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Considering No ASCT - Your Stories?
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Hello everyone and thank you in advance for reading and any input you can provide?
Has anyone had any experience or information related to after induction therapy opting not to proceed with a ASCT although eligible and it was recommended? I understand the standard of care and process entailed therein however have not heard much detailed information or testimony as to why anyone opted not to proceed with ASCT (what factors lead them to were that decision). What was their outcome? I am trying to balance both side of the coin. I am scheduled for my ASCT consult on October 15th at the Mayo Clinic. Any advice or information is greatly appreciated. I want to ask all the right questions and explore all options and avenues of care.
I am 55, was diagnosed with Multiple Myeloma on July 9, 2025. To my disappointment I learned (in preparation for an evaluation with a MM specialist at Mayo) my hematologist/oncologist identified my diagnosis date as 5/22 and test results support the diagnosis on this date. However I was not verbally informed until 7/9, after a PET Scan on 6/17 and a bone marrow biopsy on 6/19, that I have Multiple Myeloma and started induction therapy on 7/16 with the 4 drug regimen D-VRd. I am a good patient and believe in medicine and my drs and follow instruction/advice to the tee.
It is true that anyone with Multiple Myeloma should have a MM specialist on their care team. I will continue to receive my induction and the hemotologist/oncologist at MDAnderson however the MM specialist at Mayo will coordinate and headup my care.
I was informed by my Myeloma specialist that I have Kappa Light Chain MM. I would have been high risk based on chromosome t(4:14) but that alone has been downgraded as of June 2025 by itself. I am Stage 2 . My kappa light chain was 3646 on 5/23/25 but dropped to 14 as of 8/30/25. I was experiencing side effects of waking up with crusty eye in the morning and nueropathy. The MM specialist believed stopping the bortizemib would be beneficial as it has done what it needed to do and continued use could have more adverse effects therefore I completed 2 cycles of the D-VRd and started the 3rd cycle with only 3 medicines; Darzalex Faspro (every 3 weeks), Lenalidomide (21 day on and 7 off) and dexamethasone (40 mg a week-all at once). Both the crusty eye and nueropathy have reduced significantly since I stopped the bortizemib. The MDAnderson team advised me they do not agree with the MM specialist's assessment but they would make the adjustment and let's see what happens ...
I overall feel good. I feel much better now that I have the MM specialist on my team. He has answered all my questions and understand my disease in a way the others did not. He has answered all my questions and has been able to explain and answer ever question I had where they others could not. I am sleep challenged and I gained 5 lbs. but otherwise I am ok.
I am that can do person. However I realize I need to be extremely proactive and informed in this case with my Myeloma. I want to be the co-pilot versus a back seat driver and plan to educate myself and utilize the amazing resources and network provide by the HealthTree Foundation.
Denise
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