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

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!

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.

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?

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 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.

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 @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?

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

Hi Lori -
Wanted to update you on my visit with the new hematologist yesterday.
Well I absolutely loved him! He explained my MDS-MPN is most likely related to my chemotherapy treatments years ago. That said, he said let’s go forward with treatment.
I will start chemotherapy with Dacogen on March 31. I think I’ll have 3 rounds of that. It’s 5 days in a row, then I take a break for maybe a month (I think). Then, he said definitely a BMT would be done. That’s several months away right now.
I felt so much better after visiting with him yesterday and although it’s scary facing chemo again, I’m optimistic and very happy there’s treatment for me.
Any advice on your BMT experience would be appreciated!!
Thanks and hope you have a great weekend!

Hi @drawlings0803. I’m so glad to hear you had such a great visit with your new hematologist! Having someone that you feel is in your corner can make all the difference in the world.
The treatment plan is pretty standard with the goal of getting you into remission so that you can go ahead with the BMT. You’ll have a BMT team who will take excellent care of you wherever you’re having the procedure. And you have me, along with other members like @katgob who have had a BMT for MDS who will walk you along the path from the other side of the computer.
When you get closer to having a target date for the transplant we can talk more about what to expect, how to plan for an extended stay at a clinic, the transplant itself and recovery. It all feels intimidating, I know. But this is doable and gives you an all important second chance at life. Makes it worth the few months down time. Lots of lounging. ☺️

I hope you have a great weekend now, too! I always feel better and encouraged when I have a plan that allows me to move forward. I think you’re feeling that too.
Are the infusions at the clinic that’s 40 miles away or are you able to have that done locally?