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puceSpider
Acute Myeloid Leukemia Discussion • July 16, 2025
Skin Changes and Sensations During Relapse?
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I am multiple myeloma patient Iga and Lambda light chains in the process of relapse. I have recently started having some skin changes which are not bug bites. These are popping up on different parts of my body and most of them are red and itchy. I also have strange sensations on my skin like something is moving on it but no apparent insects or bugs are present even under magnifying glass. I am wondering if all of these are due to my myeloma being active again, and if anybody else experienced this?
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Monica
Multiple Myeloma Discussion • July 16, 2025
SCT for Older Black Men: Seeking Experiences
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Hi everyone, I’m reaching out to hear from anyone who has gone through or supported a loved one through a stem cell transplant, especially if the patient was a Black man in his60s- 70s. My dad is currently preparing for the process, and we’re trying to gather as much real-life insight as possible. His only major health concerns outside of multiple myeloma are mild kidney disease (sometimes normal), maybe risk for mild malnutrition (thin/skinny body type)Doctors say he’s a good candidate overall, but of course, we know that age, kidney function, and being African American can all play a role in outcomes. If you or someone you know has a similar background, I’d love to hear: • How the transplant went (complications, recovery time, etc.) • How the body handled chemo • When were you able to be around others? (Family) • What helped the most during recovery—mentally, physically • Anything you wish you’d known ahead of time How long have you been in remission after transplant ? Appreciate any insight, encouragement, or lessons you’re open to sharing. Thank you in advance. -Monica
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BarbaraLove23
Multiple Myeloma Discussion • July 16, 2025
Asking About T-Cell Therapy Experiences
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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
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mikeo
Multiple Myeloma Discussion • July 16, 2025
Coast Guard Service & MM: A Possible Link?
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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
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Chrisva773
Acute Myeloid Leukemia Discussion • July 15, 2025
Vidaza & Venetoclax Journey, Thinking About a SCT
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Hi to everyone my first post as I’m new to health tree. I was diagnosed with AML in November 2022. My only symptom was feeling weak and at a regular checkup with my cardiologist bloodwork showed extremely low blood count (5.5). I was admitted to the hospital and 3 days later was diagnosed with AML. I had a great oncologist who started me on vidaza chemo and oral venetoclax (oral) not sure spelling which put me in remission right away and for the exception of getting a case of Mercer while in the hospital I’ve enjoyed great health with little to no side effects unfortunately I’ve lost my oncologist and not in love with my new one. He has reminded me that about 36months is the effectiveness for vidaza but with my mutation he feels good he can get me back into remission and that is when I need to seriously consider a stem cell transplant. I will continue to enjoy my good health and cross that bridge when I have to. Anyone similar journey?? Chris
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BarbaraLove23
Multiple Myeloma Discussion • July 15, 2025
Managing Rising Kappa Light Chains?
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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
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Gerii2002
Multiple Myeloma Discussion • July 15, 2025
Understanding a High Protein Lab Result?
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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
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DIahanna • Admin
Multiple Myeloma Discussion • July 15, 2025
Watching for Upcoming Medicare Advantage Changes
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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!
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MaryAmelia
Multiple Myeloma Discussion • July 15, 2025
Seeking An MM Specialist In New Orleans?
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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?
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Telmo
Multiple Myeloma Discussion • July 15, 2025
Managing Severe Diarrhea: Any Natural Tips?
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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.
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Susan58
Multiple Myeloma Discussion • July 15, 2025
Sharing My Journey: Newly Diagnosed & First Cycle
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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