Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Thank you for the information . I remember not long ago no one knew what Fibromyalgia was. I used to wear a t-shirt that said "Ask me about Fibromyalgia" and many people did ask me. so I had the opportunity to explain it to them. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 4:41:54 P.M. Eastern Daylight Time, jsm2224@... writes: Home Patient Registries LMSdr Patient Location Sarcoma Registry The Foundation Mission Statement Board of Trustees Executive Director and Staff Scientific Advisory Committee Annual Budget Founder's Page eAlerts News and Advocacy News Newsletter Advocacy Media Coverage How to Help Ways to Help Pins & Bracelets Brochure Shop for the Cause Send an eCard Send an eCard Donate Now Memorials and Tribute Funds Thank You, Donors 2008 2007 2006 Fundraisers Patient Resources Treatment Possibilities Sarcoma Centers Patient to Patient Caregiver's Corner Our Stories LMS Info & Support What is LMS? Abbreviations Clinical Trials Patient Locations Adult Trials Child Trials Non-USA Trials ULMS Trial Update SUCCEED Trial Tissue Bank Research Grants Grant Application Grants Awarded Cure Leiomyosarcoma Excellence In Care Contact Us LEIOMYOSARCOMA DIRECT RESEARCH LMSarcoma Direct Research Foundation (LMSdr) was created to bridge the gap between Leiomyosarcoma researchers and Leiomyosarcoma patients. This Foundation will ... advocate for more research advocate for appropriate clinical trials support research by direct funding support research by publicizing clinical trials provide information and support for patients ... and be a voice for the LMS community We are working for the cure.... What is Leiomyosarcoma? Information and Events Secrets of a Man's Garden A new book, by former board member, Gloria Schwartz, about one man's journey with LMS. All profits go to LMSdr Read more . . . LMSdr Board member gives speeches for the American Cancer Society Warren delivered speeches to inspire and raise awareness Read more . . . Sarcoma mini-symposium at NYU A "Sarcoma Update" took place on Friday, July 18th, at NYU Medical Center read more . . . Berkwood Hedge 3rd Grade Class To help fund LMS research, the Berkwood Hedge 3rd Grade class sold soup and cookies. Your parents and your teacher Becca must be very proud of you. We are! Thank you! Golf Tournament Fundraiser Memorial Day Monday, May 26, 2008 Frasher's Steakhouse and Lounge 5th Annual Charity Golf Tournament, benefiting the LMSarcoma Direct Research Foundation, was again held this year to honor the memory of Misty Layne . The tournament was held at the Raven Golf Club South Mountain read more . . . Soccer Tournament Fundraiser Georgia : May 17th, 2008 Annual soccer tournament was again held this year to honor the memory of Elaine Brexel. For more information, click HERE News about Deforolimus Learn about Ariad's Phase III SUCCEED trial. Suzie Siegel (LMS patient and reporter) interviewed Ariad representatives read more . . . View Trial Locations Testing All Uterine Sarcomas Shirley Collings, ULMS survivor, spoke at the British Sarcoma Group Conference. Click here for more information. Show your support Help Raise Awareness - Click HERE for Pins, Ribbons and Wristbands! Fundraiser for LMS research. Alaska Racquetball tournament took place Aug 23-26 with our own LMS champ, Warren . Click here for more information. Click here to see what happened last year. LMSdr Joint Research Grant Joining with Liddy Shriver Foundation, LMSdr has awarded $50,000 to NYU for leiomyosarcoma research. read more . . . Presentation, June 15, 2007 Osteoporosis and Bone Health for Cancer Patients. read more . . . Gleanings from a Novice Reports on LMS Tissue Sample Repository and LMS Microarray Study read more . . . Collecting Locations LMSdr has sent zipcode information to Ariad Pharmaceuticals. This information will provide a better idea of the location of our LMS community. We will continue to gather and track this information. Please enter your zip code information. Submit Your Info . . . Donate Tissue Samples Again! Dr. announces his new Leiomyosarcoma Tissue Repository Bio-Bank available to all researchers. Donate your Stanford samples or new tissue. read more . . . Participate in a Study! Study on LMS risk factors. Does your family have more than one member diagnosed with LMS or kidney cancer? Contact Steinbart at NCI. 1-800-518-8474. Personal Advocacy! Pamela Sprott, LMS survivor, represented the LMS community in a rally "On the Hill"... read more . . . Past Events Check out information and events from 2006 and early 2007. read more . . . 2008 Racquetball Tournament Oct 2 - 5 Hopes and Dreams Fundraiser For the third consecutive year, Warren brings us information on this great Alaskan fundraiser. Click HERE for more information and to print the registration form. Stand Up To Cancer Alaska Our own LMSdr Board member, Warren , discusses Cancer Research Funding. Read more ... Stand Up To Cancer September 5th, 2008 at 8pm ABC, NBC, & CBS will simultaneously broadcast this special event. Check it out ... Golf Clinic Fundraiser August 2008 Thank You Helen Kurtin and friends of survivor Donna Brinkmeyer, for a golf clinic to raise funds for LMS Research. Read more ... "Flip Flop" Fundraiser July 2008Read about the "Flip Flop" fundraiser in honor of Bernadette M. Hollis.Read more ... Sarcoma Patient Registry Sarcoma Foundation of America is developing a central database for Sarcoma patient information. We need you. Read more . . . Team Sarcoma Annual Event Our friends at the Liddy Shriver Foundation create a wonderful awareness campaign each year. This event is virtually worldwide. LMSdr will be participating again this year. To find a event near you, click here. LMSdr Joint Research Grant - Update Research co-funded by LMSdr Foundation and the Liddy Shriver Foundation. Eva Hernando, PhD describes her ongoing research in microDNA deregulation. read more . . . Marathon Fundraiser June 1st, Tack ran in memory of her cousin, Dawn . . .Read more ... Grant Awarded $50,000 Grant awarded to collaborative effort of three researchers. Read more ... Marathon Fundraiser is raising awareness and funds by running her first marathon... Click here for more information. Cure Leiomyosarcoma Campaign The new "Cure Leiomyosarcoma Campaign" is working to speed the process to finding the cure. LMSdr and other foundations are helping support this great cause. read more . . . 