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For High-risk SMM, My Oncologist Recommends RVd Treatment. At Age 77, QoL Is More Important Than Quantity. What If I Reject Treatment?

A MyMyelomaTeam Member asked a question 💭
Reno, NV

Have several co-morbidities for which I use 10 oral and 3 topical RX meds. Concerned about drug toxicity and interactions.

May 18
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3 Stages of Myeloma: Understanding Progression Read Article...
A MyMyelomaTeam Member

Agnes,
I have several co-morbidities also and think quality of life is more important. Most doctors are not treating patients with SMM. I have high risk SMM and have read that the only way to get treatment was through a Trial, but with co-morbidities, Trials don’t accept you. If your doctor wants to treat you, they should know the toxicity of the combined meds. Although sometimes they try things and if it doesn’t work, they change it. You are the one who will suffer, not them, so it is your choice to be treated or not. Do you want 2-5 more years of life and treatment that may make you sick, or would you like 2 years no side effects from medication, but side effects from MM. Most people with MM die from infection. It’s a choice I’m still debating.
Paula 🌹

May 18 (edited)
A MyMyelomaTeam Member

Agnes,
I watched my mom suffer through treatments for ovarian cancer. It was awful. I’m told MM treatments aren’t as bad but I read about side effects all the time. In the end my mom said she couldn’t tolerate any more therapy and lived another 4 1/2 years at Stage 4! She was able to enjoy grandchildren and great grandchildren. Before she was in bed and bald. After she was living life. If I only have 4 years left, I have to ask myself, what do I want it to look like? With MM, it could mean broken bones, but I’m not going to worry about that until it happens. I’m super sensitive to medications. I found out I have 2 genes that cause me to not metabolize drugs very well, so they become toxic in my body. I have a better chance of that killing me than MM.
Paula 🌹

May 19
A MyMyelomaTeam Member

Oh wow, Paula, you are an answer to prayer! I wanted to respond to your team invitation earlier this week and will still do so as soon as I can. I has seemed like my experience is somewhat different from what others with MM are facing, but your answer describes exactly where I am right now. It's a difficult balance, isn't it, between the options you mentioned? If I were 10 years younger, I would likely choose the first option. But at 77, I feel well, my chronic health conditions are stable, and I'm very much enjoying my twin grandson's activities (they are 10 years old). RVd treatment with no side effects and no drug interactions seems highly unlikely to me, and adding even more meds to counteract side effects is not an option. I would love to have 3 more good years with my grandsons, but no one can predict that, of course! I hope we can keep in touch. ❤️

May 18
A MyMyelomaTeam Member

RVD was not too bad for me. The worst was no sleep the night of treatment from the steroid.

May 18
A MyMyelomaTeam Member

Agnes you could also ask if it is possible to go ona lower dose or less drugs? Others on this site have started treatment at your age. All the best🙏❤️

May 18

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