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

I am at Day 63 post-transplant. I finally got back to work today. I will review with HR at the end of the month for the future.
I do not have disability at work, so I finished every medical hour i received. 2 Months' worth of time.
Let me say I had my weekly checkup today. I saw my usual NP. the Dr I do not see as often. I suppose i see him every few weeks.
I am doing well so far. The NP says very stable and very good at this time. My red blood products are just under the minimums. White cells, Platelets and Neutrophil's are good. Those they are most concerned with. I have another bone marrow biopsy at 100 days. We will then see if my donor remains 100% of me. I sure hope so.
I am so grateful I got to have this transplant at this time. My friend as my caregiver at her house, my older brother and sister carry for my house and cats. My sister gives my brother direction. Older sisters. Sometimes bossy. I say nothing as I could never have had this transplant without all 3 of these people.
I hope all people with MDS have doctors who listen. For me, I had a gene mutation, a pill like Lynparza i took for a year that has side effects with blood. A number of factors. Low-Medium rating for me. I had a very good chance of developing ALS. I did not believe a watch and wait was good for me. We must weigh out all factors. Coming to this site will give you every question you need to ask. Is a transplant necessary for me to lead a long life? What do you want? Above all else, know I will support you at any point on this journey-Katgob

I am a two time recipient of chemo. Rituxin bendamustin and then R Chop.
It's back again. Non hodgkins lymphoma.
I am going to start car t cell therapy. Bone marrow biopsy done.
Next step soon.
I am looking, listening, reading from anyone who has completed the
Entire treatment. Thx

Katgob, you are amazing and your recovery is stellar, I’d say! You were wise in pursuing your stem cell transplant before you were in a situation where your health had deteriorated. That can complicate matters. So having this done before your particular form of MDS morphed into AML was a brilliant move. I know you moved mountains to make this happen…to get caregivers lined up and everything squared away so you could have this life saving procedure.

Thank you for sharing your updates with us because your story is very encouraging for anyone about to have their SCT for whatever reason. It’s postiive stories like yours that offer hope to others. ☺️
When you say you got back to work today, I hope that means via computer?

Hi Brayton, we have quite a few members in the forum who have completed CAR T-cell therapy. Here is a good link to get you started where you’ll meet other members (or their caregivers) who have had the procedure.

CAR-T Therapy: Introduce yourself and connect with others
https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
Where are you having your CAR-T therapy done?

Yes, remote via computer and zoom!

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.

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.

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! ☺️

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.

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!