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

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.

Hi Kat! Wow, 52 days already? That’s crazy how fast the time has flown. Congratulations on doing so well. There can be little changes along the way. You have to be flexible but you have the best attitude. Roll with the punches or whatever the phrase is. To get through a BMT you need to have sense of adventure, a sense of humor and to remain flexible.

Hah, you’re now a chimera, officially having 2 sets of DNA. I’m also 100% male and have my donor’s blood type. I suspect you’re seeing the same thing in your chimerism test. We want to see 100% donor and 0% recipient cells!

I agree with your doctor. Stay off the internet (except for Connect, of course!) 😉 Looking for post transplant info can scare the bejeebers out of a person. There is always a risk of developing GVHD. Graft Vs Host Disease when we have an Allogenic transplant. My doctor and his team told me not to fear it. That if I have a reaction, then they will handle it! And that’s exactly what they did.
Also, we want some level of GVHD. It is the entire premise of having the transplant. It’s called Graft Vs Tumor effect where the newly implanted stem cells (new immune system) will once again recognize the cancer cells. Your old immune system, with the MDS failed to recognize them any longer and that’s why the cancer cells were allowed to proliferate out of control. You had the transplant before that happened so it wasn’t as apparent for you. But that’s where you MDS was heading.

So again, Congrats and keep drinking that water. Tacro is another tough one on the kidneys so flushing is very important. Thanks for the update!! Air hug to you!!

Today was day 52 after transplant and i got to talk with the Doctor. Overall, he said i am doing well. Most numbers in my blood were consistently good although the white cells and those numbers did not come in yet. I asked him about some of the meds and asked how long i need to take Mephron. He said it would switch me to pills. Bactrim! He said for this drug, plenty of water is necessary, as the drug can affect the kidney.
Taken on Saturday and Sunday only. It has side effects of course, so i will see how those may happen if at all.
He read the report i saw in my portal that says i am 100% male. For now, he said, as we are only on day 52 and the body still can make different choices. He said as for HVGD disease, 40% of people with BTS have some sort of side effects. He then insisted I not go to the internet to look up all the symptoms. Not to send unnecessary worries through my head on what I may get. He also added that these side effect do not necessary end in 100, 180 or 2 years. It is always possible to have side effects. We just need to keep them informed.

I will say i have looked up MDS and read a number of posts on this site. I know from the bottom of my heart that I cannot predict what my body is going to do. I do know I felt a little nausea so a took a Zofran this morning.

I love reading abbout others who have supportive spouses who are able to assist. Not all of us do, but wish we did, so we find others. I have said I have 2 caregivers. My main one cannot cook at all. Oh my. I am making all my favorites as best i can from my WW app. Beans, veggies, fruit and whole grains. I have found through both cancer treatments that sourdough bread tastes the best. With or without butter. We find what works for us and we make it happen. Soon enough, I will be back in my own home.

I honestly say to myself every day that I AM A BONE MARROW TRANSPLANT PATIENT! Today I told the 3 nurses near the station, that i need to tell myself this is not the breast cancer. My body shows me that part of my health journey is over. Easier recovery without a doubt. This path has a much longer track for healing.
My supervisor is finally talking to the HR director Monday. I contacted her on May 6th. Most of my vacation hours are now used and I do not have Disability. I am not letting this bug me. I will take the laptop to my dr visits and do work while I am there. I have learned every seeming roadblock has a way to get around it. It is not always easy, but it is possible.
Grateful to be 52 days into it.