59 after a while these treatments stop working and you will be stuck still needing a bone marrow transplant having that risk but maybe not having the best donor. I don’t see his long-term survival and quality of life being great without a transplant. when the doctor says there is no reason to rush I would say what about the fact that there may not be a donor later what about the fact that his quality of life could be dramatically improved for the many years that he still has left he could have 20 years of misery or he could have 20 years of fun. there is also risk in taking aronasp and all of those drugs they can cause blood clots so they are not completely without risk either you will need more and more and more of it which means more side effects and more risks…I have to say I feel sorry that I am pushing so much and I know it is because I wish so much that my sister could have the transplant and we would do anything to be able to get it….if you could see it from my shoes where my sister is almost ready to die because she can’t have a transplant and she has been through all of the treatments that you were talking about and they have stopped working, then you would be able to see it so much clearer. I wish you the very best and I know that is still a very very difficult decision.
I would not give advice to someone who did not ask for it but since you asked I wanted to give you a very Frank Opinion from someone who is living the life without the transplant.. it’s not anything I would wish on anyone.. she is miserable …sure he may live but your lives will be completely taken over by treatments and side effects appointments, ERI infections, (no WBC)…there are many risks with not having the bone marrow transplant. he can become dependent on antibiotics because when your blood cells are not working properly you easily get infections he could die from an infection there are just so many risks that they don’t really discuss with you on the other side also. my sister probably doesn’t have very much longer to live. I am her twin so I would be her donor if we could get it, and and I am just heartbroken that we can’t do it.
I truly apologize if I sound way too pushy….I don’t even know you LOL..I know it is very scary. we (my family) are just living the life of not having a transplant option and it’s just not a good thing at all.the doctor make it sound so easy that you could just live this way and be in remission …it’s not really in remission you would be living on the edge of what happens next when the medications stop working… he may experienced life-threatening side effects,and like I said there may not be a donor at that time, or he may not be eligible because of comorbidities, infections, bleeding problems,breathing issues heart issues so many things can take you off the list ….that to me is scarier than anything. I so wish we were in your shoes right now and had the choice 🙁
I have to say it was just awful that they put us through the process of finding out who is the best donor , we already knew it would be me…and hadn’t even evaluated her to see if she is eligible so it was so heartbreaking to find out that I am the match for her but that they decided that she is not eligible the reason that happened is because she also needs a kidney transplant so they would not evaluate her for that until they decided that they had a good enough donor of course I am her identical twin so we already knew that but they had to confirm it all, so did the swab and wa for results only to find out that they will not do it. we are in California and my sister traveled to Boston General for all of this work up…I just sent my swabs in the mail.

anyway I wish you the very best in your decision and I’m very interested to hear what you decide and hope that if you do decide not to go with the transplant that he does continue to have good health with the other options

[Joanne Roberts.]

These decisions are certainly difficult, and only your husband can make his decision. I am 71-year-old retired physician who is in excellent health other than my high-risk MDS diagnosed in September 2021 (and probably dates back at least a year earlier). All three cell lines were affected, and I’ve had a good response to azacytidine, now just finished cycle 12. My CBC is nearly normal, for now. I did see a BMT specialist at our COE (University of Minnesota), and he listened to my values and goals, which basically come down to “good life over long life.” He said a BMT probably is not ideal for me because the quality of life, even if successful, would involve many and long hospitalizations and a life of early frailty due to drugs and likely frequent infections. That said, those are my values at 71. If I were 59, I might have very different values. Good luck to you both. Follow your hearts.

[maibl]

So my husband chose the pro BMT doctor’s advice, and we are now at T minus 2 – meaning he has two days left until transplant! He was admitted last week, he has had his pre-transplant chemo’s, today and tomorow are his “resting” days and Thursday is the big day. Prior to transplant he had two bone marrow biopsies, and unfortunately the second of the two shows progression to AML. Still, he feels good, he is strong, he has a great positive attitude, and we will get through this together!

