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

Hi @skibum486. This will be a great discussion for your upcoming adventure into the land of BMT. You’ll be able to join fellow Chimeras (those of us with 2 sets of DNA) who have weathered the trail and will welcome you with encouragement, inspiration and honesty. This isn’t always an easy journey but definitely one worth taking for a 2nd chance at life.

I have to ask about your @name…ski bum! Downhill or X-country?

Lori,

I LOVE your post. My work has kept me so busy unpacking and sorting I am tired when i get home. I forget i am using my laptop at work still and i could post if i remembered.
I do need to check on my fellow, as my NP says you can try again after 1 year. I love that you named your Robbie. My NP had some be a match donors may have only donated to get something free or be allowed to attend an event. BUT, our donors took the call to give their cells. That makes them special. It is possible they could eat junk, but equally possible they could be healthy and fit. We had 2 donors at our reunion; one was a 20 plus yr European and his fifty something recipient. I forgot the other as we did not see their honoring, I will need to see the social media post like all others. I did get myself near the front of the group shot, quiet possibly being elbowed out by the 1 yr toddler next to me who insisted as a director he would have had this group shot done a long time ago. He did pose and focus on the camera.
The fellow i met when i arrived to register listened to my story and i listened to his, or what he would share. He asked me how i know so much about the tranplancet process and i said Mayo Cluinic and other AML/MDS patients. He then told me he was a pastor, and he felt God had brought him here to be there for his people. He would understand being a transplant patient himself. I met the other lady i approached as she was wearing a hat like me. She has AML and 1 year ago had a transplant from her sister, but it returned. She is back to continue treatment with hope and possibilities.
Lori i have also not had a cold for a year. Not that i had many, but geez Louise I am fighting off those students' germs in the office like crazy. Three out of the seven regulars have baby kids. Germ carries!!!
This transplant got me out walking and drinking my water. I slacked one day and i felt sluggish. Half my body weight which makes it 82 ounces.
What a life and a 2nd chance to do some things different.

Hi Sherri! It’s been a bit since we’ve chatted. I wanted to drop by this morning to see how your husband is doing with his MDS treatments. I know you were very worried when we spoke last. Has he had any improvement with his blood numbers? And how are you holding up?

Hi @clareaq, I just wanted to follow up with this discussion…we never connected again after your consultation on May 13th of 2024. I’m chagrined that this slipped past my notes…or my old brain? Here we are a year later and I’m wondering if you’ve had your stem cell transplant?

Good morning toddler Kathy, whom I affectionally call Kat. I always look forward to your posts and transplant updates about life with those ‘20-something’ year-old male cells’ running the show now. I’m sure the young man who donated those stem cells had never thought that one day he’d be a life saver! And what a life he saved!

He’s gifted the world with Kathy 2.0. An amazingly resilient, tenacious, funny, empathetic and caring woman who makes a huge contribution to the world around her. I can’t wait for you to meet him some day, Miss Kat! I hope he’s open to that. It’s been just shy of 6 years since my transplant. My donor still wants to remain anonymous. I know he owes me nothing, but I owe him everything and would love to thank him in person. I do hope you get that privilege.

Don’t you wonder what he looks like, or his personality? What motivated him to donate? I think about that all the time and thank ‘Robby’ every morning…that’s what I dubbed my secret donor. He was 20 at the time so he’s (we are) 26 and probably matured out of Axe pit spray, greasy pizza, cheap beer, frat boy, girlie mags under the bed by now. 😂

I bet you do have your donor’s blood type. Mine used to be B+ now it’s 0+. Besides that change, I also no longer have a seasonal allergy to ragweed or a sensitivity to almonds! Did you have any allergies before? Notice any changes like that?

What a time of reflection for you, having come through the milestone of the first year after a bone marrow transplant. I’ve said it before but you are the poster child for how this should all go! I’m so happy and honored to have been part of your journey. And now, here you are, filling a mentorship role yourself with guiding others along their new path to a 2nd life. Next year, by this time, you should be considered out of your terrible twos and into adulthood! Ta dah! Big girl panties. 😂 With your cute reddish brown curls I can picture you bursting out with a chorus from Annie…🎶The sun will come out, tomorrow…🎶. Have a delightful day, Miss Kat!

