re: Bone marrow transplant w/chemo - anyone ever done this or know anyone who has?

My niece was diagnosed with T-ALL in December 2019. She finally entered remission in July 2020 and went through chemo and radiation before receiving a bone marrow transplant from her sister in August 2020. She is doing well now and seems to be very healthy.

My father was a leukemia candidate for bone marrow transplant in the infancy of the procedure 30 years ago, had a compatible donor, but would have had to go into remission and regain sufficient health in order to do it, and did not. So I am a registered donor, and give blood and donate to related causes.

The best I can offer is to remind yourself that if other people can do it, then you can too, and that the purpose of it is to save your life and give your loved ones more time to enjoy having you with them. My grandfather had a saying that I repeat when necessary: "You gotta do what you gotta do."

If you should start a GoFundMe or similar, see if the admins will allow notice here. Otherwise, post updates when you are able.

Little sis had non matching marrow transplant after full chemo and radiation almost 20 years ago. Still with us.

They have come so far since then.

Its going to be bad
You will falter
but just keep your family in your mind
you want to see those grandkids or kids running around well into your old age so just keep fighting
IT CAN BE BEATEN

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I did stem cell but essentially same thing. Ask me anything.

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Basically what I ask everyone - how tough was the treatment, meaning the pain and nausea, and what was the recovery like? Any long term side effects, how long did it take to feel semi-normal again?
I went through a tough regimen already and was saddled up with some tinnitus in my ears and neuropathy in my toes, kinda wondering if that's going to exacerbate that or if it'll be other stuff.

Autologous transplant here, back in 2016. I tolerated it rather well and am a actually typing this while on the elliptical. I am lucky that I had/have a great doctor and a great support group. The advice I received came from a lot of experienced doctors and researchers. Their advice prepared me and also helped alleviate some things.

Prep physically: get moving. Your lungs take a beating. Get those puppies in shape. If you’re skinny…add a few lbs. The more you can “afford to lose”, the better. Don’t be unhealthy though. Shave that head, get it over with.

Prep emotionally: you got this. It’s a hill, not a mountain. Maybe not a La hill, but nothing a person can’t handle. Does it hurt? No. Do you feel like shite? Sure. Do they have a med for whatever you’ll feel? Absolutely. Will your experience be as bad as you think? Only if you let it. Brother, make this transplant your bitch.

Physically what to expect: it’s chemo, you already know it makes you feel “different”. No different here. I was tired and it got a little worse as my stay went on. I did have a severe throat ache. Swallowing felt horrible. But, I used a spit suction thing and survived. That was the worst symptom I had. And do not try milk products when your throat hurts. They coat your throat and will staaang ha!

Don’t play around with the prevention stuff like breathing exercises and mouth washes. They all help to keep you out of trouble with symptoms. I also moved as much as I could. Do laps around the floor, make it a competition. Eat when and if you can. Resort to shakes if you have to. Your taste may get altered, so if you like something…eat it.

But hey….Superman takes a break from time to time. Don’t be a hero. If your nauseous, ask for meds. You hurt, ask for pain meds. You’re tired, take a nap. Don’t worry, the nurses won’t come on here and call you a liar if you tell us you didn’t need any of that. :)

Emotionally what to expect: I got really antsy wanting to get out. That messed with me the most. BUT…you have no immune system and you’re there for your own benefit. Unlike the argument about COVID precautions, this you should take seriously. Any setback because you went outside and took your mask off means you’re in there longer. Remember, long game here. You’re doing this to be here forever. What’s a few weeks in the hospital?

Getting up and moving, eating, keeping a positive attitude, all of these things will have you saying “ehh that wasn’t that bad.” When I was in there, I was in competition with some considerably older folks on who could walk more laps in a day.

And remember, you being strong is for you AND your family. They see you doing ok, they’ll follow suit.

What to expect after: not saying you’ll be hemmed up for a long time - bc you won’t - but don’t get frustrated if your fatigue and lungs take a while to recoup. You’ll bounce back just fine, just be patient. I did a triathlon one year after the transplant….granted, in the swim I had a kayaker following me bc, in her words, “yes…it looks that bad…” Ha! But I finished an 800 meter swim, 20 mile bike, and 5k run!

All-in-all, you got this. Is it something I would wish on anyone? Absolutely not. But am I glad I did it? Absolutely not. Ha.

Just know you CAN do it. It’s been around for a ling time and it doesn’t kill you. Just a tap in the nuts. Get it.

My son had it done when he was 10.
Was brutal but he has a badass mentality.

My friend’s teenage son had bone marrow transplant for leukemia about 15 years ago. Perfectly healthy at 28 now. I assume it wasn’t too much fun…. God Bless you.

My dad had a similar procedure five years ago, it’s kept him alive but his quality of life hasn’t been great. It is a remarkable piece of modern medicine though, no way he would still be alive without it.