Survival with leiomyosarcoma

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Survival with leiomyosarcoma

by Kbookcat8 on Thu Mar 22, 2007 12:00 AM

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I was diagnosed last August with Stage IV Leiomyosarcoma.  I started chemotherapy last Sept. and my CT scans have been pretty positive. There has been a lot of tumor reduction as well as a great deal of necrosis (dead cancer cells).  However, my oncologist tells me that the longest anyone with this disease and stage has survived is three years.  Does anyone know of any instances of a longer survival with this.  Also, I am thinking of exploring other cancer centers that have more experience dealing with this rare type of cancer. Does anyone know personally of places that may offer more than gemzar/taxotere in treating this? Thank you!  Karen

RE: Survival with leiomyosarcoma

by Quakyone on Wed Apr 18, 2007 12:00 AM

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My mom has been diag. w/ same.I'd like to know any input you find on this ,also. Please hang in there, 'cause my sis-in-law plays bingo w/ lady who's had it several yrs. like 6 or 7& still playing bingo.May the power above be w/ you,& help you.

RE: Survival with leiomyosarcoma

by Kbookcat8 on Thu Apr 19, 2007 12:00 AM

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On 4/18/2007 Quakyone wrote:

My mom has been diag. w/ same.I'd like to know any input you find on this ,also. Please hang in there, 'cause my sis-in-law plays bingo w/ lady who's had it several yrs. like 6 or 7& still playing bingo.May the power above be w/ you,& help you.


Hi! Thanks for the reply. Do you know if the woman who plays bingo has the lms that started in her uterus? I had had fibroid tumors a few years back, and the cancer started at that sight.  There seems to be a connection being discovered that a small percentage of women with fibroids will develop this.  Do you know what kind of treatment she got that's kept her alive for 6-7 years?  I've taken a break from the chemo for a couple of months and my oncologist has me taking Femara, an estrogen inhibitor, and this coming week I'm starting on Avastin. I guess they're having good results with this, and I also have a lot of fluid build-up in my abdomen that this is supposed to help with also.  In addition, I've been taking complementary things to help.  These are all natural, well-proven things, but the FDA doesn't want us to know about them!  I take Paw Paw Cell-Reg, Maitake Gold Compound, Liquid Zeolite, and I'm going to start taking another mushroom extract, Coriolus Versicolor. These are all things that have been used for a long time in other countries and are gaining in this country as people find out about them. In 4 months of chemo I've been able to get rid of tumors in my lung, breast, liver, and abdomen.  All I have left is a little bit in my uterus and in my spine.  I'm determined to beat this, in spite of "statistics"!  Statistics are based only on use of chemo!  I hope this helps, and I'll be looking forward to hearing more about the survivor you know!  I'll pray for your mom, too.  Karen :)

RE: Survival with leiomyosarcoma

by Quakyone on Fri Apr 20, 2007 12:00 AM

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On 4/19/2007 Kbookcat8 wrote:

 

On 4/18/2007 Quakyone wrote:

My mom has been diag. w/ same.I'd like to know any input you find on this ,also. Please hang in there, 'cause my sis-in-law plays bingo w/ lady who's had it several yrs. like 6 or 7& still playing bingo.May the power above be w/ you,& help you.


Hi! Thanks for the reply. Do you know if the woman who plays bingo has the lms that started in her uterus? I had had fibroid tumors a few years back, and the cancer started at that sight.  There seems to be a connection being discovered that a small percentage of women with fibroids will develop this.  Do you know what kind of treatment she got that's kept her alive for 6-7 years?  I've taken a break from the chemo for a couple of months and my oncologist has me taking Femara, an estrogen inhibitor, and this coming week I'm starting on Avastin. I guess they're having good results with this, and I also have a lot of fluid build-up in my abdomen that this is supposed to help with also.  In addition, I've been taking complementary things to help.  These are all natural, well-proven things, but the FDA doesn't want us to know about them!  I take Paw Paw Cell-Reg, Maitake Gold Compound, Liquid Zeolite, and I'm going to start taking another mushroom extract, Coriolus Versicolor. These are all things that have been used for a long time in other countries and are gaining in this country as people find out about them. In 4 months of chemo I've been able to get rid of tumors in my lung, breast, liver, and abdomen.  All I have left is a little bit in my uterus and in my spine.  I'm determined to beat this, in spite of "statistics"!  Statistics are based only on use of chemo!  I hope this helps, and I'll be looking forward to hearing more about the survivor you know!  I'll pray for your mom, too.  Karen :)

hi, i believe it is ifosamide/paclitaxel combo that she recv'd .There is also hormone therapy-such as Megace,& Provera.Not sure of these others,but they are also available:Doxorubicin, Cisplatin,and Gemcitabine. also heard of Eubericin.all these ,i found in studies from clinics,& universities on the web.

