Want to talk about Multiple Myeloma: Anyone else?

Good for you for doing your due diligence. I went to Seattle Cancer Care, Fred Hutchinson's Cancer Research Center. The "Hutch" as it is fondly known by, is the world's pioneer of bone marrow transplants and other cutting edge research. It was an amazing experience...like they wrap you in their arms and don't let go until you are well. I haven't checked out the Mayo Clinic's MM program, though. I just know that the success rate at the Hutch is really really good. My nurse case-manager, when told her husband only had a few months to live due to prostate cancer, remembered what I had told her about the Hutch. She immediately got an appointment there...no waiting around for weeks...and 9 years later they are still enjoying traveling together all over the world. Miracles do happen...but not everywhere. Keeping researching and asking questions. Combine your gut with your brain and you will know what to do. Love yourself well.
Karen

There are antibodies that the body makes to fight diseases. There are five kinds IgD & IgE are very rare. The other three in descending order of rarity is IgG, IgA & IgM. IgM is rare compared to G & A and sadly that’s the one I have. Another classification is Kappa or Lambda. The last classification is light chain or heavy, which part it was formed from. Think of it this way, see the letter “y” the two upper parts and the bottom part. The shorter ones would be light chain and bottom part would be heavy, if I remember correctly.

Now in the immune system, you have two cells that are the fighters of the body, they’re “B” cells, they’re the first line of defense. Then theirs “T” cells, these cells are killers cells. They were made from having other diseases and remember how to kill the invader’s. With me so far? Now my problem is I have Kappa light chain IgM MGUS. Google MGUS because I forget how to spell its meaning. My MGUS was most likely caused by a weed killer I used near my garden and ate the tainted vegetables for over 30 years. I also believe that’s why I have these precancerous cells roaming around my body. My brother got Multiple Myeloma from being exposed to Agent Orange and died from it in the 90’s.

Understand so far? My bloodwork shows my “B” cells are being reproduced mutated and crowding out healthy ones in my bone marrow. Which is also showing my lymphocytes are being produced below normal in numbers, (not good), while my neutrophils are being produced with above normal numbers (not good). What does this all mean, my immune system is compromised and is fighting a losing battle against a strong and dangerous opponent such as cancer. What type, the two I’ve already mentioned Non Hodgkin’s Lymphoma or Waldenstrom Macroglobulemia, NHL & WM for short.

Now, depending on how my MGUS progresses, which my last bloodwork in May, shows it’s going the wrong way, it could progress into a more dangerous form of NHL or WM. Right now, my blood is in the 1 in a million range that others have the same condition, meaning only roughly 335 other people in the entire country has it like mine. If my MGUS progresses yet a very rare, my statistics changes to 1 in 3.5 million or roughly just under 100 other poor souls in the United States will have it like me this year. Ya know what’s crazy, from all the new symptoms I’m presenting, it feels like it’s heading for the worst possible scenario. I even wrote on my medical calendar on June 4th, just 7 letters the makes 3 words “I GIVE UP!”

It’s a good thing you’re a therapist because I’m crying right now after writing all that because my heart is so fragile, its read to stop any second. Seriously, I was born with a 1 in a million heart birth defect known as WPW or Wolff, Parkinson, White Syndrome and my doctor warned me I could die between the first half and the second half of a heartbeat. Fantastic huh? I always tell a new doctor that I’m a “Freak of Nature” and to throw away your textbook knowledge because I’m not in it. Sorry for taking up so much of your time. I wrote a poem a few years ago that ends like this, “If this is how I have to live, I think I’d rather die!” Seems very appropriate because of the way my life has turned out, health wise.

Disclaimer: This is NOT a suicide admission.

First thank you for the universal energy. I believe we are all connected..
Finally it seems fractures are the source of her pain. Cancer doctors put her on morphine pump to measure how much she needs.
They are sending her home with morphine and oxycodone. No mention of Fentanyl patches. I will ask.. they are now admitting the pain is real multiple compression fractures and rib fractures.
You are giving me hope.

