Mines low. Like 2.8 low. They lowered my dose of revlimid and have given me a couple shots (forgot what it was) but didn’t help much. I just am careful with food and crowds and pray.
The ortho surgeon says I need both knees replaced. My oncologist son-in-law says the MM and the treatment I am on make me very high risk and says I shouldn't do it. I have just gotten to a place where I am fairly active and feel like I have a decent quality of life with MM. Now this.
Thanks, everyone, for taking the time to answer. I have had the injections and they have helped. Nothing is simple when you have MM, there is so much to consider!
I feel fine, but I know my ANC is dangerously low. My doctor will probably have me start injections of neupogen.
Thanks,
Kara
I have a gain of 1q. which puts me at high risk.
Question I have:
Should I be in this group if I only have SMM. Everyone else in here has MM. Just confused and concerned, but this group is very helpful in gathering information. On what I might be experiencing at a later time........
I started at MGUS 7 years but now at SMM just 3 months blood work
Ask your MD.
I am seeking affordable IVIG. Dr has prescribed but insurance has denied preauthorization and appeal.
I found an article in HEALTHTREE.ORG that speaks to IVIG preventing myeloma cell growth and actually killing myeloma cells. As I am still smoldering, this line of treatment speaks to me. https://healt… read more
I was diagnosed with multiple Myeloma in April of 2021 after several spinal fractures were found. I had a stem cell transplant in Nov 2021. I was on Darzalex and Revlimid, but recently went off the Darzalex. I also no longer take dexamethasone or Acyclovir. I am in very good partial remission. I get a Zometa infusion every 3 months .
Bev , my husband has had two teeth pulled by an oral surgeon. We felt very comfortable with his knowledge of bone strengthening drugs and myeloma. My husband has not inquired about an implant. They… read more
It was discovered that I had thyroid cancer when I was diagnosed with MM (June 2023). I had my thyroid removed (in October 2023) 4 weeks before my Stem cell transplant (November 2023). Now it appears… read more
I see this going up.
I have a hard time getting any information out of my Oncologist.
Any suggestions on how to get information out of her.
All
She says is we are monitoring at times she says I don’t have Multiple Myeloma, and other times she does say I have Multiple Myeloma. So confusing.
I am taking Revelmid 15mg.
Hi Vince, are you able to get access to your patient portal? It helped me to look up my labs so I could understand why they were too low or too high.
with steady but not improving test results ??
thanks to all....thinking of changing drugs or dosages to break the 'satisfactory' stalemate and look for remission....