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Working not Wishing for the Cure
LMSarcoma Direct Research Foundation
               LMSeAlerts - February 2014 

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Nurses Working Not Wishing 


Over 40 nurses recently raised over $10,000 for LMS research in Fairfield County, Connecticut.


This past November and January, they ran in the New York City Marathon, hosted a party and held a silent auction. They named themselves, “Nurses Working Not Wishing” or "NWW" for short.

 

They were inspired by an esteemed nurse in their community who is an LMS survivor, as well as several other nurses who either knew someone or had a family member battling or succumbing to LMS.

 

Because of their clinical knowledge of cancer, they understood that supporting research was essential in finding the cure. They chose to donate the money to LMSarcoma Direct Research Foundation (LMSdr) with the intent they funded LMS research instead of administrative costs. LMSdr raises money for only worthy LMS specific projects. For a list of LMSdr's past projects go to: http://www.lmsdr.org/grantsawarded.php  

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SAVE THE DATE!
October 30th - November 1st
LIVE IT UP!  LMS Retreat 2014
San Francisco



Aldoxorubicin, first drug to surpass doxorubicin for soft tissue sarcomas

Phase 2 trial results confirm that aldoxorubicin showed 80-100% superiority in progression free survival (PFS) and showed no significant cardiotoxicity, compared to doxorubicin.  

CytRx President and CEO Steven A. Kriegsman reported in December 2013, "Aldoxorubicin is a major advance for treating soft tissue sarcomas."   

They anticipate a phase 3 trial to start the first quarter of 2014.

According to OncLive.com "Aldoxorubicin is a combination of doxorubicin and a novel single-molecule linker that binds directly to circulating albumin. Protein-hungry tumors concentrate albumin, which increases the delivery of the linker molecule (with attached doxorubicin) to tumor sites. Doxorubicin is then released in the acidic environment of the tumor, leaving the neutral environment of healthy tissues unaffected. This proposed mechanism of action allows for 3.5-4 times greater doses of doxorubicin to be administered in a greater number of drug cycles while reducing toxic side effects."  
Read more 


Space Still Available!

epic

Feb. 16 - 22 (Survivors)


Feb. 23 - March 1 (Caregivers)

A free week-long fun outdoor adventure camp for individuals who have been diagnosed with cancer or for those who care for them. Experiences may include snowshoeing, skiing, building snow caves, and much more! Throughout the week participants are encouraged to recognize that cancer is a part of your story, but it no longer defines you. Limited space still available due to cancellations. Apply now at http://www.epicexperience.org/. All expenses paid, including airfare. Held in Colorado. 


A Family Love Story - Amy Reed

reedDr. Amy Reed is a mother of six and wife to Dr. Hoonan Norchashm in Boston. Watch video of how Amy's family and friends express their love and support. 

For more information on their campaign to end the practice of uterine morcellation for fibroids,
go here and sign petition.


ULMS and Morcellation

If you had a morcellation hysterectomy laparoscopically or by robot, you might be eligible to join a class action lawsuit. Contact Sarah Robinson: sarahssr@gmail.com.  Read more in ESUN Newsletter Jan. 2014 and Lancet Oncology Editiorial Feb. 2014.


New Trial News - MORAb-004

In this phase 2 study, half the participants will get Gem/Tax and placebo; the other half will get Gem/Tax plus the MORab-004 antibody. Expected enrollment is 200 patients from 30 locations in the US and abroad. According to the trial protocol, MORAb-004 sticks to the surface of some cancer cells.  MORAb-004 also binds cells supporting tumors called “stroma” as well as cells called pericytes that support blood vessels around the cancer cells. MORAb-004 has received the FDA's orphan drug designation for sarcoma. 

See trial protocol.


Osphena (ospemifene) Approved for Dyspareunia

In Feb. 2013, the FDA approved the oral tablet Osphena as a short term treatment for dyspareunia.  Dyspareunia is the medical term for pain during sex cause by vaginal atrophy, a chronic condition that affects up to 60% of postmenopausal women.  Unlike the estrogen based creams and rings, Osphena is a selective estrogen receptor modulator (SERM) like Tamoxifen and Evista, which binds to estrogen receptors.  Osphena is the first and only nonestrogen compound approved for this indication.  It also has potentially greater efficacy and potency than previous SERMs, is being investigated for use in the treatment and prevention of osteoporosis.  Always discuss possible side effects with your doctor.


