I want to start a discussion about revlimid. The uber expensive maintenance drug. I have been on 10 mg since 01/01/2023 and will be on it until 12/31/2024. The symptoms have dominated my day to day since 01/01/2024. When I hit a year in everything was amplified. The fatigue, nausea, neuropathy, balance, depression, severe muscled cramps then the newest severe GI symptoms that make me afraid to be too far from a bathroom. I do have some good days but when my bad days come they are bad. I am still working and really hope that come January next year I will drop some of the symptoms; muscle cramps, GI symptoms, malaise. I do a lot of pouting by myself and know the revlimid is working great to keep my labs in a great place. But, geeze I am tired of feeling poopy most of the time. My pharmacist in Hematologist's office has been great and offered to reduce the dose. I do not want to because again my lab number are beautiful. A nurse at the infusion clinic said people she has worked with do experience symptoms stopping after 2-3 months. Has anyone gotten to the other side and can report on this. I am a rational person and an RN myself (24 yrs) so I know the value of treatment. My other side is a whiny baby and want to feel an equilibrium for a better quality of life. Maybe work another 2-3 years and retire while in remission. I could go on longer about how stifled I feel but I would like anyone to tell me their revlimid journey. Thanks

I loom knit. These two cats are for the nurses and the bunny for child oncology.

"Victory Friday: Share your wins, big or small, from this week here." https://healthtree.org/myeloma/connect/group/87tPU6BgpkqMXXCv5kke

I am here six years undetectable from Multiple Myeloma. I contribute more than 50% of My Success in my myeloma Journey in meeting Jenny through another organizations a myeloma symposium. One of Healthtrees representative invited me to a Crowd ? meeting there I got so much information from providers of healthcare. There was information on treatment team expertise, I met or got connected with Sparkcures and their help with finding the right Hospital prepaired me to know exactly what to request of my oncologist and submit before making that Journey across a couple of states for the appointment a wonderful experience. My Specialist was impressed that I got there and all the records that he needed were there prior to my visit. When it came time for my stem cell transplant I had had enough knowledge from having the opportunity to meet other transplant patience to know how to prepare for the hospital visit. And what things I could take to give myself a better mindset. Everyone was so encouraging and inspiring that I've committed to coaching. Partiacpating in Twin program allows my condition to help someone. And if know I am not alone. I even got the courage to rock my bald head and use it as an opportunity to tell everybody about the Wonders of Healthtree organization. In case they knew somebody that may have myeloma precursors or MGUS, Smoldering M or Multiple Myeloma. I call it my M&M's and thanks to Healthtree we are eating them up. Its all in your attitude I believe... lets inspire someone else. Turning an poetical into a opportunity is everything. You can win! Thanks JA . My Life is BETTER by the 🌴 #MarronRibbonsAllAround lover, OhiO

I was diagnosed with multiple myeloma in the spring of 2016 and then was given 20mg Revlimid (daily) and valcaid (weekly) until my light chains dropped from 1660 to 375. In December 2016 I received a stem-cell transplant, which did not fully cure my myeloma. For approximately three (3) years I continued with 15mg Revlimid (daily) and then stopped taking it. For about two years (taking labs every six weeks), my light chains vacillated between 130 and 150. Now here I stand with no ill effects but not fully cured.

Hi all, It’s almost time for my husband’s SCT, next week and I have a couple of questions, (Sorry if these have been asked before, could not find an easy way to search past posts) Skin care What did you used for dry skin? I’m afraid his current products (lotion, oil) might be too harsh, especially after chemo. Aqua guard sheets what size did you get to keep dry the picc line? Is bigger better? Thanks, Margarita

In 2020 I was in a very dark place. Being diagnosed with MM and related renal failure the previous year, I put my hopes in a SCT to turn the tide. Unfortunately, it completely failed, plus I developed a pseudograph vs host disorder with a lot of suffering. Covid, because of my recent SCT, turned me into a hermit where I did not leave my house, except for medical visits, as I tried a series of traditional chemo therapies, with limited success. My prayers shifted from God save me, to God please end my life. It had been my dream to go to Europe to restore an old stone cottage in retirement. With all my dreams gone up in smoke, I decided to build an "old" stone cottage on our property, to build my strength, give me something to distract from my suffering and self-pity. I am not a builder but have done almost all the work myself. I am halfway through and will start the stonework this summer. Meanwhile, I started a monoclonal antibody two years ago, which put me into stringent remission, now for two years. The cottage saved my life, which I now call "The Healing Hut."

Someone posted...I am doing infrared therapy hyperbaric chamber. And also ozone and foot detox it has helped me tremendously. Can anyone please explain what these are, where to get them, how they work, how much do they cost, etc.? I have HRMM 1 q gain. Would these be good for me?

New study for Smoldering Myeloma patients! Dr. Shah from MSK is investigating whether a plant-based diet or supplements like probiotics, omega-3, and curcumin will improve microbiome composition. Complete a 15-minute survey to find out if you’re eligible to join: https://healthtree.org/myeloma/curehub/private/research/5jLN2I1z8ORyETSwrhNY?utm_source=social+media&utm_medium=connect&utm_campaign=nutrivention&utm_content=smoldering

I was recently diagnosed with mm in the beginning of the year as result of stage 5 kidney dysfunction. I started induction treatment of DVD. On my 4th cycle of treatment I was given my first shot of Xgeva. Few days later I notice pain in my left arm, not sure if it is bone pain or muscle pain. Has anyone experience this? My Dr. recommend adding cytoxin to my current treatment. I would like a feedback to cytoxin.

Being an Army person I like short and sweet. Also abbreviations kill me. I took Talvey for my multiple myeloma which didn’t work. Also has skin, taste and nail side effect. Unreal. So from my point of view I wouldn’t use it.

Hello All, Wondering if anyone has taken Dararumamab after relapsing and if so, what type of side effects did you experience and were you able to work? I’m 60 and was diagnosed in August 2017 with renal failure, anemia, and numerous lytic lesions. Achieved remission fairly quickly 🙏 after an agressive CyBorD regimen for 4 months, continued with Velcade and Ninlaro for another 15 months. I’ve been medication free since then. I continued with blood work every three months and for the past 20 months the Kappa Light Chains have slowly and steadily climbed upward and are now at 428. My hematologist/Myeloma specialist and I met yesterday and agreed to continue to monitor once a month and set parameters on the numbers he is most concerned with so that if/when the numbers reach or exceed the parameters, we will have a conversation about Daratumamab treatment. I am feeling good now without any symptoms besides a little fatigue.Thanks in advance!

If you have read "Living Well with Cancer", I would love your opinion on it? TIA, Keith 3X Cancer Survivor