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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What Were Your Symptoms Leading Up To Multiple Myeloma?

A MyMyelomaTeam Member asked a question 💭
Moorestown, NJ

For me it was subtle and many signs were chalked up to old age and COVID lockdowns. In December 2021 I took a full time job with LOWES in the electrical and plumbing departments. Almost immediately I felt terrible burning in my thighs and sides of the thighs while standing with customers. I consulted with Dr. Google and it said could be the result of sciatica. Then I felt fatigued and told my boss I could only work part time. 4 hours was rough. 5 was a killer. While standing in meetings I was… read more

August 19, 2023
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A MyMyelomaTeam Member

I’m following you Tom. I’m also 72. That new drug Tecvayli is supposedly awesome so good luck with it. We are all in various stages of time and treatments and I have total trust in my team to guide me through this navigational maze. Per ardua, et alta! said the Wizard of Oz.

We are all embarking on a highly dangerous and technically unexplainable journey into the outer stratosphere; to confer, converse and otherwise hobnob with our brothers (and sisters) in this battle of survival and we look forward to one day being totally cured from this malady.

I am sensing that a cure is just around the proverbial corner and that we can all partake in this major breakthrough. Then, of course, there will be a new obstacle to overcome as this battle to stay alive is a never ending challenge. With that said I feel I am the luckiest man to walk the face of the earth and I make that statement unequivocally, unreservedly and without fear of contradiction so help me God! (tears are welling up in his eyes; not of sadness but of joy, supreme joy that we are all here, that we are communicating and that we are supporting each other and that is what life is all about)

Thank you for reading this off the cuff and unscripted diatribe today. A beautiful day. A glorious day.

You can all go home now; everything is going to be all right, I hope……

August 19, 2023
A MyMyelomaTeam Member

Yes, its very strange how we end up getting diagnosed with cancer. I have heard so many weird stories and mine was as well. There really is no "test" for cancer. We get strange unexplained symptoms and go to the doctor. And many times we are misdiagnosed, gas lighted, or treated for our symptoms and the cancer goes untreated. I am grateful that science has create so many wonderful treatments for cancer. But it still lags behind in the diagnostic area.
Good luck Mark. Hope your feeling better.

August 19, 2023
A MyMyelomaTeam Member

I didn't really have any symptoms. 2 years prior to my MM diagnosis my doctor mentioned protein in my blood or urine. When I urinated some small unknown solids could be seen in the toilet or urinal. Didn't think much of it, thought maybe kidney stones. The doctor didn't make a big deal of the protein levels. Think I was supposed to go back to him but I never did. In 2019 my knee was hurting me and a doctor said I had a meniscus tear and recommended surgery. A short time later I was in so much pain that I was calling him at midnite to see if he could do the surgery. Eventually I was crying from the pain and couldn't walk. I had to be lifted in a chair and into an ambulance which took me to the emergency room. The doctor came in and performed the meniscus surgery and found crystalized liquid behind the knee. Tests determined I had gout and Multiple Myeloma. Treated with Velcade and Dex until I had my Stem Cell Transplant in July of 2020. Been on Revlimid and Eliquis since them. Was on Acyclovir for about 1 year then taken off. Recent Elevated IgG and bone pain makes me believe I'm coming out of remission. Wasn't able to find a trusted lab to do the kappa/lambda light chain test. Hopefully I'll return to the US in January and confirm one way or the other with tests and PET SCAN.

December 9, 2023
A MyMyelomaTeam Member

I get the Charley horses too. Occasionally I get cramps in my feet and boy do they hurt. Are these signs of progression to MM?

August 26, 2023
A MyMyelomaTeam Member

I forgot 2 other symptoms of onset MM. Back pain and wicked Charley Horses in my leg. The leg spasms occurred simultaneously with the night sweats and they would wake me up. The back pain was actually over a year before diagnosis and I just chalked that up to bad posture caused by watching TV during COVID lockdowns. That was in the middle of the spine and that is where the cancer was and unfortunately still is.

August 20, 2023

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