Trametinab Diaries

[ScardyCat40]

Some of you may remember I posted a few weeks ago that I was on a break from the trial drug trametinab for recurrent low grade serous ovarian cancer.

I had been taken off the trial because my echocardiogram had revealed that my ejection fraction had dropped from 60% to about 50%. I was off the trial for about 4 weeks but I am pleased to report that my EF returned to 62%. My most recent CT scan also showed that the cancer was still stable so I restarted back on the trial

at a lower dose.

I have been having ongoing issues with my breathing which I felt was deteriorating. I was referred to a respiratory consultant at a specialist centre. After reviewing my most recent scan they felt the most likely cause was my right pleural effusion which they gestimated to be about 2 litres.

I was waiting to be seen by the pleural team when I ended up at my local hospital with upper back ache and pleuritic pain. I was admitted for a CTPA after my blood D-dimer was found to be slightly elevated.

The good news I did not have a PE but they did have me in for a pleural tap last Tuesday. They drained off about 1300 ml of fluid. Normally the fluid is sort of amber coloured but mine was creamy in appearance. An infection was more or less ruled out as I have no temperature and feel relatively well. They think it could either be something called Chyle which would mean my lymph system is leaking into my pleural cavity or it could be cholesterol deposits which sometimes happens in old recurring pleural effusions. I have had one on the right for 6 yrs.

I am currently waiting on the lab results to come back, which takes about a week. I am seeing my oncologist tomorrow as on 2 weekly follow up at the moment. Not sure yet if this will have any implications for my treatment.

From my recent hospital visits I have realised that having a bilateral pleural effusion is rare and having milky fluid is rare. My breathing is much improved and I am not coughing as much. I am meeting with the pleural team next Monday I hope we have the lab results back by then.

[chrissapam]

what a nightmare....just hope all these interventions and the trial work and you are able to get back to running.....Chris xx

[ScardyCat40 in reply to chrissapam]

Thanks Chris I am sort of running just very slowly

[chrissapam in reply to ScardyCat40]

well done....may it improve!

[ScardyCat40 in reply to chrissapam]

Thanks I haven’t had to result to crawling yet lol

[Zena41]

Happy for you. 😊

[Hidden]

on balance this is sounding pretty good, I think... hope it stays so x

[mummybear59]

Well that all sounds very complicated Lorraine! The good thing is that your breathing has improved so, whatever that gunk was, getting rid of it was obviously the best thing!! Hopefully it was cholesterol deposits as I guess that's the least worrying explanation? Great that you feel better anyway. Let us know what your onc says (is there a chance he will be able to access the results yet?)

P s when you said 'the good news is I didn't have a PE' I thought you meant a pleural effusion and then I got totally confused when you said you had a pleural tap. I realised after you meant a pulmonary embolism so yep it definitely was good news! (Although not having a pleural effusion would've been good news too!). I'll shut up now. 😉

Liz xxx

[ScardyCat40 in reply to mummybear59]

I am not sure the pleural tap was carried out at my local hospital so it’s a different system. I know they emailed the hospital where I have been referred for my breathing also a different hospital

[mummybear59 in reply to ScardyCat40]

Oh doesn't it infuriate you that it can't be a centralised system!I Goof luck anyway Lorraine. X

[ScardyCat40 in reply to mummybear59]

More disappointing news this morning my EF has gone back down to 55%. I have to have another echocardiogram in the next two weeks if it drops below 52% then they will have to stop the trial. I am not sure if they can drop the dose again 🤔

[twiggy66 in reply to ScardyCat40]

Hi Scardy Cat I’m on Trametinib trial too, I started of on 2mg then it was reduced to 1&half, then lastly down to 1 mg. I don’t know if this info helps. Since dose was reduced tumours haven’t shrunk any, but good news is they haven’t gotten any bigger either. Hope all goes well with you.

Isobel xx

[ScardyCat40 in reply to twiggy66]

Thanks Isobel that is useful to know. I am currently on 1.5 mg why was your dose reduced?

[twiggy66 in reply to ScardyCat40]

Side effects were really bad on 2mg, mine all seemed to be skin related, dry mouth, eyes, scalp,skin, bad spots on face neck & legs. Things were a bit better when he reduced it to 1&half, but I’ve been on 1mg since January & my body seems to be coping, I still get wee niggily side effects, but what my prof usually does is take me of trial occasionally for a couple of weeks to give me a rest, but interestingly enough when I go back on to start with I get this hacking breathless cough which last year when I first got it I was really worried, but they xrayed & everything was ok I do have scarring on lung from chemo when I had my op in 2012. Last time I was at Beatson prof put me on blood pressure tablets that was 2wks ago, & I’m really struggling with them shakiness & breathless so for now I’ve stopped them & waiting to hear if they will change them. All in all I’m grateful to have been given this trial, & as I said before it’s not shrinking but no bigger either so I’m a happy bunny.

Lv isobel x