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

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.

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?

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?

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?

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

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?

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

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

Hi @drawlings0803. I’m so glad to hear you had such a great visit with your new hematologist! Having someone that you feel is in your corner can make all the difference in the world.
The treatment plan is pretty standard with the goal of getting you into remission so that you can go ahead with the BMT. You’ll have a BMT team who will take excellent care of you wherever you’re having the procedure. And you have me, along with other members like @katgob who have had a BMT for MDS who will walk you along the path from the other side of the computer.
When you get closer to having a target date for the transplant we can talk more about what to expect, how to plan for an extended stay at a clinic, the transplant itself and recovery. It all feels intimidating, I know. But this is doable and gives you an all important second chance at life. Makes it worth the few months down time. Lots of lounging. ☺️

I hope you have a great weekend now, too! I always feel better and encouraged when I have a plan that allows me to move forward. I think you’re feeling that too.
Are the infusions at the clinic that’s 40 miles away or are you able to have that done locally?

Hi Lori -
Wanted to update you on my visit with the new hematologist yesterday.
Well I absolutely loved him! He explained my MDS-MPN is most likely related to my chemotherapy treatments years ago. That said, he said let’s go forward with treatment.
I will start chemotherapy with Dacogen on March 31. I think I’ll have 3 rounds of that. It’s 5 days in a row, then I take a break for maybe a month (I think). Then, he said definitely a BMT would be done. That’s several months away right now.
I felt so much better after visiting with him yesterday and although it’s scary facing chemo again, I’m optimistic and very happy there’s treatment for me.
Any advice on your BMT experience would be appreciated!!
Thanks and hope you have a great weekend!