Answer to two questions asked of me in private.

[GwenHP]

I recently had a private conversation in which a couple of questions were asked that I thought might be beneficial for me to post the answers here.

1) I was asked about treatment options. The NCCN guidelines are used here in the US and are a really good resource for thinking about treatment options. You can find a patient version of the guidelines in the pdf file in the following link: nccn.org/patients/guideline...

2) Genetic testing is recommended for any woman diagnosed with ovarian cancer. BRCA 1 and 2 are the most thought of genes when we think of genetic testing and ovarian cancer. However, there are now some tests that examine genes above and beyond the BRCA genes. The following link is an example: genedx.com/wp-content/uploa...

NIH (National Institutes of Health - US) has a website with a lot of good information about genetics and ovarian cancer. Here is the link: ghr.nlm.nih.gov/condition/o...

Hope this helps.

Gwen

[Tesla_7US]

Excellent info, thank you for posting.

[Jeanean]

Thank you for this info. Very interesting.

[sticky3006]

Hello GwenHP,

I just wondered what your treatment regime for OC has been? You seem to be a long term survivor (as do a lot of American women). Is this because your treatment may differ slightly to the UK although you appear to have the same guidelines or maybe you take certain supplements etc ? Looking at statistics the UK seems to still lag behind some other countries for OC survival,

many thanks

[GwenHP in reply to sticky3006]

Dx 2/2005

Optimally debunk with some small spots left that were visible (today the go for none )

6 cycles carbo/taxol (1x every three weeks, not the dose dense that is often done today)

12 cycles lower dose taxol every 4 weeks as maintenance (I had something suspicious on my lung though my ca125 was ~10)

About 1 1/2 year NED

Showed indications of recurrence in winter 07/08 but they couldn’t confirm on CT or PET scan.

Tried tamoxifen for two months (some women have stable disease when given tamoxifen). CA125 continued to rise

In April 2008 CT scan showed where cancer was - localized deep in my pelvis

May 2008 had a second debunking surgery - this time nothing visible is left

6 cycles carbo/gemzar - last chemo Nov 2008

Summer of 2009 participated in vaccine trial for women in their second or third remission - NYESO1 + montinide

No special diets or supplements

[GwenHP in reply to GwenHP]

Having said all of that we don’t know why I did so well and others have not.

[sticky3006]

Thank you for the information. Good to know if other countries differ in their treatments. Take care.