2008 Excellence in Care Award Nominations are now being accepted for this award. read more . . . November 1–3, 2007: Advocacy 13th Annual CTOS Meeting was held in Seattle, WACTOS - Connective Tissue Oncology Society. read the review . . . October 2007 Fundraiser A very special Thank You to and Tyler Peragallo for their Haunted Woods fundraiser to help LMSdr raise research funds. Sending you love and hugs from your mom's foundation. 2007 Team Sarcoma Initiative Team LMSdr held its 1st Annual Mini-Triathlon in Tulsa, Oklahoma on July 13, 14, and 15. "A Bad Luck Day for Sarcoma!" This initiative raises money for sarcoma research. read more . . . Leiomyosarcoma Quilt This is the second LMS Quilt. read more . . . read about the first one . . . Trial Update Dr. Hensley Describes Her Adjuvant Gem/Tax Trial For ULMS. read more . . . LMSeAlerts To sign up and learn more about receiving this important news item, Click here Book by LMS Survivor! I can do this: Living with Cancer. Tracing a Year of Hope. by: Beverlye Hyman Fead Join a Listserve! Joining a Listserve could help save your life. There are many listserve members who will tell you what a major role their Listserve friends have made in helping them survive. Find a Listserve . . . Do Something Fun! eCards! This website has several eCards you can mail to your friends. Terms of Use Back to Top Last Edited - 28 September 2008 00:39 am with something thats this invassive I would not hesitate to have a total hysterectomy your children will be scared I had a major surgery a few years back and my boys were teens at the time and they spoiled me rotten they even changed my bed pan I know this sounds out there but when were sick this is what our loves do for us they understand that you are ill and want to take all away from you so I think you should all sit down and have a family conversation and be as honest with your feelings that you are expressing here today and I think with also not having and empty nest as you are lucky to have children that all should workout your aware be aggressive as possible my prayers go to you and your family may Angels carry you through this life changing ordeal with peace and guidance in finding a center where you all come together and than are able to walk forward with all of my courage faith and love I send it to you always from my heart love me senegalady@... wrote: , my I ask what LMS is? Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 9:31:01 A.M. Eastern Daylight Time, redheadparadis writes: I know the question of the century. So many theories. I have been bleeding intensley, SEVERE ABDOMINAL pain. I thought I could blame it on menstruation which is irregular to say the least. But I actually visited my mother's ob today, he was the doctor who saw zero in all of my ultrasounds, and my mother's but scheduled her typical hysterectomy at the age of 61. Only to discover LMS all over her body???She had sonograms, she had vaginal sonograms, and her life ended in 3 days.r I am constantly bloated, I bleed iraticaly - sp- came home from Hawaii and ended up same evening in hospital due to bleeding and pain. My visit today was with the doctor that my mother played"hide and seek" with, now is saavy to LMS... and I'm not going to play hypocrondriac here, but awareness is nothing to laugh at. Considering my mom's mom and now sister have LMS. (had for my grandmother)My mind tells me hysterectomy to release this constant fear, the medical field says no. Don't exxagerate. But I feel horrible and now my vicodin isn't working. I WANT MY LIFE BACK. ITS LEFT. I HATE BEING IN BED WHEN MY CHILDREN COME HOME FROM SCHOOL- I HATE HURTING SO AS TO IMPACT MY LOVED ONES LIVES.My doctor saw a cyst that was swollen on my right ovary, but now with a vaginal sonogram is gone. They did keep my mother's tissue, please please give me some advice...I'm so tired.He told me CA-125 is completely unaccurate. So why waste the time. He said my choice to have biopsies of both ovaries, to compare to my mother's would be his next step to a partial hysterectomy.Any words of wisdom or advice in THIS group is welcomed.Please! I have 3 children, and I'm not going to play the game mom did by never complainig, I am voicing my pain so as to perhaps be overly proactive, or just stay a while on this planet. I have MANY things left to do.All my spirit and gratitude,------------------------------------Humanity Healing,Healing the heart of Humanity,one soul at the time. <*> To change settings online go to: /join(! ID required)<*>To download our new ToolBar http://Network.OurOrganizationToolbar.com http://.OurOrganizationToolbar.com <*>www..net<*>Visit our Power Mallhttp://www.mypowermall.com/Biz/Home/151065FAIR USE NOTICE: This page may contains copyrighted material the use of which has not been specifically authorized by the copyright owner. This website distributes this material without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. We believe this constitutes a fair use of any such copyrighted material as provided for in 17 U.S.C § 107.