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.