I am curious to hear if anyone has had the serious muscle and joint pain and weakness on V. It has been terrible for me. I've gone from a very active, outdoor, energetic woman to one who has fallen several times, can barely climb one set of stairs, painful to kneel down or get up from the ground. This started at 3 months in and has continued even after being off the drug for 6 months. My Oncologist tells me that often these side affects don't go away ever. I live in the country, have raised horses for years, busy with yard work, a swimmer until taking the drug. Any suggestions other than light exercise? Since this problem started, I have actually fallen and fractured my kneecap because I have lost so much strength in my legs. This has actually changed my life in very unpleasant way. I am doing OK with the CLL, was first diagnosed in 2016. Only a couple of bad times when the WBC's got really low. Just wondering why they didn't mention this side affect when I started the drug and if anyone has heard if they have found a solution for this. I read the suggestions but no one seemed to have had the reaction I have had to taking V.

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.

My dentist doesn’t know about MDS. How can I help him learn what he should know?

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