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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 3 days ago | Replies (656)Comment receiving replies
Good morning, Lori,
I am new to this support group and still trying to find my way around. I have been reading a lot of your comments and enjoy reading about your journey. I cannot thank you enough for sharing your journey along with the support you offer.
My husband has been diagnosed with MDS with multilineage dysplasia and ring sideroblasts. He was diagnosed a year and half ago and has been on the treatment watch and wait. In the beginning the diagnoses was hard to accept but now we pray to hear the same at every appointment. I am receiving an education I never dreamed of receiving. Lately his hemoglobin has been bordering around 11.1 and has dipped to 10.6 which was very disappointing, but he recently just received a second BMB and his hemoglobin went up to 11.1. My husband at this point has been feeling fine and you would never know anything was the matter with him. I do believe at this point his doctor is starting to consider treatment.
As I am sitting here writing this to you, I am trying to figure out why. I guess I am feeling overwhelmed today and easily brought to tears. You are always so kind in offering advice to people like me. I guess deep down I am petrified of the treatment the doctor is going to recommend. I believe Reblozyl is his first option and from what I have been reading from group discussions it is breaking my heart. It sounds as if Procrit is less harsh and would be a better way to go.
I am so sorry I am just having a bad day today. I just need to put my big girl panties on today. I want to thank you so much for sharing your journey with all of us. I look forward to staying in touch with you during our journey.
Much love sent to you and your family.
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Good morning @shemac711shemac711! I got a visual on your comment about having a bad day…I’m sitting here thinking of how many times it was a real struggle to pull up those big girl panties over the past few years. Adulting is so hard anyway without trying to pull those panties up while on a roller coaster ride of medical drama, with emotions all over the place…oh for the days when we had little to worry about besides picking the right day to coincide with our Days of the Week underwear. ☺️
Thank you for your kind words this morning and I’m glad that I’ve been able to use my experiences to help other people over the hurdles of theirs. Never in a million years did I think I’d have a blood cancer. That was not on my bingo card of life! But quite frankly, only because of this cancer odyessy, I’ve had so many positive experiences, a huge educational opportunity, I’ve met amazing and brilliant people, made new friends that I’d never have met, experienced compassion from complete strangers, learned the power of prayer, developed a deep respect for my medical team, science and big pharma…the list goes on. It is an honor to be able to pay ‘it’ forward! All of that was worth pulling up those big girl panties! ☺️
If you’ve been reading through some of the discussions, you’ve probably discovered there are different subtypes of MDS. Mutations in specific genes make the variations between subtypes. Some are more likely to cause MDS to be considered high risk for progressing to AML. From my understanding, other subtypes, like your husband’s tend to be lower risk. But any form may have an impact on blood cell production. So in the case of your husband, his bone marrow isn’t keeping up with red cell production.
His doctor is suggesting Reblozyl to help restore his red blood count to avoid having transfusions. This is a different type of medication than Procrit and is recommended for his specific type of MDS. I’ve found a good article for you to read that compares the two meds. From what it appears, the med his doctor is prescribing would be the better alternative. I think the article might relieve your anxiety a little to read about the benefits.
https://www.goodrx.com/compare/reblozyl-vs-procrit
Certainly all medications come with potential side effects and by law the list of possible reactions have to be listed. But many people don’t experience any ill effects from the meds. Your husband may not have any noticible issues and the benefits of getting his blood count back to ‘normal’ would be worth trying the medication.
I found another member with a similar history as your husband who is also taking Reblozyl for their low risk MDS. I’d like to introduce you to @dabls6 who’s been on this treatment for a while. It might be helpful to read a couple of their comments. I have the links below.
> https://connect.mayoclinic.org/comment/1164875/
> https://connect.mayoclinic.org/comment/1080366/
It’s wonderful your husband hasn’t noticed any changes in his health over the past year and a half. His doctor, noticing a downward trend in your husband’s red cell count, is wanting to keep that from going any lower. If it does go lower he may tire more easily or feel shortnesss of breath after exertion. The medication will help by specifically targeting and blocking molecules that prevent red blood cells from maturing, allowing them to mature properly for a healthy red blood supply.
That’s a lot of information to chew on this morning but I really hope it’s helpful. I’m here any time you need a sounding board. Sending a hug to you and your husband! How long have you been married?