Low grade OC ladies

[Tulips66]

I just came across an article in the Guardian Newspaper & even though I was diagnosed with high grade OC myself, I just thought in case all the ladies who have been diagnosed with low grade OC haven't seen the article they would be very interested to read it. It sounds very positive

[Realistic]

This is very interesting and actually says for advanced ovarian cancer l am like you serious grade 3 but hopefully it just might help us all ,thank you so much for sharing. I will try anything for a cure and live in hope. Sending love SheilaF xx

[Newbie_2020 in reply to Realistic]

Unfortunately, Sheila, it is not for High Grade Serous, or at least for now.

I had previously picked up some information about these two drugs, VS-6766 and Defactinib, as part of a clinical trial.

Although Cancer Research was advertising it for "all types" cancerresearchuk.org/about-...

the Royal Marsden, the only UK site that is running this trial, have confirmed that it is for Low Grade OC, or for now at least, but also they don't have any further information whether it will become available.

[Realistic in reply to Newbie_2020]

Thanks Liz very interesting lets stay positive and keep hoping. Keep well & keep researching sending love & hugs SheilaFxxx

[Jacky5]

That's very interesting, thanks for posting. Liz x

[Ruebacelle]

Thx. I'm hgs but still interested as eventually they get around to us. Thx for sharing hugs from paris

[CharlotteSo_UK]

I think my mum is on this trial. Her tumour has shrunk but I can’t remember exact measurements! I think it is 62%. Mum has been on it for 3.5 years and is low grade.

Thank you for sharing x

[gwyn64 in reply to CharlotteSo_UK]

CharlotteSo_UKI am on a Trial at the Christie/Manchester called FRAME - it includes Defactinib and VS6766

Is this the Trial your mum's on. How is she managing side effects - what are they and has she had her drugs reduced - what are her drugs. Thanks. Gwen Xx

[CharlotteSo_UK in reply to gwyn64]

Hi Gwen. Yes, it’s the Frame study. Mum was I think the second lady recruited on the trial, starting in January 2018. Side effects at the start were awful, a horrendous rash, especially on her scalp, that she treated with steroid ointment. It did calm down after a few weeks although she does still have dry skin sometimes. The two other horrible side effects that she still gets are split skin on her fingers and numbness in one hand. They have not reduced her dosage. Have you the same? How are you coping? X

[gwyn64 in reply to CharlotteSo_UK]

Hi CharlotteSo_UKYour mum's doing really well and I hope she continues doing so - It's worth putting up with side effects although iimportant that the medics deal with them quickly. In retrospect my early side effects fail into insignificance to the severe body rash I had about 6/8 weeks ago - it didn't affect my face - it was incredibly itchy/scratchy - and required lots of steroid cream for my body and also needed oral steroids. It also made my hair start to fall out. I volunteered to have the medical photographer take photos of my rash. As a consequence they reduced one of my tablets - the RO one which we take twice a week only. I hope it doesn't make a diff. to my improvement. My lesions have reduced by abt. 22.5% and my CA125 is now 15. Just had a CT scan so awaiiting results. Gwen x

[Tulips66 in reply to CharlotteSo_UK]

Delighted it is working for your mum & I hope it continues to shrink her tumour even further X

[CharlotteSo_UK in reply to Tulips66]

Thank you x