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Multiple Myeloma

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Multiple myeloma
Anyone here been tested for MM and test negative, then years later test positive ?
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?
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…
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…
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.
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…
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 Tests
Hi everyone...just joined and had a few questions. I am in the process of being tested for MM and am finding myself easily confused. I did a 24 hour urine collection the other day and the results were 14 mg/dl of total protein and reference said less than 15 is normal. My Beta 2 Microglobulin Serum is 2.3 mg/l...reference…
Learning about whats happening to me
I knew I was very unwell 6 years ago but it could have been with me for as much as 11 years, my oncologist has been like a high pressure used car salesman trying to get me to drink his Kool-Aid, I told him I'm not doing treatment & I think I seen the dollar signs fall from his eyes. I need to know more! The pain & the…
What to expect ? Anyone tried Faspro?
My mother was just recently diagnosed with advanced MM. She is 77 yrs old. She was started on steroids and short developed a MM tumor in her eye and can’t see in the left eye. She was recently started on Faspro(daratumumab). Now her condition seems worse. She’s very weak, unstable on her feet, lethargic, looks skinnier,…
MM with Secondary Cancer
Hello, My dad was diagnosed in 2013 with MM, this is his journey in a nutshell... . He has the additional complication of 17p deletion. In September 2014 he undertook a stem cell transplant but has never gone into remission. Over the years he has been on every drug on offer but still never got remission. In 2021, dad was…
Parent with MM
Hello, my dad was recently diagnosed with multiple myeloma. Understandably, the diagnosis has been hard on my family. My dad has never been one to talk about his emotions or ask for help. He is also a doctor. I’m afraid that he is holding back his emotions. I know that if the diagnosis has had this big of an impact on me…
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…
How to help a sick friend
Please help me. I need some advice. I have a very dear friend who is a survivor of throat cancer. He was recently diagnosed with multiple myeloma and is going through some very extreme and rough treatments. I have always let him know that I’m here for him texting every day just sending love and support. Until recently he…
Want to give up
I have had multiple myeloma for three and one half years. It was caught very late, despite my going to the doctor about my symptoms for four years. I have had many treatments including a stem cell transplant. But, despite the fact that I am now in a remission, I do not feel better. The treatments damaged my heart, lungs,…
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…
Relapsed refractory myeloma question
Hi everyone, my mom was diagnosed with relapsed multiple myeloma in February 2020. She had been on Daratumumab and Pomalyst about eight months, but was taken off the Pomalyst due to extreme fatigue and neutropenia and put on Ixasomib (Ninlaro) plus Daratumumab plus Dexamthasone. She’s been on this for 6 months. This has…
Please need your help
I am heartbroken. My father went through nasal cancer in 2013. I became a member of this site to get advice, tips, ideas on how to help my father through all of this. My dad recently was found to have a tumor on his forehead that went through to the other side of skull (no brain or organ involvement). After the biopsy,…

Multiple Myeloma

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