 

RE: Survival with leiomyosarcoma

by Lisamap on Wed Jun 20, 2007 12:00 AM

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Karen and others:  I hope this e-mail finds you well.  I have been diagnosed with Leiomyosarcoma, which like yours Karen, orginated from uterine fibroids.  My dr's tell me its stage III, but I will have a full hysterectomy tomorrow and staging will be complete after that (I fear stage 4 because of some bowel involvement).  I have two little girls (aged 1 and 3) and I cannot accept the statistics associated with this disease.  I'm not sure at this point what my dr's will propose for me, but  I am looking at using complementary and alternative meds as well.  Karen, how did you decide what meds to take (Paw Paw etc)?  I've been looking at co-Q-10, and am researching others...there is so much out there, its hard to know where to start.  Also, are you being treated at a sarcoma center? I'm trying to contact a dr at one of these centers today for a second opinion. I'm desparate and am looking for help from anyone with this disease.

Thanks and Love and Prayers to everyone!
Lisa

On 4/19/2007 Kbookcat8 wrote:

 

On 4/18/2007 Quakyone wrote:

My mom has been diag. w/ same.I'd like to know any input you find on this ,also. Please hang in there, 'cause my sis-in-law plays bingo w/ lady who's had it several yrs. like 6 or 7& still playing bingo.May the power above be w/ you,& help you.


Hi! Thanks for the reply. Do you know if the woman who plays bingo has the lms that started in her uterus? I had had fibroid tumors a few years back, and the cancer started at that sight.  There seems to be a connection being discovered that a small percentage of women with fibroids will develop this.  Do you know what kind of treatment she got that's kept her alive for 6-7 years?  I've taken a break from the chemo for a couple of months and my oncologist has me taking Femara, an estrogen inhibitor, and this coming week I'm starting on Avastin. I guess they're having good results with this, and I also have a lot of fluid build-up in my abdomen that this is supposed to help with also.  In addition, I've been taking complementary things to help.  These are all natural, well-proven things, but the FDA doesn't want us to know about them!  I take Paw Paw Cell-Reg, Maitake Gold Compound, Liquid Zeolite, and I'm going to start taking another mushroom extract, Coriolus Versicolor. These are all things that have been used for a long time in other countries and are gaining in this country as people find out about them. In 4 months of chemo I've been able to get rid of tumors in my lung, breast, liver, and abdomen.  All I have left is a little bit in my uterus and in my spine.  I'm determined to beat this, in spite of "statistics"!  Statistics are based only on use of chemo!  I hope this helps, and I'll be looking forward to hearing more about the survivor you know!  I'll pray for your mom, too.  Karen :)


 

RE: Survival with leiomyosarcoma

by Anayse on Sun Jun 24, 2007 12:00 AM

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For Karen and others, there is a very powerful nutritional supplement named Biobran which is considered at the moment one of the best choice for cancer patients.It's made from breaking down rice bran with enzymes from the Shitake mushroom, and it has been shown that Biobran MGN-3 can stimulate sluggish NK cell activity by as much as 300% or more. Read also about Pau d'Arco tea, Reishi, Cordiolus, Curcumin and Cordiceps. These mushrooms have powerful anticancer properties. Best wishes for all of you.

RE: Survival with leiomyosarcoma

by Witchdoctor on Sun Jun 24, 2007 12:00 AM

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You say stage IV, what made it stage IV??  Where is the cancer located?

I assume you are only getting chemo?  Was Surgery done?  Need a bit more information to make specific recommendations.  What Grade was the tumor I II or III?

RE: Survival with leiomyosarcoma

by Lisamap on Tue Jul 03, 2007 12:00 AM

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Stage IV because there are small LMS tumors in the lining of the bowel...also adhesions on the abdominal wall. Scheduled to start chemo (gemzar and toxatere in 2 weeks), but have an appt at Memorial Sloan-Kettering for a second opinion.  I'm interested in finding out about a national trial using ET-734 (Yondelis).  Its a non-chemo-target agent that has been showing some better responses with LMS.

 Any advice/guidance you can provide is appreciated.  In the interim, I'm thinking positive, taking Essiac and co-Q-10, and doing a lot of praying.

 

Love and prayers

Lisa

RE: Survival with leiomyosarcoma

by Lisamap on Tue Jul 03, 2007 12:00 AM

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Sorry, some additional information to answer your questions.  LMS is uterine in nature (hysterectomy on June 21).  Tumor was identified as high grade based on a high mitotic index (dr says that prognosis is not good).

RE: Survival with leiomyosarcoma

by Sharon_in_San_Francisco on Thu Sep 06, 2007 12:00 AM

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If you have leiomyosarcoma (LMS) please join the LMS on-line groups!

http://www.lmsdr.org/support.php

You will get much more info there.

 

S.

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