Hi Angela, welcome to the team. We are glad you joined us. I was diagnosed with IgG lambda type myeloma, with high-risk genetics, January 2017. I had a stem cell transplant December 2017. I am currently on Darzalex Faspro, Pomalyst and dexamethasone. I am doing well. I get my labs checked in May. Hopefully this protocol is still working for me. My specialist says my next treatment wil probably be a Bi specific?? Blenrep I think? But your husband will have several options.
I think it is important to know what type of myeloma you have. The different types show different presentations. Please post your MM Story: Date of diagnosis, Stage of Myeloma at Diagnosis, type of myeloma and treatment. We are looking forward to getting to know you.
The International Myeloma Foundation, The Multiple Myeloma Research Foundation and Healthtree.org (Health Tree University) and Myeloma Crowd are great places to learn about myeloma. Getting a great myeloma specialist is recommended with this disease.
Hoping you find us informative and supportive. I have added you to my team.
That's a tough decision for sure. It's like you're between a rock and as hard place.😏 I would like to get off Pomalyst and maybe just do Darzalex faspro once a month. But it does seem to make my immunoglobulins even lower. A cure would be so nice. Prayers for your decision💕🙏
Hi Donna and others: I was diagnosed with MM, light chain, Stage 2 standard risk in Apr 2021. 6mos Darzalex/Velcade/Dara injections + Dex, followed by SCT in Oct 2021. Now in complete clinical remission & feeling wonderful. Due to impaired kidney function, we recently tried low-dose 5 mg Revlimid 21 day cycle, but creatinine level rose sharply. We're now monitoring blood work and I'll soon discuss options with my MM specialist at Stanford Med Ctr.
There aren't any clinical studies re: efficacy of 5 mg Revlimid (but there are side effects) and possibility of bimonthly Velcade injections leaves me cold.(Previously, I developed severe feet and leg neuropathy after 5 months.)
So I'm leaning towards NOT doing oral meds at all. It feels counter intuitive to commence with meds now when I'm feeling SO great and studies are inconclusive with low dose while debilitating side effects are known.
I exercise regularly, have a nutritious diet, meditate, do Tai Chi.
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