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Shipmates,
I was diagnosed in 2021. Received my SCT in 2022 and have been in remission since. I’ve been on monthly maintenance therapy of IVIG, Darzalex Fastpro and Zometa every 3 months. I was wondering if any of my Shipmates no longer receive any monthly maintenance therapy while in remission. If you’re on monthly maintenance, what is your therapy? Have a blessed day and weekend.

May 29
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Answer Summary

Members generously responded to a question about maintenance therapy during remission, sharing a wide range of personal treatment plans... Read more

Members generously responded to a question about maintenance therapy during remission, sharing a wide range of personal treatment plans including Revlimid (Lenalidomide), Darzalex Faspro, Velcade, IVIG, Zometa, Xgeva, and CAR-T cell therapy. Several members noted that their doctors adjusted frequency over time, with some eventually stopping maintenance altogether after sustained remission confirmed by bloodwork. A recurring theme was the importance of working closely with your oncologist to weigh the benefits and side effects of long-term treatment, with fatigue and neuropathy being the most commonly shared challenges.

A MyMyelomaTeam Member

If your blood work, mine is annual, shows no sign of MM then we're saving about $37,000.00 from not using Revelid, alone, PER MONTH. That does not include the other chemos or damage caused to your health. I've been off chemo since 2010 with annual bloodwork.

I'm 84, shooting for 100 with both knees replaced. and 6" of spine lost. They can't make me 6'1" ever again.

Just for the grins, Google ProPublica: the price of remission.

Show this to your oncologist. I hold him in the highest esteem, like mine.

Chemo saved my life! Now it's expensive used 'toilet paper,' worse, it's toxic.

It's unlikely my MM will return. If it does, I'll get a new roll of 'toilet paper' for only as long as I need it.

This, too, shall pass.

May 30
A MyMyelomaTeam Member

I had a terrible 2024 with SCT and heavy duty drugs and chemo. All the nasty side effects and on opioids.Was using a wheelchair and crying in pain. I was in severe pain and wondered if it was worth living considering maintenance meds made me suffer, too. I was only in remission for 11 months. I qualified for CAR-T and I feel blessed. Next month will be 12 months in remission. And no maintenance required so far. I have plasma cell leukemia and it was aggressive. Now I just have mild neuropathy, fatigue and constant diarrhea. But I have Crohn's, too, which causes diarrhea. I'm happy to be alive.

May 30
A MyMyelomaTeam Member

I had a stem cell transplant in 2023 and now in remission ever since. I take lenalidomide 10mg every other day. Blood work every month. Other wise I feel much better than before

May 29
A MyMyelomaTeam Member

Just a note I received stem cell replacement in Feb 2020. Since that time with routine bloodwork there is no signs of Myeloma.

May 29
A MyMyelomaTeam Member

I was on maintenance for approx 2 years. I've been in remission since 2020. I am not taking anything for Myeloma currently. I see my oncologist every 6 months accompanied by bloodwork. So far so good. See my oncologist in August.

May 29

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