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

Lori,
Thank you for the info. I read a little on the study, but as I am reading I am thinking this is another way to help myself and others in the future. You have written the simple fact it will be helpful. I never read volumes on my original chemos for cancer. I did not have many of the side effects. I will take this a day at a time again. A procedure pill or the effects of.
I know at the Red Cross if you have Hodgkins lymphoma, chronic or leukemia you can never donate again. I was looking at my app yesterday as a way to see what I had donated already. 634 platelet donations. I looked at my platelet numbers of 333, by blood pressure and number of visits.
I realized without the choice, I changed my Red Cross family to a COH family. What I thought would get me back to the RC after breast cancer, actually shot me off in another direction. And all of it is about blood. Blood donation in college, and platelets for the last 25 years.
I will sign the forms and email back today. Thank you for responding today.

Good morning, @katgob, it’s great you’re participating in a study. I was in several myself. It’s our way of being able to assist in the forward growth of cancer treatments.

Graft vs Host Disease or GVHD is a side effect of a bone marrow transplant. To help you understand what that is a little clearer, when a person has a solid organ transplant, they will be on immunosuppressants (anti-rejection drugs) for the rest of their life so that their immune system doesn’t reject the organ.
When we a bone marrow transplant, we’re getting someone else’s immune system (the graft) and it wants to reject our body (the host). It looks as our body as an invading organism and wants to do what any healthy immune system does…take out the offender! Eventually, we are able to get off immunosuppressants as our new immune system learns to recognize the foreign proteins in our body. But in the meantime, it can create some issues and the new graft needs to be suppressed or held back from being hyper active for a while.
That’s where the Itacitinib comes into play. It is an immunosuppressant used for mild GVHD. This will be a really good trial for you to be involved in.

I strongly suggest not reading too much information about the drugs you’ll be taking. I know knowledge is power but in this case, reading about these meds can put fear in you that isn’t warranted.

As for donating blood in the future. That you’ll have to check with your doctor. My transplant doctor told me that is off the table for me. I cannot donate blood or blood products.

Hi @marylou329, I just posted a reply to you! We just overlapped! So here’s the link to what I wrote in another discussion. You’re in the perfect discussion right now so stay with us, ok?!
https://connect.mayoclinic.org/comment/1001138/

Tacro is titrated to 0.5 now but prednisone has been increased slightly.

Dana Farber is a top notch facility and I'm sure they will take very good care of you.
Good luck in your journey and wishing you well.

Hi Lori,
Alex's symptoms involved synovial effusion in his right hip and also edema in both ankles. He now has a clicking noise in the affected hip joint and experience is difficulty walking.
He is being referred to a rheumatologist. We'll see.....
It's a relief to me to know that this response is to be expected in some cases but getting to the root cause would go a long way in explaining symptoms.
I really appreciate your ongoing support!!!!! Hugs 🤗

I will be having a BMT in a few months for MDS. Is there any advice you can provide me? It will be done at Dana Farber and My husband and I will have to relocate for a few months. I am having a lower intensity BMT and it's done outpatient, but I have to stay close by to the hospital. I'm in the process of conditioning my body as well as my mind for this long process and know that God is on my side and will Take care of Me.

Hi Anita and Alex, If it’s any comfort at all I react to most all the vaccines now, even 4+ years after transplant. I seem to develop some type of inflammatory response which can last for 2-4 weeks and then it settles down. My response usually starts about a week or two after the vaccination with neurological symptoms. This includes Covid vaccines, influenza and recently, after waiting 4 years to finally receive it, my MMR vaccination. This one was the most pronounced.
Many people have similar reactions to vaccinations and right now, being so early after his SCT Alex’s immune system isn’t predictable so he can have changes in his blood work and symptoms from many different factors.

VEXAS is pretty serious autoimmune condition and generally involves a mutated gene. That would be a far stretch at this point so soon after his transplant.
So let his team work through this with him. Has he made any changes to his medications lately, such as reduction in his tacrolimus?
What are his symptoms?

Hi Lori,
This new year has presented Alex(us) with new mysteries without answers. Initially, he was doing alright with BMT recovery. Then he received a Flu shot and "things" started going downhill. I'm now suspecting that he has VEXAS. I've just recently discovered this condition and am waiting to hear back from Alex's BMT-Team. Any thoughts?
Thanks,
Anita & Alex

One day at a time.