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I also was part of a research study to lessen the chance of GVHD. Tacrolimus was added to the Itacitinib. I received a message in my portal from the research team at City of Hope that the Taco pill was to stop at day 65.
Today is day 66 after transplant. I had my normal Friday checkup today and my wonderful RN read my message to her about it and had my answer. They had emailed DR. Malki, the study director and talked about tapering me off the drug. WHEW!!! I felt a bit nervous to be asked to immediately stop a drug that quite possibly is helping me not have GVHD. My Dr. and his RN emailed him. I asked my RN if he replied, and she said she was not sure! But the Doctor said for two weeks take 1 pill in the am and pm. The next week will be every other day. This may change, but for now it is a plan i am happy with.
Also, I asked to change a liquid drug Mephron I was taking and after 50 days got a pill called Bactrim. It is to stop infection and a few other things.
Another item for me, with one week in, I realized the Bactrim was affecting my kidney creatinine level. It went up on my visit Tuesday and back to .9 Friday. I only take the Bactrim Saturday and Sunday am/pm. My RN said she thought the same thing. I told her i would work to have more liquids Sat/Sun/Mon. See if my 1.1 goes down to .9.
This is the road of a transplant patient. I read through the research study timeline, and I found by doing that it feels a bit overwhelming thinking of what I might get.
As I started today, it came to mind my Dr. team is there for me. I will be followed up in about with the same timeline for my transplant recovery. Honestly, I thank God every day, that I can eat well, get out and walk a lot, work again from home and enjoy the last 34 days in my caregiver's home.
I told another patient today at COH about Mayo Clinic Connect. She had asked if I am part of a support group and I said this site is one of my support team. I have another set of friends, family and others I just need to ask. I was very independent with my other cancer 32 years ago. For MDS, you cannot have a bone marrow transplant without a caregiver. Period. I had to let a core group of people know. I just asked all to not post on social media and they have not.
dwolden.....there is hope. Lori always says transplant patients are bonded with their med team. The RN is often the one we know best. Hope. I have hope if I keep doing what i am asked to do during my recover, I will be able to handle and support from anything that may come up. Just for today? I am doing ok.

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Replies to "I also was part of a research study to lessen the chance of GVHD. Tacrolimus was..."

Hi @katgob. You’re making great strides with your recovery. Amazing you’re able to start your Tacro taper already! The dosage changes you noted are standard for the taper. You don’t want to quit cold turkey. A slow taper will also allow your team to monitor you for any signs of gvhd. This tapering is also the time to make sure you keep notes and report to your team any new symptoms or changes in your health…no matter how large or small. My dream team, ‘tongue in cheek’ joked that they wanted to know even if I got a new hangnail. 😅 Since you’re still in the 100 day window post transplant, being at day 66, gvhd symptoms can escalate quickly. After that 100 day window, any symptoms tend to be subtle and develop more slowly. But still warrant reporting and possibly treating.

We do need some gvhd. It’s proof that the new defense system we got installed from donor cells is up and running. That’s the goal behind getting a new immune system. It will again start recognizing the irregular or cancer cells brought about by MDS. But you don’t want to take any chance of letting a reaction get out of control.

I remember how thoughts of having a ghvd reaction were a concern for me early in my transplant too. My doctor and my bmt team explained I should anticipate developing symptoms of gvhd at some point. But reassured me with certainty that they’d handle whatever developed …and they did! You have an amazing team behind you so just keep on following the program outlined by them. Thank you again for another inspirational update! ☺️