Your Feed

Filter by
See content from
Back to the latest
Avatar
hojo781
Multiple Myeloma Discussion • November 14
Does this logic make sense?
An ACA insurance broker told me that he recommends his clients with expensive chronic conditions choose the Bronze ACA plans, which often have the lowest total cost (monthly premium x 12 + out-of-pocket maximum). He said if you're blowing through your out-of-pocket maximum in the first few months of the year, you don't have to look at co-pays, deductibles, etc.
Avatar
BobH1
Multiple Myeloma Discussion • November 14
Experiences with Kyprols
I was wondering if anyone had injection site reactions with Kyprolis IV. I have had 3 cycles as part of DKd (Dara only once a month). From the beginning burning $ stinging at infusion site. As cycles progressed., they traveled 5” up my arm. IV first & second in Cycle 3 were mercifully painful. Onc nurse suggested pulling it and starting another vein. I declined since we had about 7 min. to go! Both nights were terrifying: splitting headache; total body burning up (but no fever); body aches. In morning as I forced myself to get moving, these slowly dissipated. My oncologist said it wasn’t an AE but an “Infusion rxn” So I did a thorough online search & found that kry is toxic the endothelial cells lining veins😳. Remedies included diluting Kry w/ dextrose- saline; slower infusion rate; stopping and restarting. Yesterday I had my 3rd kry+ dexameth. I reported my experiences w/ the two previous infusions to the administering nurse and asked if dilution was possible. Given my prior experiences she would not proceed. She contacted my onc. who agreed to add a bag of dextrose+saline. Bingo! Zero pain during or after infusion. Slight headache; slight “body heat”, no feeling like a truck hit me! Just a note for those using or considering Kyprolis. This was MY experience and I hope remedy. Good luck!
Avatar
ChioOsuna
Multiple Myeloma Discussion • November 14
Event: Living Well with Myeloma: Insights from Long-Term Thrivers
Hi Everyone! It's Chio from HealthTree, I want to invite you to join us to our next online event! 🌟 On November 18th at 03:00PM EST hear from 3 myeloma patients who have been living with the disease for 10+ years. They’ll share what’s helped them adjust, manage side effects, and find balance in daily life. Get practical tips, real stories, and encouragement from people who truly understand. 👉 Whether you're newly diagnosed or years into your journey, you’re welcome here. Register now!: https://healthtree.org/myeloma/community/events/nov25-living-with-myeloma-insights?utm_source=social_media&utm_medium=connect&utm_campaign=SMorganic&utm_content=general
Avatar
Bill
Multiple Myeloma Discussion • November 12
Motixafortide
Has anyone used motixafortide as a mobilizing agent before stem cell collection? If so, could you tell me where you were treated? I had a “failed” collection last week (in my first line of treatment) and am trying to decide how/whether/where to try again. Thank you in advance.
Avatar
Chelle14
Multiple Myeloma Discussion • November 11
Dry Eye Neurotopic Keratitis
Good afternoon, I'm curious to hear if anyone has suffered with NK due to severe dry eye post diagnosis and SCT. I started with severe dry eye after my stem cell transplant. What I did not know is I also had NK, which muted the pain signals, kind of like neuropathy. I pushed through the blurred vision and light sensitivity, thinking dry eye is a benigne condition. When my vision became bad enough, that it was interfering with my work and quality of life, I sought out a dry eye specialist. I was immediately diagnosed with NK and told I was at high risk of losing my left eye. I had a Prokera placed that same day, which stayed on for a week. I then had a Prokera placed on my right eye the following week, and then another on my left the week after. All while waiting on an insurance approval for eye drops called Oxervate, which run $100k for an eight week supply. I am on week three of my treatment and have not noticed any improvements. I brought this up to my oncologist, but was told it is not related to my cancer or treatment. If anyone has had a similar experience or knows anyone that has, I would be interested to hear how you or they are doing. Thank you!
Avatar
DIahanna • Admin
Multiple Myeloma Discussion • November 11
ACA Subsidies
The Shut down has effecttively ended. The Affordable Care Act Subsidies will expire at the end of the year
Avatar
LETICIA
Multiple Myeloma Discussion • November 10
M spike ,
I have MGUS. How do I find my M Spike number. I am new to this community.
Avatar
Pmp777@gmail.com
Multiple Myeloma Discussion • November 10
Experiencing Loss of Sense on Talvey?
Im on Talvey and seem to have lost my sense of taste. Has anyone experienced this before and how long would it last for?
Avatar
XimenaG • Admin
Multiple Myeloma Discussion • November 9
Wall of Gratitude
💜 This November, let’s fill our community with gratitude! 💬 Share in the comments 1–3 words that express your love, admiration, or thanks for the caregivers who inspire you, whether it’s a family member, friend, or someone who has cared for you during your journey. Let’s fill this space with kindness, encouragement, and appreciation Thank you for your words!
Avatar
XimenaG • Admin
Multiple Myeloma Discussion • November 9
Wall of Gratitude
💜 This November, let’s fill our community with gratitude! 💬 Share in the comments 1–3 words that express your love, admiration, or thanks for the caregivers who inspire you, whether it’s a family member, friend, or someone who has cared for you during your journey. Let’s fill this space with kindness, encouragement, and appreciation Thank you for your words!
Avatar
Doricho
General Discussion • November 8
Time line to start maintenance post ASCT
I am in complete remission from IgA Kappa NDMM with a 1q gain scheduled to start 10mg Revlamid daily and monthly Dara Fastpro with Dex as a premed at 130 days post ASCT. Is it typical to start maintenance so soon?
Avatar
Positivity
Multiple Myeloma Discussion • November 8
Pain in arms after Autologous stemcell transplant
My husband had his ASCT on Aug 28th 2025. After 4weeks his bone pain started in his arms. His pain is more only at night. The doctor suggested for a radiation consult and they said it’s not necessary now. Any one has this experience and why radiation? We have an appointment with his oncologist later this month. Should we ask for a PET scan and is bone marrow biopsy required?
Avatar
DIahanna • Admin
Multiple Myeloma Discussion • November 7
Telehealth Challenges
Telehealth has practically completely gone away unless you are in a rural area. Accessibility has expired. The gov't shutdown has exacerbated the issue.
Avatar
Mango68
Multiple Myeloma Discussion • November 7
Swollen ankles
What is the best method to reduce swelling in my ankle?