Looking for other Sertoli-Leydig patients

I am 32 years old with a Sertoli-Leydig ovarian cancer.  I had emergency surgery when a cyst popped June 1, and have since gone through 4 rounds of BEP(belomycin, etopocide, cisplatin) and it did not work.  I currently just began Toxil, Carboplatin and Avastin.  After my body not responding to the initial chemo, I find it difficult to stay positive on a daily basis.  I know that this is a very rare form of ovarian cancer and I am really just looking for support/advice from anyone who has dealt with this rare form.  Thanks in advance.

Nikki

[montie]

I just wanted to respond to your plea.  Although I don't know what is going on with my current situation, (MRI today) so I don't know about the type of cancer you have been diagnosed with, I just wanted tell you that I will be praying for you and I hope that you can find someone who can relate to what you are going through.  Stay on this site, it helps to talk to other people going through the same kinds of things.

God bless.

[Deneen]

My daughter was dx with a Sertoli-Leydig Cell Tumor.  At the age of 14.  There is a lot of medical advancements in this type of tumor since losing my daughter in 2001.  To read our story you can go to www.caringbridge.org/page/tiffanie.  Where do you live?  My thoughts and prayers are with you and your family.  There are a great group of people at ovca cancer net fighting your same battle....  If there is anything I can do for you please e-mail me....

[AnotherKatie]

Thank you for posting here to Nikki, and posting the Caring Bridge site link.  I am so sorry you lost your beautiful daughter.  She was a gorgeous person inside and out, you can tell from reading about her!  I am sure that your life will never, ever be the same.  But I hope that you will find more peace, someday.  The poems you wrote touched me very deeply.  We just don't expect to have these things happen in our lives or in our children's lives...
Bless you,
Katie

[Deneen]

Thanks Katie, it means a lot to me to be able to help someone else.  I too was dx with a Granulosa Cell Tumor in 1985.  It was found during a c-section when delivering Tiffanie....  Although not a doctor I have researched this type of tumor a great deal and can speak to Tiffanie's doctor to find the best place for her to go....  Love and Prayers to all of you....
Deneen

[Corely]

Hi, IM 28 years old and on Oct. 25 had a large 3lbs tumor on my left ovary removed.  The doc told me it was a poorly differentiated sertoli-leydig tumor. I was in the hosp for 3 weeks with this.  Now im faced with the decision if i want to have chemo or not.  The doctor said since its rare that he has been talking to docs all over to see what they think.  His opinion is to wait and see.  Me? I dont know.  I could have chemo and it comes back anyways, I could leave it and not have chemo and it can either come back or not.  It might just all be over and done with. who knows.. Its hard though, I dont know what to do.. Its frustrating.. scary...  Anyone have any input?  Thoughts? Anything would be greatly appreciated..