Word in the street - which could be better for low grade Caelyx or weekly taxol

[Agility]

Hi

I’m being screened for LOGS. My original tumour was NF1 positive so it suggests a MEK inhibitor response.

My question, if I get the control arm, do I go for:

weekly taxol - I only got a slight response with taxol/ carbo and recurred within e-6 months after finishing treatment. But this will be weekly so maybe I get a different effect.

Caelyx - is this more toxic although I keep my hair

Has anyone heard if one seems to work better or the same. My current centre, Christie’s, usually give taxol but don’t seem to have a reason why in terms of response.

BTW - I could have tamoxifen. I’m keen. But letrozole didn’t hold me. But it could work and if it didn’t, I would move onto MEK inhibitor arm of trial

Any thoughts? thanks

[CharlotteSo_UK]

My Mum has low grade but the histologists couldnt decide if she has low grade or not which is why she was not eligible for LOGS trial. When Mum was first diagnosed, she had 6 months of Taxol/Carbo followed by 3 of Caelyx. There was a better response on Caelyx but our local hospital referred Mum to Marsden as the response wasn't good enough. This was seven years ago and at that time, the chemo was given once every three weeks. She then moved on to Letrozole which kept it stable for 5 years. Moved on to Tamoxifen which kept some sites stable, but others not!

Mum is now being tested for eligibility to join a new MEK trial which is more targetted at her tumour mutation.

Best of luck for the trial x

[Agility in reply to CharlotteSo_UK]

Thank you. I think I prefer caelyx to taxol. Hearing your mum had some response is good. I feel though it’s typical of low grade. We respond but not enough. . I will ask specialist in Edinburgh and see if anyone else has any experience of these regimes. Fingers crossed that your mum gets in the MEk inhibitor trial this time.

[Agility in reply to CharlotteSo_UK]

Just thought. If your mum isn’t eligible for the trial. She could ask how she might access it off trial. I know sometimes drug companies are persuaded to give some to oncologists who fight for their patients to have it And can prescribe it off licence.

[CharlotteSo_UK in reply to Agility]

We have mums appointment on the third. They said there is no reason to suggest she won't be eligible so shall see. Just found out though that part of the trial is FEC. We thought it was another tablet form drug but now know it's chemo. Mum not looking forward to that, obviously! Xx

[ScardyCat40]

Hi Agility,

I am currently on the LOGS trial at the same hospital as you. I have been on the trial since February this year and I am on the trial drug.

I too tried letrozole in January 2015 for about 3 months but it did not work for me my CA125 climbed to 1700.

Then April 2015 I started weekly taxol. It was my choice to have taxol I knew it was being used in some of the mek inhibitor trials and I had never had a fantastic response to carboplatin.

Weekly taxol did bring my CA125 down to 233 I had some shrinkage in my sites and my breathing improved. I did have all the usual side effects on taxol. I was able to cope up to about 10 weeks then I had a bit of a brake so I could do some things I wanted to do.

Sadly 3 months after finishing treatments my CA125 started to go up but I managed to stay off treatment for a year but by the end I was experiencing quite a bit of back ache and digestive discomfort.

Whatever chemo treatment you go with if it doesn’t work you would be able to transfer onto the drug arm of the trial.

[Agility]

Hi. Thanks for taking the time to reply. I was aware that you were on the trial but didn’t want to ask directly - you never know where people are at and whether your timing is off. I know it’s not been easy.

You have made me feel much more positive about taxol but the stand out moment is that you managed a year of treatment. That has really buoyed me.

I suppose, I wanted tamoxifen so it wouldn’t work and I could transfer to MEK inhibitor avoiding any chemo.....

Take care and thank you again for responding x