Community post
Struggling With the Stem Cell Transplant Decision
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Hello, my name is Joann. was diagnosed with high risk myeloma in may 2025. I have Iga kappa light chain. I was diagnosed through bloodwork at my annual physical. I have always been very healthy, active and fit until now.
I do have 4 lesions, but have not ever had bone pain or fractures.
I also have 2 genetic mutations that are pretty serious. no organ damage. My LDH started in normal range and remains there. All bloodwork are pretty much in range. At least for now.
I have a hematologist and an mm specialist.
I just completed my first cycle of immunotherapy. ( velcade, Daratumumab, Dex, revlimad.
3 more to go. All my test since after completing my first cycle have been excellent.
My anemia is almost non existent and my m spike began at 3.6 when first diagnosed and is now <0.2. My immunoglobulin A went from 5, 903 to 277.
My kappa free Light chain has gone down dramatically as well. 2.14 to 1.06 in range
After the diagnosis, I was completely distraught as I believe so many people are.
But I have since then, accepted my diagnosis and trying to be more positive. I worry more about choices I will have to make after my 4 cycles.
Doctors are adamant about getting a stem cell transplant. I am so scared of that procedure. Recovery seems awful and such a long stay at the hospital. I have inquired about C Cart instead, If I go into remission and then proceed to relapse. But they still want me to get the stem cell transplant first. I live in Ct. And going to Yale smilow cancer center. I do think I should at the very least freeze my stem cells as a just in case.
The stress of me having to make that kind of decision is so overwhelming. I know I have time to decide but I can’t even enjoy any progress I have make during treatment. It keeps me up at night. I am really struggling to say the least.
I think I’m just looking for anyone who has been in a similar situation as me that could shed some light.
Thank you to anyone who has read my post. Best wishes to all for a healthy happy life.
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