Has anybody experienced loss of taste, food tasting bad. If so, did you find anything that helped?

I got off of Dex in June. I am on Sarclisa and Revlimid. I had a few weeks of upper back pain after getting off Dex which could be from working out or withdrawal from Dex. I'm not missing the Dex now that I have adjusted to being off of it. Interested in others' experience who aren't on Dex anymore.

Good day all: This question is for those on Revlimid; What time of day do you take your Revlimid. I am on 10mg. 3 weeks a month. I also do Darzalex once a month. I have a terrible time waking up in the morning. I take Revlimid at about 8 p.m. I wake up shaking, like I am vibrating. Even my vision is vibrating. I suspect neuropathy. My oxygen is good at around 98, my pulse is around 60. I do have mild sleep apnea, but can not do a C-Pap machine. I only have apnea if I lie on my back. I tried a C-Pap for 18 months I developed some serious problems with air in my stomach and my ears. I am seeing a specialist, who recommended I just sleep on my side. I see her again in 3 weeks. I believe if sleep apnea was causing the shaking my waking pulse would be higher. My waking blood pressure is about 115/65. I wonder if the Revlimid is causing part of the problem. Does anyone take Revlimid in the morning? Thanks, Sharon

I have a question for those taking Darzalex Faspro. My doctor said I could stop my Dex completely. So I’ve been working my way down from 20mg the day of treatment to 4. I get my treatment on Fridays, and on Monday or Tuesday I get a weird feeling that sort of feels like anxiety, and it’s a sign I need to lay down and take a nap. Usually feel better thereafter. When I was on the higher doses, I would feel a tightness around my midsection as well. I Don’t remember experiencing that when I was down to about 12mg. However at 8mg and 4mg, I was feeling an increase in body aches I guess I would call it. So I tried 12 mg again today with my treatment. I do take a daily Claritin for allergies, so that’s not changed. And I still take 2 Benedryl the day of my infusion. I just realized that I also weaned myself off of 50mg of Benedryl I had been taking nightly to help both with sleep and allergies. I took my last dose Jun 16. I had infusions on June 13 (4mg Dex), July 18 (4mg Dex), August 15 (8mg Dex), and September 19 (today 12mg Dex). I’m beginning to wonder if taking the 50mg of Benedryl nightly was holding these body aches at bay, and it’s the lack of that (not the lower dose of Dex) that is causing an increase in body aches. Has anyone been instructed by their doctor to take Benedryl in the days after infusion in addition to the day of? Any insight would be appreciated. I would love to stop the Dex completely, and if that means taking Benedryl for a few extra days a month, I’m okay with that!

Just wondering if anyone else has Igg kappa, high risk, stage2, 17p deletion, aggressive. I was diagnosed July 2024. Received 6 cycles of drvd. Had ASCT February 2025. Had a very good partial response. On maintenance of darzalex monthly and revlimid 10 mg. I’ve been feeling good even though my Dr says I have a poor prognosis.

Hello, I want to hear from people with myeloma who are getting Bite treatments (Bispecific T-Cell Engagers)

hi. I am wondering how I can add my daughter to this app im the one with the cancer and bless her she is right beside me helping coordinate all of the information. it was her idea that I start using this app. my cancer MM IgG Kappa and so far from what we have deciphered from the lab results, most recent was the bone marrow biopsy, looks like stage 2. my younger sister lost her bottle with MM 8 years years ago this past August 17th. I have the Lytic lesions in my skull but so far nowhere else, cannot shake the constant headache.

Diagnosed July 2022 w/IGA Lambda Free Light Chain Myeloma. I am 70yrs old. Currently in a Clinical Trial (MomenTal-6) through Nebraska Medical: Buffet Cancer Center. I started 2 bi-specifics Talquetamab and Teclistamab and Dexamethasone in combination on Aug 18, 2025. I was taken off Revlimid/Daratumamab/Dexamethasone July 2025 as it was not as effective anymore as when I was first diagnosed. I never reached remission. I have a comorbidity of cardiomyopathy. Not eligible for SCT or CarT. Would love to connect with anyone else on these bi-specifics especially regarding side effects etc.

For Blood Cancer Awareness Month, I went out on a limb and wrote a series of posts for LinkedIn to help spread the word and provide more insight into the journey than the paper-thin stuff some of the foundations have been posting. So far I've written about what it is, diagnosis, treatment, and the costs. I have two more planned on supporting a cancer patient (and their care partners!), and finally resources available. A former colleague was recently diagnosed with MGUS and hadn't heard about Healthtree or how/why to get a specialist. She does now. A woman I've never met offered to get tested for bone marrow transplant eligibility because her family had to deal with blood cancer. I pointed her to Blood Cancer United where I'm sure she'll be able to help. And health professionals from around the world have commented or reposted. Which is kinda cool. At least a few more people know about MM. Here's my profile if anyone wants to check it out. https://www.linkedin.com/in/tim-johnson-9152b42/ Be well, everyone.

Is curing myeloma really possible? In this HealthTree University video, world-renowned myeloma expert Dr. Jagannath shares why he believes we are on the path to curing multiple myeloma. He explains the latest progress in treatments, research breakthroughs, and what gives him hope for the future. Watch the full video here: https://www.youtube.com/watch?v=zFSUxJXxOAg

My husband was diagnosed with MM January 2024, with spine fractures and spinal lesions. He also has disc bulges, and spinal stenosis caused by arthritis and pinched nerves. He suffers from constant sever back pain. He is adverse to taking narcotics or any drugs that will impact his mental capacity as he is experiencing brain fog and severe fatigue from the maintenance regime of Dara/pomolyst. He is doing Accupunture weekly and swimming 3 times a week. Has anyone with similar issues tried the steroid injections in the lower spine? If so what were the results? How often are you getting the injections? Are there other options that you have found to be effective? Has anyone found PT to be effective? He had a bad experience with PT before they realized he had spine fractures and is very hesitant to try it again

I’m going to start Talvey this week after trying polmalist and krypolis My sct lasted about 9 months. Trying to bring my light chains down to have Car-t. I was wondering how well Talvey worked for you and if the side effects were doable? Also how long before you saw results? I’m 71 and female. I appreciate any input. Thank you.

what to do about fatigue....first thing in the morning

Just curious to those that have gone thru the Carvytki CAR T, how long after the infusion did you start seeing a response? I just had my first serum myeloma panel and my light chains are basically nonexistent but I am still showing a .4 m-spike. I am 28 days post CAR T. I see the doctor today, but I am just curious if others still had an m-spike that continued to go down. Thank you in advance for your responses.

Hello everyone, whoever reach MRD negative, after how long they relapse , please mention your age and if you are a high risk. Thank you