Trametinib

[joanbaez]

Hi , I have low grade serous ovarian cancer. I had debulking surgery in Jan 2020. I have been taking letrozole since then . The disease is present in pare aortic and other lymph nodes but growing slowly . Recent scan found progression into spleen and increase of growth speed . I'm just about to embark on Trametanib and would be grateful for any advice, or comments about other people's experience with this drug . Many Thanks .

[Izoominka]

Hi, Joanbaez! I've only recently started on Trametinib myself, with recurrence of low grade seruos OC,started on 2 mg and after one week all my face, head an ears were covered in skin rush, like acne, very itchy and not very nice to look at but in general not too bad, I had to stop it, had course of antibiotics, antihistamines and some steroid cream, my consultant lowered the dose to 1.5 mg. And I restarted it yesterday, it is still to be seen how I cope with it. I've spoken to lady who has been on the drug for more than 7 years now and it kept her C. at bay, I really hope it will help to shrink mine, and the alternative beeing chemotherapy I'm glad to give it a go. Sorry for such a long post, but if you would like how it goes don't hesitate to ask me, I wish you all the luck in the world in this difficult time in your life, with best regards, Dee!!!

[Lizz49 in reply to Izoominka]

Hi there

I was encouraged by your reply as I’m also LGSOC and Trametinib a possible option for me if the letrozole is not deemed effective. Great to hear of a lady on it for 7 years we need these stories of hope! I hope you cope well with the lowered dose and it really works well for you! Xx

[joanbaez in reply to Izoominka]

Hi Dee,Thanks very much for your detailed reply . It really does help hearing directly from someone with the same diagnosis going through the same treatment . I know we all react differently but forewarned is forarmed and hearing how you progressed through it is good . We are in the minority with low grade and it's particularly encouraging to touch base with you .

I'm very sorry you had such an initial reaction and had to go through all of that and hope you are coping better now you've started again on a lowere dose . How is it going so far ?

Isn't it wonderful hearing that someone has kept the cancer at bay for 7 years . !

Best regards Marilyn !!

[Lizz49]

Hi Joan,

Sorry to hear of your recent progression, I’ve heard good things about Trametinib although it can have tough side effects initially. I’ve had a recurrence of low grade after 5 years then secondary debulking in March but the low grade is back already…I’m on letrozole which I think is working to some extent but onc mentioned Trametinib to me as next option. I hope you’re lucky and sail through the treatment with little to no side effects, do let us know how you get on and best wishes Xx

[joanbaez in reply to Lizz49]

Hi Lizz49 !

Thanks very much for your reply and good wishes for my upcoming treatment .

I'm so sorry you've had a reoccurrence after your secondary debulking ,that's very disappointing so soon isn't it . Presumably you could have the secondary op because the cancer at that time was confined to the one place . ? I was hoping I could have my spleen removed but onc said as it's in various lymph nodes as well this is not an option .

Can I ask where you new occurrence has appeared ?

I do hope you are coping and that a good plan for going forward is now in place

Kind regards

Marilyn

[Lizz49 in reply to joanbaez]

It was so disappointing Marilyn and the surgeon said so unusual..the low grade recurred in similar places to where it was removed - on surface of bowel, and small areas in pelvis and abdominal wall on the right side. I had a bowel resection but still it returned. I hope the letrozole keeps it stable for many years, I’m just going with the flow and enjoying the good days. If things progress it would be Trametinib but I’d be ok to do chemo again as I had that after first debulking and I’m sure that kept me NED for 5 years. Do let me know how you get on with the Trametinib and I’ll keep in touch Xx