Two weeks on

So I have been taking the trametinib for two weeks now and I thought I would post a little update.

The first couple of days I felt really sick shortly after taking it. I have to take it at the same time every day on an empty stomach with a full glass of water.

The sickness has settled down but I have had loose bowels over the weekend. It seems that I can't have regular bowel movements any more its either one extreme or the other. I did take some Imodium then I didn't go for a couple of days. I was feeling a big bunged up so tried some docusate within 5 mins I was running to the toilet (it can't be the docusate it doesn't work that fast). Otherwise so far no rashes and no vision problems.

I have my first blood test tomorrow so I have had to gradually change the time I take my tablets as it has to be at least 4 hrs after. I have another heart scan in a couple of weeks then first follow up with the doctor.

31 Replies

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  • Hi there, I looked this up "trametinib" but didn't find much on it. Is it a maintenance drug or a drug for Brac positive ladies? It sounds quite strong at least you are on top of your care with this.

    Good luck on your blood test tomorrow. I would be interested in your progress. The more informed we are the more we will understand our own treatments if we need to go on this kind of drug. Take care Cindyxx

  • Its a trial drug for low grade serous which I have. I believe it has been used in the treatment of melanoma

  • Hi there, that is really interesting I am high grade serious so no good for me but I know there are ladies on here with the same as you so its something they can look into.

    It strange but I write so much down from this site even when it doesn't really relate to me. I like to be informed because you never know when it might come in handy. Take care Cindyxx

  • The toilet situation is awful isn't it it's like a rollercoaster ... hope you find the right balance soon ... best wishes for rest of your treatment ... sounds like your doing really well 👍🏻👍🏻🤗

  • Hi Scardycat

    Being a low grader I am very interested in your treatment. Please keep us updated. Best wishes for your treatment and hope the bowel situation improves for you.

  • I'm feeling for you and your bowels! Good luck with the doctor - keeping everything crossed that thungs are moving in the right direction.

    Netti x

  • Good luck with the trial and your first follow up. If the drug has been used for some time for melonama, you might try searching the web for how those patients control their bowel problems. Although having said that, what works for one doesn't often seem to work for another. I remember the lurching from one extreme to another on my first cycle when I took some stuff I'd been given by the hospital to,prevent constipation and ended up having to take Imodium.

    Hope you get it sorted!

  • I have been up all night going to the loo. The runs is a common side effect of the drug ☹️

  • Hello,

    Debated whether i should write this but thought when I was on the LOGS Trial and taking trametinib I was very interested to hear how people and doing who are on it. So here goes and bearing in mind we are all so different in how our bodies are going to react to drugs.

    I took it from July through to January, approx 6 months. After the first month my blood pressure rocketed and I never felt any different. It was only at the hospital apt was it found to be over 200 dangerously high so I was admitted into hospital overnight and the drug was stopped. Blood pressure under control, I restarted on a lower dosage. I had an extremely bad rash on my face at the same time which was treated by a medicated lotion and disappeared. I had skin pealing on my hands again treated with a cream. I also had the most painful mouth ulcers which ment I couldn't eat what I wanted and even found it difficult brushing my teeth.

    Prior to Christmas I was admitted into hospital with pneumonia (well there is a question mark over this) again stopped the trial drug. Restarted after Christmas had lots of tests for heart failure, lung function and scans as I became unwell with a mucos producing cough. Again trial drug stopped and I was put on antibiotics and steroids. This time pneumonitis was talked about, it's something that can be caused by the drug and if not treated can result in scaring of the lungs. I had an appt with the lung specialist and an X Ray but it was not certain that I had pneumonitis therefore the decision was left to me in the knowledge that pneumonitis could possibly return. I was feeling a lot better with the steroids but these cant be taken for long periods and they can have lots of side effects. However with this knowledge I made the decision to stop the trial drug. It had achieved a purpose as the tumor on two occasions during the trials has showed signs of a very small amount of shrinkage but I didn't want to compromise my lungs as well.

    So now I still have monthly apts at the hospital until such time that another suitable trial becomes available or the cancer grows in which case there are other tried and tested drugs available.

    I do hope that my experience will not upset you, like I started by saying we are all so very different and in my opinion we have to take a chance.

    Overall, I guess for me it was a success with costs as the tumor shrank. I now feel ok, am being weaned off the steroids and planning on a holiday in Spain and the Greek Islands but can't get insurance, oh well life is a risk if we think about it.

