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

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?

Hi @bharty615 Generally, a bone marrow transplant is reserved for extreme conditions such as leukemia, MDS,
Sickle Cell Anemia, MS, certain autoimmune diseases, etc., for when a patient has run out of other treatment options.

In your case of polycythemia vera, there are several, much easier and less risky options, such as a phlebotomy when needed and medications such as Hydroxyurea, aspirin, anagrelide, Interferon drugs~Besremi or Intron-A, busulfan (Myleran), imatinib (Gleevec), and ruxolitinib (Jakafi).

What treatments has your doctor suggested to keep your PV under control?

i have pv and was told that a bone marroe transplant would not be good for me it would kill me.

This has to be complicated when you’re employed…balancing sick days, vacation days and whatever leave you can take for recovery. I hope your employer is understanding and you’ll be able to ease your way back into your position.
Thank you so much for giving a shout out to your group about Mayo Connect. Maybe if they pop into the forum they’ll see people can make genuine connections without actually physically meeting. I feel like I know so many of you already that we could be friends in real life. What I love is the willingness of members to rush to the rescue of each other when we need support and encouragement. Connectd isn’t your average social media site. ☺️
I’m so happy that you’re progressing so well with your recovery. 52 days, more than halfway to the critical 100 day point!! 💕

Thank you, Lori. I was thinking as i wrote that GVHD was the correct, but i changed the letter order.
And thankfully my sick hours are mostly used, but i have number of vacation days left. I will use those sparingly.
i forgot to add I spoke of the May clinic connect at my BC.org zoom meeting yesterday. We were talking about resources, and I said Mayo connect has helped me through my transplant.
I have friends that like nothing but in person anything. They feel no connection unless they are with a real person.
I am grateful for all electronic media. It lets me meet people I may never meet in person, yet connect and share our lives in places like this forum.