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Teece thanks for at least attempting to answer the questions and you could be correct I have no idea.
At least two nights of broken sleep needing sleep meds
Shipmates, 20 months and going strong. Thankful to be alive.
I am plodding along and deal with each "event" as it crops up...i cant do more than that. At this point I am only on supportive treatment and do not think I will go the chemo route.
I am about to go on Medicare and was SHOCKED at the cost of the copay for Revlimid which I am starting as maintenance therapy. Even with the supplemental prescription coverage, it is obscenely expensive. Why is there no generic available? I am wondering how others deal with this? We don't qualify for the Leukemia/Lymphoma Society assistance program. Anything else out there? Thank you.
About 2 months before my grant is up for the year they send me another application, I fill it out give it to my Oncologists office they fill out their part and fax it to the pharmaceutical Co. for… read more
Drink lots of water stay hydrated. Do not stay in the sun for long periods of time. If I remember correctly some of the medications, we can react with sun light.
Cynthia that is great advice, If that doesn't work I don't know what will. Stay warm.
I'd like to know how you made the decision to stop the MM Meds.
Was it your choice or doctor recommended - any details would be great.
I'm now MRD Negative. My Doc has placed me on MM Meds holiday. Now with the Jan 2022 Report about MRD-SURE, I plan to stay in Labs Monitoring Mode with no MM Meds and only add back Revlimid, if a future Labs indicates the need. Keeping my fingers crossed.
MRD-SURE Link:
https://www.cancernetwork.com/view/mrd-adapted-...
Thanks,
Larry2
just as I think of stopping maintenance my ANC dropped to 1..1
lucky me
Diagnosed 9/3021
SCT 6/2022
My doctor prescribed Gabapentin to help, but the neuropathy doesn’t seem much better. I am trying to build strength and not need a walker to get around since my hospital,stay for pneumonia, but the “pillow feet” make me uneasy. Both feet feel numb.
Has anyone found something that helps more with the neuropathy?
Also, you might try Amitriptyline.
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