Hello All Effect Sept 1st, Blood Cancers United will be changing their copay program. They will only be providing copay assistance to Medicare, Medicaid and TriCare enrollees, shifting away from private insurance for specific disease funds. This shift will affect: ALL, CML, MDS, MPNs, Myeloma, and Waldenstrom Macroglobulinemia

For those who returned to work after treatment, what helped you figure out what you could realistically handle? Did you return gradually, change your hours or responsibilities, or have to advocate for accommodations at work? #blackhealth

my husband has been on the JNJ trial since July 1 and has been experiencing knifing pains in back and lower back....been in hospital 5 times and maybe 12 days....just can't stay at home cause he can't get out of bed with the pain at times and had to call the ambulance twice....anyone else heard of this...are we the only ones experiencing this

Hello! I’m scheduled for SCT in September. I’m working with a PT to be as fit as possible and feel good about that but I’m wondering if anyone has found an alternative treatment that supports their care. I want to feel like I’m doing everything in my power to get myself back to full health. Thanks!

Interested in patients experience with bispecific therapy.

any suggestions for pain management, my husband is on morphine right now but that doesn't always help completely...looking for suggestions

When I was first diagnosed with MM, I met with an Oncologist at my local cancer center and then through another article about best multiple myeloma doctors came across Dr. James Berenson in LA. I was able to get an appointment fairly quickly which maybe should have been a red flag. Anyway, I met with Dr. Berenson and decided to follow his protocol for treatment. The local oncologist when seeing the plan commented that he was recommending using a chemo agent doxorubicin that had been around a long time. I was also to get 40 mg of Dex twice a week and Velcade. The long and short of it is that it was not an effective treatment for me and once we backed off on the Dex due to the side effects, my myeloma numbers starting going the in the wrong direction telling me that the other medications weren’t doing much if anything. For me Dr. Berenson’s protocol was not effective and set my recovery back. In hindsight I wish I had listened to the other oncologist who was recommending a current standard of care protocol.

Is anyone familiar with recent study conclusion supporting discontinuing maintenance therapy after 2. years

It appears I have gotten colitis from a bispecific. Anyone else experience this? If so how was it treated?

My husband has had Multiple Myeloma since 2008. We are scheduled to go to the University of Arkansas Multiple Myeloma Center to have his T cells extracted this week. He will have the Car-T Cell Therapy with Carvykti in September. What advice would you give to him or myself, as his caretaker during the upcoming procedures? Thanks!

Any program available to assist with out of pocket costs for cataract extraction and lenses. Cataract that are the side effect of steroid use.

I have been MRD negative for almost 5 years on a clinical trial which has ended. I am told that I can stop treatment completely, or continue on my regimen of one injection every 2 months without side effects. If I stopped and then relapsed , most likely I would go back for Talquetamab but would need the step up process which might include a hospital stay, and to expect the usual side effects like loss of nails, loss of taste, etc . It is is a difficult choice. What do others think?

What length of time are you seeing of relief from MM after ASCT? I just saw my Oncologist holding form 8/2018 and two years off any therapy.

When anxiety meds just don’t last or help anxiety Does anyone have experiences w adding non smoking medical marijuanna along w anxiety meds and what form ?? Gummies, oil or pill form?? Have MM, CMML along with COPD And Meds are just not lasting long enough Any experiences will be greatly appreciated Thank u

I have been in treatment for a long time and am currently on the KPD regimen for IGG Lambda MM. I can't take the Dex anymore - I mean the side effects. There seems to be a growing body of evidence that removing the Dex from treatment may not adversely affect PRS or OS and I would love to know if anyone else has gone Dex Free? If so, how is going? Thank you So much!