~ Confidentiality Advisory ~This information is privileged and confidential and is intended only for the person or entity to which it is addressed.Any review, retransmission, dissemination or other use of this information(including attachments)by persons or entities other than the intended recipient is prohibited.If you are not the intended recipient, please delete the information fromyour system and contact the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 HomePatient Registries LMSdr Patient LocationSarcoma Registry The Foundation Mission StatementBoard of TrusteesExecutive Director and StaffScientific Advisory CommitteeAnnual BudgetFounder's Page eAlertsNews and Advocacy NewsNewsletterAdvocacyMedia Coverage How to Help Ways to HelpPins & BraceletsBrochureShop for the CauseSend an eCard Send an eCard Donate Now Memorials and Tribute Funds Thank You, Donors 200820072006 Fundraisers Patient Resources Treatment PossibilitiesSarcoma CentersPatient to Patient Caregiver's Corner Our Stories LMS Info & Support What is LMS?Abbreviations Clinical Trials Patient LocationsAdult TrialsChild TrialsNon-USA TrialsULMS Trial UpdateSUCCEED Trial Tissue Bank Research Grants Grant ApplicationGrants AwardedCure Leiomyosarcoma Excellence In Care Contact Us LEIOMYOSARCOMA DIRECT RESEARCH LMSarcoma Direct Research Foundation (LMSdr) was created to bridge the gap between Leiomyosarcoma researchers and Leiomyosarcoma patients. This Foundation will ... advocate for more research advocate for appropriate clinical trials support research by direct funding support research by publicizing clinical trials provide information and support for patients ... and be a voice for the LMS community We are working for the cure.... What is Leiomyosarcoma? Information and Events Secrets of a Man's Garden A new book, by former board member, Gloria Schwartz, about one man's journey with LMS. All profits go to LMSdr Read more . . . LMSdr Board member gives speeches for the American Cancer Society Warren delivered speeches to inspire and raise awareness Read more . . . Sarcoma mini-symposium at NYU A "Sarcoma Update" took place on Friday, July 18th, at NYU Medical Center read more . . . Berkwood Hedge 3rd Grade Class To help fund LMS research, the Berkwood Hedge 3rd Grade class sold soup and cookies. Your parents and your teacher Becca must be very proud of you. We are! Thank you! Golf Tournament Fundraiser Memorial Day Monday, May 26, 2008 Frasher's Steakhouse and Lounge 5th Annual Charity Golf Tournament, benefiting the LMSarcoma Direct Research Foundation, was again held this year to honor the memory of Misty Layne . The tournament was held at the Raven Golf Club South Mountain read more . . .. Soccer Tournament Fundraiser Georgia : May 17th, 2008 Annual soccer tournament was again held this year to honor the memory of Elaine Brexel. For more information, click HERE News about Deforolimus Learn about Ariad's Phase III SUCCEED trial. Suzie Siegel (LMS patient and reporter) interviewed Ariad representatives read more . . . View Trial Locations Testing All Uterine Sarcomas Shirley Collings, ULMS survivor, spoke at the British Sarcoma Group Conference. Click here for more information. Show your support Help Raise Awareness - Click HERE for Pins, Ribbons and Wristbands! Fundraiser for LMS research. Alaska Racquetball tournament took place Aug 23-26 with our own LMS champ, Warren . Click here for more information. Click here to see what happened last year. LMSdr Joint Research Grant Joining with Liddy Shriver Foundation, LMSdr has awarded $50,000 to NYU for leiomyosarcoma research. read more . . . Presentation, June 15, 2007 Osteoporosis and Bone Health for Cancer Patients. read more . . . Gleanings from a Novice Reports on LMS Tissue Sample Repository and LMS Microarray Study read more . . . Collecting Locations LMSdr has sent zipcode information to Ariad Pharmaceuticals. This information will provide a better idea of the location of our LMS community. We will continue to gather and track this information. Please enter your zip code information. Submit Your Info . . . Donate Tissue Samples Again! Dr. announces his new Leiomyosarcoma Tissue Repository Bio-Bank available to all researchers. Donate your Stanford samples or new tissue. read more . . . Participate in a Study! Study on LMS risk factors. Does your family have more than one member diagnosed with LMS or kidney cancer? Contact Steinbart at NCI. 1-800-518-8474. Personal Advocacy! Pamela Sprott, LMS survivor, represented the LMS community in a rally "On the Hill"... read more . . . Past Events Check out information and events from 2006 and early 2007. read more . . . 2008 Racquetball Tournament Oct 2 - 5 Hopes and Dreams Fundraiser For the third consecutive year, Warren brings us information on this great Alaskan fundraiser. Click HERE for more information and to print the registration form. Stand Up To Cancer Alaska Our own LMSdr Board member, Warren , discusses Cancer Research Funding. Read more ... Stand Up To Cancer September 5th, 2008 at 8pm ABC, NBC, & CBS will simultaneously broadcast this special event. Check it out ... Golf Clinic Fundraiser August 2008 Thank You Helen Kurtin and friends of survivor Donna Brinkmeyer, for a golf clinic to raise funds for LMS Research. Read more ... "Flip Flop" Fundraiser July 2008 Read about the "Flip Flop" fundraiser in honor of Bernadette M. Hollis.Read more ... Sarcoma Patient Registry Sarcoma Foundation of America is developing a central database for Sarcoma patient information. We need you. Read more . . . Team Sarcoma Annual Event Our friends at the Liddy Shriver Foundation create a wonderful awareness campaign each year. This event is virtually worldwide. LMSdr will be participating again this year. To find a event near you, click here. LMSdr Joint Research Grant - Update Research co-funded by LMSdr Foundation and the Liddy Shriver Foundation. Eva Hernando, PhD describes her ongoing research in microDNA deregulation. read more . . . Marathon Fundraiser June 1st, Tack ran in memory of her cousin, Dawn . . .Read more ... Grant Awarded $50,000 Grant awarded to collaborative effort of three researchers. Read more ... Marathon Fundraiser is raising awareness and funds by running her first marathon... Click here for more information. Cure Leiomyosarcoma Campaign The new "Cure Leiomyosarcoma Campaign" is working to speed the process to finding the cure. LMSdr and other foundations are helping support this great cause. read more . . . 