Hello I have MM for three years and been ion 5 different medication with the shots in your stomach and nothing is helping me my kappa chain light is going up higher. My doctor wants me to have T Cell done but I'm afraid have anyone had it done yet if so can you share some light on it. My bloodwork is low also have anyone experienced any of this

Evening All 6 months ago got the news of MM with lgg damage and stage 4 kidney failure. Started on Velcae and Dex then they added dara as well. Overall been doing pretty well and the numbers seem to be responding No cancer history in my family and was trying to figure out how this surprise came about Then had a old Coast Guard friend of mine remind me of the high power transmitters(LORAN) I worked on for years and sure enough on the VA site a whole section talking about the ionizing radiation(xrays) that had were emitted that none of us knew about So just wondering if there might be any other Coasties around here going thru the same thing? Thanks and hang in there MikeO

My husband is 67 with multiple myeloma and his kapper chain light keeps going up is there anything he can take to bring it down

Hi, I need some help, hope someone can tell me! I really hope I am able to send out this email, as I haven't been all day! I went to my oncologist , he took blood, but didn't see me!!! He was 3 hours let!! That was on Friday 11, w2025 and took blood ! Today it comes back and it's only me. Back it says protein is high it 8.5 calling it abnormal, does that mean it's moving? He never called back!!! Thank you guys for your help Geri Fumarola

OK, A lot is happening but not yet written in stone. Most of the proposed changes to Medicare, Social Security, Medicaid, if they garner the needed support, will not be decided until after mid-term elections. There are some proposals that are hidden in the bill, that you want to keep an eye on. It affects Medicare for 2028. The proposal sys that Medicare Advantage plans will be selected by an administrator for beneficiaries who become eligible in 2028. They will be locked into that plan for 3 years unless they opt out. (This will require them keeping up with changes) Also, the Medicare will be based on the lowest premium, not what you need based on your health care needs. This will affect your network , coverage levels, etc. This is a good time to start writing letters to your appointed representatives and advocate!

Hello, I am looking for a good MM specialist in New Orleans LA. I have not been able to find one listed on the Health Tree website. Is there anyone out there that could give me a good reference? Or am I missing something?

Hi, a relative of mine, 86 years old, was recently diagnosed with multiple myeloma. She is being treated with immunotherapy but she is suffering from severe diarhea as a side effect of the treatment. Can someone tell me if they had the same side effect and how to best handle this? I do not think she can take any more drugs, I think something more natural would be the ideal. Thank you.

Hi. Just joined in. 66 years old. June 2024, numbers started looking high after blood testing. Then my gallbladder got infected and removed. Complications with bleed, added stent and recovered into the year. January 2025 more blood work with concerning rising numbers. Made oncologist visit, had blood marrow biopsy and PET scan. Biopsy showed 70% cancerous cells, 40% platelets. PET showed no bone issues, blessed. I'm IGG, light chain. No symptoms or pain. Just finished 1 cycle of 4 quad treatment, with very mild side effects. Today just 1 stomach med injections, broke out in small rash on abdomen, not itchy. Little concerned. I have a week off of 4 quads and then start cycle 2 on July 21. Have a great team at NHO in Nebraska and will head to NE Med for ASCT in fall if all goes well. So glad to find a site that I can compare to, all so new to me, as you can all imagine. My family is amazing, so I feel very positive and blessed to warrior thru this. Thanks. Sue

I'm 48 years old & was diagnosed in January w/ Lambda light chain myeloma. I also have +1q chromosomal abnormality. I'm currently on the Quad treatment therapy & waiting for my next bone marrow biopsy to be scheduled to find out my progress. I'm struggling with do I have the stem cell transplant now? Or should I wait until it comes back (if I'm found to be in remission of course). It's such a hard decision. I also need a hip replacement. If I don't need the sct right away I think surgery for my hip would be next. Infection is such a huge worry now though due to MM. I would love any and all thoughts!

Anyone here with deleted 17p/TP53 doing Well without SCT?

I recently returned from a retreat for men with cancer put on by Reel Recovery. It's a two day activity of fly fishing at top-flight facilities, relaxation, and camaraderie. Fly fishing skills or experience not required and they provide the gear if you don't have any. They also have a 1-1 ratio of fishing buddies to attendees (many of the buddies have also dealt with cancer themselves or with family members). There are sessions scheduled all around the US, UK, and Australia. I cannot recommend it enough for any men here or that you know who've joined the Big C Club. I put my name in to be a volunteer fishing buddy for other attendees. This has been going on for over a decade and ours was the first time that they had more than one MM patient (there were three of us) at an event. We had plenty of time on the water, good food, great roundtable discussions with a licensed counselor, and great scotch and bench fishing in the evenings. Here's the link. Please spread the word. www.reelrecovery.org

Hi everyone! I am now in the maintenance stage of my myeloma journey. The maintenance includes Velcade (bortezomib) injection every two weeks + revlamid daily. I’ve been noticing hyperpigmentation on my palms and face. My complexion has literally changed on my face. wondering if anyone else has experienced significant hyperpigmentation and how you treated it.