Sweet spirit,
First, thank you for the coherent explanation. You are a good teacher! Now I understand enough to learn more, if that makes sense. You must be terrified. It seems like so much is stacked against you....and it is. It is so important to acknowledge your fear and pain, while trying to ignore the ignorant but well-meaning folks who spout platitudes such as "It'll be OK. I have a feeling." or "Miracles happen." I just wanted someone to admit that things SUCK, that the diagnosis is terrifying and that they are scared along with me. Hey! I didn't want to be a cancer hero yet there seems to be some expectation for that? Have you noticed?
My newest caregiver recently lost her last client to Huntington's. It gave her a unique perspective of living with a terminal illness because there is no cure for Huntington's...at all. She not only supports me to live each day the way I want to. You'd think that, as a therapist (especially as a grief therapist) I'd know this stuff but woah....is it ever different when the therapist is also the patient! 1) Try to put your body and spirit FIRST on your To Do list and do what you want to do. (This one really relieved a lot of the "shoulds").
Eat ice-cream, stop somewhere you always wanted to but were always in too much of a hurry to, go fishing with little marshmallows instead of worms 'cause even worms should get to eat what they want to before they expire! and best of all, and only if you want to, yell the "F" word (actually research shows that yelling profanity actually reduces pain but substituting "shucks" for "shit" doesn't count. Do, be, think, what you want to do, be, or think. Don't waste your energy playing the polite A+ cancer patient game. Speak your truth...be real with yourself and others.
If you can, take some time to think about the world, the universe or whatever else seems like it might give your mind something interesting to chew on besides cancer.
As for me? I also am ready to go, and no....this is not a suicide note! It's a "I'm tired of fighting" note. I feel that I've allowed myself to do a whole lot of the things I wanted to, and now I'm learning to give myself a "give up/pity party" day.
Somehow I found some peace in that?
Now, what works for me doesn't work for everyone. I'm blessed in that I can't work (can hardly walk with all those damn fractures) so I have had a lot of time to contemplate the nature of the universe (and whether or not I can live 100 percent without plastic). And, today was a good day for a change although I know that most likely tomorrow will suck. So today I choose to live, tomorrow I'll probably allow myself to let go for the day. And that's OK. If you get down on yourself for thinking like that, I hereby give you permission to DO WHATEVER YOU NEED TO DO to feel better. And sometimes, taking a break from trying to be a cancer super-hero is actually a good thing.
I guarantee it is going to be a hard, bumpy ride, but it could end up being a series of great lessons between the sucky bits. I wouldn't wish this on anyone, and I hate that, after losing your brother already, you have to go through the complicated and difficult journey ahead of you. I so wish I could help you through the "been there done that" part, and I'd love to communicate with you by some method that protects our privacy. Cyber-geezer here, unfortunately. My awesome computer skills sort of disintegrated when I had a stroke a few years ago. Lost some skills, but gosh I'm a lot more relaxed now...weird, huh? LOL! So if you think I could add something positive to your life, I would be honored to be that support for you. No judgment, I'm not religious, and I truly care even though I've never met you. I am sending you a ton of the very powerful energy I seem to have earned somehow from living through painful and scary experiences. Now, here come the loving energy.........love, even more love, support, a good laugh, truly caring, a hug if you are in the mood, a cuddle from my wee dog, a warm beam of sunshine, sparkles on the water in the bay, a soft hand to hold yours while you go through a scary test, and hope...that whatever happens you will end up in a peaceful place even if it is in your living room and it is only for the afternoon.
I'll be thinking of you (as I have been since I first read your post replying to mine).
Karen

A little more hope? It takes around two months for a new fracture to settle down, and about the same for the ribs. I tried the vertebroplasty/kyphoplasty route but the risks involved versus waiting two months didn't seem worth it. No one told me that if you get one of those procedures, the risks of additional fractures above or below (or both) go way up and yes...it did actually happen. I'm glad she has a doctor who is actually giving her pain meds...lucky duck. The radiation tx (12 visits for me) helped the most overall but don't allow them to tattoo the measurement marks on her. And I'm so glad the information I shared was helpful to you.
Karen

How can we chat in private? I don’t know how much I’ve told you but I’ve been looking over my shoulder at the Grim Reaper my almost entire 79 years of this nightmare. I didn’t even get out of my mother’s body before I was thrown into the crisis that has haunted me ever since. Nothing like getting stuck in the birth canal, with only short moments to live before death takes over. I made it out, actually yanked out, while my brain and pituitary gland were damaged beyond repair back then.

