Tremetinib

[jsc50]

Hi, my oncologist mentioned perhaps starting me on Tremetinib as second-line treatment of my low grade serous ovarian carcinoma. I am worried about the side-effects, of which some apparently are particularly severe. I would be so grateful if any one could share their experience of this with me. Regards Ruby

[Levanah]

Hi Ruby. I had Trametinib for Low Grade last year. I started on 2mg but it was too much for me. After stopping it for a few months to let my skin heal, I went back on it at a reduced dose of 1mg and after my body adjusted to it, I increased to 1.5mg. That was more manageable.

My oncologist took on board my thoughts and as a result a new adjuvant protocol was written for pharmacy. I wrote a blog about my experience which I’ll attach below for you.

It worked very well for me but definitely it helped to ask for a modified dose with a view to increasing if tolerated.

Good luck xx Diane

[Levanah]

here is the blog post I wrote Ruby.

If you do try Trametinib, talk to your oncologist about having the prophylactic meds I mentioned. It is far easier to maintain control of side effects rather than allow them to accumulate . When we have chemo , we have meds to counteract side effects so this is the same principle. More oncologists are moving towards writing protocols for prophylactic meds with Trametinib now.

Here’s the link ;

dianeevanswood.wordpress.co...

[jsc50 in reply to Levanah]

Diane, thank you so much for giving me a most clear and concise account of your experience on Trametinib. Thank you also for attachment. Your blog is particularly helpful, with regard to the importance of prophylaxis to patients while on this therapy. Yours has been a much longer and arduous journey compared to mine thus far. I have to admit, the future fills me with fear and, from what I had heard about Trametinib, it is no exaggeration on part to say I am scared about all the nasty side-effects described.

I was diagnosed with Stage IIIc low grade serous ovarian cancer in November 2021, having been admitted from A&E only 2/52 earlier with abdominal distention. During the subsequent week 7000+ ml of ascitic fluid was drained. Lapatotomy, followed by debulking TAH BSO, appendicectomy, omentectomy and bowel anastomosis was performed on 10th November. I commenced 6 cycles of Carboplatin & Piclotaxol over 18/52 in February 2022. In November 2022 my CA125 was (it was initially 900+ prior to surgery). In February this year it had risen to 25, and by March 35. A CT scan on 26/3 revealed "a strange node like presence in the pleura" said my oncologist. The entire appointment was basically concentrated on that, which means biopsy and probably more surgery. I am devastated. Furthermore, having also been diagnosed with polymyalgia rheumatica, and at the moment reliant on a maximum dose of Co-codamol for pain relief I am extremely anxious about the consequential side-effects from Trametinib as well. My quality of life is reasonable albeit that PMR does affect it. I dread to think about how it will be once starting on that... Ruby

[Levanah in reply to jsc50]

Oh Ruby, I wish I could give you hugs. Yes, I’ve been where you are re being scared and uncertain. It’s all fear if the unknown.

I’m now back to a hormone blocker which is miraculously working in that my symptoms are lessened. I was going to have radiotherapy to the painful liver secondaries but now don’t need it as the hormone blocker is helping. My ca125 is 101 and not really coming down much but my symptoms are so much better controlled. I’ve learned over the years to listen to my body and not bear massive importance on the ca125. I look at how I’m feeling, what my symptoms are first and foremost. Low Grade grows slowly and I’ve learned also not to panic and rush at treatment. You have time to weigh up and sort out what options you have and re Trametinib, you have time to discuss a reduced dose and prophylactic meds. It’s all part of regaining control of the situation. So much is out of our control, but we do have a say in what and how the next step happens. Your oncologist and you have joint responsibility to decide on what’s best for you.

Other things to look at are the BOUQUET study and the clinical trials available for low grade ie RAMP 201 particularly. If Trametinib had a not for you, there are options.

Take care and if I can help in any other way, please just get in touch. Much love

Diane x

[jsc50 in reply to Levanah]

Yes, on the 'brightside,' LGSOC is slower growing; thank you for reminding me of that, which hopefully does give one more time to consider options. I am aware of the RAMP 201 trial, and also FRAME trialing Defactinab only. One lady whom as a case study of FRAME was having excellent results. I am hoping that there may be others at the Zoom meeting next Thursday who might also have personal experience about Tremetinib and/or one of those trials. My next appointment with the oncologist is on 18/5, hence the more advice I could glean from others like you the better it should be for me when the time comes.

I am truly grateful for your offer of support, and wish you all the best in your own battle with this ghastly disease. Affectionately, Ruby.

[Levanah in reply to jsc50]

you’re never alone dear Ruby.

Good luck 💚

Diane xx