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

@davi0937. Survivorship after a BMT is a huge topic and I plan on posting a new discussion. I’ve been challenged for time lately but it is on my to-do list. In the meantime an excellent informational site is National Bone Marrow Transpant Link. They have plethora of podcasts, informational articles, brochures, etc., on all things BMT.
This should upon in the survivorship section:
https://www.nbmtlink.org/?s=survivorship
To answer your specific questions briefly,
#1 no BMT, treat with meds. That will be a good question to pose to your hemo/oncol. There are tools they can use to help project potential risk levels and that can help with a decision to stay status quo or proceed to BMT. I know it’s a lot to think about.

#2 what life looks like 3-30 years. Well, I’m in year 6 and my life is 99% that of pre-transplant. Just more mindfulness with germs/sun screen/hats…. My husband and I travel, I do some gardening (though I ALWAYS wear a mask if digging in the dirt, planting, raking, etc…I do not take chances! Fungal infections in the lungs are nasty). I’ve not gone to a concert yet, but will if something appeals to me. I attend plays, workshops, meetings, etc., but I wear a mask.
Pets, I discussed above. But at 6 years out, the cat sits on my lap now without my wearing an over shirt. That was just the early months, Children…they are germ bombs! Measles is a huge concern right now and a newly transplanted patient will not receive their MMR for a couple years after. Measles is one of the most contagious viruses and can linger in the air for several hours. So extra caution around children. Your best protection is an N-95 and frequent hand washing.

As I mentioned in a previous post, we didn’t go through all of this to live in isolation. Our doctors and teams want us to live our lives to the fullest. ☺️

Diane and @davi0937 While waiting for other BMT members to pop in with their experiences with pets post BMT, I thought I’d toss in 3 websites with informational guidelines for ‘when you go home’. These are pretty standard throughout the BMT world.
From Mayo Clinic: https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#Infection_Prevention
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From Intermountain Healthcare
https://intermountainhealthcare.org/ckr-ext/Dcmnt?ncid=529712509
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Memorial Sloan Kettering https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant

At the time of my transplant, we were between pets…so it wasn’t an issue. I know many friends/acquaintences who had several and various pets when they returned home. They got along fine with some limitations for a while.
I spend a lot of time with my daughter’s cat and dog. They’re not allowed on my bed though. If the cat wants to cuddle I wear a large shirt that covers my clothing and remove it after snuggle time. (Toss it in the dryer for a while after). I don’t touch my face with my hands until they’re washed. Same with the dog. Frequent hand washing. Litter box should be someone else’s job for a 6 months or so. After that, just wear a mask when you clean it.

However, during the critical early months of transplant and up until you’re off immunosuppressants and have your vaccinations, pets can pose a potential threat to infections, bacteria, parasites, etc., because of the reduced level of immunity. Your new immune system, initially, will be that of an infant. It will mature over the next year or so. Keep in mind that your new immune system will never quite be as robust as the original factory installed model you were born with. But it works!

With common sense life can resume to a level of normalcy. We don’t go through all of this to live in isolation with no
quality of life! ☺️ Pets are family too!

@loribmt - in reference to the pet question above and overall survivorship plan question. I am running through my head the life impacts of 1) no BMT - using whatever drugs available to manage life expectancy with Myelofibrosis- side effects, possible new discoveries etc. vs 2) BMT and what life looks like 3 to 30 years out. Can you travel? Have pets, garden, go to concerts or other public events, be near grandchildren that might have measles or other diseases? What ever resources on a survivorship plan please send my way. Thank you!

Random question- how many of you have pets & how did you manage them once you came home after SCT? The discharge class I attended last week said they cannot sit on the sofa with you, or sleep with you. You can pet them, but wash your hands afterward.
I have one cat. She is indoor only. My husband cleans the litter box. I’m starting to worry about this. How big of a deal is this? Can you ‘catch’ something from them, or is the concern getting scratched? Curious to know what those of you with pets did.
Thanks!
Diane

Thank you again Lori, for your pearls of wisdom. I literally took a deep breath while reading what you wrote. Probably for the first time today. I guess my own anxiety can take over at times, & I forget that my team knows what they’re doing & it will be okay. And I look forward to meeting all of them, as I feel I will get more encouragement as opposed to just the ‘science’ of it all.
And it’s so good to hear the success stories of people you’ve mentored. Very encouraging! No problem with me being compliant! I’ve have been a good patient so far &
don’t intend to change. The discharge instructions were pretty straightforward. I have a house cleaner lined up for a ‘deep’ clean before coming home & ordered extra AC filters, those kind of things.
Exercising will never be a problem for me, I hope. I’m pretty addicted to staying as active as I possibly can.
On that note I’ll say good night until our next chat!
Hugs,
Diane

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. ☺️

Hi @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?

Thank you again. I’ll be in touch with everyone in the weeks to come.