2008 Excellence in Care Award Nominations are now being accepted for this award. read more . . . November 1–3, 2007: Advocacy 13th Annual CTOS Meeting was held in Seattle, WA CTOS - Connective Tissue Oncology Society. read the review . . . October 2007 Fundraiser A very special Thank You to and Tyler Peragallo for their Haunted Woods fundraiser to help LMSdr raise research funds. Sending you love and hugs from your mom's foundation. 2007 Team Sarcoma Initiative Team LMSdr held its 1st Annual Mini-Triathlon in Tulsa, Oklahoma on July 13, 14, and 15. "A Bad Luck Day for Sarcoma!" This initiative raises money for sarcoma research. read more . . . Leiomyosarcoma Quilt This is the second LMS Quilt. read more . . . read about the first one . . . Trial Update Dr. Hensley Describes Her Adjuvant Gem/Tax Trial For ULMS. read more . . . LMSeAlerts To sign up and learn more about receiving this important news item, Click here Book by LMS Survivor! I can do this: Living with Cancer. Tracing a Year of Hope. by: Beverlye Hyman Fead Join a Listserve! Joining a Listserve could help save your life. There are many listserve members who will tell you what a major role their Listserve friends have made in helping them survive. Find a Listserve . . . Do Something Fun! eCards! This website has several eCards you can mail to your friends. Terms of Use Back to Top Last Edited - 28 September 2008 00:39 am with something thats this invassive I would not hesitate to have a total hysterectomy your children will be scared I had a major surgery a few years back and my boys were teens at the time and they spoiled me rotten they even changed my bed pan I know this sounds out there but when were sick this is what our loves do for us they understand that you are ill and want to take all away from you so I think you should all sit down and have a family conversation and be as honest with your feelings that you are expressing here today and I think with also not having and empty nest as you are lucky to have children that all should workout your aware be aggressive as possible my prayers go to you and your family may Angels carry you through this life changing ordeal with peace and guidance in finding a center where you all come together and than are able to walk forward with all of my courage faith and love I send it to you always from my heart love me senegalady@... wrote: , my I ask what LMS is? Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 9:31:01 A.M. Eastern Daylight Time, redheadparadis writes: I know the question of the century. So many theories. I have been bleeding intensley, SEVERE ABDOMINAL pain. I thought I could blame it on menstruation which is irregular to say the least. But I actually visited my mother's ob today, he was the doctor who saw zero in all of my ultrasounds, and my mother's but scheduled her typical hysterectomy at the age of 61. Only to discover LMS all over her body???She had sonograms, she had vaginal sonograms, and her life ended in 3 days.r I am constantly bloated, I bleed iraticaly - sp- came home from Hawaii and ended up same evening in hospital due to bleeding and pain. My visit today was with the doctor that my mother played"hide and seek" with, now is saavy to LMS... and I'm not going to play hypocrondriac here, but awareness is nothing to laugh at. Considering my mom's mom and now sister have LMS. (had for my grandmother)My mind tells me hysterectomy to release this constant fear, the medical field says no. Don't exxagerate. But I feel horrible and now my vicodin isn't working. I WANT MY LIFE BACK. ITS LEFT. I HATE BEING IN BED WHEN MY CHILDREN COME HOME FROM SCHOOL- I HATE HURTING SO AS TO IMPACT MY LOVED ONES LIVES.My doctor saw a cyst that was swollen on my right ovary, but now with a vaginal sonogram is gone. They did keep my mother's tissue, please please give me some advice...I'm so tired.He told me CA-125 is completely unaccurate. So why waste the time. He said my choice to have biopsies of both ovaries, to compare to my mother's would be his next step to a partial hysterectomy.Any words of wisdom or advice in THIS group is welcomed.Please! I have 3 children, and I'm not going to play the game mom did by never complainig, I am voicing my pain so as to perhaps be overly proactive, or just stay a while on this planet. I have MANY things left to do.All my spirit and gratitude,------------------------------------Humanity Healing,Healing the heart of Humanity,one soul at the time. <*> To change settings online go to: /join(! ID required)<*>To download our new ToolBar http://Network.OurOrganizationToolbar.com http://.OurOrganizationToolbar.com <*>www..net<*>Visit our Power Mallhttp://www.mypowermall.com/Biz/Home/151065FAIR USE NOTICE: This page may contains copyrighted material the use of which has not been specifically authorized by the copyright owner. This website distributes this material without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. We believe this constitutes a fair use of any such copyrighted material as provided for in 17 U.S.C § 107.