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May 2012 LifewithMultipleMyeloma Community Newsletter
Posted by Ben Munoz on May 26, 2012 at 7:06am 0 Comments 0 Likes
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…
Continue
OUR ONLINE PRESENCE IS GROWING!!!
Posted by Armando Abrero on May 22, 2012 at 7:05am 0 Comments 0 Likes
OUR ONLINE PRESENCE IS GROWING!!!
Check out this link to view Ben's Friends FB-Twitter Milestone.…
When Sickness Strikes the Family – Caring for the Children
Posted by Armando Abrero on May 6, 2012 at 8:33am 0 Comments 0 Likes
When Sickness Strikes the Family–…
Continue Share Your NCredible Health Hustle with Nick Cannon
Posted by Armando Abrero on May 4, 2012 at 10:36am 0 Comments 0 Likes
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. …
ContinueClinicalTrials.gov Studies
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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 0 Likes
"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 0 Likes
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
Biking Across America to Raise Awareness
Started by Ben Munoz in General Apr 10. 0 Replies 0 Likes
I ran across this. It's quite amazing. https://online.myeloma.org/netcommunity/MemberFundraiserBicycleMojaveContinue
PCI 32765 Treatment ??
Started by Silver Dollar in General. Last reply by Silver Dollar Mar 20. 2 Replies 0 Likes
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 0 Likes
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 0 Likes
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
ModeratorBen 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
ModeratorBen 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
ModeratorJohn "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…"
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!"
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…"
Top Content
| 1 |
What would you do to comfort a sick friend?Posted by Armando Abrero on May 9, 2012 |
| 2 |
Velcade Side EffectsPosted by Christina on January 26, 2012 |
| 3 |
Share Your NCredible Health Hustle with Nick CannonAdded by Armando Abrero on May 4, 2012 |
| 4 |
May 2012 LifewithMultipleMyeloma Community NewsletterAdded by Ben Munoz on May 26, 2012 |
| 5 |
When Sickness Strikes the Family – Caring for the ChildrenAdded by Armando Abrero on May 6, 2012 |
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Wonderful of Dr. James Berenson (aka @myelomadoc) to talk about...
Wonderful of Dr. James Berenson (aka @myelomadoc) to talk about our Myeloma Support Group on Twitter
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 DragonHow I Live With Ataxia
23 Dec 2011—LivingWithAtaxia—How I Live With AtaxiaBeing a Part of the LifeWithLupus.org Family
01 Dec 2011—LifewithLupus—Being a Part of the LifeWithLupus.org FamilyWhat is Best of Ben's Friends?
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