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DIahanna • Admin
Multiple Myeloma Discussion • March 3, 2025
Financial Aid & Grant Resources
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Healthwell foundation has grants available for Cancer Home Care Services via phone application only as well as grants for AML, CLL, MCL, MM -Medicare Access, Oncology Caregiver Behavioral Health Fund go to: healthwellfoundation.org. Support Near Me is a website provided by an organization called Aunt Bertha, a Public Benefit oCorp (also doing business as find help and findhelp.org, that provides a searchable list of local services that you may find helpful in addressing your needs. Access to Support Near Me is licensed by Merck solely as a convenience for patients and caregivers. CancerCare at copay.org has grants available for: ALL, AML, Cancer Genetic Genomic Testing, Social Needs Assessment & Intervention Fund, Myelodysplastic Syndromes.
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magentaFlamingo
Multiple Myeloma Discussion • March 3, 2025
Holistic Care or Supplements: Experiences?
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Hello MM patient here, 3 years now. Failed SCT, so basically on a maintenance treatment plan keeping things stable but haven’t reached remission yet. My question, Is anyone here doing a holistic approach or taking any herbs or natural supplements? And how is it going if so.
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Onie1027
Multiple Myeloma Discussion • March 3, 2025
Managing Swollen Hands at Night - Any Tips?
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Good morning i am also a myeloma patient for about two years,I still have to learn a lot I'm has anyone have problems with there hands my hands are swollen all night I have to constantly rub them or get up and run hot water or something on them do anybody know what's good for that?
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Lindsay
Multiple Myeloma Discussion • March 2, 2025
Managing Dara/Velcade Stomach Upset?
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Hello everyone, Does anyone have any suggestions on what works best for the stomach upset mess off the dara/velcade shots? Home remedies or supplements or anything in general? Thank you?
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kmburke60016
Multiple Myeloma Discussion • March 1, 2025
Lung Nodules After SCT: Sharing Experiences?
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Hello all. I was diagnosed just under a year ago. Had to have a spine surgery to stabilize around my T1, which was destroyed by the myeloma. I'm about 110 days past my SCT. Had a recent CT scan of the thoracic and cervical areas, which revealed some changes and also some 3mm nodules in my left lung. Has anyone had experience with this?
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Isaac
Multiple Myeloma Discussion • February 28, 2025
Severe Itching on Venetoclax: Anyone Else?
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Hello, has anyone experienced severe itching and skin irritation (looks like hives) under the Armpits and groin area while using venetoclax? I'm currently experiencing this, and I saw my non-myeloma doctor and she said it was fungus, but I think it's an allergic reaction to venetoclax. The itching is starting to happen all over my body now, but especially my back, neck, armpits, stomach, and groin areas. If you've experienced this, could you please share how you went about getting it resolved? Thank you 🙏
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kenlevy
Multiple Myeloma Discussion • February 28, 2025
LLS Financial Aid Programs Now Available
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LLS has opened up the Urgent Need Program: Urgent Need Programs provide assistance for non-medical expenses including rent, mortgage, lodging, utilities, childcare, elder care, food, transportation, car repair, car insurance, phone service, and acute dental work related to treatment. Eligible patients receive a $500 grant. Applications must be submitted by a member of the patient’s care team over the phone at (877) 557-2672 or via the online portal. For general information, eligibility criteria, and covered expenses, please visit the webpage at www.LLS.org/urgentneed. Also open: Patient Aid Program ​provides a one-time $100 stipend to eligible blood cancer patients to help offset non-medical expenses. Medical Debt Case Management Program ​helps patients address financial concerns, identify resources, assist with insurance plan evaluation, and navigate insurance benefits, denials of care, and out-of-pocket costs. Veterans Dental Partnership provides assistance to Veterans with blood cancer to access dental care to begin lifesaving therapy or as a consequence of therapy. All expenses for the required dental care will be covered, as long as funding is available. Local Financial Assistance Programs provide assistance for non-medical expenses including transportation, housing, utilities, child/elder care, food, clothing, phone, acute dental work related to treatment. Eligible patients receive a $500 grant.
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Qunbin
Multiple Myeloma Discussion • February 28, 2025
Webinar Recording: Q&A With Drs. Zonder & Akhtar
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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!
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DIahanna • Admin
Multiple Myeloma Discussion • February 27, 2025
Tips for State Aid & Clinical Trials
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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.
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Crisbanta
Multiple Myeloma Discussion • February 26, 2025
A Caution About Vitamin K and Clotting Risk
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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.
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JennyA • Admin
Multiple Myeloma Discussion • February 26, 2025
Deciding on HRSMM Treatment: Experiences?
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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.
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Tracy K
Multiple Myeloma Discussion • February 26, 2025
Ivermectin and MM: Thoughts or Experiences?
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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!!
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ecruDolphin
Multiple Myeloma Discussion • February 25, 2025
Sharing a Tip About Velcade and Heart Health
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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