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Multiple Myeloma

BAM Bile Acid Malabsorption from Revlimid (lenalidomide)
Aloha.... I was in the Accent clinical trial for multiple myeloma, which was a four cocktail (DKRD) or Daratumamab (Darzalex); Carfilzomib (Krypolis), Lenalidomide (Revlimid), and Dexamethasone (steroid). This was 24 month clinical trial and about 8 months in I started having #2 (bowel movement) issues. I developed Bile…
Information needed on Multiple Myeloma
My friend's Mother was Diagnosed with Mutiple Myeloma two months back, with 40% plasma cells & Mband was present in Serum protein electrophoresis report. Recently we have got the test done again & this time M Band was absent. Does this means that, Multiple myeloma is cured or should we go for Bone Marrow Biopsy test again?…
After Lenalidomide Resistance
Anyone have any experience with treatments after becoming resistant to lenalidomide? What does the treatment course look like?
Multiple Myeloma-CAR T Cell Therapy
I am interested in real life accounts of the CAR T cell therapy process. My father is seriously considering this treatment but is worried about Neurotoxicity, specifically memory loss as well as other serious side effects. This is a decision that he has to ultimately make…he is just really having a hard time with the…
Anti-nausea options for chemo? multiple myeloma
I'm currently undergoing weekly chemotherapy and the biggest side effect for me is nausea, which now seems to last all week. I receive an IV of Akynzeo which prevents vomiting (which I was doing weekly until it was added) and have tried Ondansetron, Metoclopramid, Meclizine, and medical Cannibis, none of which seem to work…
Multiple Myeloma Stem Cell Transplant
I’ve been recently diagnosed with mm at age 67. Must now decide whether to get a stem cell transplant. My doctor says because of so many new treatments coming out, I could go either way. For those who did or did not get a stem cell transplant… how did it go for you?
Financial Relief?
Hi all. In short, I was diagnosed with Multiple Myeloma in 2018. I am insured by Blue Cross Blue Shield of Michigan through my workplace. ($3,000 deductible and 6 to $7,000 max out-of-pocket. My biggest struggle is financial. Since my diagnosis (2018) I have incurred co-pays for treatment that reach Maximum out-of-pocket…
Insurance
My sister was diagnosed with MM in June 2020. She has gone thru chemo and a car t cell transplant. She has to go on remvilid for maintenance. She has to go on medicare in May because she is turning 65. I am trying to find the best insurance plan I can because the treatment is so expensive. I was wondering if anyone knows…
Family member diagnosed with MM. What to expect
Hello everyone, I was just told my 47y/o sister was diagnosed with MM. I know nothing about the disease and doing web searches is confusing. On average it says that life expectancy is five years. This is distressing. Do I really only have five more years with my sister? As only a family member, is there anything I can do…
IS MULTIPLE MYELOMA HEREDIATARY?
I am not sure if anyone knows the answer to this question but I am hopeful someone will be able to help me out. My mom was diagnosed at age 50 and only lived 3 years with the disease. I am coming up on that age very soon and just wonder if this is hereditary? And if so what are some steps to take to see if you might be at…
MGus
Blessings to all, I was diagnosed with having MGus last year. My levels are low for right now. I was referred to this site as I was seeking out a support group. With so much information out there, I'm curious to find out how one is coping with this? I still have not received my Covid shot and was wondering who did/did not?…
Living Well With Cancer
I have developed a nine point plan that I follow faithfully. This plan has enabled me to feel healthier (both mentally and physically!) at 69 than at any time since I stopped playing hockey at age 28. Following these eight steps has made a dramatic impact on my physical and mental health. 1) Get the best medical care…
Myeloma
Good evening all! I am about to start 10 days of radiation on Monday. I have been doing chemo for 3 months and I am scared. I've lived with lupus for 17 years, but was just diagnosed with multiple myeloma Labor Day. A bone marrow transplant is next and that definitely scares me. Thank you for hearing me out.
Need help
Hi everyone, I need some urgent advice. I have been having worsening bone pain since January this year and now its at a point where I cant sleep at night and i am feeling it in my head, neck, chest, back. lower back, arms and legs. I am also having a burning sensation feeling in my forhead and legs and having numbness in…
Stem Cell Transplant
Hi All. My husband was diagnosed in August 2022 with MM. After 5 sessions of velcade/Dex and Revlamid we are 2 weeks away from a stem cell transplant. They say he's a good candidate, but I am so scared he won't make it through. Has anyone had this done, know someone who has gone through this? 😕 It's been a tough time and…
