Want to talk about Multiple Myeloma: Anyone else?

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

Just saying.

😉

@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

@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

@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

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

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.

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'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

Your information is waaayyyy over my head. I was dx in 2000 and so much has changed. I remember they said something about light chains and that's about it. I have had thyroid cancer since then but I was warned that the total body irradation I received as part of the experimental protocol would increase my risk of seconday cancers (also have skin cancer, but doesn't everyone from my 50s generation?)
I hate to hear that your number are increasing. It must be terrifying for you. If you need a friend to vent to, I'm both a survivor and a therapist. Reply to me and we'll switch contact information. It was essential and soooo helpful for me to have someone who truly understood when I was going through this. Not just the cancer part, but the family/friends part, the job, the finances, etc. Sending you love and positive energy,
Karen

What is the exact cause of her pain? Fractures are the most likely reason. They do radiation treatments which will quickly relieve that pain. Also, Fentanyl patches (work for 3 days) are a god-send because the four hour times between meds is impossible. How do you wake up and go to the bathroom in the middle of the night if you can't get out of bed because of pain, right?
The stupid "opiod crisis" has caused doctors to become incredibly cruel, in my opinion. Have your sister make a journal of her pain....by the hour, describing it using the 1-10 scale or whatever describes her pain level best....and don't try to be a hero. Let those uncompassionate (bad words) SEE what she is going through! Go with her and talk to a pharmacist....and not the costco or walmart kind. It was my pharmacist who told me about Fentanyl, which saved my life (no exaggeration). Also, Fentanyl produces a "lollipop" that you can take a few sucks of for breakthrough pain. Tastes good, too! Might be hard to get, but you can help her FIGHT for her rights, since she is probably too overwhelmed to do so for herself. Pain clinics have not been helpful to me because of the opiod crisis mentality. I have 17 compression fractures and live with pain everyday. It is hard not to feel victimized by the callous treatment pain patients receive. I also use a heck of a lot of CBD. I grow it legally, then use the recipe from the Canadian government that they use to treat PTSD vets. It's online.
Thank heavens a decent doctor will support her use of that wonderful herb. Not only does it help take the edge off but it really helps with sleep, AND it is a great anti-inflammatory. When you do it yourself, it is CHEAP.
I have a great care-giver/friend who has kept me from giving up from pain and that horrible helpless feeling one gets from being treated callously for very, very, real pain. Also find a really good teacher of self-hypnosis. I didn't think it would help, but it really did, especially during treatments. Acupuncture as well. I even ended up taking dessicated worms in capsules (chinese medicine) I was so desperate. It didn't work, but then the practioner and I didn't know I was actively dying at the time. If you think I can offer her any support at all, please let me know by replying to this message. I can't stand thinking of what she is going through, because I've traveled a similar path and I know how scary and hard it is. Please tell her not to give up.. ... Did you know that patients who advocate for themselves have a much much higher rate of survival? Of ANY disease? FIGHT. Don't let those bastards get you down. They just fear losing their licenses when their overprescribing in the first place contributed to this problem.
Sending good universal energy to you and your sister and family. Hugs, Karen (now 68 and 21 years in total clinical remission with no cancer medications.)