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Bone marrow (stem cell) transplant support thread

Posted by ckeys @ckeys, Oct 2, 2018

I am five years out of an autologous stem cell transplant followed six months later by a reduced myleo-ablative allo transplant from my sister. I still have many side effects and would love to connect with other stem cell transplant patients who also suffer. I am a member of the blood disorders group as well as the pain management group and I’ve checked out the transplant group and then if I’m really meet the needs. Would welcome a discussion. My side effects include chronic pain – – both joint and generalized myalgia – – also chronic fatigue, mouth problems from GVHD and low immune system. The worst issue is unbelievable sweating, especially around my head. I had highly aggressive diffuse large B cell non-Hodgkin’s lymphoma but I don’t think that it really matters… A stem cell transplant is a stem cell transplant.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

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Lori, Volunteer Mentor | @loribmt | Apr 5 9:24pm
In reply to @lorieliebrock "@loribmt Thanks for your encouragement to all of us facing SCT. I keep coming up with..." + (show)
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@loribmt
Thanks for your encouragement to all of us facing SCT. I keep coming up with more questions and also keep learning that odd things going on with me are due to my myelofibrosis. I am a few months out from SCT due to spleen size and am currently taking Jakafi for that. I have been blessed to really not have had the expected side effects. When the MF was discovered the doctors kept asking are you sure you feel ok - my consistent response was I’m fine.

I am now reading through all the posts here and just wanted to thank you for the encouragement. I think my greatest worry is for the unplanned stress for my husband - we have been married less than a year so it has been a lot to take in and will be an awful lot for him to be my primary caregiver for the 100 days (I do have a backup person but he is insisting that is not necessary.). Do you have any preparation suggestions to make things easier for him?
Lorie

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@lorieliebrock Hi Lorie, Those months leading up to a SCT can be stressful on so many levels. Just the sheer amount of information is daunting and the logistics can feel overwhelming. But somehow it all works as the steps fall into place. Having the ability to speak with others who have walked that walk can sure help make the process less stressful. When I had my allogeneic transplant almost 7 years ago, I didn’t know a soul who had gone through the leukemia/transplant odyssey and it was pretty lonely. So that’s one of the reasons I’m here in Connect to offer that lifeline. ☺️

Don’t hesitate to toss questions out as they come up.
Here is a thread where most of us have been sharing our experiences over the years.

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
If you’d like, feel free to post your questions in that discussion. Then you can keep adding to the continuity of the conversation.
In the meantime, maybe I can help with the amount of caregiving expected. I’m not sure where you’re having your transplant or if you will be an inpatient or have recovery as an out-patient. If you spend the first 4 or so weeks in a hosptial, the roll of caregiver isn’t quite as demanding. If you are outpatient, there is more for your husband to be attentive to regarding your care.
Being caregiver doesn’t mean 24/7 for the 100 days. Usually the first couple of weeks are the roughest after the transplant for the patient. It’s very common to feel exhausted, fatigued and possibly nauseated, So it can be helpful, if not in a hospital, to have someone make sure you’re able to get up and around to use the bathroom, make meals/have food ready in a fridge when you’re hungry. It’s not like they can’t leave the house or leave you alone for a little while. You’re not confined to a bed. As near as I can equate this is you’ll feel as though you’re recovering from a really nasty case of influenza. It’s important for the caregiver to accompany you to all appointments.

Around the 2nd-3rd week the newly implanted stem engraft into your bones and set up housekeeping. They start making new blood cells again and noticble recovery begins. You’ll start feeling much better, less fatigued with greater stamina.

Below is a useful link to a Caregiver guide from Mayo Clinic. Protocols may vary with institutions but this is a great overview of the transplant process and Caregiver support.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/.
Goodness, I didn’t realize you’ve been married less than a year. This is quite a honeymoon period for you. My husband and I were married 45 years at the time I was diagnosied with AML and required the transplant. We were already close, but this entire medical adventure brought us even closer. Now we’re just about to celebrate our 52 anniversary. So I wish you smooth sailing through all of this.

Has there been a donor search?

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