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Stevon, do you have a nurse navigator to help you find a clinical trial? I know the Multiple Myeloma Research Foundation has them.
I just discovered I am ultra high risk smoldering MM due to having chromosome abnormalities 1q21, 1q22, and q32. It makes me less likely to benefit from treatment. Looking for best way to deal with it. ANyone have any experience?
I think they can as long as the trial guidelines are followed
Hey Lorraine, it looks like you are following the best recommendations. Getting to MRD negativity before transplant is so awesome. I'm high risk with P53/17p deletion. I was told a transplant was a… read more
I went to get an ultra sound of it today.
Wishing you the best!🥰
Does anyone have an underlying autoimmune disorder along with Multiple Myeloma? I have Lupus and find it difficult to know which illness is causing particular symptoms.
I absolutely get it. I have Sjogren’s and Smoldering MM. It’s a definite struggle to know which one is causing me to feel bad.
That’s my diagnose since last May and after 4 treatment, last is SPd, no therapy for a month because radiation and complicated diverticulitis with abscess.
Hi Donna, my Myeloma labs were off the charts for one month, we are working on getting better. Thank you 🙏🏻🤗
I would like to try CBD for pain control as well as help with nausea. It seems like there is a lot of information out there and I really don't know where to begin. Can anyone advice me on what works for them? Thanks
I take 800mg if gaba 4 times a day and pericent 10 mg for pain
Hello Larry
Other then using Turmeric it is better to take Curcumin, that helps inhibit inflammation to support joint comfort, encourages a healthy immune response, promotes cardiovascular health and… read more
I hope it turns out okay 🙏🥰
I went to the big cancer hospital in Houston and was assigned to the doc who was running the trials for curcumin. I asked him about it. He said that although it seemed to help a little, it wasn't enough for him to recommend it. After that I found a doctor of nutrition who specializes in cancer. When I told him what the doc said, he told me the results turned out that way because your body can only absorb so much of it and it needs more to really help. But that a German company came up with a way… read more
and it's bioavailable? I take a T. of coconut oil with mine. Curcumin needs fat to absorb properly. I don't take thousands of milligrams though. I only take 800mg a day. I have no idea if it's doing… read more
