First time

[debwood32]

Hi this is the first time I have posted and am quite new to site, I was diagnosed with stage 3c June 13 and had carbo/taxol avastin but unfortunately due to side effects they with drew avastin after only 1 treatment then due to further side effects they with drew taxol. I have also been given the news I am BRCA2 positive. Now after 10 months clear I have a reoccurrence and was wondering if anyone knows anything about treatment, I was started on tamoxifen but have agreed to clinical trials therefore have stopped the tamoxifen and am waiting for appointment to go to freeman hospital at Newcastle does anyone know anything about the trials they are doing at present.

[Whippit]

Welcome Debwood to our friendship circle. I know you'll get loads of replies and ideas and this forum is going to be a great support. I have been a member of Ovacome's Health Unlocked forum for over 3 1/2 years and can say it's been a lifeline and I've made some of the closest friends ever via this site. There is also a nurse-led phone line at 0845 371 0554. They're really knowledgeable and are there to provide information and support.

I think the first thing is not to be upset too much that this first line of chemo didn't go so well and you had to abandon the Avastin and then the Taxol due to side-effects. Each of us is different and we all respond differently to the various treatments. This first one didn't work for you on a number of levels. Other treatments may well be more tolerable.

The first thing that makes me nod and smile in your post is that you are treated in Newcastle. According to statistics you are in the optimum area in the UK for ovarian cancer and you have lots of opportunities there because it's a trial-intensive area.

Another hopeful point for me is that you're BRCA positive. Now this does have problems when you first discover this because you'll worry about the genetic defect that can be passed down to the next generation but there are positives too. There are more treatments available for women who are BRCA positive and many trials currently open to see how effective PARP inhibitors are. The current thinking on them is very optimistic. I have no doubt Newcastle is on the ball with this.

There's an amazing lady on this site who has the screen name SharonForce. She runs a group to support BRCA positive women and it's worth getting in touch with her group. Take a look at this website: facingourrisk.org/get-suppo.... You can also use the site to reach out to other women sharing your pathway.

Good luck with your onwards plans. I'll look forward to reading comments from other members of this site. Keep posting and let us know how you're getting on.

much love xxx Annie

[aliannie]

Hi debwood, I am having my treatment at the freeman, I had 18 weeks of carbo and placitaxel which I tolerated very well, this regime was part of the 'icon 8' trial (August - December 2012).

I had reoccurrence in July this year and am now on avastin, carbo and gemcitabine, and after having my anti sickness changed this too I can tolerate quite well. I have all three one week then the next week I just have the gem, then a week off. I have this regime till December, then after that I'm having just avastin as a maintanace till July 2015.

I wish you well and you never know I may see you at the hospital

Alison x

[debwood32 in reply to aliannie]

Hi Aliannie,

I had my surgery and previous chemo at James cook hospital at Middlesbrough which is an excellent hospital but my oncologist feels they can offer me more at Freeman. I too was offered icon 8 when first diagnosed but was too frightened to participate, but now feel I am ready to take all that is offered.

May see you at Freeman x

[SandyL]

Hi Debwood,

I'm interested to see you were treated at the James Cook Hospital in Middlesbrough. Although I've lived in Canada for 43 years, (and was treated for Stage 1V OC 15 years ago in Calgary, Alberta), before coming to Canada I lived within walking distance from the James Cook Hospital.

It warms my heart to know that women from the North East have a better chance of survival according to Annie (thanks for passing that along Annie So, it's reassuring to realize that if I had been smitten with OC when l living in England, the statistic would have been in my favour. As an aside, my mother was diagnosed and treated for colon cancer at the James Cook Hospital. She repeatedly mentioned how well she was looked after there (sadly, she passed away almost 20 ears ago). We visit Middlesbrough every two years as we still have many family members still living there: So when I pass that huge hospital complex, I'll think about my online friends who have had (or may be going through) treatments there. It makes me feel closer to you all

Yes Deb, I am sure that Freeman will have more to offer, being a larger centre with 'likely' more trial options. Good luck in your search. I hope that further treatment, wherever it takes place, will bring you remission.

Sandy.

[Tricia12]

I'm fairly new to the site, despite having had the diagnosis since May 2013.

As Annie says each of us is unique in the level and spread of our cancers and in the way we react to the drugs they give us - of which there seem fortunately to be many. I am now on my third treatment the first two not having given me any remission - shame.

You are lucky you to be in a trials area. I am willing to have a go at anything if offered.

I was tested negative for the BRCA gene. Again as Annie says a mixed blessing.

Good luck and let us know how you get on.

Pat

[thesilent1]

Hi. Welcome to the site. I too was diagnosed in June 13 with stage 3b. I managed to complete my treatment of carbo/Taxol minus Avastin as we do not get it in NI and as of August 14 my cancer has come back. I am currently on watch and wait with a further CT scan scheduled for 17 Nov. I will be interested in any replies regarding clinical trials too. Take care. Ann x

[Mounser123]

Hi . Iam brac2positive and Iam about to start a clinical trial for the Brac gene . Do u know what trial is called ? Mine is 6mpand this is my 3rd reoccurrence of stage 3c . I was diagnosed in June 2011 . I have had many negative days but try hard to stay positive . Hope u get through the trial with good results x mounser 123