~ Confidentiality Advisory ~This information is privileged and confidential and is intended only for the person or entity to which it is addressed.Any review, retransmission, dissemination or other use of this information(including attachments)by persons or entities other than the intended recipient is prohibited.If you are not the intended recipient, please delete the information fromyour system and contact the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2008 Report Share Posted October 16, 2008 Cheryl Fibro is not a disease it is a state of the heart and I have personally spent thousand tens of thousands on studying it it does not trluy exist but has been given a name when I was a little girl I had been told when I got older I would have a medical problem that had no name and this was it so after 12 years of thinking my life would be shortened by somehting that was going to put me in a wheel chair which I refused to own after clearing my body and mind from all meds and all negativity in my life I have nothing but a BIG HEART <3 boy was I gullible on drugs <3senegalady@... wrote: Thank you for the information . I remember not long ago no one knew what Fibromyalgia was. I used to wear a t-shirt that said "Ask me about Fibromyalgia" and many people did ask me. so I had the opportunity to explain it to them. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 4:41:54 P.M. Eastern Daylight Time, jsm2224 writes: Home Patient Registries LMSdr Patient Location Sarcoma Registry The Foundation Mission Statement Board of Trustees Executive Director and Staff Scientific Advisory Committee Annual Budget Founder's Page eAlerts News and Advocacy News Newsletter Advocacy Media Coverage How to Help Ways to Help Pins & Bracelets Brochure Shop for the Cause Send an eCard Send an eCard Donate Now Memorials and Tribute Funds Thank You, Donors 2008 2007 2006 Fundraisers Patient Resources Treatment Possibilities Sarcoma Centers Patient to Patient Caregiver's Corner Our Stories LMS Info & Support What is LMS? Abbreviations Clinical Trials Patient Locations Adult Trials Child Trials Non-USA Trials ULMS Trial Update SUCCEED Trial Tissue Bank Research Grants Grant Application Grants Awarded Cure Leiomyosarcoma Excellence In Care Contact Us LEIOMYOSARCOMA DIRECT RESEARCH LMSarcoma Direct Research Foundation (LMSdr) was created to bridge the gap between Leiomyosarcoma researchers and Leiomyosarcoma patients. This Foundation will ... advocate for more research advocate for appropriate clinical trials support research by direct funding support research by publicizing clinical trials provide information and support for patients ... and be a voice for the LMS community We are working for the cure.... What is Leiomyosarcoma? Information and Events Secrets of a Man's Garden A new book, by former board member, Gloria Schwartz, about one man's journey with LMS. All profits go to LMSdr Read more . . . LMSdr Board member gives speeches for the American Cancer Society Warren delivered speeches to inspire and raise awareness Read more . . . Sarcoma mini-symposium at NYU A "Sarcoma Update" took place on Friday, July 18th, at NYU Medical Center read more . . . Berkwood Hedge 3rd Grade Class To help fund LMS research, the Berkwood Hedge 3rd Grade class sold soup and cookies. Your parents and your teacher Becca must be very proud of you. We are! Thank you! Golf Tournament Fundraiser Memorial Day Monday, May 26, 2008 Frasher's Steakhouse and Lounge 5th Annual Charity Golf Tournament, benefiting the LMSarcoma Direct Research Foundation, was again held this year to honor the memory of Misty Layne . The tournament was held at the Raven Golf Club South Mountain read more . . . Soccer Tournament Fundraiser Georgia : May 17th, 2008 Annual soccer tournament was again held this year to honor the memory of Elaine Brexel. For more information, click HERE News about Deforolimus Learn about Ariad's Phase III SUCCEED trial. Suzie Siegel (LMS patient and reporter) interviewed Ariad representatives read more . . . View Trial Locations Testing All Uterine Sarcomas Shirley Collings, ULMS survivor, spoke at the British Sarcoma Group Conference. Click here for more information. Show your support Help Raise Awareness - Click HERE for Pins, Ribbons and Wristbands! Fundraiser for LMS research. Alaska Racquetball tournament took place Aug 23-26 with our own LMS champ, Warren . Click here for more information. Click here to see what happened last year. LMSdr Joint Research Grant Joining with Liddy Shriver Foundation, LMSdr has awarded $50,000 to NYU for leiomyosarcoma research. read more . . . Presentation, June 15, 2007 Osteoporosis and Bone Health for Cancer Patients. read more . . . Gleanings from a Novice Reports on LMS Tissue Sample Repository and LMS Microarray Study read more . . . Collecting Locations LMSdr has sent zipcode information to Ariad Pharmaceuticals. This information will provide a better idea of the location of our LMS community. We will continue to gather and track this information. Please enter your zip code information. Submit Your Info . . . Donate Tissue Samples Again! Dr. announces his new Leiomyosarcoma Tissue Repository Bio-Bank available to all researchers. Donate your Stanford samples or new tissue. read more . . . Participate in a Study! Study on LMS risk factors. Does your family have more than one member diagnosed with LMS or kidney cancer? Contact Steinbart at NCI. 1-800-518-8474. Personal Advocacy! Pamela Sprott, LMS survivor, represented the LMS community in a rally "On the Hill"... read more . . . Past Events Check out information and events from 2006 and early 2007. read more . . . 