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

Hi @dlrn64 Let me officially welcome you to Connect and the BMT group. We have quite a growing collection of us who have gone the stem cell transplantation to get us on the other side of a cancer journey.

Several have been patients at Mayo-Jacksonville for their BMT’s so I’d like to introduce you to @kidd51 @clock456 @caregiverx2 @avaleir, among others who can give you some inside info for that campus.

We’re all here for you if you have any questions or concerns. Are you all set for lodging? Caregiver? Donor?

I’ll be having a BMT tentatively scheduled on Aug 28th for Mast Cell Leukemia that I was diagnosed with on late January. This will be at the Jacksonville Mayo. I have watched YouTube videos and read others journeys with BMT so I have a better idea of what to expect so I can better prepare for what I can expect when I’m there. It won’t be easy, but I’m hopeful that this will be a long term answer to this cancer. I’ll post more as I actually am going through it. Thanks!

Hi Kat, @alive nailed the assessment of your doctor…the great, the powerful Oz, but always behind the curtain. Feels a bit deflating to sense that there was no personal interest in your case other than a checklist he had to complete. However, ‘he did his job’ providing you with a successful BMT, which is the ultimate goal, I guess. But when you’re going through something as taxing as the transplant you’d sure like to feel that there’s some personal connection with your team. Thankfully you really had some great NPs through your journey with COH.

Questions you might want to add to your list: Will I be seeing a doctor for my annual follow-up appointments? How long will I continue my annual followup appts?
If I have questions over the years, may I still contact my BMT team?
Personally, I value all of my interactions with NPs and PAs but when I come for a follow-up, I really want to see my doctor.

Just to touch on a couple of items. You mentioned not seeing your transplant doctor during the ‘event’.
When I had my transplant at Mayo, initially pre-transplant, I had several appointments with my doctor and various members of his team. But he did tell me that for the actual transplant process I would not see him for about 6 weeks. I’d be under the care of the transplant team in the hospital. My face must have shown a sense of disappointment because he quickly reassured me that he would be monitoring me daily, guiding the team from behind the scenes. If there were any changes in meds, labs or conditions, he’d see them and would be directing my care. Everything was run past him. He did drop by my room the night of my transplant for a quick visit, which was huge for moral support.

True to what he said, about 6 weeks later I was transferred back to his direct care and would see him or a NP daily, then 2x weekly, until my release 100+ days later. Each clinic/hospital will have their own protocol to follow. From my experience at Mayo and from other Mayo-BMT patients I’ve spoken with, there’s quite a lot of direct interaction between clinicians and their patients. Some NP/PA involvement but most of us have seen our doctors frequently.

The Survivorship guide: I don’t remember seeing anything formal? Each followup appt is the same. I meet with a nurse coordinator (NC) and then my doctor. There is a list of questions the NC goes over with me to check for health issues (emotional, mental or physical) gvhd, and if I need any prescriptions, etc. After that, then I see my doctor for a visit. He lets me know if there are pending items I need to followup with such as vaccinations, that type of thing. All those notes are recorded for me to review later. The rest is just catching up with personal stuff. At this point, I’m cured of AML, the BMT is successful and I’m expected to have a normal life span. I no longer will be having chimerism tests. But I will still have annual visits until I physically can’t get to Mayo. 😁

A really useful site that I should reference more often is the National Marrow Donor Program. I actually started a discussion about them a few years ago and should do more followup with that discussion. It’s such a huge support center for BMT patients! But for now here is a link to their survivorship support center:
https://www.nmdp.org/patients/transplant-support/patient-support-center/living-now/survivorship-care-plans-for-transplant-recipients
It can take a while to shift from patient to survivor to thriver and overcomer. It’s a process! Quite frankly if I wasn’t on Connect every day mentoring members with blood cancers or the BMT adventures, I probably wouldn’t think about what I’ve gone through much at all anymore. For some it’s more difficult than others if there is a daily reminder such as gvhd. Newer protocol are helping to avoid the worst of those side effects now. You’ve seen that in your own journey.

In the end the comment your doctor made about “Getting out and enjoying life” is the ultimate guide to survival post transplant.

Congratulations on being cancer free and GVHD free! That’s huge!

Your description of your doctor reminds me of the Wizard of Oz, the great, the powerful, but behind the curtain. That’s very unfortunate, since face time and communication is crucial for a doctor who is treating SCT patients!

I am almost 9 years post transplant, but initially had acute upper and lower GI GVHD and am now recovering from skin GVHD. My doctor is definitely more involved because of the ongoing monitoring of my GVHD. I see her every 3 months right now. She is very thorough and a good communicator.

I don’t know is Mayo uses a survivorship map for SCT patients, but as you prepare for your appointment, make a list of questions you have for your doctor. Otherwise, he will tell you: “You are doing great! Good bye!”

