Anyone else on Trametinib?

[Twinkle63]

I have been on trametinib for 2 weeks and I am really struggling with the side effects. I would love to know if anyone else is on this and how they are coping. Thanks

[Emsymits]

Isn’t that for melanoma? I’ve never heard of it as an oc treatment...

[thomas62 in reply to Emsymits]

Hi Emsymits,

Trametanib i believe is a MEK inhibitordrug for low grade oc. It hasn't yet done through NICE. Gwen x

[thomas62]

Hi Twinkle23, Sorry to hear about your side effects due to Trametenib. Hopefully they will improve. Perhaps if you could speak to your oncology nurse!! Where are you to be able to access Trametenib?

[busbee3]

Hi. What side effects are you struggling with? I understand that some side effects diminish after the first month. I'd be very interested in knowing more about your experience as I'm looking at starting Trametinib shortly. I hope the side effects get better for you soon.

[Twinkle63 in reply to busbee3]

Hi Firstly I would like to say I know how lucky I am to have the chance of this drug, my oncologist has been amazing however I’m still going to moan about the side effects. I have a rash all over my back, neck, chest, face and in my hair. It’s a red, very itchy rash with what looks like lots of whiteheads. I am finding the ones on my face really devastating and hard to deal with. The ones on my scalp hurt so much. I have just started antibiotics and chlorphenamine so I hope it will clear up soon.

[busbee3 in reply to Twinkle63]

Oh, poor you! I hope the antibiotics work quickly for you. I recently had a bad reaction to a drug and was covered in hives - it was awful. I did hear that the rash goes away after you get on the drug for awhile.

[Twinkle63 in reply to busbee3]

So do I ! Please let me know how you get on when you start. I’m feeling a bit on my own taking this drug. I know everyone will have different side effects but it’s nice to know your not on your own and it nice to have someone to talk to seeing how I’m not stepping outside with this face 😡

[busbee3 in reply to Twinkle63]

Will do!

[Saxcrazy75 in reply to Twinkle63]

Hi Twinkle63. Thanks for sharing your story & i hope you manage to get the side-effects of Trametinib under control soon. Please may i ask who your oncologist is and how they secured the drug for you? Many thanks for any advice.

[Twinkle63 in reply to Saxcrazy75]

Hi I was first diagnosed in 2014 and have had three ops and two loads of chemo when I was diagnosed again I wasn’t keen on the options (more surgery and chemo no thanks) my oncologist said there was a new drug and he would see if he could get it for me but he made no promises. It wasn’t until the very last minute that he said he had been able to secure under compassionate grounds. I honestly don’t know what this means and to be honest I just bury my head and do what he says. I find it to overwhelming. Sorry I am no help hopefully others maybe able to advise better. I wish you all the best

[Saxcrazy75 in reply to Twinkle63]

Thanks very much for your reply and for the info. Are you in the UK?

[Twinkle63 in reply to Saxcrazy75]

Hi Yes I am in the U.K.

[twiggy66 in reply to busbee3]

Hi my side effects were all skin related, but if you get the chance to take this drug I would & stick with it, mine were really bad to start with it’s not until you look back photos you realise how bad, but they reduced my dose & I have been coping for nearly 4 yrs now. I think my body is saying....well she’s gonny keep taking this drug so we’re as well getting used to it. Lol. Stay strong

Isobel xx

[Levanah]

For those asking.... At the moment in the U.K. Trametanib can only be accessed via an IFA (independent funding application) which is submitted by the Medical Oncologist. I have been told that the IFA is more likely to be successful depending on the Oncologist requesting ie if the Onc specialises in Low Grade OC orca second opinion is sought by specialist in Low Grade . Also Ovacome can give advice re best practice and the best way of achieving IFA. It’s really worth calling them for support in obtaining Trametanib.

[Artgreen in reply to Levanah]

Thanks for this. I don’t know if it’s helpful but my onc said that the cancer had to have woken up again for Trametinib to be useful to use so is unlikely to be effective while it’s “quiescent “.

Love Alex

[Levanah in reply to Artgreen]

Thanks Alex. That makes sense hun. Xxx 😘

[busbee3 in reply to Artgreen]

Hi. By it's very nature, lGSC is slow growing and often described as quiescent. Did your onc. give you any other information about its use? Did he mean that you need to have progression for Trametinib to work?

[Artgreen in reply to busbee3]

Yes that seemed to be his understanding. I’d asked if I could be considered under the scheme Prof Gourley mentioned until it becomes available on the NHS but my onc felt it was premature and this cancer would react to some drugs better when it was active than in its current state of being inactive or invisible.

