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

Yes, tomorrow at 9:20. Will keep you posted!

Hi @drawlings0803 It’s a good thing you had the biopsy so that your doctor could get a firm diagnosis for you. Now you can start the treatment you need to get ‘back to business as usual’. As @katgob mentioned, there are different levels or subtypes of MDS. Some variants don’t require a bone marrow transplant and can be managed with medications. So your meeting with the new hematologist will be informative for you.

You probably have some questions for the doctor. I’ve found it can be really helpful to write them down in a little notebook that you can bring along to your appointment. I tend to get off track easily and my notebook is great for not forgetting my questions. Also, taking a loved one or friend along is a good idea for an extra set of ears. ☺️ Being larger medical facilities I think either TMC or MDAnderson are great choices for your care.

Thank you for this update! I hope you feel comfortable with your new doctor and look forward to more updates. Is your next appointment scheduled yet?

drawlings- Come back and post here their plan. Lori will let you know how it matches Mayo Clinic, and I will with City of Hope that i was treated at. What is the level of MDS? Low/Med/High? Mine was low-med when diagnosed.
I came on here to post something I did not read prior to treatment, but after. I trusted the process as my Medical Oncologist layered out the treatment plan. Brca2/Her2+ mutations found though a genetic test and a blood test, 3 different chemo drugs and likely Lynparza-

The American Medical Association: Rarely, some people treated with a PARP inhibitor have developed a blood cancer, such as myelodysplastic syndrome or acute myeloid leukemia (AML).

I did develop MDS. I am part of the rarely. The radiation Oncologist had told me i had a cancer diagnosis 2 % of the population has. Therefore, he said radiation would not increase my risk of stopping new cancer. My % i have now would be the same or withing 2% better with radiation. Since I had pancytopenia results with my breast cancer treatments, Lynparza was given to kill any remaining cancer cells. The radiation oncologist likely sealed in my head that with MDS, I would want the BMT. I went on the Bone Marrow Registry and found this Mayo Clinic Connect. From there, Lori and other walked me down the road to where i am right now.
It is amazing to me it has been nearly a year since my transplant!!!

Hi Lori - I told you I would let you know my bone marrow biopsy results. Just got a call from the Dr & she said I had MDS/MPN. I will be seeing a hematologist in the Texas Medical Center, about a 40 minute drive from where we live. I could go to MD Anderson, but my Dr felt like going to the Methodist Hospital would get me in sooner & get treatment started.
Just wanted to update you.

Those are fun names Lori. I have not planned anything, but i think i will. Go to the beach and enjoy the sand and all the beach surroundings. I look forward to the 49th Bone Marrow Reunion. I was getting treatment on that day last year, but i saw the crowds.

Hi Kat, A few names I’ve heard over the years in recognition of our re-birth days: Transplantaversary, Celliversary, Cellebration day, Celebirthday (like celebrity).
Have any big plans for your big day?

Thank you for this info, Lori. I feel very comfortable with my NP in the BMT department. I am getting the Gyno with a female at COH through the year anniversary tests i must complete. This year celebration has a name in the BMT world, but i need to go online to see the name. I am calling it an anniversary. It does sound interesting the way the primary office is a bit different then the care we have gotten from our BMT departments. The new PA i had was just assigned to this Dr. I realized the primary i had gone to in June of 2021, was my first time at that office. I had the PA there and never met the DR. I suppose i will make a call at some point during this year, but so far i will be getting any scans and blood results in the coming month that will let me know my bodies current condition.
Mr. crabby pants. I remember going to a dermatologist for the 2nd time on the very day i gave up smoking. On that day the whole experience did not sit right. My prior Dr. was wonderful but moved. As i was leaving that day he said to make an appointment for 6 months. I thought for just a minute and thought, heck no. I left and never returned. I found a new Doctor. That day was the "Great American Smoke out" sponsored by the American Cancer Society. 1998- I quit that day and have never smoked again.
We find the Doctor that is right for us.