2008 Racquetball Tournament Oct 2 - 5 Hopes and Dreams Fundraiser For the third consecutive year, Warren brings us information on this great Alaskan fundraiser. Click HERE for more information and to print the registration form. Stand Up To Cancer Alaska Our own LMSdr Board member, Warren , discusses Cancer Research Funding. Read more ... Stand Up To Cancer September 5th, 2008 at 8pm ABC, NBC, & CBS will simultaneously broadcast this special event. Check it out ... Golf Clinic Fundraiser August 2008 Thank You Helen Kurtin and friends of survivor Donna Brinkmeyer, for a golf clinic to raise funds for LMS Research. Read more ... "Flip Flop" Fundraiser July 2008Read about the "Flip Flop" fundraiser in honor of Bernadette M. Hollis.Read more ... Sarcoma Patient Registry Sarcoma Foundation of America is developing a central database for Sarcoma patient information. We need you. Read more . . .. Team Sarcoma Annual Event Our friends at the Liddy Shriver Foundation create a wonderful awareness campaign each year. This event is virtually worldwide. LMSdr will be participating again this year. To find a event near you, click here. LMSdr Joint Research Grant - Update Research co-funded by LMSdr Foundation and the Liddy Shriver Foundation. Eva Hernando, PhD describes her ongoing research in microDNA deregulation. read more . . . Marathon Fundraiser June 1st, Tack ran in memory of her cousin, Dawn . . .Read more ... Grant Awarded $50,000 Grant awarded to collaborative effort of three researchers. Read more ... Marathon Fundraiser is raising awareness and funds by running her first marathon... Click here for more information. Cure Leiomyosarcoma Campaign The new "Cure Leiomyosarcoma Campaign" is working to speed the process to finding the cure. LMSdr and other foundations are helping support this great cause. read more . . . 2008 Excellence in Care Award Nominations are now being accepted for this award. read more . . . November 1–3, 2007: Advocacy 13th Annual CTOS Meeting was held in Seattle, WACTOS - Connective Tissue Oncology Society. read the review . . . October 2007 Fundraiser A very special Thank You to and Tyler Peragallo for their Haunted Woods fundraiser to help LMSdr raise research funds. Sending you love and hugs from your mom's foundation. 2007 Team Sarcoma Initiative Team LMSdr held its 1st Annual Mini-Triathlon in Tulsa, Oklahoma on July 13, 14, and 15. "A Bad Luck Day for Sarcoma!" This initiative raises money for sarcoma research. read more . . . Leiomyosarcoma Quilt This is the second LMS Quilt. read more . . . read about the first one . . . Trial Update Dr. Hensley Describes Her Adjuvant Gem/Tax Trial For ULMS. read more . . . LMSeAlerts To sign up and learn more about receiving this important news item, Click here Book by LMS Survivor! I can do this: Living with Cancer. Tracing a Year of Hope. by: Beverlye Hyman Fead Join a Listserve! Joining a Listserve could help save your life. There are many listserve members who will tell you what a major role their Listserve friends have made in helping them survive. Find a Listserve . . . Do Something Fun! eCards! This website has several eCards you can mail to your friends. Terms of Use Back to Top Last Edited - 28 September 2008 00:39 am with something thats this invassive I would not hesitate to have a total hysterectomy your children will be scared I had a major surgery a few years back and my boys were teens at the time and they spoiled me rotten they even changed my bed pan I know this sounds out there but when were sick this is what our loves do for us they understand that you are ill and want to take all away from you so I think you should all sit down and have a family conversation and be as honest with your feelings that you are expressing here today and I think with also not having and empty nest as you are lucky to have children that all should workout your aware be aggressive as possible my prayers go to you and your family may Angels carry you through this life changing ordeal with peace and guidance in finding a center where you all come together and than are able to walk forward with all of my courage faith and love I send it to you always from my heart love me senegaladyaol wrote: , my I ask what LMS is? Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 9:31:01 A.M. Eastern Daylight Time, redheadparadis writes: I know the question of the century. So many theories. I have been bleeding intensley, SEVERE ABDOMINAL pain. I thought I could blame it on menstruation which is irregular to say the least. But I actually visited my mother's ob today, he was the doctor who saw zero in all of my ultrasounds, and my mother's but scheduled her typical hysterectomy at the age of 61. Only to discover LMS all over her body???She had sonograms, she had vaginal sonograms, and her life ended in 3 days.r I am constantly bloated, I bleed iraticaly - sp- came home from Hawaii and ended up same evening in hospital due to bleeding and pain. My visit today was with the doctor that my mother played"hide and seek" with, now is saavy to LMS... and I'm not going to play hypocrondriac here, but awareness is nothing to laugh at. Considering my mom's mom and now sister have LMS. (had for my grandmother)My mind tells me hysterectomy to release this constant fear, the medical field says no. Don't exxagerate. But I feel horrible and now my vicodin isn't working. I WANT MY LIFE BACK. ITS LEFT. I HATE BEING IN BED WHEN MY CHILDREN COME HOME FROM SCHOOL- I HATE HURTING SO AS TO IMPACT MY LOVED ONES LIVES.My doctor saw a cyst that was swollen on my right ovary, but now with a vaginal sonogram is gone. They did keep my mother's tissue, please please give me some advice...I'm so tired.He told me CA-125 is completely unaccurate. So why waste the time. He said my choice to have biopsies of both ovaries, to compare to my mother's would be his next step to a partial hysterectomy.Any words of wisdom or advice in THIS group is welcomed.Please! I have 3 children, and I'm not going to play the game mom did by never complainig, I am voicing my pain so as to perhaps be overly proactive, or just stay a while on this planet. I have MANY things left to do.All my spirit and gratitude,------------------------------------Humanity Healing,Healing the heart of Humanity,one soul at the time. <*> To change settings online go to: /join(! ID required)<*>To download our new ToolBar http://Network.OurOrganizationToolbar.com http://.OurOrganizationToolbar.com <*>www..net<*>Visit our Power Mallhttp://www.mypowermall.com/Biz/Home/151065FAIR USE NOTICE: This page may contains copyrighted material the use of which has not been specifically authorized by the copyright owner. This website distributes this material without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. 