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Please introduce yourself to other readers. We would like to hear your story.

New Member

by mommy1979 on Fri Apr 26, 2013 6:44 am

Hi Everyone

My mother was diagnosed with Multiple Myeloma in February this year. She has stage 2 Myeloma and Amyliodosis. She has been going for Chemo once a month for 3 consecutive days in a row. I'm not sure of the type of chemo she is receiving. On Monday while having chemo and her routing blood tests, it came back that her kidneys have little function so today they put a catheter in and are starting dialysis. I'm so petrified and am struggling to digest all this information!! I feel everything is happening so fast :( And even worse is that I don't live nearby to her - a 2 hour flight away :(

Just wanted to introduce myself and get any feedback.

Thanks
Lucille

mommy1979

Re: New Member

by Multibilly on Fri Apr 26, 2013 10:51 am

Hi There Lucille,

Sorry to hear about your Mom.

You may find these articles to be helpful in better understanding this combo of diseases. There are a few folks on this forum that also have both of these conditions and can likely comment on specific questions that you might have along the treatment journey. There is hope for your Mom and it is likely that the positive results of her treatment will soon start to kick in.

The search function on this forum leaves a lot to be desired (i.e. you can't just type in "amyloidosis" or "amyloidosis myeloma" and get anything back), but if you go to Google and search "Amyloidosis myeloma beacon", you can then easily find other threads in the Beacon.

https://myelomabeacon.org/news/2010/09/15/multiple-myeloma-associated-amyloidosis-what-every-patient-should-know/

https://myelomabeacon.org/news/2010/09/17/personal-perspective-survivor-overcomes-multiple-myeloma-and-amyloidosis/

Best of luck to you and our Mom.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: New Member

by Ulrika on Sun May 05, 2013 4:32 am

Hi Lucille,

Sorry to hear about your mother... I am new to this forum as well - both my mother in law and husband were diagnosed with Myeloma March this year. My mother in law is about a 6 hour flight away from us so I understand your frustration of not being closer! She is also stage 2 and has had 2 kidney failures - she has responded well to her initial round of treatment but has diabetes as well so she was really tired so they are holding off treating her further at the moment so she can regain some strength. I hope that you find some support and answers here, I have found really good information I have been able to discuss with our specialist or nurses when we are at the hospital for my husbands treatment. I also joined a FB closed group recently which seems really good Multiple Myeloma Support Group (non-profit).

:)

Ulrika
Name: Ulrika
Who do you know with myeloma?: Husband
When were you/they diagnosed?: 3/2012
Age at diagnosis: 45

Re: New Member

by georgia on Mon May 06, 2013 12:02 am

Hi Lucille,

I, too, am a new member. I just read your post and will pray for you and your mother! It can feel overwhelming, but the more you read and educate yourself, the better you will feel - knowledge is power. I see that Multibilly has provided some good links for you to read. This disease is complicated. Just know that you are not alone!

georgia
Name: georgia
Who do you know with myeloma?: My dad :(
When were you/they diagnosed?: 2002-MGUS-64yrs; 2013-Plasmacytoma-75yrs
Age at diagnosis: 64


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