Comments on: About Leiomyosarcoma http://www.darrinsday.com Where one more day means everything...... Fri, 22 Jan 2010 06:11:11 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Melanie http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-264 Melanie Fri, 22 Jan 2010 06:11:11 +0000 http://www.darrinsday.com/?page_id=4#comment-264 My mother has been fighting leiomysarcoma for 10 years now. It started in the uteris and had a historec..it then moved to the lung but was succsesfully removed..it then moved to femur..she went through a femur replacement and was cancer free for 2months..it now has spread to both lungs,liver,spine,shoulder and rib...they have decided surgery is not a option anymore and said he has approx 2 years at best due to how many areas the cancer has spread and being stage 4..she is so high spirited and she seems to be my rock through her ongoing battle..the have suggested that she go through 3 weeks of chemo..3 off and then another 3 weeks...her quality of life is very well right now..she isnt showing many symptoms..they suggest she have chemo soon but said it will reduce the quality of her life a great deal. they always say to her that she must be a fighter as she is so strong and is fighting this disease with everyhting she has..after reading all of the battles you all have gone through i know there is hope. I thank you all for sharing your battles and my prayers are with you all My mother has been fighting leiomysarcoma for 10 years now. It started in the uteris and had a historec..it then moved to the lung but was succsesfully removed..it then moved to femur..she went through a femur replacement and was cancer free for 2months..it now has spread to both lungs,liver,spine,shoulder and rib…they have decided surgery is not a option anymore and said he has approx 2 years at best due to how many areas the cancer has spread and being stage 4..she is so high spirited and she seems to be my rock through her ongoing battle..the have suggested that she go through 3 weeks of chemo..3 off and then another 3 weeks…her quality of life is very well right now..she isnt showing many symptoms..they suggest she have chemo soon but said it will reduce the quality of her life a great deal. they always say to her that she must be a fighter as she is so strong and is fighting this disease with everyhting she has..after reading all of the battles you all have gone through i know there is hope. I thank you all for sharing your battles and my prayers are with you all

]]> By: Anne http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-207 Anne Mon, 24 Nov 2008 23:19:27 +0000 http://www.darrinsday.com/?page_id=4#comment-207 Hi. I had leiomysarcoma of the womb 4 years ago. It has now spread to the skin on my head, both lungs and liver. Have just under gone chemo which has not worked and the tumour in both lungs have grown. Finding support in Swansea is almost non existence as no one knows what to do with me. Have even been told by consultant that if I want to see him to discuss my case I will have to go private and pay to see him. Feel so alone. Thank goodness for web sites like this Hi. I had leiomysarcoma of the womb 4 years ago. It has now spread to the skin on my head, both lungs and liver. Have just under gone chemo which has not worked and the tumour in both lungs have grown. Finding support in Swansea is almost non existence as no one knows what to do with me. Have even been told by consultant that if I want to see him to discuss my case I will have to go private and pay to see him. Feel so alone. Thank goodness for web sites like this

]]> By: Nancy age 55 http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-184 Nancy age 55 Fri, 24 Oct 2008 18:10:45 +0000 http://www.darrinsday.com/?page_id=4#comment-184 I have just started chemo for Leo that's what i call it. I think i'm in stage 2. this is really scary. I have a 16 year old and she says i better be around for her kids. My husband thinks they got it all in surgery. He's my Mr. Positive. I went to Indy for their specialists on sarcomas. I have Adramycin and Dacarbazine for 5 days then I'm off 16 days. I have lots of people praying for me and i will pray for all of you too. I have just started chemo for Leo that’s what i call it. I think i’m in stage 2. this is really scary. I have a 16 year old and she says i better be around for her kids. My husband thinks they got it all in surgery. He’s my Mr. Positive. I went to Indy for their specialists on sarcomas. I have Adramycin and Dacarbazine for 5 days then I’m off 16 days. I have lots of people praying for me and i will pray for all of you too.

