Mum with low grade ovarian and limited treatment options

[CharlotteSo_UK]

Ladies,

My Mum was diagnosed nearly seven years ago now with low grade ovarian cancer. Following 9 rounds of chemo (which never worked), she was prescribed Letrozole in 2011. This stopped working late last year and Mum was prescribed Tamoxifen which initially showed positive signs of keeping the cancer stable. You can imagine our shock to hear that two tumours have grown (1cm in 3 months) whilst others have remained completely stable. We've been told our options now are chemo again or Phase 1 trial.

Has anybody used Anastrazole or Avastin? I'm wondering why we have not been given those options.

[bibs73]

I used Avastin along with initial chemo. I have also low grade. I had a good response and they believe it was more to do with the Avastin than chemo. The specialist consultant was very enthusiastic about Avastin with low grade. In fact if I reoccur I'm likely to use Avastin again as I have private health insurance.

There is also the LOGS trial.

[CharlotteSo_UK in reply to bibs73]

Thank you for your response. Mum was put forward for the LOGS trial but the pathologists could not confirm with 100% certainty that her cancer is low grade although our consultant is positive it is!

Can you only get Avastin privately? I'm wondering why we are not being offered that line of treatment.

[bibs73 in reply to CharlotteSo_UK]

You can get it on the NHS if you fulfill the criteria but because I've already received it I wouldn't be eligible again that's when the private would kick in.

Where are you?

[CharlotteSo_UK in reply to bibs73]

We go to the Marsden but live in Buckinghamshire

[bibs73 in reply to CharlotteSo_UK]

Marsden is a fabulous hospital. I was going to suggest going to a specialist centre but you are. I visited Prof Gourley in Edinburgh as he has a special interest in low grade and is leading the LOGS trial. I found him very interesting.

[CharlotteSo_UK in reply to bibs73]

It is a fabulous hospital and I'm really not complaining. Its a shock to be stable for so long then for nothing else to be available. I guess that is what has prompted my question in relation to other drugs. We were so disappointed not to be eligible for the trial. Its a complete roller coaster!

Thank you so much for your replies.

[Purple-iris]

Hi

The Ovacome help line may be able to advise you on Avastin as the guidelines changed so think it's now only available as part of firstline chemo. Seems unfair to ladies that had their firstline before it was available off trial . Love and Best wishes Kim x

[CharlotteSo_UK in reply to Purple-iris]

Thank you x

[Wigan2]

I am also low grade and was diagnosed nearly six years ago. I have heard of them using avisatan in America for low grade but I don't think much evidence is available of whether it is helpful. Has your mum looked at logs trial. It's ongoing now but not sure if still taking new patients. Are you at a large hospital that does trials.

I had similar thing happen recently one area just started to grow fast and just finished 3rd line chemo and had some shrinkage. Sx

[CharlotteSo_UK in reply to Wigan2]

Thanks for your reply. Can I ask what chemo you were given? They have suggested weekly taxol which Mum has had before with carboplatin. Mum also had Caelyx which seemed to give more of a response. Cx