Looking for a soul mate

[twiggy66]

Hi anyone out there on a LOGS trial called Trametinib for low grade serous OC. Just looking for someone to swap side effects with lol xx

[badger4218]

Oh Bless, I,m sure one of the ladies will reply soon, you did make me giggle I remember sitting in the family café as a child when an Elderly customer offered to buy the wart I was fiddling with on my hand for an old penny .I was amazed when a week or so later I noticed that the wart had vanished! .I never saw the Lady who paid me a penny for it again and so never knew if my wart had appeared on her, but I never forgot the incident Coincidence? . Lol. Take care, wishing you the best. x x

[twiggy66 in reply to badger4218]

Well badger if nothing else that wee story made me laugh stranger things have happened 😂x

[Hidden]

Hi Twiggy66

Not on the LOGS trial - BUT did the month of tests etc. etc. at Sutton. I was random selected for the drug but currently have a bleeding issue and was considered a risk as one of the many side effects was increased bleeding - e.g. menstrual bleeding mine is rectal one of the consequences of an ileostomy.

I have been diagnosed now for 7 going on 8 years - consider myself extremely fortunate that the treatment ...... Letrozole 3 years, then a blockage - (ileostomy ) 4 rounds of Carboplatin/Taxol which worked well, 2 years later 6 rounds but no positive result. Major surgery to try to remove/bypass tumor this May - but not successful referred to Marsden for Trial as mentioned June/July time this year. I have sought a 2nd option on the bleeding in a hope to establish the cause .... if there is a positive cause then I might re consider having another attempt at the trial.

So the question is HOW are you managing on the trial, and where do you going for treatment? We live just outside Poole and found the traveling up to Sutton for Monday morning 8.30 clinic quite a challenge. The Marsden have put me onTamoxifen another hormone inhibitor. I have my next scan end October so it will be interesting to see if this has managed to have any impact.

Take care, do hope you are doing well.

Regards

Suzie

[twiggy66 in reply to Hidden]

Hi Suzie, so sorry to hear your having such a time of it, hopefully next scan will show a wee positive result, I go to The Beatson in Glasgow which is about 45 mins from home so not too bad. I have been on trial for just over a year now, and to start with dreadful side effects when I was on highest dose, but tumour was shrinking significantly, now I am on lowest dose & coping ok with side effects, but now tumour isn't shrinking, but it isn't getting any bigger either so prof who I see every 4 weeks is happy with that so, so am I. Great hearing from you I don't think there are many ladies on this trial, but if you get on it don't hesitate to get in touch and we can swap notes. Lv isobel x

[Hidden in reply to twiggy66]

Thank you for your quick response Isobel .... really good news that this drug is holding the tumor for you. I know how pleased I was when the Letrozol and subsequent Chemo worked. It gives me great encouragement to get this bleeding resolved and then go back to the Marsden with a cause for their risk effect!!!

We have just returned from Eyemouth - where we went to an amazing Memorial for a very special friend. With all this current dancing around the NHS - we didn't stay as long as we would have liked. BUT we did 'wander up' and really enjoyed being 'in the Borders' and Berwick on Tweed. Just love it. Last year we took 6 weeks to trip around the Top of Scotland - on and off the North 500 - really took loads in. Sadly circumstances with timing with my friend meant that we were 'up and down' we had planned to spend a couple of weeks on the Dundee side up and over. Never mind next time, perhaps Spring time (no midgies)

Thank you again for your response, enjoy your week.

Regards

Suzie