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

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!

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?

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?

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

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

Hi all! I'm pleased to announce that there is now a support group dedicated to people wanting to talk about bone marrow transplant (BMT), stem cell transplant (SCT) as well as CAR-T cell therapy. It's a place to connect with others like you for support, practical information, and answers to your questions

@abdulhallim @agent007 @alohasteve @beckybrandsberg @bkerr01 @bscham @callie28 @capthondo @cat1952 @cioli @countrygirlusa @deajay @dkandalec @duttasujata @flightdeckjohnn @gaurav1414 @heathermcfarland @henriques @irishk @jcather @jeaniecm @jiminmorris @justnate @justpeachy @kaderbek @khnielsen @kjjjrader @lisal64 @maguiregirl @martetom @mikegordong @mmm123 @mtoyne2021 @nick0820 @papad @patientpainter @patty67 @rhamrin @secglc2 @shellcat25 @tml @william1970 @zellheff @5qdeletion @adkins @alive @bevprescott @cancerwarrior @caregiverx2 @ckeys @clareaq @dani349 @deb913 @dwolden @edb @evett @grandpabob @jan23 @jandm1813 @janetlen @javajude @jenmkr63 @joycek @jrwilli1 @katgob @kt2013 @lag630 @leilab1 @leukskywalker @lodi @loribmt @majid12 @mary612 @maryb13350 @omioften10 @ryanman0 @soonerfan @susancurrit @tedwueste @timt347 @tkidd51 @tmvanla @wakop @waveg @welshmark (phew, I hope I didn't leave anyone out. 🙂

Be sure to follow the group to be notified when new posts are made. Here's how:
1. Go to https://connect.mayoclinic.org/group/car-t-cell-therapy/)
2. Click "Follow" in the blue heading. (If it says "Following" then you're already following the group.

(Learn more about how to follow a group and more tips in the Help Center https://connect.mayoclinic.org/help-center/)

Ask questions. Give support. Most of all, pull up a chair and introduce yourself if you haven't already.

Hi @dwolden, It’s been quite awhile since we chatted. Your husband was just starting chemo for MDS in possible preparation for a bone marrow transplant at Mayo. How’s he doing with the treatment? Has there been a donor match and a potential date for transplant?