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Rare ovarian sarcoma... Am I alone on this

heathercurry's picture
heathercurry
Posts: 7
Joined: Aug 2008

I was diganosed with a type of ovarian sarcoma May 31 of 2008. My doctors have all told me that this is very rare.. I have actually heard that so many times, the word rare has become a trigger to me. I was told my my previous doctors that they honestly did not knwo how to treat this or what the appropriate next step was because there have only been like 5 cases in the world and most of the women were in ther 60's. As a 23 year old woman it is hard for me to believe that no one else had had this or knows what to do next. Has anyone else heard of this before or had an experience with this type of cancer before?? I am reaching out... My previous doctors told me there was really no data on this cancer and that they were using goggle and the internet to find resources... Any advice or knowledge would be so appreciated.

rrqueen
Posts: 1
Joined: Mar 2008

Hi,

I was diagnosed with endometrial sarcoma during a simple vaginal hysterectomy. I called M.D. Anderson canser (always misspell so it gets no respect) center in Houston Tx. They treated me for stage 3 stage 4 sarcoma and I've been canser free for a year and 6 mos.
Best wishes in journey to recovery,

M.

dd
Posts: 3
Joined: Feb 2009

What kind of treatment was given to you? I have something similiar to what you had, so glad you are doing well....hope to hear from you
dd

Amysmel
Posts: 1
Joined: Feb 2009

Hi heathercurry. I just came across your e-mail. Are you still wondering about Ovarian Sarcoma? My mom had it and I might be able to offer some insights. Please let me know if you still need information.

hope4her
Posts: 1
Joined: Aug 2011

I ran across your post and I am reaching out for help. I'm new to the cancer board my BFF has been recently diagnosed. The tumor was the size of a football attached the colon. They removed part of her colon and she has a temporary ostomy bag. They did a complete hystorectomy........15 day hospital stay now at home and starting chemotherapy on Friday. Any guidance, websites would be greatly appreciated.

Marisa Castelo
Posts: 3
Joined: Aug 2011

It sounds similar.
I had radical hysterectomy and radiation. 2 localized recurrences, another radiation after surgery.
Now I am on Sutent which is a targeted chemo drug, you take orally.
I know it is typically tried with GIST, and they are experimenting with me, as I has one out of three markers for gist, which is a gastro intestinal stromal sarcoma.
Not sure if this helps at all. But my thoughts are with you.
Marisa

pjb53
Posts: 1
Joined: Oct 2011

I am 57 and was diagnosed with ovarian carcinoma-sarcoma in July 2009. Had a complete H......, followed by both chemo and radiation. Six months later I had a blockage and more surgery to remove & resect my colon. Another 5 months later I had a reoccurrence and more chemo. In April 2011, I was diagnosed with my third cancer in my kidney and abdomen. I am now going through chemo again as my doctor felt I was too weak for a 4th surgery. I have my 4th monthly chemo tomorrow. I also had 3 CT scans earlier this week to check the status of my tumors. Spread????

want_to_survive
Posts: 8
Joined: Sep 2015

My mother 51 years of age is diagnosed with mmmt ovarian same as yours but her stage is 3c. She has been optimally debulked 3 weeks back and will start with chemo sessions from next week. after reading your post im really worried can u tell me what meds they treated u with? what were the side effects?

me888
Posts: 1
Joined: Sep 2009

Hi, my cousin is 24 and was diagnosed with rare ovarian sarcoma, angiosacroma?.
I am really trying to find more info on this extremely rare cancer. Are you still looking for more information on this cancer? Anyone else who knows of any treatments, or who went through this? Thank you for all your help!

Barb N
Posts: 1
Joined: Mar 2012

It is Mar. 20, 2012 and I just read your 2008 post so I hope you are doing OK. My mom and grandmother both had ovarian sarcomas. My mom was treated by a fantastic doctor at the Univ. of VA Medical Center named Dr. Peyton Taylor. Originally diagnosed as having only 6 months life expectancy, she lived with the sarcoma for 14 years due to Dr. Taylor's expertise. Strongly recommend anyone with an ovarian sarcoma contact him.

RoseyR
Posts: 471
Joined: Feb 2011

As there are several kinds of sarcoma, do you know which kind your mother and grandmother had? Was it stromal sarcoma?
Or MMMT (Mixed Mullerian--also known as "carcinosarcoma")

Best,
Rosey

shannygold
Posts: 1
Joined: Jun 2012

My Mom was diagnosed in May 2011 stage 3C OVCA with MMMT. she had six rounds of chemo (Carbo/taxotere), optimal debulking, six rounds of cisplatin/taxol and she recurred within a month. She was debulked again and MD said this is a "sarcoma" but we are waiting on path to start new chemo. Any one have any other successful chemo protocols?

pengelhard1
Posts: 4
Joined: Nov 2014

Hello,  I am just getting ready to do a study on a vaccine for sarcomas and ovarian cancer.  It is list on ClinicalTrials.gov. They are just recruiting now.

 

Pat

 

pengelhard1
Posts: 4
Joined: Nov 2014

Hello if you are still on this discussion board would love to chat with you about your treatments and such. I have just had first re-occurence after chemo and have not found anyone with a similarly diagnosed cancer.

 

Pat

apoohneicie's picture
apoohneicie
Posts: 6
Joined: Oct 2014

Hi! I had stage IV uterine carcinosarcoma. It's not exactly the same, but pretty close. If you want to talk, let me know! 

Much love, 

April

Nori28
Posts: 1
Joined: Mar 2015

my mother was recently diagnosed with uterine sarcoma. I'm devastated

Ilda28
Posts: 8
Joined: Apr 2015

I am sorry to bother you and I hope you are doing fine. I would like to know what kind of treatments you had. My mother was recently diagnosed and I would like to know as much as I can.

 

Thank you

helris
Posts: 7
Joined: May 2015

This message was meant ot be to Pengelhard1

 

I thought I answered to you, I'd be ineterested in exchanging experiences and thoughts

We have similr disease and apparently we have had it  about same length of time.

 

I just do not know how this kind of media works.

 

All the best,

Helmi

want_to_survive
Posts: 8
Joined: Sep 2015

My mother has same as yours but shes recently being debulked chemo starts next week what meds were u treated with earlier? in how much time did it reoccur? What stage is urs? Were u given radiation as well?

helris
Posts: 7
Joined: May 2015



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I run across this discussion when googling about carcinosarcoma

 I am 63-years old women,  was operated in December 2014,   and underwent a complete hysterectomy + lymphatic nodes, omentum and appendix.  The final diagnosis was ovarian tubule carcinosarcoma, stage IIIa.

 Has anyone of you been treated with bevasitsumabi (trade name Avastin)? It is not  sytostatic medicin, but rather a biological medicine and its effect is based on a different mechanism than that of the cytostates

I wrote about my experiences and details of the treatment in my own space

 


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fisherwoman123
Posts: 1
Joined: Sep 2015

My sister had emergency hysterecoctomy with removal of one ovary in July> Diagnosed w rhabdomyosarcoma, late stage 3. We have been told she is not a candidate for chemo/radiation due to staging and complication from diabetes. She has had several foot surgeries. So very frustrating to think she has no option but to sit and die. 

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