I’m here to share just a tiny little something that I have found to improve my outlook, attitude and so, I guess, mental health. It may sound silly, but it has helped me and if it helps someone else, I’ll go for it. When I’m having a good day (we know those come and go) I focus intently on something and I say to myself, “WoW, I got up, got dressed, got to a doctor appointment, did a whole bunch of errands, and I feel really well!!! Remember, when I was in a wheelchair? On a walker? An incoherent post-transplant blob?! Hold onto this day, these moments!!!” This kind of self-talk really reminds me how well treatment has gone and that every single day is a miracle. I need to remind myself and stay positive. Good luck, everyone. You are not alone. Remind yourself.

I have elevated bilirubin 4.0

A friend sent me this article regarding Revlimid and how it is priced. It is an interesting as well as maddening read: https://www.propublica.org/article/revlimid-price-cancer-celgene-drugs-fda-multiple-myeloma

“If you could share one tip for coping, what would it be?” Let's start the conversation. Remember that what you share may help others!

Hello, My husband is getting Zarxio injections and tomorrow he is having his stem cells collected. I was just wondering if anything helps with the bone pain other than Tylenol and Claritin?? Thank you, -Lindsay

Not to stir things up, but this was an interesting read about the price of Revlimid: https://www.propublica.org/article/revlimid-price-cancer-celgene-drugs-fda-multiple-myeloma

I was diagnosed with Multiple Myeloma, Kappa IgG in 2019. I went to the doctor because of extreme rib pain and x-rays showed multiple rib fractures and lesions in over 85% of my bones. After starting my first treatment regimen of dexa, velcade, and Revlimid, I started getting intense discomfort around my ribs, around the diaphragm. It feels like I have pressure pushing up on my chest, almost like when I was 9 months pregnant. Or, like someone has tied a rope around the bottom of my chest and is pulling it really tight. I have tried tracking everything to determine if something triggers it, but I cannot find a correlation to anything, except that it usually gets worse as the day progresses. I know that something in my chest is expanding or swelling, because my bra becomes tighter as the day progresses and I have to take it off for relief. This discomfort in the diaphragm area has continued even after my stem cell transplant, where I achieved partial remission. I have since come out of remission, gone back into treatment and my most recent bone marrow biopsy shows MRD. However, I continue to have this discomfort and nobody can figure out what is causing it or how to relieve the pressure. I do take Lorazepam (Ativan) 0.5 mg which does help somewhat. Has anyone experienced this type of rib discomfort?

Hi, Based on some research from Australia that Curcumin strengthened the response from lenalidomide i have been taking 6 mg per day for many years. The Len lasted 5 years and then the Pom lasted another 5! A new range-of Curcumin called Kurk is available promising s new more powerful delivery method. It seems to have been developed in conjunction with some very credible people again in Australia Anyone know any more? Thank you for your wonderful resource Cheers John Hill

What has your experience been with CAR-T Cell therapy? 5 years ago I successfully went through a stem cell transplant. However, the Revlimid treatments have now reached the point where their efficacy is diminished, and the once-constrained multiple myeloma cells have "broken out" and formed a lesion in my brain stem. Radiation has shrunken the lesion, and it is not spreading. Yea!! We have switched to a three drug regime, Daratumumab, Pomalyst and Dexamethazone (DaraPomDex) but that too will lose its efficacy at some point. Because I will be 75 years old this year, and because I am in a healthy condition, I occupy a window of opportunity (which grows smaller and riskier) to undertake CAR-T cell therapy. I have been well informed as to the risks / side effects ranging from (only) headaches to Parkinsons. Please share with me your experience(s) with undertaking this treatment path so as to better inform me for what lays ahead? Thank you! Allan Shelley

Hi all I'm 37 year old female got diagnosed last year had 4 cycles of drvd which only had a patial response to it so reduced my mspike from 4.2 at diagnosis to 2.0 I was given a high dose of cyclophosphamide which took it to 1.5 and done a stem cell transplant which I was told didn't work. I'm am classed as high risk as I have 11q 13 gain. I was told that it didn't work and thwy are worried as it came back, but in my view it never went away! I am starting on krd next week? I have a 2 year old and I'm so scared with all of this. He didn't give me much reassurance as he was already taking about the 3rd line as if the 2nd one wasn't going to work. If anyone on this and can give me reassurance please or what to expect on this regime! I hope i will have loads of options if this doesn't work See less

Hi all I'm 37 year old female got diagnosed last year had 4 cycles of drvd which only had a patial response to it so reduced my mspike from 4.2 at diagnosis to 2.0 I was given a high dose of cyclophosphamide which took it to 1.5 and done a stem cell transplant which I was told didn't work. I'm am classed as high risk as I have 11q 13 gain. I was told that it didn't work and thwy are worried as it came back, but in my view it never went away! I am starting on krd next week? I have a 2 year old and I'm so scared with all of this. He didn't give me much reassurance as he was already taking about the 3rd line as if the 2nd one wasn't going to work. If anyone on this and can give me reassurance please or what to expect on this regime! I hope i will have loads of options if this doesn't work