Hello everyone of AL Amyloidosis community, in case you missed the webinar that Dave mentioned earlier, here is the link to the recording. It was a very good one, especially the Q& A session with Drs. Zonder and Akhtar. Worth listening if you have time. https://www.youtube.com/watch?v=FPQv_jxBA6A Best regards!

Please check with your state to see of they have any programs or financial assistance for cancer patients. I know GA does. Google State Cancer program. Also if you are reviewing options for clinical trials, make sure your insurance will cover and where they will be done. Also check with the program sponsor to see if there are any delays in their program.

Please be careful taking Vitamin K. It is often recommended to take with Vitamin D, which we do need, (in reasonable amounts). Vitamin K speeds up blood clotting, which is very dangerous for anyone taking medicines that have the risk for blood clots (eg Revlimid). Please be careful! Sharing this screenshot (sorry it's so big) to substantiate.

Hi smoldering myeloma friends. I wonder if anyone has high-risk smoldering (HRSMM). I'd like to hear about the experiences/opinions you are having or had. Did any of you get diagnosed with HRSMM and then have your doctor fail to catch the progression to active myeloma? Did you want to get treated as a HRSMM patient? Did you want to hold off and wait until progression? I'd love to hear what you are thinking about treatment for HRSMM.

OK, I'll just say it IVERMECTIN. There. Anyone have any information on it, besides the wacky sites i've read/seen videos on about how it cures cancer. My friend and I both have agressive forms of MM, mine is gain 1q and hers is del 17p. I've been in remission for 4 yeas (woohoo), but she is also running out of treatment options and seriously considering trying it INSPITE of our MM specialist saying "absolutely not". Thanks for whatever info you can send me!!

For those taking Velcade as part of Multiple Myeloma treatment, in rare but possible circumstances, Velcade can cause heart damage. That is what happened to me. My recommendation is that if you are taking Velcade as part of your treatment, check with a cardiologist

I was diagnosed in Nov 2021, IgG Lambda MM. I have t(4,14). I have been MRD negative or quite close to that since June 2022, when i had my ASCT. I took Revlimid 10 mg and Velcade 1 mg as maintenance beginning in Sept 2022. At the two year mark after my ASCT, in June 2024, I was taken of Revlimid, and my Velcade dose was reduced from 1 mg to .7 mg. I get Velcade every two weeks and for the past three months it has made me very sick and I throw up the night after I get the shot and I am really nauseous for about a week after I get the shot. My phosphorous, LDH and other kidney indicators were very high today and I am concerned that that the meds are hurting my kidneys (my protein numbers seem to indicate that I am still in remission). Does anyone ever just take the week off of chemo? I am interested only in people who have considered skipping a treatment and have made a decision one way or another. To be clear - I like my doctor and follow his advice to a t. I just feel that my LDH, phosphorous and other numbers seem to indicate that my organs are suffering more than my cancer is right now and should I take a week off to try to give my kidneys a break? I am not seeking advice, but I'm interested in experiences, and I'm grateful for them. I listen to my doctor. I am interested in hearing about others' experience. Thank you for your thoughts and experiences.

Hello All, I was just diagnosed Dec 2024. Just starting to get a handle on things. Any recommendations on what I can do for my back pain? I have lesions on my spine. Will it get better with the treatment? I just finished my first cycle. Iam high risk, stage III and 46 years old.

Since my SCT in September I have had occasional bone pain that doesn’t last very long and for the most not in the same spot. I also have lots of snap, crackling and popping. Is this something of concern? I had a PET scan in December showed no active myeloma and told I was in complete response in January. I mentioned to the oncologist and she said let her know if continues. Thoughts?

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