]]> By: cindy http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-134 cindy Thu, 07 Aug 2008 04:17:58 +0000 http://www.darrinsday.com/?page_id=4#comment-134 Hi there, I was diagnosed 5 yrs ago with stage 4 LMS. When found, it had already mets to the liver and had damaged one artery. I had 2 surgeries performed in an attempt to remove them, but was very unsuccessful and eventually left me with 2 hernias. I was started on gemcitabine weekly X 3 and off a week and was on for 9 months. My oncologist (who specializes is sarcoma) told me I needed a break from the drug, unfortunately 3 months later it had spread to my lung. I was then treated with Doxirubicin for 6 cycles. After treatment I developed cardiac cardiomyopathy. But the good thing was I was able to stay off drugs for 2 yrs. 1 1/2 yrs ago, my tumors were on the grow again, so I am now in a clinical trial with Yondellis and have been since then. My side effects have been minimal and I have no pain, which is a blessing. I am thankful that I have been able to have good quality of life... I have seen kids graduate with degrees, get engaged, married and have been blessed with becoming a grandma X2. I have also been able to travel a little bit. I am a firm believer that attitude has much to do with how we feel, not only emotionally but physically. I wish the best for all. Hi there,

I was diagnosed 5 yrs ago with stage 4 LMS. When found, it had already mets to the liver and had damaged one artery. I had 2 surgeries performed in an attempt to remove them, but was very unsuccessful and eventually left me with 2 hernias. I was started on gemcitabine weekly X 3 and off a week and was on for 9 months. My oncologist (who specializes is sarcoma) told me I needed a break from the drug, unfortunately 3 months later it had spread to my lung. I was then treated with Doxirubicin for 6 cycles. After treatment I developed cardiac cardiomyopathy. But the good thing was I was able to stay off drugs for 2 yrs. 1 1/2 yrs ago, my tumors were on the grow again, so I am now in a clinical trial with Yondellis and have been since then. My side effects have been minimal and I have no pain, which is a blessing. I am thankful that I have been able to have good quality of life… I have seen kids graduate with degrees, get engaged, married and have been blessed with becoming a grandma X2. I have also been able to travel a little bit. I am a firm believer that attitude has much to do with how we feel, not only emotionally but physically. I wish the best for all.

]]> By: Anna http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-133 Anna Mon, 04 Aug 2008 16:22:51 +0000 http://www.darrinsday.com/?page_id=4#comment-133 My mum has just been diagnosed with stage 1v uterine leiomyosarcoma.It had spread to her hips which have been replaced and she has 3 maybe more spots on her lungs. We are seeing a specialist at a sarcoma unit this week for a second opinion as her current oncologist will not perfom a hysterectomy, I have read about other people also with stage 1v who say they have had surgery so we can only pray the same will be offered for mum. My mum has just been diagnosed with stage 1v uterine leiomyosarcoma.It had spread to her hips which have been replaced and she has 3 maybe more spots on her lungs. We are seeing a specialist at a sarcoma unit this week for a second opinion as her current oncologist will not perfom a hysterectomy, I have read about other people also with stage 1v who say they have had surgery so we can only pray the same will be offered for mum.

]]> By: Kimlin http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-126 Kimlin Wed, 23 Jul 2008 15:46:52 +0000 http://www.darrinsday.com/?page_id=4#comment-126 My mom has been diagnosed with lms 11 months now, it has spread to both lungs and to one side of the heart, she uses oxygen 24 hrs per day. We have been advised that there is no use in continuing the Chemo or even Radiation. The good thing is that she experiences no pain. My prayers are with all patients of this disease. Never give up!!!! My mom has been diagnosed with lms 11 months now, it has spread to both lungs and to one side of the heart, she uses oxygen 24 hrs per day. We have been advised that there is no use in continuing the Chemo or even Radiation. The good thing is that she experiences no pain.

My prayers are with all patients of this disease. Never give up!!!!