[thomas62]

Hi Levanah,

Thanks for your message and possible way of accessing Trametanib via an IFA. Much appreciated. Gwen Xx

[twiggy66]

Hi Twinkle yes I’ve been on Trametinib for nearly 4yrs. My tumours aren’t shrinking but they’re not getting any bigger either, so happy bunny. Yes I had horrendous side effects to start with, mine were all skin related they reduced my dosage from 2 to 1.5 then down to 1 mg & that helped a lot. I still get dry mouth, eyes, scalp & body but I’ve got lotions & potions that help. I’m just so grateful to have been given the chance of this trial as the alternative doesn’t bear thinking about. Feel free to get in touch anytime

Isobel xx

[Twinkle63 in reply to twiggy66]

Thank you for this. I’m so pleased the tablet is working for you. I know it’s very early days for me yet and I’m guessing on my first review they may change the dose I’m on. I can’t cope with my face being like this. I’m ok if I can hide things but this is just horrible. The itchy scalp is a bit better now & although my back and chest is covered in a rash it doesn’t hurt. It’s just my face! Hopefully my oncologist will be able to help when I see him next week.

[twiggy66 in reply to Twinkle63]

I know exactly how you feel, I get break outs on my scalp from time to time, but no one sees it & a course of antibiotics sorts it, I also get a rash on my body occasionally, but my clothes cover it, it’s when it’s on your face & believe me I’ve looked like a mixed fruit dumpling on occasion & you can’t hide it, it really depresses you, but the good news is once my dose was lowered I lost a lot of these side effects including spotty face. When I was on the high dose, my tumours were shrinking, but my body couldn’t cope with side effects, & as I said earlier now they’re not shrinking but not getting any bigger either so happy days. Hope you persevere & you get the dose lowered for you, the side effects do ease up in time. Big hugs

Isobel xx

[Twinkle63 in reply to twiggy66]

Thank you Isobel it’s so nice to hear from someone who is also going through it.

[twiggy66 in reply to Twinkle63]

What hospital do you attend, I’m at The Beatson in Scotland

Isobel x

[Twinkle63 in reply to twiggy66]

Northampton Hospital

[Izoominka in reply to twiggy66]

Hello, Twiggy66! I know your post is rather long time ago and I didn't want to bother you but would be so kind to answer some of my questions related to Trametinib as three is no one that could help me, you have been on the drug for quite a while now, I've just started it, I'm on second week taking 2 mg, could you tell me please, how soon the side effects started, how long they last, are you still take the drug, has the tumour shrunk, how did you cope with it, any information would be much appreciated, as my medical team didn't explain me anything about the drug, I do hope that you are in good health now, wishing you a Merry Christmas, thank you in advance, regards Dee!!

[twiggy66 in reply to Izoominka]

hi Dee I sent a big reply to you around 9:30 this morning did you get it by any chance, it’s not showing up on my sent so I’ve got my doubts. Let me know.

Isobel

[Izoominka in reply to twiggy66]

Hello, Isobel! No, unfortunately I haven't received it 😒, but I'm very grateful You tried, perhaps you would be so kind as to resend it to me, please xx

[twiggy66 in reply to Izoominka]

Hi Dee sorry about that, I unfortunately didn’t have a copy but here goes again. I’ve been on it successfully for 7 & a half years now, but it defo took me awhile to get all the lotions & potions to get to where I am now. I started on 2mg but all my side effects were skin related & after about three months I was reduced to 1 mg. On the bigger dose my tumours were shrinking, but no shrinkage on the lower dose but they have never gotten bigger either. I had dreadful dry skin on my body & scalp so much so it was breaking out, also dry eyes & mouth & hacks at the side of my nails. Now I am on a continuous low dose of antibiotics (Lymecycline) & I take (Fexofenadine) for itchy skin also I have a doublebase gel to hydrate my skin & cream for dry eyes & gel for dry mouth which I don’t need to use all tbe time. So after trial & error over the years I’m now in a place where I’m coping easily. Hope this has been of help to you & don’t hesitate if you have any other questions. Hope you get this this time. Take care & have a happy Christmas

Love Isobel xx

[Izoominka]

Thank you very much dear Isobel, I'm really glad you are coping well and keeping the C under control, as I said I'm only on second week and I haven't experienced any of the symptoms you had yet, I don't know is it to early? Or I'm really lucky, I'm feeling very tired and nauseous 🤢 bit high blood pressure but in general not to bad, perhaps it will kick in later, but only time will tell, thank you again for your advice and kind words, with best wishes, Dee xxx

[twiggy66 in reply to Izoominka]

Fingers crossed Dee you never get any of these side effects, but they are making great inroads in sorting out all our wee problems, never be frightened to ask your doctors any questions you’re not sure about. Where are you from. I’m In Scotland & remember I’m here if you need a wee chat about anything xx

[Izoominka]

I'm in Dorset! I'm really grateful to you as there is still not much information about how to cope with the side effects ,you have given me a hope that there is life after recurrence, it's probably the best Christmas present I could wish for,Good Bless you xx

[twiggy66 in reply to Izoominka]

God Bless you too, every day is a bonus just keep being positive xx

[joanbaez]

Hi Twinkle63 As I'm just about to go on Trametinib i've looked back at old posts to see if I could glean any info . I see you were on it . Please can I ask how it has gone for you