endometrial stromal sarcoma

Hello to you,

In February, 2008, I was diagnosed following emergency surgery with endometrial stromal sarcoma.  That in itself is extremely rare, but to make things worse, it grew out of some endometriosis left behind following my hysterectomy 30 years ago.  Normally this cancer grows in the lining of the uterus.  My doctor has never seen this cancer before except in Medical School and has diligently researched to find any help in treating it.  Unfortunately, it's so rare that there is no treatment protocol for it and no studies on treatment.  Following surgery, I had 2 rounds of chemo, but a piece of cancer missed during surgery grew!  They discontinued chemo, and put me through 29 radiation treatments.  It went well, and with the exception of a few minor side effects I am feeling well. I will find out this week if I will be having another surgery to remove the tumor left behind. 

 I would love to find some friends who have the same kind of cancer as I.  I feel like the 'LONE STRANGER" out here there are so few of us.  I'd like to share experiences with others.  I have so little info about all this because my doctor doesn't know anything either.  Help!  Furbie's Mom 

Hi Furbie's Mom,

This is certainly a tough battle to fight, but you are not the Lone Stranger, or the only soldier.  Check out this support group:

 http://www.ess-sarcoma.com/

Their web site is new - probably a lot they have to learn about using the internet for support, but I'm willing to bet that individuals in the group AREN'T new to fighting this cancer, and have a lot of valuable information and advise for you.

Also, take a look at their "lessons from geese" page:

 http://www.ess-sarcoma.com/ documents/lessons_from_geese.pdf

Certainly a philosophy that all cancer patients, survivors, and their friends and families should embrace!!!  (medical people, too!!!)

One other thing:  please do not overlook CAM (complementary and alternative medicines, also known as complementary and/or alternative therapies) in your quest for treatment.  I would never advise anyone to forsake conventional therapy and go with alternative therapy only, unless they had pretty much already made up their mind to do so, or if alternative therapy were their only remaining hope.  I do, however, hugely advocate using herbs, supplements, and natural foods to fight cancer, especially in conjunction with conventional therapy.  Mother Earth has an abundance of wonderful healing substances, many of which can either inhibit or actually kill cancer.  I think if a natural anti-cancer regimen were at least a part of every cancer patient's arsenal against the disease, we would see a lot more people dancing victory jigs and bragging about having kicked this beast in the butt!!!

There certainly is a lot of information on the internet about CAM, but unfortunately not a whole lot that pertains specifically to ESS and is understandable in layman's terms.  This site does give some very reasonable recommendations in terms of supplements that would at least get you started in fighting this thing while the docs are figuring out what they should do:

http://www.sarcomacancer.org/adj_treat

(If you scroll down, you will find a list of excellent natural cancer fighters.) 

Perhaps someone at the ess-sarcoma group can give you some specific resources on what natural remedies they have found to be effective for this particular cancer. I also recommend that you try to find a naturopathic oncologist or naturopathic nutritionist, to give you some professional advise on how to use natural remedies to get the drop on this cancer. Even if you had to pay out of pocket and/or travel quite a ways for just one visit, would well be worth the effort and expense to get a very pointed start at this rather than trial and error.

Last but not least, take a look at this site:

http://www.cancertutor.com/Other02/CheckFast.html

Should conventional medicine come up empty as to treatment for you, cancer tutor might well become your most valuable reference.  this page talks about stage IV treatment - do not let that scare you.   I am referring you directly to this page because I want you to see that there are a LOT of alternatives out there when/if conventional treatment fails.  Some of these therapies (e.g. diets: the brandt grape diet or the Budwig diet) can also be used at the same time as conventional treatment - kind of like giving cancer a double whammy.  Perhaps at least becoming familiar with this site will give you an added advantage as you journey down the road.  Webster Kehr is an extremely knowledgable authority on natural treatment, very devoted to presenting the very best information out there on ways to kick this thing in the butt!!

I hope this information helps, and I wish you much success in overcoming this disease.