]]> By: Carol http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-123 Carol Mon, 14 Jul 2008 11:17:11 +0000 http://www.darrinsday.com/?page_id=4#comment-123 My husband had leiomyo, diagnosed in 2004. The best treatment he had was taxotere and gemzar mix which bought him an extra year of quality life. The toxicity of the chemo finally caused the doc to stop the treatment. He went to Dana Farber for yondellis treatment, which was experimental, but yielded no response. After five years of chemo, radiation, etc., he decided to stop treatment. He was tired, extremely thin, and life quality was poor. He had no taste in his mouth, so even food was not pleasurable any more. His cancer metatisized very quickly into his pancreas, colon and brain. He subsequently died from a stroke from the brain mass. We had a super oncologist locally who constantly found new studies to try to help my husband keep going. We went to Sloan Kettering at first who diagnosed the cancer, but treated us like mannequins. We were left in a room for two hours once when the chemo doc forgot about us. We received excellent treatment at Dana Farber and the Norwalk Cancer Center. We were treated with respect and dignity. Just some thoughts to share. Best wishes to all who are fighting this rare and insidious cancer. Prayers are with you all. My husband had leiomyo, diagnosed in 2004. The best treatment he had was taxotere and gemzar mix which bought him an extra year of quality life. The toxicity of the chemo finally caused the doc to stop the treatment. He went to Dana Farber for yondellis treatment, which was experimental, but yielded no response. After five years of chemo, radiation, etc., he decided to stop treatment. He was tired, extremely thin, and life quality was poor. He had no taste in his mouth, so even food was not pleasurable any more. His cancer metatisized very quickly into his pancreas, colon and brain. He subsequently died from a stroke from the brain mass. We had a super oncologist locally who constantly found new studies to try to help my husband keep going. We went to Sloan Kettering at first who diagnosed the cancer, but treated us like mannequins. We were left in a room for two hours once when the chemo doc forgot about us. We received excellent treatment at Dana Farber and the Norwalk Cancer Center. We were treated with respect and dignity. Just some thoughts to share. Best wishes to all who are fighting this rare and insidious cancer. Prayers are with you all.

]]> By: wdaytonco http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-116 wdaytonco Fri, 16 May 2008 16:26:33 +0000 http://www.darrinsday.com/?page_id=4#comment-116 Pat and Karen, We are so sorry to hear about your leiomyosarcoma. All we can tell you is to fight it as hard and tough as Darrin did - to the bitter end and don't settle. If one Dr. runs out of options, talk to others. Darrin fought it ever step of the way and it bought him 2 more years of time that no doctor ever thought he would have. Don't give up! We're praying for you! Pat and Karen,

We are so sorry to hear about your leiomyosarcoma. All we can tell you is to fight it as hard and tough as Darrin did – to the bitter end and don’t settle. If one Dr. runs out of options, talk to others. Darrin fought it ever step of the way and it bought him 2 more years of time that no doctor ever thought he would have.

Don’t give up! We’re praying for you!

]]> By: pat http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-113 pat Sat, 10 May 2008 14:48:42 +0000 http://www.darrinsday.com/?page_id=4#comment-113 My hysterectomy pathology showed a large leiomyosarcoma, scans showed it has metastasized to the lungs. Two tumors were removed from my right lung, and I'm about to start chemo to shrink the others, perhaps 6 are visible on a CT scan. I may have more surgery to remove what's left. Stage IV doesn't sound good, and I'm concerned that chemo is not considered effective. But here's hoping, and good luck to everyone who shares this boat with me. Pat, age 55 My hysterectomy pathology showed a large leiomyosarcoma, scans showed it has metastasized to the lungs. Two tumors were removed from my right lung, and I’m about to start chemo to shrink the others, perhaps 6 are visible on a CT scan. I may have more surgery to remove what’s left. Stage IV doesn’t sound good, and I’m concerned that chemo is not considered effective. But here’s hoping, and good luck to everyone who shares this boat with me.

Pat, age 55

]]> By: karen http://www.darrinsday.com/what-is-leiomyosarcoma/comment-page-1/#comment-67 karen Mon, 28 Jan 2008 23:57:32 +0000 http://www.darrinsday.com/?page_id=4#comment-67 I was diagnosed with Stage IV Uterine Leiomyosarcoma in March 2006. The sarcoma has metastisized to the lungs. I have had chemo twice, 2 lung surgeries, and the primary tumor in my uterus was removed successfully. Unfortunately, the chemo and surgeries have only given me short periods of having clean lungs. I am currently involved in a clinical trial infusion with the goal of keeping the 6 tumors in my lungs from growing...or shrinking them. After 3 months, 3 tumors have shrunk and 3 have not. My quality of life is good, although I have to use oxygen when moving at all because I become very short of breath. Thanks for letting me share. I have hope for some more time. Best wishes for Darrin I was diagnosed with Stage IV Uterine Leiomyosarcoma in March 2006. The sarcoma has metastisized to the lungs. I have had chemo twice, 2 lung surgeries, and the primary tumor in my uterus was removed successfully. Unfortunately, the chemo and surgeries have only given me short periods of having clean lungs. I am currently involved in a clinical trial infusion with the goal of keeping the 6 tumors in my lungs from growing…or shrinking them. After 3 months, 3 tumors have shrunk and 3 have not. My quality of life is good, although I have to use oxygen when moving at all because I become very short of breath. Thanks for letting me share. I have hope for some more time.
Best wishes for Darrin

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