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

Hi Lori-
Thanks so much for your words of encouragement!
Yes, having a plan is reassuring as well as knowing you & this group are here.
Fortunately, my Dr said I could get the infusions at Houston Methodist The Woodlands, which is a lovely facility closer to my home. I will also be able to do tele visits with him.
I don’t really mind driving to the Texas Medical Center, but if I can avoid the stress of traffic, then I’m all for it!
I’m trying to take it one day at a time -SO hard for me to do! But, it’s really all we can do.
Good to know we can talk more about the BMT as mine gets closer.
Diane

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

Good morning, @bettersleep68 Getting the go ahead for the bone marrow transplant is great news, though I know it comes with a heavy load of anxiety. I’ll be here, along with what I affectionately call my BMT Posse to get you through it from our side of our computers!

What questions do you have that I can help you with? Are you near the transplant center? Have you gotten the information as to whether you’re an in-patient at the hospital where this takes place? How long will you be required to stay?

It is not a bone marrow transplant....it is a bone marrow biopsy checking the blasts..thank you for all your positive thought

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?

I had a SCT 18 months ago at the age of almost 74. I was healthy until my AML diagnosis but did not have any physical issues with the transplant. My current medication is a vitamin pill. However, at this point in my recovery I am still experiencing fatigue. Some days I feel absolutely normal. Other days, I need a nap! I eat well and exercise daily. Is this normal?

Hi @bacher, Welcome to Connect. Congratulations on your SCT for AML. I’m happy to see you here for several reasons. First, you’ll find a strong support system with many members, including myself, who had a BMT/SCT for MDS or AML. It can be so reassuring to be able to speak with others who have gone through the same process…and we’re at varying stages post transplant…some with a decade + and on down to newbies.
The 2nd reason is another new member, @girlmidget, just joined this morning. Her husband, 73, has MDS/progressing to AML and he’s concerned about going ahead with the tranpslant. So you could be a very good source of encouragement for them. 😁

Your recovery sounds like it’s been right on schedule and at 18 months, you’re pretty much back to normal. From my chats with fellow SCT friends and members here, no matter where we are in our post transplant journey, we have days like you’re experiencing….perfectly normal, energetic, productive days. Sometimes days or weeks in a row! And then whooompf, the wind goes out of our sails and we have a day or more of lounging, napping, reading.
From everything I’ve been told with my BMT at Mayo, this is normal and to be expected. Sometimes related to the SCT itself, and that most of us are also at an age where we would routinely be tired and need a break after many days of working at full speed anyway. We tend to pin causes on our SCT…and rightfully so. Because when you think about it, the transplant became a new marker of our lives. Before SCT and after SCT. Life isn’t the 100%same. But it doesn’t mean worse…just, different. ☺️ Plus we’re alive and enjoying a 2nd chance with life that we wouldn’t have had otherwise.

I’d love to have you tell your story right here in this discussion. It’s a great place for anyone to read about how you came to require a transplant.
You’re welcome to share any tips or words of wisdom that you feel would be helpful or encouraging to anyone going through cancer treatments or the bone marrow transplant process. I started the discusson about 4 years ago when I was almost 2 years post translant. My 6th rebirth-day will be the end of June. By sharing our positive stories we can be lifelines to countless others.

How was your AML discovered?

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.

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?

Thank you so much for your response. Your kind words and guidance are so appreciated. I reached out to dabls6 to see if they wouldn't mind sharing their journey with me.
This is not usually like me at all, I myself am a very spiritual person and would not make it through the day without my faith. I know every day that we have each other is a gift and never to be taken for granted.
I'm getting a little ahead of myself and not taking one day at a time. As soon as we revisit the doctor and receive the results, I will have a better understanding hopefully as our next steps.
My husband and I have been married for 39 years this coming April.
I thank you so much for all of kind informative posts and your responses. You have a very special gift and thank you for paying it forward. My big girl panties are on now.
Sincerely,
Sherri