Life With Multiple Myeloma

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May 2012 LifewithMultipleMyeloma Community Newsletter

Posted by Ben Munoz on May 26, 2012 at 7:06am 0 Comments

Dear Friends and Family of LifewithMultipleMyeloma,

We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient…

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OUR ONLINE PRESENCE IS GROWING!!!

Posted by Armando Abrero on May 22, 2012 at 7:05am 0 Comments

OUR ONLINE PRESENCE IS GROWING!!!

Check out this link to view Ben's Friends FB-Twitter Milestone.…

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When Sickness Strikes the Family – Caring for the Children

Posted by Armando Abrero on May 6, 2012 at 8:33am 0 Comments

When Sickness Strikes the Family–…

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Share Your NCredible Health Hustle with Nick Cannon

Posted by Armando Abrero on May 4, 2012 at 10:36am 0 Comments

Would you like to share the challenges you face while dealing with a rare disease? Artist and TV personality Nick Cannon would like to hear about it.

Sign up on the link below and share your story. …

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4. No Profanity, sexual references and illegal activity subject matter are not allowed in the Chat Room.   
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.
6. Please take all political opinions to the appropriate place on the internet.   

Specific doctor or hospital names in a positive context are welcome.
Thanks for your cooperation.
 

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Discussions from Synovial Sarcoma

Any of you from or around philadelphia?

I just joined this site.  I'm interested in meeting people who I can talk to and maybe hang out with around Philadelphia.  I'm being treated in Philadelphia but living in bucks county now.  

Are there any other young children out there?

Hi, there.  I'm new to the group.  Our son was diagnosed with SS in 2011 when he was 7.  Docs thought it was a benign but painful lump (can't remember if it was 10 or 15 mm long and not very thick) in his upper left back of his arm, above his elbow.  We asked them to remove it.  It took a total of 3 surgeries to have clear margins.  During scans they also spotted a tiny nodule in his lung, so the third arm surgery was combined with lung to remove that.  That nodule was totally different, and…

What would you do to comfort a sick friend?

"What would you do to comfort a sick friend?"

Aside from the usual bouquet of flowers and basket of fruits, I'd like to hear your suggestions, especially from patients, as you would know from your end what cheers up a sick person.

I will be compiling the answers on a future write-up.

A sort of what would "do unto others as you…

Yondelis

Is anyone on long term use of Yondelis? I am currently on my 14th Yondelis treatment to treat synovial sarcoma in the pelvis? I am being treated at Dr. Chawla's. Treatment is usually every 3 or 4 weeks. Is anyone in the similar situation?

Thanks,

Gavin

AFINITOR (everolimus)

Hi everyone!  James' nodules have remained stable for 3 months.  However, he has surpassed his lifetime dose of Doxy and Ifos.  In order to avoid the November 2011 disaster when his lungs were invaded with metastasis (4 weeks after being taken off on Votrient after it had stopped working), he has been started on AFINITOR (everolimus).  Anyone out there with experience using this drug?

 

Please click on FIRST TIME USERS and WELCOME! tabs for helpful info, also the Help tab for Links . THANKS!

Forum

What would you do to comfort a sick friend?

Started by Armando Abrero in General. Last reply by rodney May 19. 1 Reply

"What would you do to comfort a sick friend?"Aside from the usual bouquet of flowers and basket of fruits, I'd like to hear your suggestions, especially from patients, as you would know from your end what cheers up a sick person.I will be compiling…Continue

Twitter Chat

Started by John "JC" Colyer in General. Last reply by John "JC" Colyer May 18. 2 Replies

Hope everybody is well.Would any of you be interesting in being a part of a twitter chat? It could be a fun way to learn about other communities on BF, share your experiences with a rare disease, tell your story and gain exposure for BF and all of…Continue

Tags: Chat, Twitter

PCI 32765 Treatment ??

Started by Silver Dollar in General. Last reply by Silver Dollar Mar 20. 2 Replies

I have just learned of this inhibitor.From the little I have read on this it sounds very promising. Can anyone comment on this? The link is from the Myelona News:…Continue

Multiple Myeloma Awareness Month

Started by Danielle Walsh in General. Last reply by Scott orn Mar 23. 4 Replies

Not sure if everyone is aware or not but March is considered Multiple Myeloma Awareness Month.  Is anyone doing anything or participating in any events to spread the word about MM?Anyone do public speaking? Or want post a video about MM?  Just…Continue

Tags: awareness

Multivitamins & Chemo

Started by Christina in General Mar 4. 0 Replies

When I was receiving my injection of Velcade last week, my nurse said multivitamins should not be taken while on chemo. I'm going to talk to my Dr about this. Has anyone heard anything about this?Continue

Latest Activity


Moderator
John "JC" Colyer left a comment for Charty
""Welcome Charty , I know you will connect with good people here that will offer you…"
5 hours ago
Charty is now a member of Life With Multiple Myeloma
5 hours ago

Moderator
Ben Munoz's blog post was featured

May 2012 LifewithMultipleMyeloma Community Newsletter

Dear Friends and Family of LifewithMultipleMyeloma,We are so excited we cannot wait to tell you…See More
8 hours ago

Moderator
Ben Munoz posted a blog post

May 2012 LifewithMultipleMyeloma Community Newsletter

Dear Friends and Family of LifewithMultipleMyeloma,We are so excited we cannot wait to tell you…See More
yesterday

Moderator
John "JC" Colyer commented on Ben's Friends Group's group POSITIVE AFFIRMATIONS AND QUOTES
"Don’t base your relationship decisions off of the advice of people who don’t have to…"
Friday

Moderator
John "JC" Colyer gave a gift to bruce
Friday
Scott orn left a comment for brace yourself
"Huge welcome Brace Yourself! this is a great group. I'm so glad your treatments are going well!"
Tuesday
Eric D Kroll left a comment for brace yourself
"So glad you found us.  Great to see you so positive.  You're an inspiration to our…"
Tuesday

Blog.Bensfriends.org

Life With Multiple Myeloma - Inspirational Sunday

Life With Multiple Myeloma - Inspirational Sunday:

Myeloma Support Group moderator JC shares with us a list of myeloma survival stories. An inspirational Sunday, indeed! :)

"Thanks! Looking forward to getting to know everyone here!"

“Thanks! Looking forward to getting to know everyone here!”

- Member of Multiple Myeloma Support Group

Best of Ben's Friends

Zack and the Dragon

12 Jan 2012—ALDSupport—Zack and the Dragon

How I Live With Ataxia

23 Dec 2011—LivingWithAtaxia—How I Live With Ataxia

What is Best of Ben's Friends?

Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.

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