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Guest guest Posted October 18, 2008 Report Share Posted October 18, 2008 , I spent years at doctor offices being told that I needed to see a psychiatrist, being told my symptoms were not real, they were from stress. Medication was just piled on me, never even knowing what was being treated. I went for about ten years like that until one day I walked into a neurologists office and within 30 minutes he told me that I had Fibromyalgia. Everything in my life made sense after that. The years of being in pain, being so exhausted, the stomach problems, the lack of sleep. When I was finally diagnosed I learned everything I could about the disease and started to be able to help myself. And found a doctor that would help me. It was such a frustrating and awful time, but when it all began to come together finally so much of the stress was gone. Like you, I felt useless. I had to quit working but it took me 3 years to get my disability. I guess what I want to say, is that you are not useless. You are important to us and to your family. My mom died when she was just 37 of ovarian cancer and I would give all I have to have her for one more day even if she was bedridden for all of it. I would rather have had a bedridden mom for the rest of my life than to have her gone. I am sure your children feel the same way. Suicide leaves such a terrible legacy for children because they blame themselves. I don't think that is what you want to leave your children. I still live in chronic pain and all kinds of other illness from the fms, diabetes, stress and hypothryoidism but I have found ways to make that only part of my life, not all of my life. I am here if you need me . I don't know what it is like to have LMS, but I do know what it is like to suffer and feel terrible about who you are. I am a good listener and I am the hope that things do get better. Nothing ever stays the same. I have good times and bad and I let my friends help me through the bad times. Let us help you through your bad times. Please write me anytime. Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace.com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/18/2008 7:00:57 P.M. Eastern Daylight Time, redheadparadis@... writes: I am so sorry for the late reply? LMS is short for Leiomyosarcoma, a rare soft tissue cancer that is hidden due to the fact that it is not a solid mass seen through sonograms, etc. There are so many solid opinions that due to the rarity, not genetic, possible, etc. But my grandmother we discovered was struck with this form at the same age my mother passed 2 years ago, unknown to the Doctors, only to perform a simple hysterectomy to aleviate her bloating and pain to discover a complete takeover of LMS. It is a battle in the medical field. Those dealing with it obviously are more saavy to the "dragon" than those studying it. I am embaressed to say, my health and quality of life, due to the medical field finding "nothing" has me ready to release myself. I am done with the time and pain of medical visits all pointing the finger to somebody or something else. I am actually planning my release into the next life...this sounds so horrible, But I am so tired of feeeling I am not positive anymore on those around me, most importantly my children, for ALWAYS BEING IN BED. I am not a strong role model of a woman. In gratitude, Mrs. Paradis From: senegalady@... <senegalady@...>Subject: Re: [] Is LMS genetic.... Date: Thursday, October 16, 2008, 7:20 AM , my I ask what LMS is? Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace. com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 9:31:01 A.M. Eastern Daylight Time, redheadparadis writes: I know the question of the century. So many theories. I have been bleeding intensley, SEVERE ABDOMINAL pain. I thought I could blame it on menstruation which is irregular to say the least. But I actually visited my mother's ob today, he was the doctor who saw zero in all of my ultrasounds, and my mother's but scheduled her typical hysterectomy at the age of 61. Only to discover LMS all over her body???She had sonograms, she had vaginal sonograms, and her life ended in 3 days.r I am constantly bloated, I bleed iraticaly - sp- came home from Hawaii and ended up same evening in hospital due to bleeding and pain. My visit today was with the doctor that my mother played"hide and seek" with, now is saavy to LMS... and I'm not going to play hypocrondriac here, but awareness is nothing to laugh at. Considering my mom's mom and now sister have LMS. (had for my grandmother)My mind tells me hysterectomy to release this constant fear, the medical field says no. Don't exxagerate. But I feel horrible and now my vicodin isn't working. I WANT MY LIFE BACK. ITS LEFT. I HATE BEING IN BED WHEN MY CHILDREN COME HOME FROM SCHOOL- I HATE HURTING SO AS TO IMPACT MY LOVED ONES LIVES.My doctor saw a cyst that was swollen on my right ovary, but now with a vaginal sonogram is gone. They did keep my mother's tissue, please please give me some advice...I'm so tired.He told me CA-125 is completely unaccurate. So why waste the time. He said my choice to have biopsies of both ovaries, to compare to my mother's would be his next step to a partial hysterectomy.Any words of wisdom or advice in THIS group is welcomed.Please! I have 3 children, and I'm not going to play the game mom did by never complainig, I am voicing my pain so as to perhaps be overly proactive, or just stay a while on this planet. I have MANY things left to do.All my spirit and gratitude,------------ --------- --------- ------Humanity Healing,Healing the heart of Humanity,one soul at the time. <*> To change settings online go to: http://groups. / group/HumanityHe aling/join( ID required)<*>To download our new ToolBar http://HumanityHeal ingNetwork. OurOrganizationT oolbar.com http://humanityheal ing.OurOrganizat ionToolbar. com <*>www. .net<*>Visit our Power Mallhttp://www.mypowerm all.com/Biz/ Home/151065FAIR USE NOTICE: This page may contains copyrighted material the use of which has not been specifically authorized by the copyright owner. This website distributes this material without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. We believe this constitutes a fair use of any such copyrighted material as provided for in 17 U.S.C § 107.