I'm a 61 yr old Female with Kappa light chain MM in MRD status after 4 cycles of induction with VRD and a SCT in 1/2020. I was on a 10mg/then 5mg Revlimid maintenance until a few months ago. After stopping the therapy my Oncologist dropped me as a patient and I see a NP to do my labs every 3 months. I thought I would feel better after getting off Revlimid but I am experiencing severe hypotension with neuropathy and pain in my extremities. I have read about autonomic dystonia in SCT patients and I'm curious if anybody else is experiencing these same symptoms after stopping maintenance therapy?

Apologies for the confusion in reaching the outstanding U.K podcast. Call it an age thing! Usually the latest podcast is available each Thursday a.m. Ths wek should see issue 14 themyelomaminutes.podbean.com Should reach the site. Remebr there are already very good back issues I know it helps John

Hi all, FYI, High‑Risk Myeloma has been Redefined by IMWG. Can we get more insights on what constitutes the profile now and it needs to be looked upon at? Thanks

When can we expect to get the Trojan horse line of treatment in the USA?

Well, all chemo has been stopped. I posted earlier about having a head cold since May 3. I also had an infection in salivary glands, and am having CT scan of chest abdomen and pelvis. I have a cough that will not go away from the head cold. I have been coughing since May 3. IGG dropped below 25, 40 is minimum. Had IVIG infusion yesterday. Has anyone else been through this? I was on Darzalex and Revlimid. I was told to stop yesterday. Very unsure what this means. I think my doctor is concerned for my immune system and all of these infections. We just received report on IGG level from hospital where I had stem cell. IGG was up over 700, now it is under 25.

7 months post transplant and had a complete response. Been on maintenance of Darzalex ( every other week) and Revlimid ( 10 mg). Originally diagnosed last year with lambda light chain. (IGG). This week my monthly results came back and, My M spike changed from zero to .21 and the notes said IGG type Kappa. I read that Darzalex can cause a false positive on monoclonal test. Anyone else experience this? Your thoughts?

Hello All! I hope today finds you well. I'm on a maintenance protocol that includes a monthly Darzalex Fast pro injection. I tolerate it well with no major side effects except...1 to 2 days after the injection I get a red face - cheeks, nose mostly. Lasts the day and then goes away. Anyone else on Dara experience this? Doctors and nurses say "wow - that's a new one."

Maintenance therapy: 59 yo post SCT poor cytogenetics did sarc, rev, val, dex for induction now starting Dara, vev, val, dex for maintenance. Trying to get to a every monthly only schedule. My question is how long are people staying on Velcade, assuming no adverse events? Anyone doing anything else this in the situation?

I was diagnosed with MM in Oct 23 and after 9 months of treatment went into remission and have remained so thus far. I'm based in the UK so have the benefit of our wonderful National Health Service. Recently two outstanding consultants who specialise in treating myeloma have started a weekly podcast. We're now on number 13 and it has been a learning exercise like no other, riveting in fact. Delivered in an easy to listen style but full of information you'd never normally get with limited time appointments. I think it complements Health Tree Foundation work and adds to the patient knowledge. Please try it out themyelomaminutes.com available pretty much on all podcast suppliers. If you like it and it helps be sure to tell others and do tellme so I can pass on your thoughts

I was asked to give my portal and pass word, to someone in this organization!! I am so happy with this company it more help than I ever got from my worker at another company! Why am I writing this, because my family says it's against the law, and who knows what they will do with it, can anyone tell me what is going on? Honest I have been scared so so so many times I am afarid, now being sick thinking isn't my first choice, but I don't want to lose this. Can I get some reply's? Thank you.

Hi all, I’m in my 2nd month of induction therapy and revlimid has been a nightmare! I started at 25mg but it made my scalp itch and burn and the skin on my chest and back sensitive to touch. I’ve since had the dose reduced to 15mg it got a little better but I don’t think i can do this for 4 cycles! I’m also getting palpitations. Has anyone had this and switched to Pomalyst? Anyone taking pomalyst instead of revlimid without side effects? Thanks!!

Hi all, I had my ASCT in Jan 2024 and have been on Revlimid/dara maintenance since. Now I have found (after an suspicious mammogram and subsequent breast biopsy) that I have Ductal Carcinoma In Situ. I will need to meet with a surgeon to discuss options. From what I have read most folks who have DCIS have a lumpectomy, several rounds of radiation and go on hormone blockers for a period of time. It is very successful and some say curable. However, talking with my MM oncologist she suggested that if I have a mastectomy I may not need any of the other treatments. With everything myeloma brings she was suggesting in the long run it might be an easier way to go. One less thing to think about and no worries about what the radiation and hormone blockers are doing. Has anyone had DCIS and MM at the same time and what were your treatments and outcomes? Thanks. Judy

Shoulder pain My left shoulder has been paining since about 2 months, i visited the PT and he seems to think it is a muscle pain. I have been doing various exercises but of not much help. As the pain has been there for about 3 months, i am worried it may be due to bond damage due to myeloma. Wanted to check of bone related pain symptoms? Is it very painful? Consistent throughout the time it started? Any other description of the bone damage related pain would help me.

Anyone have any issues with a nerve from the back going down to the right thigh and causing numbing, burning feeling in the right thigh as well as some pain. My doctor said there's degenerative disc issues and slight arthritis in the back, what have you done to resolve this issue, Thanks