Sincerely,

Tre

Update from Furbie's Mom:

Following a new CT scan, and a visit to the Oncologist, I found that my cancer has metastasized into my lungs and liver.  No good news here!  Has anyone had similar experiences as mine, and what has been done?  I begin 6 rounds of chemo, 4 days / week the first week for 6 1/2 - 8 hrs./da., Ifosfamide, cisplatin, Faslodex, Avastin, and Mesna.  There's talk about doubling with another mix of chemo on alternate months.  Heavy stuff!!!!!!!!!  Isn't there anyone out there who has been in my shoes??  I've only had one response so far.

On 8/17/2008 trehouse60 wrote:

Hi Furbie's Mom,

This is certainly a tough battle to fight, but you are not the Lone Stranger, or the only soldier.  Check out this support group:

 http://www.ess-sarcoma.com/ " target="_blank" rel="nofollow">http://www.ess-sarcoma.com/

Their web site is new - probably a lot they have to learn about using the internet for support, but I'm willing to bet that individuals in the group AREN'T new to fighting this cancer, and have a lot of valuable information and advise for you.

Also, take a look at their "lessons from geese" page:

 http://www.ess-sarcoma.com/ " target="_blank" rel="nofollow">http://www.ess-sarcoma.com/ documents/lessons_from_geese.pdf

Certainly a philosophy that all cancer patients, survivors, and their friends and families should embrace!!!  (medical people, too!!!)

One other thing:  please do not overlook CAM (complementary and alternative medicines, also known as complementary and/or alternative therapies) in your quest for treatment.  I would never advise anyone to forsake conventional therapy and go with alternative therapy only, unless they had pretty much already made up their mind to do so, or if alternative therapy were their only remaining hope.  I do, however, hugely advocate using herbs, supplements, and natural foods to fight cancer, especially in conjunction with conventional therapy.  Mother Earth has an abundance of wonderful healing substances, many of which can either inhibit or actually kill cancer.  I think if a natural anti-cancer regimen were at least a part of every cancer patient's arsenal against the disease, we would see a lot more people dancing victory jigs and bragging about having kicked this beast in the butt!!!

There certainly is a lot of information on the internet about CAM, but unfortunately not a whole lot that pertains specifically to ESS and is understandable in layman's terms.  This site does give some very reasonable recommendations in terms of supplements that would at least get you started in fighting this thing while the docs are figuring out what they should do:

http://www.sarcomacancer.org/adj_treat

(If you scroll down, you will find a list of excellent natural cancer fighters.) 

Perhaps someone at the ess-sarcoma group can give you some specific resources on what natural remedies they have found to be effective for this particular cancer. I also recommend that you try to find a naturopathic oncologist or naturopathic nutritionist, to give you some professional advise on how to use natural remedies to get the drop on this cancer. Even if you had to pay out of pocket and/or travel quite a ways for just one visit, would well be worth the effort and expense to get a very pointed start at this rather than trial and error.

Last but not least, take a look at this site:

http://www.cancertutor.com/Other02/CheckFast.html

Should conventional medicine come up empty as to treatment for you, cancer tutor might well become your most valuable reference.  this page talks about stage IV treatment - do not let that scare you.   I am referring you directly to this page because I want you to see that there are a LOT of alternatives out there when/if conventional treatment fails.  Some of these therapies (e.g. diets: the brandt grape diet or the Budwig diet) can also be used at the same time as conventional treatment - kind of like giving cancer a double whammy.  Perhaps at least becoming familiar with this site will give you an added advantage as you journey down the road.  Webster Kehr is an extremely knowledgable authority on natural treatment, very devoted to presenting the very best information out there on ways to kick this thing in the butt!!

I hope this information helps, and I wish you much success in overcoming this disease.

Sincerely,

Tre

 

Thank you so much for your info.  Because my cancer is so rare, there may not be anyone out there.  Please read my update above, and you will see what I mean,  The darn thing isn't even acting like a slow growing sarcoma!  My doctor is a wonderful Christian man, and so is his staff, so I am in the best situation possible. 

