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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori
What diagnosis brought you to a BMT?
How has it impacted your life and that of your caregiver?
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Hi Diane, ha, your doctor is a peach isn’t he? I’m sorry he’s not the warm, fuzzy type. I had one of those, too, for my local oncologist. My goal was to get him to laugh…but then I realized his focus was on my health and his concern in making the right decisions to get me into remission…which was serious business. Now that I only return to see him twice a year for active surveillance, instead of acute chemo care, my appointments are much different. There’s laughter, recollections, and discussions about cancer treatment advancements.
So I guess ultimately we’re not going to be BFFs with our doctors but we do have to feel that they have our backs and willing to make the right decisions for our care. (But warm and fuzzy would help!)
BMT, because it is literally life altering, of course it comes with risks. But out of all the people that I’ve helped mentor over the past 6 years, both locally and in Connect, I can only think of a couple of people who ultimately had outcomes less than hoped for. And there were extenuating circumstances with those patients such as serious co-morbidities or blatantly disregarding post transplant guidelines or refusing to take meds. (The last two patients were local to my hometown) Carelessness cost them. There are so many variables that can impact our stories.
You’re healthy, in remission and in a good position to take on this challenge.
Things which can impact a patients smooth recovery are; being compliant with meds and guidelines, keeping a positive attitude, reporting any health changes-large or small to your care team, getting up and walking daily-even if you don’t want to go more than 10 feet, and trying to be mindful about eating protein rich foods and also drinking the suggested amount of water daily, 8-12 cups daily.
I’m so happy you’ve gotten a donor and everything is on track. This is truly the gift of life! My donor was a 20 year old male from the US. I wrote to him several times over the years but have heard nothing from him. I’m a little disappointed that he chooses not to respond. Of course, he owes me nothing but I owe him everything!
I’d love to say thank you in person or to let him know the impact his gift has made for me and my family! I literally would not be here today without him! So yes, write to your donor and I hope you get a response. You won’t be able to meet or know who he is for 2 years. After that, you can both choose to initiate contact. I know of so many patients that have gotten to meet their donors and it’s so emotional!!
For now, think of your new little minions winging their way across the Atlantic Ocean, via courier! They’ll be unleashed into your blood stream and will stroll along the walls in your veins until they find the little specialized pores that magically allow them into bones. They’ll engraft in the marrow, set up housekeep and then those stem cells will do their jobs of developing into red cells, white cells…need those neutrophils! And of course, platelets…and then, you’re back in business. I thought of my new cells as exactly that…minions. Ever watch the movie? Haha.
Ahhhh Lori so good to hear from you.
Yes, I am a ball of nerves. Yesterday we went to sign consents & go to an after-you’re-discharged’ class.
It was overwhelming! Sensory overload! I like my Dr but I wish he would say things like your Dr said to you. I feel like my dr’s approach is more ‘dry’; he focuses on the side effects, GVHD, etc. Maybe a little too much. I asked him yesterday ‘how about some success stories? That’s what I want to hear’! Oh yes- he had those, too.
And then I get a visit summary on MyChart today & it’s got all this stuff in about tools used to evaluate mortality, what my ‘score’ is & so on. Well I could’ve gone all day without seeing that.
But, to not go forward with the transplant would not be wise for reasons you, I & others have already discussed.
Found out my donor is from Poland, a 24 year old male. ☺️. I can send him a thank you note through my team if I want after I receive the cells.
Yes, I am scared silly & just want to get on with it. Sure am I have y’all to talk to!
Good morning, Diane…just breathe… I know you’re holding your breath the next couple of days and clenching your tummy muscles, right? The anticipation is the worst.
It really does seem to melt away once you’re enveloped in the atmosphere of your BMT care team. Instead of being on the ‘outside looking in’ you’ll be part of the tour, just along for the ride. There’s something soothing about no longer having to make the heavy decisions. My team, especially my doctor, encouraged me to let go of any worries. To let him and his team worry for me. That it was his job to take over any concerns so that we (husband and I) could just focus on healing and recovery. That was the best thing he could have said. I never lost a night’s sleep because of worry and felt the full competency of my team.
I’ll be thinking of you Friday and beyond…as you embark on your journey, seeking a 2nd chance at life. You’ve got this gurl! I’m here, along with our BMT posse, ready to toss a lifeline whenever you need! Sending an air hug and positive vibes of strength, courage and humor. ☺️
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3 ReactionsHi @dawnmarieyoung I just wanted to follow-up with you to see if you caught my reply to your question about BMT for Myelofibrosis. Here’s the link in case you missed it: https://connect.mayoclinic.org/comment/1356747/
Have there been any more discussions with your doctor regarding the transplant? Any target date planned?
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1 ReactionThank you again. I’ll be in touch with everyone in the weeks to come.
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4 ReactionsDeb,
Thank you so much for sharing your rationale for getting a SCT now & not waiting. Yes, just because I’m doing/feeling good today, doesn’t mean things couldn’t take a turn for the worse, & then the disease burden becomes a barrier to better outcomes.
I’m not going to Google anything else before going into the hospital, I promise. I think we research things that only end up scaring us. I’d rather read about all of you who had good experiences during & after the SCT.