Today I speak about survivorship at 1 year past transplant. I am officially 464 days past transplant. My sister has told me at the same hospital in oncology that her Dr. is wishy washy. Further treatment post chemo is to make money. My hematologist? He is a man of few words. I was assigned to him in Sept 2023. I did not pick him. He walked me through the original BMB and the findings. Initiated getting me on the "Be a Match" registry until my perfect match was found. Set me up through treatments through the transplant coordinator. His NP was my contact. Having my oncologists and team through breast cancer, I had no idea on "Floor 6", the COH transplant floor that my hematologist would NEVER check on me. There is a rotating Dr team on that floor that I must say was top notch. Four to five arrived each morning. The head Dr i had well over 2 weeks is one i remembered. My Dr. later said he reviewed how i was doing from his office.
So, from day 30 after transplant, I went twice a week for 100 days to less days. I just moved after 1 year to monthly. Now soon to change.
My Dr does not do tele visits. I have had 2 scheduled, but he called me for both. They were about survivorship. Yesterday i was logging in for the visit and saw he called! I called him back and he was surprised i had not heard the phone. I thought we would have a tele-visit. Oh well. He is hard to understand on the phone. Once i received the report after, I too realized what my sister had said. This scientist Dr used as few words as possible to review my final survivorship list. Check- I could hear him say to himself. I am done with this patient.
His disposition: Patient will return to survivorship clinic annually. Call clinic or seek medical attention if necessary.
I have no GVHD or other side effects.
At Bunco last night a woman was subbing whose husband died less than 2years ago from MDS moving to leukemia. She told me last night he was also a platelet/blood donor at the Red Cross. It happened so fast, and he ask her if possibly he got MDS from the blood product donations? She told him she said likely no. What she said to me is that i looked healthy. I thought it was my weight, but she said it was my whole being. Her husband never got back to that.
So, now i want to have a list to take to my next visit Aug 11th. Are these visits every 6 weeks continuing? Survivorship only moving to annual? As i told my sister, the NPS are our links. His report on the "tele-visit" or phone call followed a list. His answer to those questions were either update/or follow up. I am throwing some questions in the portal before Aug 11th. He basically said i am doing great and need to get out and enjoy life every day.
Does Mayo Clinic use a survivorship plan mapped out into the future for MDS or AML patients?

Thank you for sharing your story

N

Lori,
Your posts have reminded me. My medical team does not really go over this with me. When I go in August, I will ask them what they tell patients. Even they seem fooled by my doing so well. I really appreciate all the details you provided on the air born illness out there. I will wear an N95 outside on my patio. Practicing living in respect and not fear is another mantra. I will guarantee that my November plane trip will involve a mask. I have no intention of opening myself up from this date to any type of GVHD out there. Reminding myself I am a transplant patient is not a joke for sure. Coming back to work full time had me thinking I was back to what is used to be.
Thank you for keeping me on my toes.

Hi Kathy, Just a reminder that people who may be transmitting diseases don’t always look sick. I know you’ve had most of your vaccinations but not sure you’ve had your MMR innoculations yet. Measles is the most contagious communicable disease and can live up to 2 hours in an airspace after an infected person leaves an area.

(https://www.nfid.org/resource/frequently-asked-questions-about-measles/

So while I understand your wanting to test out your new immune system, illnesses and viruses like Measles, Covid, RSV, along with fungal infections can cause a world of hurt or even be fatal with a BMT patient.
We don’t have to live in fear but we do have to live in respect of these diseases.
Another thing to consider, we are always at risk for gvhd. Even though you’ve not had any flares, sometimes an illness can trigger an unexpected gvhd episode because of the degree of inflammation from an illness.

So please, please wear a mask or have your neighbor clean up their own pigeon’s droppings. Psittacosis is a disease caused by bacteria found in bird droppings and usually impacts the lungs. I’m 6 years post BMT and still wear a mask any time I’m working in the garden, pulling weeds, deadheading flowers. But I don’t dig in the dirt or rake lawn/garden debris. That was drilled into me repeatedly to avoid. Just wanted to pass that along. I want you to remain safe. ☺️

Lori,

I will look to wear a mask in my back garden area when sweeping or doing anything with the soil. I did not wear a mask on the plane, as part of me wanted to try my new system. I had a window seat both ways and did not note sick people around me. I did spend most of my time outside and if inside I rarely jammed next to people. I stayed in my own room at night.
This morning the lung released the phlegm as i figured would happen. Oddly, I had few colds the previous decades before cancer, so this think made me feel like my old self. Not a transplant patient. That is what is scary. I need to gently tell myself and write on my wall calendar that i am a transplant patient.
My Follow-up last Friday was good. I had more of my survivorship tests like the urine and a few more extra blood tests. My neutrophils were on the lower side, so my NP felt this 'cold" i was in the middle of might be the reason. I did not have a fever or any other symptoms. Platelets were at 275 and all else was in the norm.
My hair is growing and as i continue to do well, staying on connect reminds me the road i traveled. I cannot forget i had breast cancer, the transplant follow-ups are now moving to every 6 weeks. My next BMB will be my reminder.