On 8/16/2008 furbiesmom wrote:

Hello to you,

In February, 2008, I was diagnosed following emergency surgery with endometrial stromal sarcoma.  That in itself is extremely rare, but to make things worse, it grew out of some endometriosis left behind following my hysterectomy 30 years ago.  Normally this cancer grows in the lining of the uterus.  My doctor has never seen this cancer before except in Medical School and has diligently researched to find any help in treating it.  Unfortunately, it's so rare that there is no treatment protocol for it and no studies on treatment.  Following surgery, I had 2 rounds of chemo, but a piece of cancer missed during surgery grew!  They discontinued chemo, and put me through 29 radiation treatments.  It went well, and with the exception of a few minor side effects I am feeling well. I will find out this week if I will be having another surgery to remove the tumor left behind. 

 I would love to find some friends who have the same kind of cancer as I.  I feel like the 'LONE STRANGER" out here there are so few of us.  I'd like to share experiences with others.  I have so little info about all this because my doctor doesn't know anything either.  Help!  Furbie's Mom 

This is the address for a very informative, caring and supportive group of women who, like you, have ESS.

Endometrialstromalsarcoma@yahoogroups.com

 Judy S 

Dear Furbiesmom,

I just found your message and was relieved to have someone to talk to about my cancer.  I, too, have metastatic Stage IV ESS.  I found out I had cancer in November 2007, but it was not confirmed as ESS until March.  I have an excellent oncologist named Glenn Bigsby, IV at Florida Cancer Institute in Winter Park, Florida, near Orlando.  The whole hospital is Christian-based.  I have had two major surgeries.  I won't go into too much detail, but my abdomen was full of cancer, including my colon.

 The sarcoma spread into the thoracic region of my chest and started out as a 4.7 cm malignant tumor underneath my heart, between my lungs, and up against my spine. It is inoperable because of its location. My onco started me on Megace (generic name: Megestrol Acetate) in December prior to my second surgery.  The chest tumor reduced from December to June to 3.7cm.  I was so happy.  Another chest scan on 9/17 revealed no changes, but they called it, "stable."  I guess that is okay.  An abdominal scan revealed two enlarged lymph nodes.  Again, nothing to worry about now.  But we do worry, don't we? 

 I have been told by my onco that low-grade ESS does NOT respond to chemo or radiation.  I have researched this extensively.  The most recent articles confirm this.  Have you discussed this with your onco?  Please respond to me because if there is another treatment, I would like to know what it is.  I pray that your lungs and liver WILL respond to the treatment your onco has recommended. 

 I have tried repeatedly over the past several months to sign up for the yahoo group, but it doesn't work for me. 

 The first six months after diagnosis are the worst.  After a while, you will be able to laugh again, even though it may seem impossible now.  You have to try to stay positive for your family.  I was quite a wreck in the beginning, but now I can see that my husband and children and I are settling into a more normal routine. 

 I look forward to hearing back from you.

Bev

Dear Christy, Furbiesmom, trehouse60, catslave, Judy, and trishpm,

 How is everyone doing?  I would like to know how you are responding to your various treatments.  Are chemo and radiation effective on some of you against low-grade ESS?  Does anyone have any positive or uplifting new information about metastatic Stage IV disease?  I take everything day by day and try not to think too far ahead, although this is very hard.  Is there any way to get all of the ESS cancer-compass entries to come up together?  Right now, I have to keep going back to different pages to read them all.  For instance, entries 1-2, then on another page 1-7. Thanks to all of you on all of the pages for your help and encouragement. I pray that all of you are feeling well.

 God bless,

Bev

Bev,

Thanks so much for your email.  I sent my first and second ones and ended up in the hospital for more emergency surgery following my radiation.  I developed scar tissue in my small intestine and had a blockage. A resection and bypass followed, and I am still trying to get over the side effects of all that.  I spent 3 weeks in the hospital on that adventure. 

None of the chemo or radiation had done a thing.  My cancer just spread to the lungs and liver.  My oncologist has been in touch with the stromal sarcoma center at MD Anderson in Houston.  They were full, and couldn't take me on, but they did suggest trying Gemsar on a once a week for 3 weeks and one week off protocol.  I just finished the first round, and start again in 2 weeks.  A CAT scan will follow that one, and we'll see what, if anything, has beeen accomplished.  The doctor at MD Anderson said they had had "some luck" with this protocol.

Please don't get discouraged by my experiences, because my case isn't normal.  Rare is the word!  Furbie's MOM