Free YMCA Program for Cancer Patients

The LiveStrong Foundation has joined the YMCA in providing  a free 12-week, small group exercise program for cancer patients.  Inquire with your local Y to see if they participate or
look one up.


San Francisco Bay Area Get-Together

Northern California LMS meeting in Martinez, California.  
Sunday, February 23, 2014
 RSVP Christi:  cgcal78@gmail.com 



22 Year Thriver, Marge Rudloff

Marge

Wise Advise for the Newly Diagnosed

In 1992, Marge Rudloff was diagnosed with uterine LMS after a hysterectomy.  Despite pelvic radiation, it recurred on her bladder within a few years. Since her bladder surgery, she has not had another tumor. It’s been 22 years since she first heard the word, leiomyosarcoma.


There was no internet and online resources when Marge was diagnosed in 1992. All she had was a one page print out about LMS. In 1998, six years later, she found (on her work computer) the ACOR online discussion group and “talked” with other survivors.  In 2003, she actually met them in person at the first LMS Hugfest gathering in Lancaster, Pennsylvania. 


While Marge has not had a recurrence of LMS in the past 17 years, she has suffered from the long terms side effects of her treatments. Radiation damaged a large section of her bowel which had to be removed, resulting in on-going diarrhea. Surgery had its side effects too. After her bladder was removed, she suffered from kidney infections which developed into chronic kidney disease.  That led to a nephrectomy (kidney removed) eight years later.


After 22 years, Marge continues to get annual CT scans of the chest, pelvic and abdomen.


Marge thinks about LMS often, but doesn't worry about it.  If something different or unusual happens in her body, LMS is her first thought.  Marge states, “I feel good but I don’t have my head in the sand.  I volunteer for a Cancer Hotline so I try to keep up with things somewhat.”


An unexpected good side effect has been the enhancement of love and respect she has received. She was surprised at how many people cared and wanted to help. 


Marge shared, “I’m still always amazed at how far my husband will go to care for me, encourage me, and just be there for me. We will be married 50 years in February, there definitely was a time I didn't think I would see that.  Love that guy!”


From her LMS journey, Marge has learned to be her own advocate and research things for herself. She doesn't take everything a doctor says as gospel.


What’s her advice for newbies?

“When a doctor tells you to get your affairs in order, it often means you have reached the limit of HIS abilities. Don't be afraid to get a second opinion.  I've heard too often that someone will stay with a doc because they like him.  Don't rush to making a decision on treatment, research your choices.  You are blessed to have so many people who can share their knowledge and experiences on the ACOR online list.”


If you'd like to share your long term thriver story, contact Sharon:  2SharonAnderson@gmail.com .


Join SFA's Sarcoma Patient Registry

Sarcoma Foundation of America (SFA) sponsors a professional patient registry to collect anonymous data for sarcoma researchers.  Join here


 LMSeAlerts is an eNews service for families and professionals


History of LMS Paraffin Block Drive            Video

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Participate in the Paraffin Block Drive for LMS Research

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313 LMS patients have donated a primary paraffin tissue block for research  - please join us and build our tissue bank.


Donate Here

     
Shop & Donate!

Shop at
and donate to 
LMSdr



Buy DVDs of the 2013 LMS Retreat Presentations

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LMSdr T-shirts and water bottles available 

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Water bottles are BPA free, dishwasher safe, 30 oz. clear purple with gripper sides, easy to clean flip top cap.

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T-shirts are unisex, preshrunk 50/50 cotton and polyester, color is blackberry.  M, L, XL, XXL.



Read past issues of LMSeAlerts



LMSdr advocates for and funds LMS specific research.  We've been a  nonprofit 501 (c) (3) since 2006.  For details of our past grants go to  LMSdr.org



LMSarcoma Direct Research Foundation
Post Office Box 52697
Tulsa, Oklahoma 74152
tel.  1-866-912-2730
fax:  1-413-502-2241
         Email:  Contact@LMSdr.org




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