Has anyone gone into the ASCT with leg weakness due to severe neuropathy? Did your mobility worsen? My husband is 57 and is using a walker/cane due to nerve damage (temporary, we hope) from Velcade during chemo. His doctors advise him to go ahead with the transplant, but we are worried his mobility will get worse. Any experience with this?

Has anyone had multiple skin cancers diagnosed after taking many MM medications? My oncologist warned me to get 3 month full body skin check ups and glad he warned me because I’ve had many I’ve had to have removed. Both basal and squamous cancer cells.

Sunday morning I received a call from my oncologist and she let me know that the chemo wasn't working. So tomorrow I am to get a biopsy to figure out what other path I will be taking. Wish me luck...🙏🏾

I retired from Accuride Canada in 2007 after over 38 years. It wasn't until December of 2024 that I was diagnosed with Multiple Myeloma Cancer. I have MGUS. In the months since being diagnosed it has come to the attention of the London and District Myeloma Cancer group that there are other former employees of Accuride Canada that also have been diagnosed with Multiple Myeloma Cancer. So far the number is at 10. In the general population the diagnosis is small but in the retirees there is a spike. If you or anyone you know that worked at Accuride Canada/Firestone Steel then please tell them to get tested.

Husband doing his day Cart T + 30 PET/CT tomorrow and is anxious as he’s been experiencing pain the last two days in areas of old lesions. Anyone experience the same? What was your outcome? 🙏🏼

We’re hosting two in-person focus groups near Atlanta on: 🗓 September 16 & October 21 (late morning) We’re looking for people who: ✅ Have multiple myeloma ✅ Have had at least two relapses and completed two or more lines of therapy ✅ Have not received CAR-T therapy ✅ May or may not have received a bispecific antibody (Talvey, Elrexfio, Tecvayli, or Lynozyfic) ✅ Get care at a community practice or academic medical center 💬 We especially welcome Black/African American and male perspectives! What to expect: 📍 2 in-person sessions near Atlanta ⏱ 4 hours each 📚 Pre-read materials to help you prepare 💵 Compensation for your time and insights If this sounds like you (or someone you know), comment below or email cynthia@healthtree.org for more details!

Healthwell grants for Medicare Access is still open

MARYLAND (WBFF) — Doctors at Johns Hopkins Medicine hospitals and facilities have stopped taking in-network insurance from UnitedHealthcare after Hopkins and the national health insurer failed to reach a contract by a Monday deadline. Just under 60,000 patients on UnitedHealthcare plans see Hopkins providers in Maryland, Virginia and Washington, D.C. Hopkins said all of its providers or facilities, except for Johns Hopkins All Children’s Hospital in Florida, are considered out-of-network by UnitedHealthcare as of Monday. “This means that UnitedHealthcare may cover less, or none, of the care patients with UnitedHealthcare insurance receive from Johns Hopkins providers or at Johns Hopkins locations,” the health system said on its website

Hello, Has anyone that’s done Cart T or SCT done a Titer test to see what immunity you still may have before revaccinating from square one. If so how did it go? Thanks!

Has anyone ever had pleural fluid analyzed and it shows mpe? My research shows Darzalex can cause this?

Medicare Advantage plan participants should be aware of upcoming changes and reach out to their plans. "UnitedHealthcare, Humana and Aetna are eliminating unprofitable Medicare Advantage plans, exiting unprofitable markets and scaling back benefits, and Cigna, Premera Blue Cross and others are exiting the MA business entirely. Insurers are also raising premiums and reducing broker commissions as they struggle to adapt to a new risk adjustment model, according to Brooks Conway at Oliver Wyman. A million or more MA subscribers may be affected and may have to find a new plan, switch to conventional Medicare or find in-network health care providers." MedCity News If assistance is needed, please reach out to Healthtree and ask for a financial coach.

My husband is 3 1/2 years into IgG Lambda light chain MM treatment by a myeloma specialist at a notable cancer (all types) center in California. We're looking for a doctor who relies not only on the science but also on situational analysis and personal judgment. Where can we go to find out how many MM patients a specialist actually treats? Hematologist-Oncologists treat a number of blood diseases and their practice may include only a handfull, at best, of MM patients. We're on a hunt for 1) a specialist who treats as many MM patients as possible and 2) a specialist who is interested enough in patient side effects to use the available tools to mitigate them based on patient status, not on a standardized protocol. We are able to relocate anywhere in the US. We would settle for a specialist with only a few MM patients who is proactive about using IVIG, blood transfusions, medications and blood building methods. After 5 hospital admissions for pneumonia the first year of treatment none of these were offered. When we asked for IVIG it was refused because my husband wasn't sick enough based on a standardized protocol. Please note: We are not looking for a 'nice' doctor. Ours is nice enough. We are looking for an interest and willingness to do what's best for the patient in side effect management. Do you have a personal experience with a MM Hematologist-Oncologist who thinks outside the standard protocol box and is proactive in terms of managing actual and predictable side effects? Many thanks for your comments.

Did You Know About NORD? 🤔 The National Organization of Rare Diseases (NORD) offers incredible support to individuals and families affected by RARE diseases, often providing crucial copay assistance! Many aren't aware of the amazing benefits they offer, like helping with the costs of medications for Copay Assistance. NORD covers a wide range of rare conditions, including: AL Amyloidosis POEMS Syndrome Gaucher Disease Cystic Fibrosis And many more! If you or someone you know is living with a rare disease, exploring NORD's resources could be a game-changer. They provide valuable assistance and support. ➡️ Check them out at rarediseases.org!

Has anyone experienced issues with dry eyes following CarT therapy?