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. ☺️

@loribmt you are so helpful. Thank you for the information. It certainly seems a small thing to reduce risk and potentially achieve remission. I have read no drinking alcohol or getting tattoos as well. Both of which are no problem. We do have a wonderful dog but I know my daughter would take her. I have an appointment with the BMT physician in September and have quite a few questions to follow up on. I went running around Como Lake this morning and thought how wonderful it would be to not have this anemia and run the way I used to for longer mileage. That would be a great victory for me. Thank you again for your help! I am also happy to assist in your mentoring if you encounter other Myelofibrosis patients. Betsy

Hi Betsy, If all goes as planned the anemia you suffer from should be resolved after a BMT. The bone marrow gets a clean slate to start anew.
Of course, there’s no guarantee that you’ll be able to run marathons after your recovery, which can take a year or so. Though I know of a biker who made it a goal to pedal the 100 mile marathon to celebrate year one. And another member here in the forum, just completed an epic trek to the top of a 14,000+ mountain at a little over 2 years post BMT. That news blew me away! At 71, I’m still very active, walking around 6 miles daily, also biking, exercising, weight lifting, and ‘some’ gardening…not like I used to. Full disclosure, I do have days where I completely plop. It may take a day or two to fill to refill the depleted reservoir. BMT or just old age?? 👵🏻
For me, personally, there were no other options available. So I did it for the moments I hadn’t lived yet. ☺️

Betsy, please feel free to jump feet first into any of the discussions in the forum and especially the blood cancer support group with your background with Myelofibrosis. We’re all here to help each other along through our shared experiences.
Enjoy your morning runs around Como Lake! My daughter lives near Lake Nokomis. Pretty areas!

I had 2 cats. I got my older brother and sister to care for them my 1st 100 days. Sadly one of my cats did not make it through their care. I stayed at my friends house and she did not have pets. She followed COH directions and kept the house as germ free as possible. At 100 days i went home and i did hang with my cat. The flea infestation had just begun. My brother and sister had no noticed. I went to follow up appointments with flea bits. My medical team was happy it was not a rash from GVHD. I only had one cat, so i wore a mask and gloves and cleaned the cat box. Kept my hands washed. If someone else can do that part, that is good. My cat had shots and flea control, so once i had our house flea free we were good. I started walking at my caregivers as soon as i got to her house. I did not wear a mask outside, I was not near people and my medical team said it was ok.
I miss my Hazel cat who i expected to see when i got home. I did have one of those very good eye filters and i keep that on and maintained still.
They encourage walking, the easiest thing to do as you start recovering. Ding ding. I too walked 6 miles or more every day.

Hello @drawlings0803
My husband 14 months out from his BMT for AML. We have a 26 pound doodle and we took special care to put a towel in his lap before she jumped up to perch or take a nap on his lap. She was very comforting to him to be near but we did both allow her to lick his face for the first 6 months to a year. I think she actually was able to get a lick in here and there because she is so fast (haha) but he was careful to wash his face afterward. We just used common sense to keep him safe including not allowing him to pick up her waste. Lots of hand washing and keeping the animal as clean as possible really helped. But he never felt deprived, nor did she I don’t think 😊 to share in their mutual comfort and love.
Our care team was very chill about the pet situation, again with careful management to keep her mouth away from his and his hands clean after touching her, and before eating, so we were grateful to have her with us.

Hope that helps. Wishing you all the best!

Mary

Hi Diane,
We have a dog that I love dearly. When I got home I did wash my hands every time I petted him and yes I did pet him a bit less because I got tired of washing my hands so much - but I did pet him. I think we let him back up on the couch after the 100 days. I had no problems doing it this way.

If your cat insists on being on the couch then maybe put cat, husband then you so it’s not against you,

On the topic of washing your hands, I was surprised to find that every soap in our house irritated my hands and finally found an unscented hand soap called Attitude Super leaves from Amazon - I mention this because my sweet husband went to a number of local stores and could not find unscented. Everyone is different and you may not have the soap issue.

On another note, I know a lot of people said their taste buds changed or they were slightly nauseous for months but I had none of that and could eat anything I wanted from about week 6 on; although I did eat less more often because I got full very fast. So just goes to show we are all different and you may have some or none of the various side effects you may hear about.

Please ask any other questions you have. I remember that feeling of all these little questions and I’m sure someone here will have experienced it to have an answer for you.

Good luck with everything. We’re thinking of you from here.
- Deb

Thanks so much, Mary! My husband is so worried about me getting an infection. Our cat is indoor only & I am vigilant with her flea meds, etc. I can’t imagine rehoming her for even a brief time.
Yes, I think using common sense & good hygiene is the answer.
Wishing you & your husband all the best.
Diane

Thinking of you today, Diane! Joining along with Deb, Mary, Kat and the BMT gang in sending you hug and ‘best wishes’ for smooth sailing ahead. 💚💙 (transplant colors!!).

Just sent you a PM. Hugs!

Good hygiene, covid style. My cats have been my buddies. Take it a day at a time. We are here to support.

Thanks guys! I feel like you are all here with me!