My Ovacome

FRAME study - low grade OC - RAS mutation

Hi ladies,

I just wanted to share some good news if I may. I've posted before that Mum started a Phase I trial at the RM in late January, which is for a MEK and FAK inhibitor. She just had the results of her latest MRI. In all, a 48% reduction!

Charlotte x

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Hi Charlotte.. I'm so pleased with the progress your mother has made. In the context of low grade, it really is a groundbreaking result. This is wonderful. Really it is. Xxx

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Thank you. We were amazed with the results - it was so much better than we could have hoped for. One mass was 6cm in January and is now 2.9cm. And to think Mum was really not sure on whether to participate on the trial! Xx

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Give your mother a squeeze for me :) This is lovely news.

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Thank you. I’ll make sure I give her another hug (she has had a few - including from the medical team). X

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Hi Charlotte - this is super, thank you for telling us. I agree with Tina, it is ground-breaking. Please will you keep us informed, as fellow low-graders it is REALLY interesting and gives us hope. (I am also on a trial, stability for me but no reduction). Hurrah for your Mum - Nicola x

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Thank you Nicola. I wanted to share the news because as well as us being super thrilled with the results and I wanted to share with ladies who would understand, I am also aware that there are many low graders on this forum who may be interested. I also know there are not really many trials available to women with low grade.

I’m so pleased your trial is keeping you stable - I hope you are well with it?

Next scan in two months - I’ll keep you informed xx

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That is great news. I have also been on a trial but for a different MEK inhibator. I have had some shrinkage but mostly have achieved stability. However the trial drug has been affecting my heart I am now on the lowest dose not sure how much longer I will remain on the trial.

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Stability is great though! You are at the Christie aren't you? On LOGS? Mum also had tests to see if she was eligible for LOGS but the independent pathologists were undecided as to whether it is low grade. The trial Mum is on did not seem to have as strict criteria as LOGS, but the mutation was the key thing - we know (now) Mum is a BRAF/RAS mutation and this MEK is specific for that. Have you had your cells profiled?

I hope you can remain on your trial - or maybe there is something even better just around the corner!! Good luck with it. I do follow your posts so please keep us all updated. xxx

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Yes I assume they did that when they took the biopsy but have never been told the results.

I have had to take two breaks because of side effects and each time I have had a break my pleural effusion on the right has started to increase.

I am having an echocardiogram this afternoon to check how my heart is doing. They think I might not have long left on the trial. I think of all the Patients at The Christie on the trial I have had the most cycles

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I hope this afternoon goes well. Do you get to meet others on the trial too?

In terms of the profiling, they did addiitional tests for this trial which took quite a time. Something to do with the molecular structure? It might maybe be worth finding out?

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Another low grader so pleased for your mum. Please keep us informed. Did you mum have a biopsy to see if she was eligible and, if so, when and where did she have it?

Hi Scardycat,

Stable is good and I do sincerely hope you are able to stay on the trial.

Best wishes.

Gwen xx

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Hi Gwen,

Thank you! Mum is at the Royal Marsden. The process for this trial started last August when the Tamoxifen stopped working and they were keen for her to take part in trial which was more targetted to her mutation. They used a sample from a biopsy taken in 2016 (Mum was being considered for the LOGS trial). The whole process did take a while, and she only commenced taking the drug in late January. I do believe that the study is only being performed at the RM in Sutton, in conjunction with the Institute of Cancer Research. Hope this helps but happy to share any further info.

Charlotte xx

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Hi Charlotte, that is amazing news, thanks so much for sharing with us all. I am likely to be going on that trail so that news is wonderful. Do you know what the Mek inhibitor they are using is and did your mum have any side effects?

Tracey xx

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Hi Tracey. Are you at RM in Sutton? They don't actually tell you what the MEK is - I have asked but they don't share that unfortunately. They do strangely though tell you what the FAK one is, apologies but I can't remember it!

Also, yes, there are some side effects but mum has also had a UTI since before starting the trial so it can be difficult to tell what symptoms relate to what! Main ones though have been:

Dreadful rash on scalp - managed by steroid and/or antibiotic creams when needed. They did warn mum about this and said it could be on face - mum's not really had it affect her face though. If you do start the trial, make sure you have creams on standby as it came on quite quickly and was not pleasant. Creams calmed it down in no time (Mum was unfortunate it came on a Friday evening);

Swollen feet/ankles/fingers - not all the time though;

Dry skin/little cuts - moisturise a lot!!!

Sore mouth - a few ulcers that mum found using Difflam helped with.

We have also noticed that when she restarts the drugs after the 'rest' week, she gets a spike in temperature and is pretty sick. This could be down to the UTI though but it seems a bit coincidental it always happens 3 days after she starts taking the drugs again. Temp spikes for about 4 hours then goes back to normal. I've rushed her in to A&E every time for her to be discharged quite quickly (I'm sure they think I am a drama queen!!!).

I have to say as well, it is pretty intensive to begin with. Mum was exhausted but we do have to travel from Bucks to get there - the 9am appointments didn't help either. Things have settled down now though and we are on fortnightly visits which seem more manageable for mum. If we go into the next cycle, it's down to monthly visits.

Next visit for mum is 8th. Let us know if you are there and you could meet to talk about it.

Good luck with it. Please let us know how you get on

Charlotte xx

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Thanks Charlotte that's all really helpful information. Sorry to hear your mum hasn't well but so great the results have been worth it. Xx

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Amazing!! Lovely to hear some good news x

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Thank you x

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Hi Charlotte, Glad to read the good news about your mums results, hope it continues.

take care Lorraine xx

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Thank you x

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