What's new
Fantasy Football - Footballguys Forums

Welcome to Our Forums. Once you've registered and logged in, you're primed to talk football, among other topics, with the sharpest and most experienced fantasy players on the internet.

Anyone have Multiple Myeloma or know anyone that had it? (1 Viewer)

yak651

Footballguy
Not sure why I’m sharing this here but it seems to have helped others, so here goes...

Back in March my wife got the J&J covid shot. About 6 hours later she got sick, throwing up & nausea. This was on a Saturday. She was still dry heaving Monday (nothing in her) so I took her to urgent care. She was extremely dehydrated so they gave her a couple liters of Saline and took some blood samples. Dr came in and was very concerned with her numbers, saying Kidneys were at failing state. They debated admitting her to hospital but finally decided to let her go home but had follow up blood draws. This follow up same issue with numbers, they set additional follow ups. My sister told my wife to see a specialist so she set up an appointment with a Nephrologist. This guy tells her that yes kidney function is not normal (high protein levels) and don't know what is up, more blood test, kidney biopsy and appointment with an Oncologist. Go see him and take more blood, comes back and says you have Multiple Myeloma. What is that?? Cancer, ugh not what you want to here at 48 and feeling healthy minus what these blood labs are saying...Need to do a bone marrow biopsy and a PET scan. This is crazy, while she is getting the biopsy I look up MM. 2-5 year life expectancy. WTF??? We are both shook up, bone marrow biopsy confirms MM diagnosis. PET scan comes back clean from any other cancer areas so that is good. She started treatment last week with revelimind (sp?), velcade (sp?), Dex something...going to do this for about 4 cycles and then going to get a bone marrow transplant. Continuing to read up, think the 2-5 is from most people not getting diagnosed until they have had major issues so hopping this is the case. Quite a shock from feeling healthy and planning our next vacation to now we need to put you on a program that is going to make you feel like crap and hope you get better . Happy 2021 to me (oh yeah, my mom passed away in April and my brother's company just closed their doors, I would do anything to be back into 2020...)
 

Oh the Dr said she is lucky to have gotten sick. If this wasn't found for another 6 months her kidneys would've shut down and she would probably had needed a transplant. Kidney doc feels confident after treatment that her kidneys will be fine so will take that as a positive. Also the cancer doc seemed much more positive at our last appointment so going to take that as a positive. Need to research more about her numbers to try and figure out how advanced this is. Just looking to see if anyone else has gone thru this? Also just needed to get off my chest, she's been an emotional roller coaster and I try to reassure her things will be ok but how do you tell that to someone that has been told they have cancer and the first google search results show grim prognosis??

 
Sorry for the news 😢. Happy to answer specific questions as I worked for 20 years at an NCI cancer center treating these patients. 

Do you happen to know the stage (1, 2, or 3)?  People with early stage can live 5 years or LONGER!

Keep your spirits up, although incurable in late stages lots of advances in treating this cancer in the past 5-10 years. 

 
Last edited by a moderator:
Sorry for the news 😢. Happy to answer specific questions as I worked for 20 years at an NCI cancer center treating these patients. 

Do you happen to know the stage (1, 2, or 3)?  People with early stage can live 5 years or LONGER!

Keep your spirits up, although incurable in late stages lots of advances in treating this cancer in the past 5-10 years. 
Thanks - I’m having a hard time getting an answer on the stage. Her dr keeps saying it’s not really staged and I’ve read that there is but I don’t want to argue with him. We did get a second opinion at Froedtert in Milwaukee, one of the dr I see his name in national studies and he will be overseeing the BMT. During that consultation they agreed with the diagnosis and were waiting on some results from the bone marrow biopsy for the FISH scale. I need to try and get her to download all her numbers as I found one website that had a lot of different info for what the lab results mean

 
Thanks - I’m having a hard time getting an answer on the stage. Her dr keeps saying it’s not really staged and I’ve read that there is but I don’t want to argue with him. We did get a second opinion at Froedtert in Milwaukee, one of the dr I see his name in national studies and he will be overseeing the BMT. During that consultation they agreed with the diagnosis and were waiting on some results from the bone marrow biopsy for the FISH scale. I need to try and get her to download all her numbers as I found one website that had a lot of different info for what the lab results mean
Just ask any questions when you find out more and I’ll try and help. Best wishes 🍀

 
Oh and the initial treatments are technically chemo as they kill cancer cells but not the type that causes you to lose your hair. For some reason my wife things this means she won’t lose hers at all during this process but from reading I know she will during the BMT process. I know it sounds stupid with everything else happening but I’m really afraid of her emotional state when she learns this will happen....so it’s a ways off and I’m not saying anything

 
@yak651 Sorry for your struggles.  It sucks big time.  

As for your request for people who have had MM, I have a friend who was diagnosed in September 2010.  He is still going! 

He has a Caring Bridge page to describe his journey.  He describes it: MM is a "liquid cancer" that affects the plasma cells. 

I saw him last year at a mutual friends funeral.  I am impressed with his drive to win, to fight thru it.  

Sorry not much more I can offer but prayers.  Stay strong. 

 
First off sorry Yak, cancer is the worst. MM has a range of outcomes for sure, and its aggressiveness varies a ton. Up until a month ago I was at the company who makes Revlimid, and I got to meet a lot of our patients and hear the survival stories. There are a lot more treatments either recently approved or in clinical trials. I spent several years on the first CAR T to be approved for MM. It was just approved a couple of months ago. It is 4th line plus so hopefully she never needs it, but it does work if her tumors are BCMA+. There are also bispecifics, t-cell engagers, and many other potential game changers in trials. No clinical experience here like pmedina but I can answer questions about treatments. Good luck. 

 

Users who are viewing this thread

Top