~ Confidentiality Advisory ~This information is privileged and confidential and is intended only for the person or entity to which it is addressed.Any review, retransmission, dissemination or other use of this information(including attachments)by persons or entities other than the intended recipient is prohibited.If you are not the intended recipient, please delete the information fromyour system and contact the sender. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2008 Report Share Posted October 18, 2008 I am so sorry for the late reply? LMS is short for Leiomyosarcoma, a rare soft tissue cancer that is hidden due to the fact that it is not a solid mass seen through sonograms, etc. There are so many solid opinions that due to the rarity, not genetic, possible, etc. But my grandmother we discovered was struck with this form at the same age my mother passed 2 years ago, unknown to the Doctors, only to perform a simple hysterectomy to aleviate her bloating and pain to discover a complete takeover of LMS. It is a battle in the medical field. Those dealing with it obviously are more saavy to the "dragon" than those studying it. I am embaressed to say, my health and quality of life, due to the medical field finding "nothing" has me ready to release myself. I am done with the time and pain of medical visits all pointing the finger to somebody or something else. I am actually planning my release into the next life...this sounds so horrible, But I am so tired of feeeling I am not positive anymore on those around me, most importantly my children, for ALWAYS BEING IN BED. I am not a strong role model of a woman. In gratitude, Mrs. Paradis From: senegalady@... <senegalady@...>Subject: Re: [] Is LMS genetic.... Date: Thursday, October 16, 2008, 7:20 AM , my I ask what LMS is? Peace, Love, Light, and Joy, Cherylvisit me at: www.myspace. com/senegalady "You need to smile to your sorrow because you are more than your sorrow." Thich Nhat Hanh In a message dated 10/16/2008 9:31:01 A.M. Eastern Daylight Time, redheadparadis writes: I know the question of the century. So many theories. I have been bleeding intensley, SEVERE ABDOMINAL pain. I thought I could blame it on menstruation which is irregular to say the least. But I actually visited my mother's ob today, he was the doctor who saw zero in all of my ultrasounds, and my mother's but scheduled her typical hysterectomy at the age of 61. Only to discover LMS all over her body???She had sonograms, she had vaginal sonograms, and her life ended in 3 days.r I am constantly bloated, I bleed iraticaly - sp- came home from Hawaii and ended up same evening in hospital due to bleeding and pain. My visit today was with the doctor that my mother played"hide and seek" with, now is saavy to LMS... and I'm not going to play hypocrondriac here, but awareness is nothing to laugh at. Considering my mom's mom and now sister have LMS. (had for my grandmother)My mind tells me hysterectomy to release this constant fear, the medical field says no. Don't exxagerate. But I feel horrible and now my vicodin isn't working. I WANT MY LIFE BACK. ITS LEFT. I HATE BEING IN BED WHEN MY CHILDREN COME HOME FROM SCHOOL- I HATE HURTING SO AS TO IMPACT MY LOVED ONES LIVES.My doctor saw a cyst that was swollen on my right ovary, but now with a vaginal sonogram is gone. They did keep my mother's tissue, please please give me some advice...I'm so tired.He told me CA-125 is completely unaccurate. So why waste the time. He said my choice to have biopsies of both ovaries, to compare to my mother's would be his next step to a partial hysterectomy.Any words of wisdom or advice in THIS group is welcomed.Please! I have 3 children, and I'm not going to play the game mom did by never complainig, I am voicing my pain so as to perhaps be overly proactive, or just stay a while on this planet. I have MANY things left to do.All my spirit and gratitude,------------ --------- --------- ------Humanity Healing,Healing the heart of Humanity,one soul at the time. <*> To change settings online go to: http://groups. / group/HumanityHe aling/join( ID required)<*>To download our new ToolBar http://HumanityHeal ingNetwork. OurOrganizationT oolbar.com http://humanityheal ing.OurOrganizat ionToolbar. com <*>www. .net<*>Visit our Power Mallhttp://www.mypowerm all.com/Biz/ Home/151065FAIR USE NOTICE: This page may contains copyrighted material the use of which has not been specifically authorized by the copyright owner. This website distributes this material without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. We believe this constitutes a fair use of any such copyrighted material as provided for in 17 U.S.C § 107.~ Confidentiality Advisory ~This information is privileged and confidential and is intended only for the person or entity to which it is addressed.Any review, retransmission, dissemination or other use of this information(including attachments)by persons or entities other than the intended recipient is prohibited.If you are not the intended recipient, please delete the information fromyour system and contact the sender. Quote Link to comment Share on other sites More sharing options...
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