Preparing for consultation & BMT transplant
My husband is preparing for BMT transplant. All the side effects scare me, as caregiver. He has had radiation & shots & pills (targeted treatment) with very little side effects but the strong chemo is new to us. Dale had plasma cytoma that returned & is now MM. Consult, 3days of testing is coming in the next few weeks. Three weeks after that BMT transplant. My typing ability is poor so my posts are short. Any suggestions, support would be appreciated. I am terrified!
Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
About 2 hours to Rochester, MN. We are fortunate to be so close.
We live in Duluth Mn so
3 1/2 hours! Our problem is neither of us can drive. My husband is still rehabing from back surgery & I have never driven through the cities!
It’s really nice talking to you . I don’t know you much but your kind words become inspiration for me and my family . I really touched with ur feelings and genuine reply . My Son is 17 and daughter is 12 . They both are showing very mature kind of behaviour that giving me strength too . Thanks for your guidance and Suggestions. Really appreciated 🙏🏻
@chefra, if I've calculated correctly, your husband is now day 34? How is he doing? How are YOU doing?
I had my hair the first time cut in 2 stages. From the middle of my back to my shoulders, then 1 inch all over 2weeks after chemo started. For my transplant, i had the dept that cuts hair come to my room and give me a buzz cut. She left me just a smidge, then i put on a beanie cap and again had no worries of my hair falling out in clumps.
Last month When my husband diagnosed with ALL, got Biopsy Bone Marrow Test done. Leukemia in his body was 74%. After 10 Chemo the results comes down to 0.11%. He is getting every week chemo done now as outpatient also Lumber puncture.
My question is Does he still needs BMT ?? Is that required So that no chances remains for relapse ??Also what could be his stage of Cancer??
If anyone can share their views .
Hi @anitasharma. If I remember correctly from our previous conversations, your husband has AML, or acute myeloid leukemia. Depending on the particular mutations driving that disease, AML can be a little challenging to keep in remission.
Every day, we all have cancer cells circulating in our body. But our immune systems snuff them out. AML, can have some particular mutations, such as FLT3 and others, that essentially trick the immune system into no longer recognizing these cells. So the cancer cells are free to proliferate merrily along until they crowd out healthy cells, as in the case of your husband with 74% blast cells.
Here’s the tricky part. Some of these cells can actually go ‘dormant’ during chemotherapy and basically become immune to the chemo. This allows the cells to hide out in the body, only to resurface later. Then when they reemerge (relapse), the old immune system, again, doesn’t recognize them and the cancer cells are free to start proliferating out of control. Another thing that happens- over time, chemo can become ineffective with each subsequent round.
This is where an Allogenic bone marrow transplant (donor cells) comes into play. The goal is, with the transplantation of someone else’s immune system via stem cells, this new immune system will now recognize the cancer cells and snuff them out!
As for your husband’s AML, only his doctors will be able to tell you if he will require a transplant or not. There are some types of AML where a transplant isn’t necessary because the risk of relapse is low. Then there are subtypes, as I mentioned, with mutations where the risk of relapse is high. A bone marrow transplant remains the only potential cure for AML at this time.
I was just in for my 6 year post AML/transplant followup with my local hematologist oncologist yesterday who treated me for the AML. We had a long discussion about current treatments, research and progress in treating AML. While there are new meds on the market since I had AML/transplant journey, there is nothing yet to replace the BMT for AML. I’ve been cancer free for almost 6 years. The transplant journey wasn’t easy. But I’d do it again, in a heart beat, to have this second chance at life that I’ve been enjoying.
To answer your other question, from what I’ve learned, technically, there is no staging of AML. But the severity of the disease can be measured by the amount of blasts in the peripheral blood. Your husband had 74% at the time of admission, I had 85%. Both of our numbers were incredibly high when you consider we only had, respectively, 26% and 15% of any barely usable blood left. That’s as serious as it gets. He’s now down to .11% which is good but still showing some residual cells.
I also had several lumbar punctures. This is a fairly easy procedure/painless that allows the spinal fluid to be analyzed to see if there are any leukemic cells present, if the disease has crossed the blood/brain barrier.
My heart goes out to you because I know you’re so far from home and family. And being the caregiver for this AML journey with your husband is so difficult. When I was going through this I watched my husband age. As caregivers you feel so helpless as you watch your loved one suffer. You’re also carrying the responsibilities of decision making, household responsibilities and anything that used to be in your husband’s hands. You’re doing an admirable job! So please don’t lose faith that this will all work out. It takes time. Your husband has a great medical team who are being very diligent and vigilant in his care.
Have you asked his doctors is the BMT is still necessary?