Just 6 short months later, my mother rushes to me the local hospital in tears I’m in critical condition, unable to hold down my mother’s milk because of an unknown and untreated genetic bowel disorder. Two doctor’s there exam me and proclaim to my weeping mother, take your child home, they’re dying from a condition call “Waste of Life” and there’s nothing can be done. I still suffer from the condition and wanted to go see a geneticist to see what can be done to help me. I’make it thru that crisis with the help of a medicine man/shaman because my maternal grandfather is Native American.

Just 4 short months later, fate and my destiny has me crawling from a dining room into the kitchen. In between them is a archway and a door leading to our basement. Someone (my 2 1/2yo brother I believe) opened the door to block my way to the kitchen. Not realizing the danger, I proceed to fall down a complete flight of hard, bare wooden stairs and hit the concrete wall and floor. No sounds passes my lips, no tears exit my eyes, nothing but a limp baby being cuddled in their mother’s arms. Unknown to my mother, I have suffered a nasty concussion and more untreated brain damage. My daddy was a coal miner but wasn’t working at the time, so there is no money to take me to a doctor or the hospital. I’m not even 1 year old yet snd I’m living a nightmare I can’t wake up from, literally. My mother comforts me, writes in my baby book about the event as I sleep in her arms (not good). She tells how I tumbled down the entire basement steps till I hit the bottom wall. She makes this notation. Didn’t make a sound, only got a few scratches, gee mom, didn’t even cry!!! I wonder why. Could it be because I was knocked unconscious and sustained my 1st of 10 life long, knock out concussions.

I must stop but my nightmare continues for another 78 years, that’s 3 quarters of a century. So how do you chat privately on here, I have no idea? I know how much you’ve suffered yourself and would appreciate having you as a friend and comforter. Becky1024

Becky, click the @username of the member your wish to private chat with and then click Send a private message.

At this point i dont see anything good about this disease the morphine is cutting thru the pain. Making my sister very groggy but still has pain. She’s supposed to hit the button every time she wants a dose of pain medication but she cant focus on anything but her pain. Doctor wont give fentanyl patches unless she cant tolerate the morphine. Which I’d say by the time it touches the pain she’ll be comatose..she went into hospital alert but in extreme pain. Now she stares off into space. She can’t see so blind and still in level 9 pain..i will see what’s next..for pain relief. Thanks for listening..

My heart goes out to your sister. I had a period of time when morphine wasn’t keeping up with the pain and fentanyl patches made me horribly ill. I was put on a fentanyl pump which was a godsend. Maybe this might be an option for her.

Is she seeing any improvement with her chemo regimen? When there is strong bone pain associated with Multiple Myeloma, radiation therapy can sometimes be used in conjunction with chemo to help ease the pain.
https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/diagnosis-treatment/drc-20353383
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https://www.webmd.com/cancer/multiple-myeloma/multiple-myeloma-radiation#:~:text=Radiation%20can%20help%20when%20a%20tumor%20is%20pressing,55%20people%20got%20radiation%20for%20treatment%20of%20pain.
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Has this possible treatment been brought up by her doctors?

At nearly 80, it took me many tries to figure it out. So thank you Colleen, I just sent my first private message. I remember another first time that was just as hectic and painful in a bed. Get your mind out of the gutter Colleen, I’m talking about my first heart attack. I was in the cardiology department, in cardiac recovery, in bed, when the heart attack got many nurses running to help me. Btw, I’ve had 2 more nasty ones. SMILE, I brighten your day with a little humor. Becky1024