Multiple myeloma
Anyone here been tested for MM and test negative, then years later test positive ?
Insurance Won’t Cover Revlimid - HELP
Hi, My aunt has been taking Revlimid for 4 years now. It has been covered this entire time, but this past month the insurance company stopped covering it. The doctor has completed and appeal. My aunt has appealed. The doctor completed a peer to peer. The insurance company just will not cover it. They also will not tell her…
day 28
Hi.. Im on day 28 of steam cell transplant and still feel very weak....the MM took out my t11 on my back so I had a very long surgery . Im wondering is my overwelming weakness due to the transplant or the surgury. The only time Im feeling semi ok is when Im sitting. Is anyone else on day 28 ....am i babying myself because…
High Kappa Light Chains
I've been off and on sick since 2015. First in 2015 I woke up in extreme pain all over my body. Drs didn't know what it was. After about 9 months of being in pain I switched to a whole foods plant-based diet in early 2016 and I got better. About 2 years later I got sick again. A lot of body pain. Then I went on a super…
multiple myeloma
I've just recently been diagnosed with several types of cancer&"possible" cancers. Multiple myeloma--thyroid--jugular vein--large bowel--skin cancer. Can someone out there give me some info on any of them? I can't go through-chemo-radiation or bone marrow transplant.thanks. sonitikki@earthlink.net
Anyone With Velcade (bortezomib) Experience
I'm 41 and just diagnosed in stage III with Multiple Myeloma. My doctor is starting me in a clinical trial with Velcade next week. I'll be going twice a week for IV treatment, two weeks on and one week off for 12 weeks. Has anyone had any experience with this treatment which they could share? What dosage level did you…
Burning Feet from Multiple Myloma
Hi everyone. I had a tumor removed from my spine and ever since my legs are very impaired. Walking is very difficult even w a walker. My feet lately have been tingling and on fire. Any suggestions? Thank you
OVERWHELMED BUT DRIVEN
Hello everyone! I’m Jason [Content removed by CSN Support Team] nice to share my story with you. So I’ve been reaching out more as a means to hopefully be over this episode that has drastically changed most of my life. I’m 48, never or rarely sick, never even been to a hospital until this. Perfect health most my life until…
BAM Bile Acid Malabsorption from Revlimid (lenalidomide)
Aloha.... I was in the Accent clinical trial for multiple myeloma, which was a four cocktail (DKRD) or Daratumamab (Darzalex); Carfilzomib (Krypolis), Lenalidomide (Revlimid), and Dexamethasone (steroid). This was 24 month clinical trial and about 8 months in I started having #2 (bowel movement) issues. I developed Bile…
Mucosal Melanoma
My husband was diagnosed with Mucosal in May. Has had 2 treatments and now is going to try another that is only 17 percent affective. We are in our early 50s and have been married for almost 29 years. Chemo won’t work on this illness. I try to have hope but the doctor implied this is mostly a sad ending.
Re-occurring plasmacytoma in a different location
Is there anyone that has had re-occurring plasmacytoma in a different location. This is my second bout. First was in my back (2002)and now I start treatment in my hip. My doctor says it is very unique specimen to have another singular tumor in a different location. The hope is way eliminating the tumor will also eliminate…
Eating
My son recently had 20 treatments of radiation, neck back and lower spine. He is so weak from not eating. Heard that honey in the throat would help. Has anyone used it and how successful was it. He really needs to eat to get stronger. Currently can't walk from weakness. Help.
New here parent with MM
My name is Kylee. About a month ago we found out my mother has MM. It's been extremely hard on me,I'm the only family in town,I try my hardest to help her as much as I can even though I have two small children and work part time and don't know how to drive. It's starting to take a toll on me and my job. She's very stubborn…
Side effects of Revlimid w/ MM
Hi, I have been looking forever for a site like this! My husband has MM. Our marriage has completely changed. When he started the chemo treatment, it was DEX and Revlimid. The DEX made him absolutely crazy. He was mean, irrational, and say the most awful things to me. It was a nightmare. For 4 years. This year his…
Lab work questions
Hello. I'm Tony. Can I get some thoughts on my recent lab work. I have had unspecified anemia for years. Just recently, my cancer doctor took a look at past lab work and suggested that I may have myeloma and did a lot of blood work. My Kappa chain came back very high at 42.0. The Kappa/Lambda Ratio was high as well at…

Multiple Myeloma

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