Your Feed

Filter by
See content from
Back to the latest
Avatar
Pheba1
Multiple Myeloma Discussion • May 5, 2025
Sharing the Story Behind My Name
AI-generated title
This is off topic, but thought I would explain where my name came from, Pheba. Pheba is the result of cancer in a way. My given name is Sharon. Back in 2004 I was diagnosed with Endometrial cancer, had a complete hysterectomy. I went to a genetic counselor at our local cancer hospital. Back in 2004 genetic testing was mostly not covered by insurance. The counselor suggested I do a four generation genealogy study to see what I could learn on what diseases my ancestors had. I went back 8 generations on my direct maternal line,. Paternal line was more difficult. My 4th grandmother was named Pheba. My 8th grandmother was named Pheba. Her husband, Alexander fought in the battle of King's Mountain during the revolutionary war. There is a notation in a history book stating that Alexander went Elk hunting with the general in charge of the battle. I find it fascinating that northwest Tennessee once had Elk. Pheba had 11 children. She died. Alexander remarried and had 10 more children. On my paternal side of my maternal line , my 8th grandfather, a barrel maker, had 21 children. I probably have a lot of genetic cousins.
Avatar
Pheba1
Multiple Myeloma Discussion • May 5, 2025
Navigating a Head Cold on Maintenance?
AI-generated title
Stem cell, Auto. May 2024. Presently on Darzalex FasPro and 10mg. Revlimid three weeks on, one off. Came down with a bad head cold on Saturday, last. I ate out with a girlfriend. First time in public without wearing a face mask. The restaurant was packed with people. Wearing a face mask does make a huge difference. Although I could not wear a face mask while eating my meal, so there you go. I took Tylenol last night for fever 101.6. No fever this morning. Resting pulse is 54, and I am literally freezing. I took a Covid test. It was negative. Should I take another? This feels and acts like a nasty rhinovirus. I just finished 6 months of IVIG transfusions to build up my immune system. Wondering if this virus is going to be a test on how well my immune system is working. If the symptoms are a judge then my immune system is very angry at this invasion and is responding as it should. I have less than 5 IGA, my IGG is 750, and the last number is very low. (IGM) The doctors tell me that you can get by with just IGG, although seasonal allergies are the worst this year. (IGA controls sinuses) But, everyone I talk to is saying the same thing. Has anyone else had a head cold while on chemo?
Avatar
Isaac
Multiple Myeloma Discussion • May 4, 2025
Long-Term Venetoclax Maintenance Experiences?
AI-generated title
Hello, For those of you who have taken Venetoclax as maintenance therapy for Multiple Myeloma, did you ever relapse while on venetoclax, or did you ever have to switch from venetoclax to something else after being on it for a long time? Thanks
Avatar
trattelman
Multiple Myeloma Discussion • May 3, 2025
Red Light Therapy Safety with Myeloma?
AI-generated title
I've become interested in red light therapy and purchased a device that dispenses red and near-infrared light to promote healing. My MM has been quiet since my ASCT in 2021, thankfully! I'm 65, not taking any maintenance drugs. But I also have near-constant nerve pain and discomfort in both legs and feet from previous nerve damage, and also severe joint pain in both knees, hip and ankle, hence my search for treatments that might provide some relief. (I also receive acupuncture regularly). I've seen suggestions online that since red and NIR light increases energy uptake in cells and promotes cell growth (and healing), it could hurt me if it promotes the growth of malignant plasma cells in my bone marrow -- the last thing I would want. Does anyone know anything about this? I'm refraining from using the device until I get more information.
Avatar
DIahanna • Admin
Multiple Myeloma Discussion • May 2, 2025
Social Security Alert: New Overpayment Rules
AI-generated title
For those of you on Social Security SSI, SSDI or retirement, you eed to be aware of an emergency notice that the Social Security Announced. Effective immediately, all overpayments made in error either by the administration or by recipient incorrect reporting will now have to be paid back immediately, not over a period of time, However, for those listed above it will be a clawback of 50%.
Avatar
Jfisher0118
Polycythemia Vera Discussion • May 2, 2025
Experiencing High Platelets on Jakafi?
AI-generated title
I was diagnosed on routine cbc 6 yrs ago with essential thrombocytosis that about 18 months ago morphed into polycythemia Vera. Both were controlled with hydroxyurea 500mg/day and phlebotomy for the pv but itching was extremely annoying and I switched to Jakafi 2 Mo ago. Symptoms disappeared almost immediately but now for some reasons platelets have increased and I’m being increased to 15 mg twice daily from 10 mg. Has anyone experienced this?
Avatar
KBas57
Multiple Myeloma Discussion • May 2, 2025
Questioning More Tests After Negative Biopsies?
AI-generated title
I am a 67 year old woman recently diagnosed with MM. My oncologist also strongly suspects I have cardiac AL Amyloidosis. Both the bone marrow biopsy and the fat pad biopsy were negative for amyloid, but now he has scheduled a 90 minute cardiac MRI and if that is inconclusive, he wants a cardiac biopsy. Are false negatives common with amyloidosis? Has anyone else been put through this? With two negative tests already, I question the need for further testing. Thanks.
Avatar
Molly
Multiple Myeloma Discussion • May 1, 2025
Slow RBC Recovery on Lenalidomide Post-SCT?
AI-generated title
Hi I had a SCT back in October 24. All went pretty well except I am still finding my red blood cells are struggling to return to normal. I got as high as 100 but am back down to 88. I take 10mg Lenalidomide a day and my doctor wants me to come off it for a month to see if it improves my red blood counts. Has anyone else had this problem?
Avatar
anaGazana
Multiple Myeloma Discussion • May 1, 2025
Specialist Visits During Maintenance: How Often?
AI-generated title
For those of you who are on maintenance and are seen by an MM specialist, how often do you see that specialist? I receive treatment at a local infusion cancer center, and I go every three months to a large cancer hospital for complete myeloma blood work and to meet with my myeloma specialist. He wants to alternate those visits with his ARNP which I have resisted thus far.
Avatar
Dawnmjo
Multiple Myeloma Discussion • May 1, 2025
Low BMB Cellularity Affecting Treatment?
AI-generated title
Feeling anxious, I am a 65 yr old F, diagnosed January 23, 6 cycles DVRD and auto stem cell transplant September 23. I have been on maintenance since January 24 10mg lenalidomide 21/7. My light chains started increasing a few months back possibly due to vaccination process. Last month M spike was detected again 0.02 and this month it is 0.03. After 2 BMB’s in 2 weeks I have low cellularity so they can’t do all the testing they need. Has this been an issue for anyone and did it impact your relapse treatment options?