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Mother was diagnosed 2 weeks ago and Dr's are reluctant to give prognosis for Mother. I understand that several factors come into play with this type of cancer. She only has one kidney and Dr. said that will affect her body's ability to deal with the cancer, however no one is wanting to give us a prognosis. She has a DNR and does not want treatment - only comfort measures. They have staged it at "smoldering" at this point but have said it is definitely growing. Does anyone have any experience with this? Thank you!

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Debi1306, Did she have a bone marrow biopsy ? With MM there can be irregularities in the blood but without a biopsy you cannot know for sure. If it is a pre cancer called MGUS it can smolder for years.
Here is our story in a nut shell: hubby had blood irregularities, had bone marrow biopsy, told he needed chemo, would be dead in a year without it. He had chemo for 14 months which killed his only kidney and had to go on dialysis, diabetes could no longer be controlled with pills, began insulin injections. He was walking fine but by the end of 14 months was walking with wheeled walker. He had developed severe neuropathy in legs and feet. Had a second bone marrow biopsy, he was never told he was in remission, the doc was just giving him a break from chemo. three months later we found out the doc had been forced into retirement. the medical center was then without a hematology oncologist for a year and a half. When we met with the new doc the first thing he told us was that my husband never had cancer!!!!! He has MGUS which can smolder for 50 years!!!
He is permanently disabled due to the strong chemo drugs that he didn't need, and he requires assistance with all ADLs. Dialysis is going great and diabetes is under control with insulin.
We got copies of the biopsies which showed the criteria was not there for giving chemo. The two biopsies taken 14 months apart were almost identical. We had never thought to get a second opinion because we were in complete shock.
Please ask for a bone marrow biopsy if she hasn't had one and get a copy of the report.MM cannot be diagnosed just with blood tests. There has to be at least 10% plasma cells for chemo to be done. If you are not comfortable with this doc , get a second opinion. Do your own research on the Internet.
We are not sure why this doc did what she did. some have called it a misdiagnosis but my husband swears she was working with the drug companies and he was being experimented on , to see if the pre cancer would clear up. We have since gotten a second opinion with a third bone marrow biopsy,plus he has had numerous bone scans, bone surveys, and a PET scan that show no MM anywhere. The chemo didn't cure anything because there was nothing to cure !!
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Countrymouse - thank you. The Dr's were doing blood test for kidney function and UTI and discovered the cancer protiens in her blood and found she did not have any "infections" at all. Upon further investigation they discovered the cancer. Thank you for your insight! It is greatly appreciated.
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I had a look at the Macmillan website which is usually very useful for this sort of thing, but although they have a 'staging' diagram they don't put any figures on it. Doctors hate being too prescriptive about prognoses for fear we relatives might try to hold them to it - even getting a range of possibilities out of them can be like pulling teeth. It's very frustrating when, Brownie's honour, all you'd like is some approximate idea of what to expect.

What led to your mother's being investigated and then diagnosed? I ask because I wonder if you might get a clearer picture depending on what her symptoms and other conditions are like.

I'm sorry that you've had this depressing news. If it's any consolation - though please note I am NOT suggesting the time frame need be the same - my aunt lived with a similar disease for at least eighteen months and managed to conceal it from her entire family until she entered the very last, acute stage. She passed away peacefully and her son had time to be with her.
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