I got some really good answers to a question I posted on the ACOR mailing list. They’re here, in case you missed them. My question was:
I have been wondering about complete response to a treatment, whether it be SCT or use of chemo, and the need for continued use of drugs or other treatment afterwards. I’ve noticed that some people have just Zometa or Aredia, while others will stay on a steroid or some other drugs. Once you have total remission, is it necessary to stay on drugs? My goal is to not have to take anything for as long as possible. Will that be a possibility for me?
I have been dealing with MM now for 7 months, and started treatment (after radiation of the hip) on a diet of Thal/Dex (200mg/40mg each day). Due to my own stupidity I had two 14 day cycles of Dex. that almost killed me (ended up with pneumonia).
While dealing with the Pneumonia (9 days in Hospital) I only had the Thalomide for treatment. My IgA went from 389 to 1100 over six weeks, but with no dex I felt like a new person. So, what am I trying to say — If you can keep the MM stable on a minimum of durgs with few side issues — go for it. However, I measure everything in quality of life. Existing vs Living is the issue for me.
Just taking the Thal did not stabilize the MM for me, but I felt like a human that could enjoy life and function correctly. I am now on VAD-T and my QoL after one cycle is poor. My doctor keeps talking about going for the golden ring while I am strong and the MM is low. But at what cost? My path is PST, but I would gladly trade that for a stable MM with minimal side issues from drugs such as Thal.
Good luck in your battle. One thing I have learned is that our fight with MM is very individualized. “Well begun is half done.” – Aristotle
Otto from Greensboro
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