And I do believe, as you & Lori said, that once you’re admitted to the hospital, you kinda breathe a sigh of relief. It’s just all this anticipation that’s killing me. I actually had a therapist years ago who suggested naming things you see, hear & smell, I had forgotten all about that! Thanks for suggesting that.
So - moving forward, you all have helped me so much today. I was putting off starting to pack some things for the hospital stay, bc that would make it all too real. But now I’m ready to do those things & feel much much less anxious.
Thank you! 💜
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6 ReactionsDeb has said it. The absolute skill in the transplant unit is amazing. Right now, I am getting the chills. I cannot believe I am day 490 after transplant.
Never for a moment was i left and even in the middle of the night when my vital machine buzzed a nurse was there. The DR team who was there every day for updates from me and to give their updates on my progress. I would ask my nurses how long they have worked in this department, and they would say years. I asked the best of the PA's how he loves his job. He has been in transplants for years. At COH it is Floor 6, the transplant floor.
My brother was my family who visited. He meant the world to me to take the time to come visit and do my laundry.
All that Deb and Lori will say is so right. I have a tight band of ladies i shared with and Lori and others here on Mayo gave me the low down on my journey with a BMT.
A day at a time all things are possible. Acceptance to go on this BMT journey is yours.
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8 ReactionsHi Diane -
I am 61 and 9 months post allogeneic stem cell transplant for eosinophilic leukemia. I am also a nurse so I know how we can overanalyze all options and it can feel overwhelming. Making the decision to move forward with the sct was very difficult for me because I felt really good and my cancer was staying under control with a chemo pill called Jakifi.
The reasons why I decided to go through with it instead of watching and waiting:
1. You actually get the best possible outcome when you have the lowest disease burden and are in otherwise good health. For myself I have also had Lupus (SLE) and HLH (rare and serious immune condition that acts up with no warning).
2. I considered that if I had a serious Lupus flare or HLH flare then I would be really sick and in recovery for months and if my cancer also decided to act up and I then "needed" the sct, I might not be able to do it or certainly it would be riskier.
3. It was a matter of when not if I needed to have a transplant - so like you it is just a timing question - from what you said, it sounds like you will need it as some point. So the question we asked ourselves was what do we gain if we wait - the answer for us was months or maybe a year of feeling pretty good and living our life versus doing the transplant soon when I had a very low disease burden (only 1% cancer cells vs 37% when I started jakifi) and my lupus and HLH were quiet.
Before my transplant I also wrote into this group because I was so scared to move forward, so I absolutely know the feeling of being so scared to move forward. It's a risky procedure and it's scary the more you research it (so stop researching it lol). But for me at the time, I decided to move forward because I had to hope that I would do best with my low disease burden and was relatively healthy otherwise.
My recovery (except for persistent fatigue) has been better than average and I'm very glad I did not wait. In hospital I only had nausea and fatigue not all the other things you hear about, and I have had no GVHD. I mention all this because I am usually the one who gets the rare and bad outcomes, so if I can have a good outcome I feel like it's possible for anyone.
Also want to add, here are some things I did in the days and months before transplant that helped with anxiety and made me feel better about proceeding:
1. Get a good online therapist. Also consider natural supplements, teas or prescription stress relievers.
2. Baths and walks were a great stress relievers. Also for immediate stress relief - a)name 4 things. you see - like red sign, green grass, black car, whatever b)3 things you hear c) 2 things you smell. This short circuits the stress response and helped me to not burst into tears - lol usually I only had to do the "things I see" part and I felt better.
3. Have a couple of friends you can call to vent about your fears.
4. Have a get together with friends and family so you get to see all the people who are important to you.
5. Take a wonderful trip if you have time.
6. I also found a book called Radical Hope very uplifting because it emphasizes that people with tough cancer diagnoses are recovering all the time and gives tips to try, without being overwhelming.
7. I will also tell you that on the day I was admitted when the central line was put in a calm feeling came over me and my anxiety (which was very high) vanished upon admission. I wish this for you and there is a good chance you will feel this way because the sct staff are so knowledgeable and watch you so closely that you will feel very well taken care of.
I hope this helps. You've got this Diane!
My very best to you,
Deb
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13 ReactionsExcellent advice - I needed to hear this today! I have officially told my nurse self to sit down & be quiet. And you know, I had never looked at all those health issues I’d been having as signs I needed the SCT! I mean, it’s so obvious looking back on it!
I had breast cancer, too, 17 years ago. Dr said my MDS is ‘secondary’, meaning the chemo & radiation I had for BC most likely caused the MDS. But who really knows & at this point, what difference does it make? It is what it is.
Like you, I had very few side effects from the BC chemo & radiation. And I tolerated the Dacogen this year well. So I’m hoping, with a positive attitude, the side effects from this procedure will be well tolerated.
I feel better today thanks to you & everyone on this blog. So good to know y’all are here.
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4 ReactionsHi @anitasharma I’ve been thinking about you lately and curious to see how your husband’s recovery is coming along. I’m hoping all is well and that you’ve all been able to enjoy the reunion with your children and his parents after the long absence!
Recovery from his bone marrow transplant, at this point, should just be a matter of slow, steady gains in stamina and re-entry into a more normal life again. You’ve all certainly had a tumulus year and I’m sure you’re ready to get back to feeling more in control without all the medical drama. ☺️
When you get a chance, I’d love to see an update!