After 12 weeks of drug treatment, I reached remission. My case was stage 1. While I successfully reached remission, I now have a blazing case of peripheral neuropathy. Feet are on fire, sleep is difficult, and 4 fingers are cold and restrictive inn use. The culprit in this is Velcade. Anyone taking drug treatment should be aware of this. I am convinced that reduced doses of Velcade would be preferable to the terrible neuropathy I now suffer. LEN PAULSEN Brentwood TN

My wife was diagnosed with multiple myeloma in July 2024. She is 61 years old. She used to exercise an hour a day spinning and swimming prior to the diagnosis. She may be getting stem cell transplant by the end of the year in Pittsburgh at Hillman Cancer Center. We are looking for feedback from someone who has gone through stem cell transplant recently. We are looking for information regarding side effects especially after discharge from hospital, recovery, ability to go back to gym, traveling, socializing etc. Thank you.

Hello everyone! I achieved MRD negativitity a couple of Months ago after 5 rounds of DVRd and 3 rounds of KRD (together with keto, fasting and vegan food). I decided not to go through with ASCT. I feel 100% well and my blood counts are all normal apart from low white blood values. My doctors says it is because of my lenalidomide maintenance. My doctor also wants me to continue with Zoledronic acid once a Month. Not because there is any current need but as a precaution. Anyone with similar experience here that can tell me for how long you typically continue with Len and Zoledronic acid after achieving MRD neg?

What is the name of the shot we get when our neutrophils are low?

I was diagnosed with PCL in Jan 23 and began isatuximab (S), VRD and was in remission in 4-5 months, followed by and SCT last September. MRD two months later was negative. However, due to high risk disease (78% plasma cells in blood and 3 markers at diagnosis), my specialist thought it best to resume SVR (no dex thankfully). I have remained in remission but I think the Velcade is affecting my kidneys. I had renal insufficiency at diagnosis which markedly improved. After stopping Velcade et all prior to the SCT, my renal function normalized and stayed that way until after beginning maintenance therapy. I had severe GI SE from the Velcade (constipation) and finally my team agreed to cut the dose in half. Much improved, though my renal function is still off with an estimated GFR in the 50's. My question is, if you have achieved remission or close to it, what is your maintenance therapy? My team is understandably worried that PCL will relapse but I am wondering if I can risk stopping the Velcade. I know Kyprolis is an alternative but it can affect the heart, so given my history, I would chose renal damage over heart. I know this is an impossible question as so little is known about PCL. I suppose in the long run, I can stay with it as long as my kidneys don't get worse. Thanks and good cheer to all. Deborah

question, everybody.....in regards to drinking at least 64oz. of water.....is anyone just drinking distilled water so you don't get the extra minerals in your water.....someone mentioned distilled water....we buy bottled water but not distilled....my husbands creatine level is at the top 1.3 and he drinks plenty of water but wondered if switching to distilled would make a difference.

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

HealthTree is currently interviewing patients who have received the bispecific antibody talquetamab (TALVEY). This bispecific antibody that targets GPRC5D. It works by attracting the innate immune system to come and kill the myeloma cells. If you have received talquetamab (TALVEY) and are interested in participating, please react to this post so we can provide more details about the study by mail. If you haven't received TALVEY but know someone who has, please share this post with them.