[Robin Smith]

Sending best wishes and lots of prayers to you and your husband. Good luck! Blessings, Robin

[grifty50]

Good Morning Maibi:
I was diagnosed in march of 2014 with low risk MDS. In 6 years before that I felt there was something wrong with me I just thought it was old age creeping in early. I Had found a paper from my DR in 2008 I had a physical and it showed my hemoglobin then 13.0 just below scale. My DR said we have to watch that level but because I always did cardio and lifted weights 3-4 per week we both didn’t pay much attention to it. By 2014 my energy level was so bad that I had to stop working (did physical type work) My hemoglobin level was 7.0 They first put me on Aranesp 300mcg shot every other week. Did that for about 5-6 visits hemoglobin went up to 8.7 started to feel better. Then hemaglobin started to go down they raised the Aranesp to 500mcg for the next few visits hemaglobin would be up and down so they added Neupogen 480mcg and went to every week with both shots. That went on for about a year and a half. By this time I was so dependent on blood transfusions I was getting them once a week. They tried Vidaza on July 2016. Did that for 3-4 months nothing so they put me on Revlimid. That lasted for a few months and that didn’t do anything. There wasn’t any clinical trials for me to try. They tried some other things but nothing ever worked. They found out that I had a DNA mutation SF3B1 so in March of 2018 I went into the hospital they gave me chemo for the entire week to wipe my body clean of the bad marrow they just kept 4% to jump start the new marrow. It is 4 years after transplant it’s hard for me now because I have no muscles, I have Osteoporosis ( my bones used to be very dense because of working out my whole life). So for me it’s hard to deal with because i can’t do anything I was able to do before all this started. Though I am very grateful to Penn and everyone involved in my recovery. If Penn didn’t develop the transplant I would have died in the 10years which was text book for low risk MDS. Don’t worry about your ferritin levels after transplant my ferritin level was over 6000 so every other week I got the blood drained to get the level down where it should be. GOOD LUCK

[stacey]

Dear Maibl,
Sounds like you and your husband went into the BMT in a great frame of mind and positive attitude. He’s lucky to have you by his side. Hang in there, and know I am thinking of you and praying for his success.
-Stacey

[Michael Cook]

What can I expect the first 8 days of hospitalization for the transplant?
I am 53 and I have low risk MDS since Dec. 2018. My CBC started dropping below HGB 10
and PLT below 40 this past May. Once they dropped, they want stay up after transfusions.
They started Vidaza. After 4 rounds, no change. Stopped the Vidaza and referred me to
a BMT Doctor. I am told that they have a 100% match donor and I will be looking at
starting the transplant procedure in 5-6 weeks.

[grifty50]

Fri, Jan 6 at 9:46 AM

The week before transplant you will be getting Chemo all week this is to wipe the body clean to except the donated stem cells. They probably will keep 4% of your old marrow to help jump start your new system. You want acute GVHD in the beginning though it could grow into chronic which you really don’t wan’t (I have chronic) most likely for the rest of my life. I too have low risk MDS I was diagnosed in spring 2014 (58 yrs old) tho I had it since 2008 records showed. For those 6 years my Hemoglobin was 13.0 and each year it went down one point every year till it hit 7.0 and I had to stop working. My transplant was March of 2018 I had a 10 out of 10 match My MDS was text book in that I tried 3-4 different chemos and tons of transfusions. This lasted 10 years and if they did not develop the transplant my time was over. Going back to going into the hospital you will be there for 4 weeks. For me it was a breeze except that they wake you up every couple hours. It was 1 year after transplant that for me it became very difficult. I lost all my muscle and bone density I used to workout all the time for most of my life and worked physical. I can’t work, it’s very hard to exercise I keep trying so this is why it’s very hard for me to except how I am now. Just stay as positive as you can. NO NEGATIVE THOUGHTS. The only other thing to tell you is depending on how many transfusions you received a year after transplant you need to start phlebotomies for iron overload from the blood transfusions. Please don’t hesitate to ask me anything. Good luck!

[Termara Campbell]

Hello. I was diagnosed with low risk MDS in 2016 at the age of 36, but I had issues with my iron levels a few years prior. I was getting shots to help boost my hemoglobin but they didn’t help very much so my old oncologist stopped it. My new oncologist now has me taking 2500mg of B12, B Complex and I’ve been having nausea problems for a month so I’m on a bland diet. I was told by new oncologist that I’m not eligible for the BMT because, I’m Lowe risk but after reading this forum I see that’s not the case. How will I know if my MDS is progressing? I’m bruising for no reason but she tells me it’s iron related and the only testing I’ve had since the prognosis is blood work and my iron IVs every 6 months. And like everyone else I read a little about it a few years ago but nothing I read was really good so I quit reading. Any suggestions, thoughts or advice are more than welcomed and appreciated. Thank you all and God bless!

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