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1finegrandma
Multiple Myeloma Discussion • November 21
New Sequence Detected on ClonoSeq
I received my 90-day post CAR T results, and all results showed Zero cancer detected. I want to be happy, but my ClonoSeq shows a new sequence detected. My specialist couldn't give me an answer as to what this is. It reads as follows: New dominant sequence found. Significance unknown. The previous sequences tracked for the purpose of MRD determination were not detected. I feel very confused and not even sure what questions to ask. Any advice would be helpful. Thank you.
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plumSeal
Multiple Myeloma Discussion • November 21
increase of M-protein with dara faspro
is anyone on the regime of dara faspro, & pomalyst (stopped Dex in April bc I had taken it for 5 yrs previously)
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Blondie1746
Multiple Myeloma Discussion • November 20
neuropathy help
Has anyone heard of or tried manuka honey to help with neuropathy? I did not see any mention of it in the side-effect solutions. Thanks!
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NKP64
Multiple Myeloma Discussion • November 20
KPD/KRD
Hi everyone, I wanted to understand your experience with KRD/KPD treatment schedules. For those who were on carfilzomib, how long did you remain on the 3-times-per-cycle schedule before your doctor reduced it to 2 times per cycle? Was there a standard protocol followed in your case — for example, completing X cycles before shifting to a less intensive schedule, or did it depend on your PET-CT/M-protein/light chain response? Any insights into how your oncologist decided when to reduce the frequency would be very helpful.
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kgallmeyer
Multiple Myeloma Discussion • November 20
Sharing My Transplant Journey
I had Stem Cell . Bone marrow transplant at +35 day. My bones still hurt, how long will that go on?
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Gerii2002
Multiple Myeloma Discussion • November 20
I need team help, please
Have said before they took it from my back bone, and that time they told me I had MM. I never got medicine, and I get checked every 3 months, still to this day. I need a doctor that deals with MM, I don't know where I stand. I can barely walk, pains in my back, legs stomach, there is no cure. This is a long story who can help me? This is my second cancer, I had anal cancer and when they found it it was a stage 4!!! Sounds wild , I know the pain I was in for at least 3 years, and one day I went to a knew dr. He too told me it's an anal tear, I walked out and went to 1 last dr. I knew his name but not how great he really was! The next morning my G.P called me in and he told me I have cancer, went to the hospital and they found it! Just like Farrah Facwett, I made it. I feel the same thing is happening now, I know from the pain , can someone help me please?
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salmonWhale
Multiple Myeloma Discussion • November 20
What are your experiences with radiation therapy and recovery?
My last radiation dose was three weeks ago in my neck vertebrae, and I'm still experiencing fair pain, no taste, and some hair loss. In the beginning, swallowing was very painful, but that's okay now. I voluntarily stopped the Oxycontdine and narcotic skin patches because of brain fog which was frightening. But I'm past the worst of the physical pain now. Can other's give me an idea on how long the pain and zero taste will continue? Many thanks.
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ecruHare
Multiple Myeloma Discussion • November 19
Long time member saying hello.
Hi, I'm Mary from Greensboro, N.C.. I'm in my fifth year of having myeloma, and early on learned about this wonderful organization. Whenever I meet someone who has myeloma, I ask them if they have heard about Health Tree, if they haven't I encourage them to check it out. In fact, I wish I had flyers I could hand out. I admire Jenny for the wonderful job she is doing in helping all myeloma patients with understanding and dealing with this disease. She is an amazing woman who is doing amazing things. And I'm so grateful for all she is doing to help us on our cancer journeys.
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MAD78
Multiple Myeloma Discussion • November 19
TALVEY SIDE EFFECT
Hi everyone, I'm a 47 years old italian patient, My MM diagnises go back in 1997, so now are 28 years that I live with it (Fortunally!!) As you can imagine I had a lot of treatment and autotrasplant, now I'm with Talvey, anyone has fever about 3 days and also one week later injection? Do you have vaccination (Flu, Herpes zoster,Streptococcus pneumoniae, Covid) while you are on Talvey treatment ? Many thanks, Marzia
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SuzyTT
Multiple Myeloma Discussion • November 19
Myeloma Care While Living Abroad
Do you have any experience with getting myeloma care (treatment or other) while traveling or living outside the US? Any info/insights much appreciated!
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Suzukiviolin25
Multiple Myeloma Discussion • November 19
Lenalidomide (revlimid) rash
I just started treatment last Friday and after 4 days my head, ears, and forehead began to itch like crazy. Then I noticed red blotches on various parts of my body. My team said its a revlimid rash and have me taking claritin and benadryl. They will also prescribe a cream to use. Has anyone had this rash right after starting treatment? I am on Dara KRD treatment. Does this just disappear after some time or is it constant? Hoping it resolves and doesn't escalate. My team advised me to let them know any changes. Any comments or experiences with this type of rash are welcome.
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Pmp777@gmail.com
Multiple Myeloma Discussion • November 19
Skin issues due to Talvey
Has anyone experienced serious skin issues, peeling, itching and pain from taking Talvey?
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Bluestreak
Multiple Myeloma Discussion • November 18
Experiencing Light Sensitivity - Anyone Else?
I started having light sensitivy and what was called auras, I called blurred or swirling in my eyes. They would drain and sometimes feel like I had gotten punched in my right eye, but the pain stayed as if the fist was still there. Then I would get a migraine. I explained this to my oncologist, who referred me to a ophthalmologist. He did testing and determined that I had dry eye, and my right cornea was scratched. Mind you, prior to my oncologist referral, I had seen a optometrist and gotten stronger glasses, that didn't help, and I didn't need. I was told to get Systane drops over the counter, and use 3-4 times a day. Things should get better with continued use. He also told me that the chemo given for the stem cell transplant was the culprit. I have had two SCT's. My symptoms did improve, I can wear my reading glasses, and only use the eye drops a couple of times a week now.
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kenlevy
Multiple Myeloma Discussion • November 18
CPR Funds are Now Open
CPR Funds Now Open: Multiple Myeloma, Multiple Myeloma Health Equity, Ulcerative Colitis The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.
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kenlevy
Multiple Myeloma Discussion • November 18
CPR Funds Are Now Open
CPR Funds Now Open: Multiple Myeloma, Multiple Myeloma Health Equity, Ulcerative Colitis The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/#/login, with access available for patients, providers, and pharmacies.
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Bev22
Multiple Myeloma Discussion • November 18
Dry Mouth after ASCT - Any suggestions?
Has anyone experienced severe dry mouth symptoms 50 days post ASCT? It is extremely difficult to eat and talk. Gum, lozenges, etc. don't seem to help. Eating is difficult as it is having limited taste. Any suggestions?