Oh my goodness, I read through the last 1.5 months. What journeys we are on. I sprayed out my keyboard on my laptop and it has stopped the sticky keys. The spraying this time worked as the sticky keys have been with me for months off and on. This reminds me of our bodies. Weird pressures and aches that we may just brush them off as no big deal. I had an odd ache with my breast cancer i thought may be caused by a funky bra fitting wrong. Possibly a few months with that ache till i found the lump. Genetics, chemo and a possible pill got me to the MDS door. As i have said, if i had not been a platelet donor for 25 years, my blood numbers not improving may have gone unnoticed. I was wanting to donate platelets again, so i was watching my numbers.
Looking up MDS i found Mayo Clinic and their website. They spoke of treatments as i was hearing about them at the City of Hope. One day i noticed connect and found that i could register. I was not a patient there, but Mayo is known for transplants and look what i found like you found!! A fellowship of people who "get it". Lori leading us down the BMB/BMT path. The humor. I had her humor in my head during my first 30 days in the hospital. Then during the first 100 days.
Now day 394. 100 % donor. I do ask God to keep Kathy out of the marrow area. She was kicked out for mutations, and she is no longer a guest. June 6th i will have the blood test that shows my blood type.
One more thing was i was told my hair color may not return. It is not exctly the same, but it is reddish brown and nice and curly. Toddler Kathy is here.

Good morning, Elizabeth. The results your husband is having with the Vidaza is pretty encouraging in reducing the cancer cells.
As for the continued transfusions, that is out of my area of personal experience. But your husband still has bone marrow. Otherwise he wouldn’t be making red or white cells. His other blood numbers rebound during chemo cycles so it shows his marrow is still functioning. However it isn’t able to produce enough platelets because it’s compromised.

In healthy bone marrow, there’s a fine network of fiber on which the stem cells can divide and grow. Specialized cells in the bone marrow known as fibroblasts make these fibers.
Chemicals released by the cancerous cells over-stimulate the fibroblasts so instead of a fine network of webbing, they create thick coarse fibers in the bone marrow, which gradually replace normal bone marrow tissue. Over time this destroys the normal bone marrow environment, preventing the production of adequate numbers of red cells, white cells and platelets…in your husband’s case, it’s platelets. Doing a little research this morning, there have been trials of drugs for reducing fibrotic tissue to help with the treatment of MF and other conditions. Not sure if they are on the market yet.
But this is a good question for your husband’s oncologist as to whether he can expect to see a reduction in his transfusions once the inflammation caused by excess cancer cells is reduced. Could this potentially make a difference in his platelet production?

Lori, I wanted to update you on my husbands progress of his myelofibrosis. He finished his 2nd round of Vidaza chemo, we went to his monthly checkup appointment with his cancer Doctor at Levine cancer center the doctor was very pleased with the results. He is showing less cancer cells in his blood, in the beginning he had 18 blasts, it is now down to 5. We are prayed for continued good results. He still has to have platelet transfusions twice a week our local oncologist keeps a close watch on this. Since he has no bone marrow, I don’t understand how he will get pass the transfusions. Maybe you can explain more on this.

Sometimes I do not spell check enough. As i tell students in our office, some words have different meetings. Know and now for instance. I know what you did and now it makes sense.
When i reread something I wrote i find word mistakes like this which is good. It is a reminder I see it and mindfulness before posting will help.
I work with former foster youth, formerly incarcerated students as well as mainly facilitating the training for Resource Parents, formerly called Foster Parents, that need training per the DCFS. It` is not surprising these student populations may have more challenges. A number of young women come back in their late 20's with a baby or two. Owning up to where you are and how you can and will do better if you are willing is what i believe.
I posted this as my NP posted in my notes from the Friday visit that was is back to work. Fully back in person. Since July of 2021 I have spent 2.5 years working from home. Did I do all i could have done to fix up my home? Not really. Cancer care with its drugs and treatments affects you in ways you see in hindsight. Not living with anyone puts no restrictions on my time. I volunteered a whole lot during this time. Being a homebody is not my thing.
I love hearing about husbands and wives her lovingly support their spouses.

I was told since measles area a live vaccine, i cannot have it till i hit 2 years!! My vaccine this time was 4 with one being a cousin of the flu.
I got to talk to the NP. I have found this 2nd time with the Hematology team that Hannah knows my story Like my breast oncology NP did. She can let the Dr. know through the chart. All mt blood numbers are good. She ordered the blood test to check my blood type next month.
It was wonderful attending the reunion. My neighbor went with me and my brother joined. All of us came on the train. We had ginormous buttons and i walked up to a dozen long term people and 1 year like me for stories. I was such a joy to know i was one of 20,000 transplant patients around possibly 1000 or 2 others. We could bring 2 guests, so that was good. In line for lunch, I talked with an enthusiastic HLA research dr. She loves being part of the team that gets to see the 100% match come to fruition. Reminding me the many Drs, NPs, Scientists that make a transplant possible. This is one of the times i google. HLA was known to me as 2 times when i donated platelets i was an HLA match for patients. When i think about that know, a transplant donor I could not have been. Age for first but not male either. 600 plus sets of platelets went to people and that was my donation.
Grateful for this site, that lets me be part of hope for BMT patients.