Bone marrow transplants for CMML

Even though getting this news is devastating, and there are hard days ahead, there are also brighter days ahead. You will have a lot of support at the Gift of Life house (transplant house) from others going through the same thing. I don't believe you qualify for the Hope Lodge. We have stayed at both places, and both are great, simply because you have the support from others going through it. We were given a lot of information, and CD's to watch. Please remember that everyone is different, and your son being young has a lot going for him.

I have seen someone who had a 5% chance of making through the transplant make it.

Thank you for your hopeful reply. My son's chemo has started, and in fact round 2 starts next Thurs. We are lucky to have a room at the GOL Transplant House. It is amazing and has given us the gift of hope again.

He is going to have an allogenic transplant.

Thanks for that.

Yes . He had some kidney and peri carditis issues and was hospitalized for a couple of weeks. The kidneys have improved, hos peri carditis chest pain continues, and he has grown strong enough to move to the GOL Transplant House in Rochester. He will have round 2 of chemo next week. We're hoping for smoother sailing.

Is the allogeneic donor related? Either way, it is a long road. Your son will become weaker and sicker with the chemo designed to kill off his existing bone marrow. Once he receives his donor cells, he will begin his climb back, very slowly. The biggest risk during the entire time his infection, followed by a graph versus host disease. He will be monitored extremely closely, with bloodwork every day. I was hospitalized for four weeks for my transplant, but some centers don’t require that. Your son will be very very tired, have a little appetite, and have side effects like mouth sores, swelling from the steroids, and some, but not all of the predicted complications. Once he’s well enough to go home, it takes many months to regain strength and return to normal activities. Sometimes graph versus host disease continues to be a problem and requires follow-up from your local center. Little by little he will regain his strength, but to become 100% can take quite some time. Please let me know if you have any specific questions. Warmest regards and best wishes.

I just found out yesterday that I have melody spastic syndrome.
I am in the slow - mid range.doing nothing, they say I have 5 years. The Dr. The had this example: if you have 6 Kathy's that do nothing. Half will pass away in those 5 years.
The other half? Who knows.

The doctor said I could wait a bit. I told him that having the Brca2 mutation and the TP53 mutation I do not feel confident I would be here past 5 years.
I already have a donor tested who is o type blood, a 25 year old male and a perfect match. COH is contacting the donor center to see if April is possible.
For sure my hair is still at my shoulders and I am 1 year off my perjeta/herception infusions and nearly 8 months from my Lynparza.
Chemo infusions in late 2021 for breast cancer. I think now is best as I do not have MDS yet. I will if I do nothing.
On the fun side, I was a platelet donor at the Red Cross for 25 years with A+ blood. Now, I will get platelets again from a donor and after my transplant I will have 0 blood. No more A in my body if all goes right.

Hi @katgob! You were in my notes to check in with you soon because I knew you had an appointment on the 13th.
With this new confirmation of MDS I can understand your consideration for having the bone marrow transplant while you’re feeling healthy and waiting until you start progressing with the disease.
From my understanding, it is the only potential cure for MDS. You already have a donor so that hurdle is out of the way. With all your donations for the Red Cross over the years it does seem rather fitting that you get a ‘gift’ of life in return. ☺️

Did your doctor concur about going ahead with the transplant?

Lori,
Yes the doctor yesterday said i am low/med in progression. But i told him i trust the scientists and doctors and their findings with my blood. I know all those years how high my platelet numbers were made my 98 # know something was wrong. The fact they were 140 and went down every time i got a blood test. My white cells were near 289 but never went up. My red cells are good. I was seeing the NP in my oncologists; office and she went on pregnancy leave in August of 2023. I saw someone else in September in the women's center but i did not have anyone who knew at what stage i was at or me. Two years of chemo's, other infusions and I felt lost. I did have the blood clot doctor and I decided to contact to ask them about seeing a hematology doctor. They called for me but it took a number of times for me to call to finally get the doctor assigned that i have now. In the portal, I noticed in the notes that after i saw him, and he got the results of the bone marrow biopsy, he emailed the top transplant doctor he works with and discussed it with him. Yesterday the dr was happy I did decide to do it. It is what they hoped i would do. I do not have MDS now. Getting a 25-year-old males' blood is like the young male you received. Young and hopefully a good product my body will accept. They are contacting the donor to see if April works for him. I believe a part of me is in disbelief that i have breast cancer, a double mastectomy and now this. Yet because of this is why i told the doctor i do not want to wait. My hair is barely to my shoulders and i still have one good wig and a whole lot of hats.