    All the very best of luck and keep us posted. X

  • We have already spoken on messenger - its Lorraine but thank you for sharing your experience. I have this morning noticed a small cluster of whiteheads around my nose. I am going in today for blood tests only and clinic will be over by the time I get there. I have taken some immodium this morning and that has put a stop to the runs for now.

    The chest thing does concern me as I already have a pleural effusion that has done some damage. My next follow up is the 15/03

  • Oh Lorraine I didn't realise, sorry to have repeated myself.

    Good wishes, wonder if there will be any other ladies out there with experience of these trials.

  • I think it would be useful for women to read of your experiences. Did you feel well looked after on the trial? Were any problems you had dealt with quickly?

  • Yes, yes and yes. The Marsden were truly wonderful and that goes from receptionists to consultants. I had a very dedicated clinical nurse who I could phone if unwell or unsure and I was able to very easily put my life in their hands. In fact I miss the contact as it was more or less every week I was having appointments due to the problems I had over the time. In fact now I feel really unsure of seeking any sort of advise from local GPs.

    Hope you or the hospital sort your bowel problems out especially if it's having an impact on your life. Must say I didn't really have those problems.

    My rash started with little white spots and developed from there.

    All the best wishes X X Liz

  • I feel a bit vulnerable at the moment as I live alone and I am without my car

  • Hi there, I know how that feels before oc I was fine living on my own but now I do feel very vulnerable. When I am a lone I have too much time to think about my illness. I am not a church person but did join one just to be around nice kind people & keep my mine off of oc. I am very lucky I can phone my daughter in law anytime. I don't drive & do use lots of taxis which is very expensive but does get me out & about. Take care Cindyxx

  • Know what you mean, I live alone too. I do have my car and it's a life line, wouldn't do half the things I do if I had to rely on buses. Will you get your car back? Do you have family and friends who are living near to you?

  • I feel very vulnerable about my holiday, it's a cruise for 18 days with my youngest son who is Down's. We have been on severa l cruises before and no problems but this time I keep thinking 'what if'

  • Hugs xx

  • No sadly my car is beyond repair so I need to sort out a replacement. All my family live over the other side of Manchester. I am a bit dependant on a local charity or hospital transport at the moment. I can get the bus but its two buses and takes a while. However I know some other ladies on this trial at other centres are traveling at least 2 hrs to get to appointments

  • That makes life difficult especially if your not feeling too well. Hope you get replacement soon. But you know what, us ladies are amazing and we deal with all that is thrown at us. X

  • I went for my bloods today but my blood form had gone missing so ended up phoning the research nurse. Of course she wanted to know about the spots on my nose and bowels. Ended up being there longer than anticipated. Now have antibiotic cream and more immodium. I have been told if I have 4 or more bouts of loose bowel movements in 24 hrs. I have to stop the pill and contact the hospital

  • Just picked up this message. Yes the cream worked well for me.

    Hope things have improved with the bowels. Did they suggest lowering the dose or just stopping it for a while.

    When I had high blood pressure the drug was stopped for a couple of weeks then it was restarted on half the dose. Likewise when they thought I may have pneumonitis the drug was stopped for a month and the doctor suggested again they would lower the dosage but I didn't go back on it.

    Good luck and thinking of you X

  • I had two episodes yesterday but took the imodium. I think they would want to scan me to make sure I wasn't impacted. I was technically snook into another clinic so I was seen between patients so not a lot of time for discussion. Not sure if the cream has made an awful lot of difference yet. My scalp is also really itchy

  • The lotion I was given (clindamycin) worked well but not sure how long it took to work. I am still using it once a day not that I need to but it seems to make my skin really soft.

    As for bowels being overworked, Not pleasant. Strangely enough this week I have had a similar problem needing the loo immediately and often. it's really not nice. I do hope things will get back to normal for you soon.

  • Good luck with your trial. I hope it works for you and your body gets used to it soon. Ann xx

  • Hi, can't say I have heard of the drug you are now on. I just started Rubraca. I too am BRCA positive. I Hank you for sharing information that is so helpful to us all. Hope your bowel situation improves every day.

    Carole

  • Hi I have not been BRCA tested its not common in low grade serous which this trial is for

  • Good morning, I'm not familiar with low grade serous. I was tested early on (blood test) so we're my daughter ans sone. Daughter neg, son positive. Have a nice day,

    Carole

  • It accounts for 10% of cases and is more common in premenopausal women. It is a slower growing cancer but that makes it difficult to treat with chemotherapy

  • Oh, I see! Just keep fighting this horrible disease!

    👍🏼Carole

  • There are a few different types of ovarian cancer

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