Want to talk about Multiple Myeloma: Anyone else?

I'm 21 years out now and still in remission. I've outlasted most of my doctors who have actually retired by now! I'm glad you are going to counseling. I need it even more now than I did before for some weird reason. I'm 68 now, and very very very tired. I'm grateful, but I think I forgot that while I was counting the years in remission, I wasn't counting the aging years. Shock! I hope you have many happy years of making memories with your family. Keep a journal....I've found that my own family got bored with my disease and all the hospital visits. The drama was over, but they didn't stop to consider that every day is still a struggle and I need help a lot.
Yes, I know Phoenix in the summer is like being in hell.
I've burned my butt on the hot seat of my car more than once when I was in Arizona for graduate school!
Thank you so much for responding. Hugs and lots of positive energy from me!
Karen

What’s your classification IgA, IgG or I’m Kappa light chain IgM MGUS. My older brother James died from MM because he was exposed to Agent Orange in Vietnam. At first my Oncologist thought my bloodwork was showing I was headed to MM but my MGUS was caused by me having Precancerous Cells that are slowly progressing to either Non Hodgkin’s Lymphoma or possibly Waldenstrom Macroglobulemia. My last blood test shows it’s progressing fairly quickly. I’m testing every 3 months and from September to December 2021 the bad guys jumped 25%. Between December to May 2022, they jumped 100%, not good news. But the mutated B cells are still getting worse, not good.

How’s your MGUS classified and is it progressing any? Good luck, Becky1024.

I am helping my sister who is getting her 3rd treatment today for multiple myeloma. The pain is unbearable. Right now doctors don’t seem to be taking her pain seriously. She can’t do anything because of the pain. Making a trip to the bathroom is daunting. Has anyone had extreme pain gotten it under control? This is just the start of treatment and she doesn’t think she can continue on if this pain level doesn’t change.

You may want to check with city of hope in CA as well, rated very highly.

@frazer1 Thanks so much to those who the time to appreciate these contributions. I and so many others add our voices whenever we can. That includes Colleen and many others. But now is the hard part. I have written up my lifetime of experiences fighting this stuff. The book is in PDF and is yours free for the asking at https://bit.ly/2JTYPP9. I make no money from this, and I prefer to keep any communication within this channel. "Yachats Syndrome" or "Gelsolin..." will usually be found in the title. oldkarl

@frazer1 One thing to remember about myeloma is that it attacks every bit of the body. There are so many forms of it that no one seems to be sure they have located all of them. It attacks the cell itself, literally ripping it apart and making it open to invasion by abnormal protein forms and other stuff. For instance, I just learned in the last few days that I have a thing called Muir-Torres in my mouth. NIH seems to include it in myeloma, which is cancer, but my local dentist says to relax because it is not cancer. Honestly, I trust the NIH more than the local dentist. Myeloma will grow fast or slow. On its own. Anyway, the point is this: Whatever comes may surprise you, or it may not. Just put your energy into fighting this crap, and every day celebrate something. Roses, or kittens, or NASA, or something. If you don't, it is easy to go bonkers fighting death. That will come soon enough. oldkarl

@searcher2022, Mayo Clinic experts often work with local physicians and oncologists for continued cancer care. This may require an initial visit to Mayo Clinic, followed by treatment administered locally. Virtual visits may also be an option.

Here is more information about multiple myeloma care at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/outcomes/gnc-20514923

To inquire about options available to you, insurance questions and more, I suggest you start by contacting Mayo Clinic appointments for a phone interview with a scheduler. Here's more information on how to get started: http://mayocl.in/1mtmR63

Dr. google doesn’t have a very good bedside manner!

Just saying.

😉

@pmm Gotta love Dr. Google - not! My hematologist-oncologist was very firm in saying, "Do not do a Dr. Google!!" What a rabbit hole we can get led down into, definitely!

Asking questions, writing them down as they come to you, then organizing them to present at your appointment, helped lessen my fears. Seeing things down on paper, numbering them. My team actually will look at me and ask what is on my list, did they miss anything I had a question about, etc.

@searcher2022 I hope the comments from @pmm will help alay your stress. Remember, we are just a keyboard away, okay?
Ginger

It does make one so anxious to be in diagnostic Limbo. When I first heard Multiple Myeloma mentioned as a possibility I consulted with Dr Google while I was waiting to get a hemotology/oncology appointment. Dr Google is big on worst case scenarios, it seems. That increased my anxiety a lot and I felt so lousy. I had trouble sleeping and lost 10 pounds before my first appointment.
I have, thankfully, an excellent HEM/Onc doc who spent lots of time explaining my bloodwork, what was good and what they would watch. I asked lots of questions and he was quite patient with me.
Once I had more balanced information I calmed down and immediately felt better.
Try to relax and do the things you love. I am wishing you the best possible outcome from your diagnostic workup.