I am new to the myeloma and waiting to start VRd treatment. I heard the one drug is insanely expensive, but oncologist says there are grants to pay for it. Did anyone have trouble with the medication cost?
Dawn, there are grants from different sources that will help with copays after insurance pays for most of the cost (or all of the cost). Speak with the oncology nurse about it and she will help you. 🙂
totally agree. Insist on sedation for bone marrow. Don't suffer needlessly. Find closest specialty clinic and have all your specialists from there if at all possible. If you regulary take ibuprofen… read more
I've yammered a lot already about having an existing cancer -- told it's not related to whatever stage of Myeloma I may be. But symptoms of both seem to potentially "overlap". Ergo I get The Shrugs right now, when I ask if they're Myeloma-related.
New: deep bone pain that makes me snivel, far beyond what I've been told is arthritis. Lumbar; hips; fanny to shins; neck (my eldest grandson, 5, says I look like "Robo-Greema" because I have to now turn my whole body vs just my big fat head). Ribs… read more
I'm just now finding all the responses here. I'm classically old/feeble with any form of "interwebs". I really thank you all xo
I am going on medicare in December and I have been paying $10.00 for my Revlimid because I have medical coverage through my employer . On Medicare its$1700 per month( give or take). I do not qualify for assistance with Healthwell . I make just over the amount for assistance . With part D ,I have to spend over $6000 in order to exit the medical , then I was told it will be $894 per month. Does anyone know how to get a lower cost?or how to navigate a better plan with medicare?
Yes, that is true . I just applied for 2023.
I’m really struggling with taking 20 mg of Dexamethasone weekly. It’s 50 degrees here and I’m sweating like I’m in the Caribbean…. Can anyone explain why we need to take all the dex in one day? I wish we could take 1 a day for 5 days…. Thanks in advance for any suggestions…. I have no idea if this will be my maintenance therapy for the rest of my life but it’s not a great maintenance plan for me…
I have Multiple Myeloma and have been on Darzalex/Revlimid/Dexamethasone for over a year now. My Myeloma numbers have dropped into the normal range so we have decided to drop my Revlimid dose from 25mg to 10 mg and monitor.
It has been suggested to me that I get a full body MRI with DWI images to ascertain if there is any Myeloma bone involvement even though my Myeloma numbers are good. This makes sense to me, I haven’t had any imaging done for over a year.
My oncologist is receiving push… read more
I had my SCT July 14, 2022 and thanks be to God I’m in remission. I started my maintenance chemo and Zometa on November 28. I had 9 compression fractures repaired with kyphoplasty. I’m now having more back pain, especially when standing and sitting. I went to see my spine doctor yesterday. He recommended another MRI. I hope it’s not another compression fracture. I was thinking could it be a side effect of the Zometa? Does anyone have any thoughts on this? Thank you, my shipmates.
Yes I have back pain. I haven't had any back procedures. Praise God I am also in remission and looking forward to a cure.
I am in remission after stem cell transplant but I was prescribed Revlimid as maintenance therapy. I have to take it until relapse. What is your experience with this medication.
Yes Previously had MVP. Very pleased with that. My former employer changed the retiree insurance to Aetna. So far only copays when we see doctor ($15) and same even if we are out of network. So… read more
I’m scared to death that this will make me ineligible for ASCT. + IGM, + IGG, + EBNA. Anyone know about this? Of course I find this on my patient portal on a Friday night!
Additional DNA/PCR testing was negative! Now on Nivestym and on my way to ASCT.