My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

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?

Hi, Lori.

I absolutely love your sense of humor that clearly shows in this post as well as others that you've posted. In addition to that, you are always a fantastic source of information, experience, encouragement, and inspiration. I appreciate you very much, and I'm sure that many others on Mayo Connect appreciate you, as well. 💕

Lori
Having my bone marrow in April
I hope I get good news

Oh my gosh, talk about a brain ‘fuuffff’. I totally went rogue with this one…sorry about that! We’ve had a few new transplant members in the past couple of days so that’s where my head was! So, we’ll bring this back down to a BMBX instead of a BMT. 😀

This bone marrow biopsy will be a good source of information to see if there was success with the chemo. I’ll keep my fingers, toes, and eyes crossed for you for a clean biopsy!
I remember you’d been dealing with back issues that had interfered with the start of the next round of chemo. Were you able to continue with the 2nd session?

Oh my…@my44. Thank you from the bottom of my heart for this incredibly sweet message. It is a warm and fuzzy feeling to be appreciated. I’m so awkward at accepting complements but deeply moved when I realize I’ve be able to help someone or maybe brightened their day. Humor, sometimes inappropriately (😅) has gotten me through some of the seamier moments in life so I tend to inflict it on everyone else. Can you imagine my poor family. 😁

Here I go running off at the mouth again. Cutting to the chase…we’re all on this planet together and I truly believe it’s so important to help each other with compassion and understanding for what they’re going through and offer a hand, an ear or a shoulder…

I also appreciate you for being such a caring and active member in Connect. You’ve had your own medical drama and use your life experiences to support and encourage to members, too. We’re all part of an amazing group of people who are the helpers…an honorable role in our society.
So, thank you, Tif. Your appreciation is like a warm hug. 💞

Great news! I am 351 days past transplant, and minus my very short hair, I feel great. Keep us posted. April 9, 2024, was my transplant.