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Want to talk about Multiple Myeloma: Anyone else?
Blood Cancers & Disorders | Last Active: Jul 1, 2023 | Replies (401)Comment receiving replies
Hi! Diagnosed in April 2021 but probably had since February 2020. Had very little bone damage and was told in remission after Darzalex, Velcade and Dexamethasone. Put on Darzalex maintenance after RMD bone marrow biopsy. Had lung issue in October. Had an X-ray, said no pneumonia but a bit of something in right lung. Tried to get lung doctor appointment but no call back. Called oncologist who ended up scheduling another X-ray, then a CT scan, then PET, then lung biopsy. Told 12/27 it was back plus ended up with spine and rib damage. Very depressed and going to Mayo in 2 weeks but probably too late.
Replies to "Hi! Diagnosed in April 2021 but probably had since February 2020. Had very little bone damage..."
Never too late!
I remember feeling that exactly when my husband was diagnosed and they were talking about how advanced his disease was. By the time it was diagnosed it had eaten holes in every bone in his body, and a couple of vertebrae were broken and collapsing. He was extremely anemic, had the worst mastoid infection the doctor had ever seen and was very tired and depressed.
This was almost 12 years ago and treatments were limited to velcade injections, revlomid, dexamethasone, and transplants.
First thing I did was start getting informed, the International myeloma foundation online was a great source of information.
Then after biopsy, we went to Mayo. Who instead of telling us there was no hope said they would expect him to do well. Deep breaths finally came.
He is in the bird room partying with the parrots as we speak. He has a decent quality of life and we make our own fun.
He has had a few bumps in the road but all in all we look at each other and laugh and say “gee, you know, life is good”.
The moral of my story is, “Never Too Late”. It can be heartbreaking to find out a cancer has come back, but our great doctor always reminds us that this is a marathon, not a sprint. It will come back and when it does we will send it packing again. There are a dozen or more tools in the box now to treat it when it starts growing.
Mayo is exactly where you need to be. They are amazing and just being there might bring a sense of hope, but please tell your doctor you are having some situational depression with this. Honestly it is really common with any cancer to need some better living with chemistry for a while.
Did you go to Mayo before? Which Mayo location? Do you have to plan travel?
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Hi @tml, I’d like to add my welcome to Jim’s. I’d also like to bring @gingerw @wyom1998 @ancopau1998 @auntieoakley into this discussion.
I’m sorry to hear that you’re dealing with depression as well as myeloma. When you are a Mayo Clinic for your upcoming appointment you could ask about a consult with an oncology social worker. Do you know about their role on the cancer team?