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If your family has been affected by Multiple Myeloma, consider Life With Multiple Myeloma your second home.

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Blog Posts

i do have a couple of questions. did anyone elser have quick muscle lost with this disease I was in the smothering stage this summer I doin ok and now my muscle like are gone legs and arms went sofas…

Posted by hipee on January 1, 2015 at 1:52pm 4 Comments

i do have a couple of questions. did anyone elser have quick muscle lost with this disease I was in the smothering stage this summer I doin ok and now my muscle like are gone legs and arms went sofast didn't even see it im only 56 old trying to…

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Ben's Friends Fundraiser

Hi Past & Present Ben's Friends Supporters! 
We really need your help. Our annual Ben's Friends fundraiser is way below goal. So far we are at $14k with many generous donations. But at the very least we need to be at $25k, and ideally at $35k or above. 
We're probably the most efficient non profit in the world, helping 125,000 patients per month with a budget of $3k per month. But even we can't survive on $14k. 

Please donate at our super easy Donation Page at Ben's Friends . A $5 donation will make a big donation. Everything is tax deductible!

We realize most members aren't in a position to donate. Those members can help by spreading the word about the fundraiser on the communities and on Facebook. 

We need your help to keep Ben's Friends alive and going strong!
We really need your help! Please donate, even if it's $5, that will really help.

Thanks!
Scott
(Co-Founder of Ben's Friend)

What is Multiple Myeloma?

Myeloma or Multiple Myeloma is a cancer of the plasma cells which are responsible for producing antibodies. Abnormal cells accumulate in the bone marrow, which then results to the interference of the production of normal blood cells.

In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. Most cases of myeloma also feature the production of a paraprotein—an abnormal antibody which can cause kidney problems. Bone lesions and hypercalcemia (high calcium levels) are also often encountered.

Forum

Arnie's last goodbye

Started by rodney in General on Wednesday. 0 Replies

I had second thought's about posting this, but after following his articles for three years, I had to post it if for nothing more than a tribute to him. We all live for something, we  contribute and our lives DO MATTER, we do affect those around us.…Continue

Not "fully" diagnosed, but seeking support.

Started by diamondinthesky in General. Last reply by loving parent Jan 19. 3 Replies

Hello All,I am a 43 year old female from SLC, Utah. I was diagnosed with an M-Spike in the Gamma Region (IgA) on the 18th of December, 2014. The blood test was run because I have been experiencing symptoms of a mast cell disorder for the last 2.5…Continue

new

Started by loving parent in General. Last reply by JerseyGyrl Jan 19. 3 Replies

 I am new to this group would like to know what to execpt during stem cell transplant for my daughter and what I can do to help her go thru thisContinue

exercising and playing golf

Started by robo in General. Last reply by robo Jan 15. 2 Replies

Can anyone tell me if they felt like exercisng and or playing golf when taking remlivid the first month.RoboContinue

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Latest Activity


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JerseyGyrl left a comment for momof5
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janet kerrigan left a comment for hipee
"Hi, Taking Vitamin B complex also might help with the neuropathy. Make sure you tell your…"
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"Hey dear Leslie. It is so good to see your email. I just found it today and it is January 24th.…"
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Niel Gnesin posted a status
"You can listen to today's broadcast at http://www.spreaker.com/statistics/episode/5532966"
Wednesday
Niel Gnesin posted a status
"Hi boys & girls, I have posted a ton of resources from the MMRF at http://project611.wordpress.com"
Wednesday
 
 
 

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Discussions from Synovial Sarcoma

Clinical Trails

My run with Votrient has ended after 8 months. My tumors have progressed in my lungs. Visiting Sloan for trials and wonder if anyone is aware of any trails (other than the NYESO trail)? I don't qualify for that trail. Kinda scary when your doc says he's out of options for you. Thanks!

Yondelis

Is there anyone doing the Yondelis trial? If so how is it going for you/results?

Also my husband just finished up with 18 rounds of radiation on his bones in the pelvic region. I understand that the radiation therapy has lowered his white count but now we can't get it up so no chemo. Does anyone have any suggestions for us to try at home to help us get the white count

Thanks!

Irinotecan and Temozolomide combo

My sons synovial sarcoma came back in his other lung and is now recovering from surgery. The suggestions (after tumor testing) is to start him on a combination of oral Irinotecan and Temozolomide. Anyone any experience with this? 

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