I know there must be many of us who have had chronic pain from other causes, coming into our myeloma diagnoses. After being diagnosed with stage 2 MM in early 2019, I've had no trouble with the palliative doctors taking over my pain regimen, and prescribing the low doses of Norco and a migraine med that I have needed since a high impact injury (plane crash) forty years ago. I use a minimal amount of these meds, as I've learned they quickly become counter-productive if you rely on them too much. Now, suddenly, my current palliative doctor is telling me that because I don't use much of the Norco, especially (she has expressed in the past that she wished I took more), she doesn't think any of my pain is from the cancer and that it's all from the plane crash. So she is now saying that she doesn't want to prescribe any pain medicine for me, that my PCP should do it. Well, my PCP doesn't want to, since I have a palliative doctor, of course. My pain and disability have increased immensely since my diagnosis, especially this past two years. She tells me that since I haven't gone up in usage, my pain must not be increasing. Is anyone else dealing with this problem? Or have any advice? The palliative doctor says I need to go to a pain clinic. I've been through the pain clinic process many times in the past 43 years, and am not well enough to have to be driven all over San Diego County to start all over in another one. The last time I went to one, it took eight months for me to get in. That was 14 years ago, when my husband was still alive. Now I am alone and because of my immune system and because of my conditions, do not drive into the city anymore. I really thought all this hassle for a low dose of pain medicine was behind me, with the diagnosis and a palliative team on board. The palliative doc even said that Revlimid doesn't cause any pain (!!) ...and that since my myeloma is stable (not in remission but plateaued) the increased disability and overall aching is not at all from the illness, so not her responsibility. I have an appointment with her tomorrow, through Telehealth. I dread seeing her anymore. Any help through anyone else's experience would be much appreciated.

Patient Advocate Foundation Co-Pay Relief program has open myeloma fund per an email today. If the scary looking link I copied below doesn’t work, try copays.org. https://patientadvocate.us1.list-manage.com/track/click?u=99dbf78b6e6c0dc9b5ae9adc1&id=7be8b6be6b&e=4447d51ae9

Patient Advocate Foundation Co-Pay Relief program has open myeloma fund per an email today. If the scary looking link I copied below doesn’t work, try copays.org. https://patientadvocate.us1.list-manage.com/track/click?u=99dbf78b6e6c0dc9b5ae9adc1&id=7be8b6be6b&e=4447d51ae9

Welcome to another Motivation Monday! Share something that has helped motivate you through this past week. 💪😃

Dumb/noob lingo question: I've noticed the community uses nicknames for many of the drugs. I'm starting DRVd Friday. If I want to sound like an insider, it's Dara, Rev, Dex, and what? Bort? Vel? Velk? Or no nickname? TIA. Tj

I am started Selinexor (Xpovio brand) with Dex as bridge therapy before I have Car T. Does anyone have experience on the side effect profile and effectiveness? We are just trying to keep my myeloma in check for a few weeks as I wait for cells to come back to proceed on car T so only expect to be on it for one cycle (3 wks on/1 wk off).

Hi everyone. I am about 9 mos post stem cell transplant and am still experiencing a lot of memory issues. Mostly, it’s not retaining very detailed things (like financial numbers) and completely forgetting conversations with people ( I forgot I met someone who I’d met a week earlier, I forgot that I conducted an employee performance review three days earlier, etc). Any information you could share about the duration of memory loss and anything that could help would be so welcome. Thank you!

I am researching all the information and looking for other patients who may have been given too many strong antibiotics to stop MRSA, which resulted in severe kidney damage to my brother, a 66-year-old male. He got MRSA in the hospital after knee replacement. Now, three years later, after being given overdoses on more than four types of antibiotics, he has gone on dialysis. He is now so weak from anemia that he fractured his hip. Tomorrow, he will have his leg amputated. I am determined to find the answer to why I am allowed to keep administering these toxic drugs.

Not sure if I’m officially “newly diagnosed” but it looks like I’m moving towards it. After a basic blood test for my annual physical in February my primary care doctor saw numbers he was concerned with and ordered a deeper test. The results showed IGM (18), IGG(2779), IGA (11) numbers way out of range, as are my Free Kappa (5.71), Free Lambda (.45), and the ratio (12.69), so he suggested I see a hematologist. Yesterday I had a blood test which confirmed those numbers, and a bone marrow biopsy I’m waiting on the results of, and next Wednesday is my PET Scan. So with my blood results already in I’m trying to make meaning of what I’m seeing. My appointment with my Myeloma Specialist at Memorial Sloan Kettering in NYC isn’t until next Friday after all the results are in. Any insights from those of you with more on what these blood numbers mean would be appreciated. I’m also thinking the bone marrow results are also a big factor in the diagnosis, which will probably be available Monday or Tuesday. Thanks!