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

Thank you for this post. It is very helpful to hear about your experience as we are heading into stem cell transplant for my husband. Hope all continues to go well for you medically and your kitties get you back soon.

I am day 89 past transplant. Crazy. Coming out of the hospital on April 29th, I had no idea how the day-to-day would go. I was given guidance here on this site from Lori and others who shared. Lori lays it all out for the new people waking up to knowing they have MDS or leukemia and wanting to know what will happen. I got to hear about my pre-testing to qualify for my BMT and the hospital and the process many transplant departments use for a bone marrow transplant. All the info was more relevant as it was from someone who walked through the procedure themselves. The booklet I received and the nurse and social worker I talked to had talked from a procedural perspective. Here I got feelings. What would likely take place and how to take it a day at a time. Real experiences like fatigue, nausea and more. To always keep the nurses and the morning visiting Dr. posted. They cannot take action if they do not know.
Just for right know, I have had good results, I am being weaned off a drug I took twice a day since transplant. Also, the other drug I got day 5- 100 has 11 days to go. That 2nd drug used to only be given when a patient had GVHD. Now it is given day 5-100. I was in a research study that gave me the other pill. Both pills to lessen the chance of GVHD. My transplant nurse recently told me that not everyone gets GVHD. My Dr. says they might want me to get something, so my body can fight it off.
Mysisster and brother have been caring for my cats the 95 days i have been out of my house. I picked up my car a couple weeks ago and saw my cat looked like she had fleas. Scratching. It came to pass that she is deeply infested. One flea shot did not work completely as she had mats all across her tummy. OH MY! I tried to work on it, but realized i could cut her. Tomorrow at 9:30 my sister is taking her to the vet. My girl Hazel needs to be shaved. I am thinking and hoping the vet clears the fleas off and trims her, but not entirely. I do have a 2nd cat who also will need the vet likely, but not till i get home. I will ask my sister to help me take him. I do hope my Hazel is going to be ok. She is 12.5 years.
What i know for sure is, i could not have had my transplant without my friend letting me stay with her. I also needed by brother and sister to do the best they could with my house and 2 gatos. I feel blessed to be good today, and hopefully my 100-day Bone Marrow Biopsy will have the results we want. The donor remaining a close to 100% as possible in my marrow.
BMT lets us look at life with the possibility there is a lot more still to come.

Lori and all,
I believe most transplant hospitals have a team that works together. I received a call from a nurse in that department who was checking on me!! She saw i was doing well and asked by a out the Tacro. What was I taking now and when was it ending. She also covered the other drug i was talking day 5-100. Itt is the anti-rejection drug that was paired with the Tacro. Well, she said in the past the drug i take from 5-100 days used to only be given when you had GVHD symptoms. Sometime ago they started giving it for most of the 100- day period. I am going to ask my RN if she knows how long COH has one this.
I asked the transplant nurse about GVHD. I said I have not had any symptoms and if I do not, does that mean I could get them later? She said no, some people never get them! You might be one who does not. On my 100th day after transplant, July 18th, I will have my BMB. We will see how much of my donor is part of me.
This journey if nothing else is a daily thing. My blood work stayed about the same. More water is helping my kidneys!! Seems water is good for all of us with these transplants. Flush out the meds and keep the kidneys from over working.

Too old to have transplant. No stem cell either😔

Mornin’ Katgob, Lookit you go! I love that you’re walking so much. It really helps speed your recovery along, I think. I walked all the time too (still do) and it really made me feel so much more alive and vital everyday.

A little more about gvhd (graft vs host disease). Before our stem cell transplants, we have our own immune system, with our original factory installed cells. That immune system’s job is to seek out invading cells such as cancer, bacteria, viruses and destroy them. It’s basically the driving force behind our good health.
When we have a bone marrow/stem cell transplant, we get someone else’s immune system. It doesn’t recognize our body at all! It looks at us (the host) as the invader and reacts accordingly. The new immune cells will cruise around the body looking for trouble…sometimes creating their own.

Our doctors do their best to find donors most closely matching to our proteins or HLA markers. Even so there can be some power struggles going on between us (host) and donor cells, until those two learn to play well together!
Eventually, our new cells start recognizing our proteins and adapting to the new environment where the two entities can play together amicably. It can take some time for the adaptation…weeks, months, or in my case it took about 2.5 years. As we joked in our house, despite my perfect donor match “the force is strong with this one”. But the transplant worked and has kept me very healthy.

If there are symptoms of gvhd within the first 100 days it’s generally classified as acute gvhd. After that it gains a ‘chronic’ status. Again, don’t live in fear of developing some gvhd symptoms. For the first 3 months I had no symptoms at all…which I thought was great! However, my doctor was getting concerned that there were no signs. We need some gvhd!

Signs to look for with acute gvhd, will be rashes, particularly on your back or stomach, arms. Nausea, vomiting, cramps.
If any changes occur then let your team know.

I’m so proud of how you’re breezing through this, Katgob, from jumping through hoops to find a support team post transplant to how well you adapt and roll to the changes in your life over the past months. You’re a force! Have lovely day!

Lori,
Thank you for this message. You eased my mind. I figured since I have not had any real GVHD symptoms, once i do, I would let my team know as soon as I know. I was reading over possible side effects and most seem like ones that may come slowly. I had these red spots all over my arms and chest, that an RN said were from the chemo. They went away in the week. That was with my breast cancer.
All of what you said I needed to hear. The part that I need some gvhd so my bodies new cells can stand up and fight. I am reminded as I read your post that what might and likely will happen, has help to handle with a phone call. My Drs. have listened. This Tuesday I will ask about gvhd. How would they like to be notified about new symptoms.
I wrote in my last post of my last cancer from 32 years ago. Ha! 2021. 3 years ago, this July I was diagnosed.
I walked 7000, 3.6 miles.
One of my caregivers was with a lot of people today. I went for a walk, she took a shower and had dinner. I came back and went in my room. They shower and change their clothes and lysol and all that to keep germs away when either one goes out.
Me, I look forward to hearing from more people. I find hope and possibilities as I read your posts.

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! ☺️

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.

Thank you for this story of good outcomes and hope! You are back at work 63 days post allogenic transplant?? That is fantastic.
My husband was diagnosed with high risk MDS in late November and we were referred to Mayo for transplant consult. We have seen the transplant doc twice and still waiting for pre transplant testing appointments. Your story gives me hope.

Yes, remote via computer and zoom!