Trametinib low grade cancer

[Wiganw]

Hi everyone

Has anyone any experience of the Drug trametinib which is given on (LOGS) trial. It is for women with low grade ovarian cancer. It is a MEK inhibitor. I am interested in side effects and results of trial.

My alternative is letrozole so would be very interested in how effective this was for others with low grade cancer. I am also hormone receptive.

Thanks in advance

Sx

[MsLizD]

Hello,

I am about to go on the LOGS Trial with Trametinib. Been through all the tests and examinations with the Royal Marsden so all good to go.

I was ment to be given the Trametinib today, but due to the weather forecast of 30 + degrees I have cancelled the appointment. I live in Warwickshire and it's a round trip of 200 miles plus 40 minutes of tube travel each way so waiting for another apt on a cooler day.

When have you to make decision and which hospital are you with?

Liz X

[Wiganw in reply to MsLizD]

Hi Liz

It's great to find someone else ready to go on the trial. I am at the Christie in Manchester. I live in north wales, I moved to the Christie about 2half years ago. The Christie is about 40miles each way for me so takes about an hour door to door so I'm lucky, your trip is a bit more difficult.

I was diagnosed Dec 2011 3c I had hystorescctomy then carbo taxol reacted to taxol after second and ca125 started rising after taxol stopped. I was not tested for low or high grade or for hormone receptor so did not know . After 6months had another chemo gem carbo this time. Did get some improvement but really knocked me about. I said at time as never having again. I moved to the Christie, had more tests and Told low grade and hormone receptive, have been on watch and wait and on Friday will be 3 years from last chemo. An external lump has Grown on pelvis/pubic bone which is now 2cm. I am starting feeling full so has been decided I need to start treatment. Although my ca125 is stable. I now have option of traminitib trial or letrozole. the Christie only signed up to the trial last week and my trial information arrived this morning. I have been told they would not be worried if I did not start for a couple of months as long as don't get any more symptoms. so I'm hoping to go on narrowboat for a few weeks and start around early September if I pass tests. Only had initial discussions at the moment.

Have you had biopsy how was that. I'd love to hear any information you can share would be gratefully received. My email is [e-mail] if you prefer to email

Thanks

Sx

[thomas62]

Hi Wiganw

I am low grade serous 3b. I have been on letrozole for abt 9 months now. I have just had my second review following CT scan and again am classed as "stable". The only side effect that has bothered me to a degree is arthalgia, mainly my right leg and hip causing me to limp. However it does come and go. At present I don't have any arthralgia. I remain on Letrozole.

Gwen

[Wiganw in reply to thomas62]

Thanks for that gwen, do you mind if I ask when you were diagnosed and what other treatment you have had. I have but below my very brief history

I was diagnosed Dec 2011 3c I had hystorescctomy then carbo taxol reacted to taxol after second and ca125 started rising after taxol stopped. I was not tested for low or high grade or for hormone receptor so did not know . After 6months had another chemo gem carbo this time. Did get some improvement but really knocked me about. I said at time as never having again. I moved to the Christie, had more tests and Told low grade. I have been on watch and wait and on Friday will be 3 years from last chemo. An external lump has Grown on pelvis which is now 2cm. I am starting feeling full so has been decided I need to start treatment. I now have option of traminitib trial or letrozole.

Sx

[thomas62]

Hi Wiganw,

I was diagnosed in Dec/Jan.2014 following concerns abt. possible bowel problems (significant constipation) which turned out to be a mass pressing on the bowel. No other symptoms. My doctor acted very quickly in getting me into a Sheffield hospital. The whole experience of initial referral to the hospital, a radical hysterectomy to discharge took just under two weeks. My surgery took place on 11th Feb. 2015. The medics were all brill. The diagnosis was a huge shock but because things happened so quickly I didn't have much time to think/worry about it. The final diagnosis was low grade serous stage 3b. and the radical hysterectomy leaving me NED. I was then put on "watch and wait" but over the following months became uneasy about this stance as I didn't have any prior symptoms anyway, also no CA125 tests or scans recommended by the hospital. I then asked for a referral to The Christie and became a patient there in abt. Spring time 2015; they updated my initial diagnosis, tested my cells which are strongly oestrogen positive/progesterone negative, gave me a DEXA scan and referred me to genetics due to a possible family link. I was diagnosed with oesteopenia and my doctor prescribed vit D/calcium, the genetic testing for main BRACA1 and 2 links were negative. It was followed by 3 monthly reviews, with bloods and CA125's done (whilst under my previous hospital I had asked my local GP for CA125 tests and was aware that it was going up very gradually from single to double digits). With CA125 going up, I had a CT scan and because it was felt that there had been "a little movement" I was recommended Letrozole and have been on this since Oct. 2015. I have had 3 monthly reviews with CA125, bloods and follow up CT scans and am classed as "stable"; my CA125 has remained at 31. When initally seen at The Christie, the possibility of a MEK trial was mentioned but I would have needed prior chemo which I haven't had on the basis that I was NED post surgery and also because I was told that low grade doesn't necessarily respond well to chemo. From reading on the net etc. I thought that a CA125 35 or under was considered "normal"; however, on my CA125 blood results from The Christie the reference range is 30 and under. As I've said mine is stable at 31 at present. So this is my story - we all have a story don't we! My next review appointment is on 6th October. I travel from South Yorkshire to Manchester by car which takes me about 1.1/2 hr. each way if the traffic is not too bad. But we do what we need to do!!

Best wishes. Gwen x