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

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 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 🤗

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.

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

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/

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.

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.

You’ve done a great service over your lifetime for the Red Cross and hundreds of people who benefited from your contributions! That’s amazing! It’s ok to take care of yourself now and look for other ways to pay it forward. ☺️

I think you’re feeling the same way I do, by participating in studies it ultimately helps people way beyond our personal orbit! So thank you for doing that! You may be asked to do more as time goes on. I was in a psychological study as well as studies for latent viruses and a couple others that I can’t recall. But it felt good to be part of those statistics.

I figured to add here. It is March 26th and my date to start my conditioning is coming. I am surprised at the flurry to get me in to test and then this week, I message the team and they said they are scheduling the infusions. Are they doing this so routinely that checking in is not deemed necessary? Really? April 2nd, I have labs. docs visit and my pic line put in.
I have told more people and by taking the advice of my supervisor, I walked to our AD building to request a meeting with our HR person. Diversity, Equity and Inclusion. I needed to talk with her about my time off. I spent nearly an hour talking about life. I learned a bunch about her. I told a lot about me, nothing secret but matter of fact about my treatment and my family and genetics. All of this could be found in my medical records.
I work for 3 more days and then I am done till i get home time. Work from home.
For COH as I said above, do they do these infusions so often they do not think checking in is necessary? So right now, I am playing with my hair. The ringlets and all that i have, as I will likely get it all cut off the end of next week. It was just hitting my shoulders; two years it took to grow back from my last rounds of chemo. I told the "Positive image" center at COH to find a wig like my current hair please and when they cut my hair, put it in a bag. It has come back my same color, curl like when I was young and very soft. I am praying to God to let me have my hair back. As it is......

Good morning @katgob, These last weeks before a stem cell transplant go very quickly. And the transplant process itself starts 7 days ahead of the actual infusion of stem cells.
You had the pre-testing which is routinely done at least a week or so ahead. So you’ve passed all those tests and are now cleared for the process to begin.

I think you’re caught off guard a little by timing if I’m understanding correctly. I know your transplant day is April 9. In transplant-land, that’s considered Day Zero.

But the process will start one week ahead with the installation of your line and the start of the preconditioning chemo; April 2nd for you. Then you count down daily from Day 7. Depending on your schedule, each day may have chemo or another treatment. When you get to Day 1 that is generally a day of rest between chemo and transplant. From my experience I was in the hospital with IV bags of fluid being flushed through to remove toxins that day…no chemo.

After that, on Day Zero, you get the infusion of Stem Cells from your donor. It’s all anti-climactic really, considering the hype involved leading up to it. It’s just like any other infusion dripped in from an IV bag.

I’m so sorry about the loss of your hair…again. I lost mine 2 times ahead of the transplant with all the months of chemo for AML. I had my long hair buzz cut the day before I started my chemo. I took charge and felt pretty empowered. My daughter was there when the woman from the wig shop in the hospital came up to my room to do the deed! It grew back in spurts after each chemo cycle. Then, about 10 days following the preconditioning chemo for the transplant I lost my cute little 3/4 of an inch long sprouts that had popped up. But it all grew back! I actually didn’t mind being bald. It was the easiest hair style I ever had. ☺️. But I also didn’t have to return to work so I can understand wanting to have a wig to feel like your current hair.

I know there’s a ton of details to get squared away before you head to the COH. Are you all set with what to bring along for you lengthy stay? Do you have friends to water house plants and check your house? Will you hold your mail or will someone pick it up for you?