Good morning, Miss Kat! I seem to recall last year around this time, you were concerned you would miss out on future retreats like the one you attended this weekend!! I love seeing posts like yours that show life can return to normalcy after having a BMT. It just takes time and patience. Your first Re-birthday is right around the corner and you’ve have been an exemplary patient for your BMT team.
Going back into mainstream medicine for routine care was an eye opener to me. As BMT patients we get spoiled with our dedicated devotion with our BMT teams and oncology teams. I’m finding, not so much with my PCP. He gets a bit prickly when he has to defer to requests/orders from my transplant doctor. My local oncologist works really well with my Mayo team…no issues there at all. But my PCP is another story.
Until about year 3 post-transplant, my local oncologist was my primary care physician but I was still having 3 month followups at Mayo. So basically anything I needed was done through Mayo. When I finally went to the primary care clinic where my family has gone for years, I had a new doctor, to me. I introduced myself and let him know I had a BMT and explained that he would be part of my care team. My ‘boots on the ground’ locally but that he may have to defer to my transplant doctor from time to time. I asked if he’d be ok with that. I realize this puts him in an awkward position of not necessarily being ‘primary’. But our primary doctors need to be team players. So when my transplant doctor put in a direct order for a medication that my primary doctor didn’t want me to take, my primary got prickly with me.
We had a long face to face talk and hoped we reached a truce after he said he now understood better why I was given the medication and he’d work together in the future.
Well, that was last April. Since then I’ve had 2 occasions where I’ve contacted that office for assistance and there was no response at the time until about 2 weeks later. That wasn’t helpful! 😅 I ended up both times calling my BMT NP and got immediate help.
I have annual PCP visit coming up in a couple weeks. I’ll see how this appt goes. If he’s still going to all Dr Crabby Pants, then I’ll opt for another clinician in the office.

It is comforting to know our BMT teams, in most clinics, are dedicated partners for life. We are forever changed with a BMT but we can have full and much appreciated 2nd lives ahead of us. We just need some special TLC from time to time.
I’m so happy for you, Kat, that this year has been such a success story. Wishing you continued wellness!

Hi all, I have been out and about at a retreat this weekend i attend yearly.
I had my check in a week ago and the Dr. said it was time to set up the yearly follow-ups. Pulmonary, Chest CT Scan, Pap Smear, echo, more blood panels not usually done and a couple more. Most to be done April 4th.
I had my breast ultrasound and no findings after my Feb 2022 tumor removal so that was a beautiful Friday March 14t morning result as i then headed to our local mountains for my weekend. Putting on chains and snow that made that drive more fun.
Since my transplant, that was my first trip out with 160 people for 2 days since April 9th, 2024. Wow.
My blood numbers were still very good although i did not drink enough water this last weekend so back to my usual once i got home Sunday. I want to add something. For my breast cancer follow-up i had a brand-new PA. The Dr was new to me 6 months ago. I realized this weekend I am going to have my yearly follow-ups with my prior MO who moved to the hospital my breast surgeon is at. This new PA was very kind and very knowledgeable, but she knew nothing about me. She had no idea i am at the 1-year follow-up with no active treatment necessary. She did not know until i said it that a bone marrow transplant is what i am being treated for now. Soon to move from active treatment to possibly 3 or so months apart for visits. My BMB is on April 4th too. My scheduler got my day filled so i only have one day for most tests.
What i did hear the PA say that was right on was that i need to go back to routine with my primary care physician. I only had gone there twice after i found my breast mass and was referred to COH. She said COH is a treatment hospital. For a cold and other care not part of my BMT care does not require the specialized care. That made perfect sense. AS my next breast ultrasound is not for another year, i have plenty of time to make the Physican connection and make contact with my prior Medical Oncologist who treated me through my 1st cancer.
I am a bone marrow transplant patient for life. That treatment will never change. COH i will stay.

Hey Kat!! You’ll be a great asset to the COH community with your positive experience with your transplant. It’s all about paying it forward…! Just think, last year at this time you were still trying to get things wrangled into place to be able to go forward with the transplant and now you’re in the position to be a lifeline for others. I feel like a proud momma bear. 😅 You were a rock star from the beginning.

Curious to see if you’ve ever considered a seeing a massage therapist with your stiff pec muscles. I felt the final piece in my healing post chemo for AML and the transplant was a visit to my massage therapist. I’d had a froze shoulder that miraculously disappeared along with other lingering ‘toxic feelings’ over that 2 year period post transplant. Having that massage, lymph drainage was a game changer for me. Just a thought… In fact, I saw her today after a 4 month absence. Right now I feel like a bowl of comfortable mush. 😂
We just returned from FL back to Wisconsin with a great weather window for the 3 day road trip. No issues! Now I’m scrambling to get caught up on missing Connect for several days. I also missed blood work for the past couple of months so I’d better get that appointment set up! Happy to see you’re continuing to do Fab-U-lous Dahling!! 🥰