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Babydoc
Multiple Myeloma Discussion • March 5, 2025
Seeking Advice on Stem Cell Therapy
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My husband was diagnosed with MM 3 months ago and is responding well with treatment. He is trying to decide whether to get stem cell therapy. Any advise or thoughts ?
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Anne66
Multiple Myeloma Discussion • March 5, 2025
Managing Nerve Damage & Facing Next Treatments
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Hi my name is Anne I am a Welsh Canadian and 58 years old. I was diagnosed with MM March 11 2022. I have Lambda type MM with 1 qg. I was put on CYborD (Cyclophosphamide, Bortezomib, Dexamethasone) after 2 weeks I ended up in Hospital with fevers and swollen glands due to the high doses of Dex. My Dex was reduced to only one day a week instead of 4 days. Because of this I began to experience severe pain in my back and legs and started having trouble breathing. Long story short my Diaphragm was half way up my lung. The Velcade (Bortezomib) had damaged the nerve connecting to my diaphragm. Dexametasone was the only thing that helped with the pain, but my Dr refused to increase my Dose again? She doesn’t like Dex and refused to believe it caused my Diaphram issues? Even though with CT scanning my diaphragm was fine when I was diagnosed. I had a Stem Cell Transplant Oct 2022, it has taken me almost 2 years to recover my strength from this. I have nerve pain in my lower body, dry eyes, dry mouth and stomach issues, which is my new normal. I am currently on revlimid 2.5mg daily, I was unable to tolerate 5mg and ended up in hospital. My numbers are slowly beginning to climb, not enough to be alarmed, but enough to know things are beginning to change. In the mean time I have traveled to Mexico, Costa Rica and heading on an African Safari while I still can. I’m anxious about my options for my next round of treatments as I seem to have a lot of nerve damage issues. I am from Canada, so my options aren’t as great as the US.
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bronzeDeer
Multiple Myeloma Discussion • March 5, 2025
Persistent Styes/Chalazions: Tips & Experiences?
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Hello everyone, I am currently on Revlimid, Velcade and Darzalex for light chain multiple myeloma. I am experiencing stye/chalazion for past 3 plus weeks. I started with few stye on my left eye then it tuned into chalazion. I took tobramycin and dexamethasone eye drops for almost 7 days. My left upper eyelid is still pretty swollen. Now my doctor recommended to take doxycycline oral tablet for 7 days. I have been doing warm compress also but it seems like nothing is helping. My question is did anyone experience stye/chalazion while on this treatment? How long did it last and how did you get rid off? What treatment help you for stye/chalazion?
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NKP64
Multiple Myeloma Discussion • March 4, 2025
Navigating Fruits on a Neutropenic Diet?
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As neutropenic diet is prescribed for MM patients. Which fruits can I consume and how? Which fruits should I avoid? Been a challenge figuring out. Many thanks
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Donnatn
Multiple Myeloma Discussion • March 4, 2025
Managing Revlimid Side Effects & Kidney Damage
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I was diagnosed in May 2023. Did velcade/Dex/Revlimid.... Have been in"remission" since 2/2/24. The disease destroyed 30% of my kidneys to where I'm at CKD 4. This Revlimid makes my scalp break out with bumps/blisters and my legs swell. I was told I can't take vitamins because of my kidneys. This Revlimid although the best they have seems like poison to me. I'm worried it will ruin my feet due to the neuropathy. Also I've had temporary blindness in my left eye... Not for long... But it's worrisome. Thank God I don't have bone lesions. Plus I get heart burn as I had esophagus problems before anyway. These things didn't stop me from living but I want to be symptom free as much as possible.
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AP
Multiple Myeloma Discussion • March 4, 2025
Age at Diagnosis Statistics?
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Do we have data or a diagram that shows percentage age-wise distribution of people who were diagnosed with SMM or MM?
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DIahanna • Admin
Multiple Myeloma Discussion • March 3, 2025
Financial Aid & Support 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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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.