Low Grade OC -Trametanib update!

[Levanah]

I have been in touch with Prof Charlie Gourley regarding where we are at with Using Trametanib in Low Grade OC. He has very kindly updated me and said this -

“Re trametinib, the long term goal is to persuade the drug company who make it (Novartis) to go for a licensing application on the basis of our trial data so it gets licensed and thus can be given to patients with low grade serous ovarian cancer (although in each country a funding application will also need to be made e.g. to NICE). David Gershenson and I are currently in discussion with them about this.

Until then I am trying to get it funded through an IPTR (known as an IFR or individual funding request in England) for one of my patients just now. We can do that because the drug is already licensed for another cancer (melanoma). I’m not sure how successful that will be but ladies can ask their oncologists to do the same on the basis of the data that were presented in Barcelona. The paper hasn’t been published yet. We will be submitting it soon. Anyway, that is where we are right now.”

I hope that will be of help to those wondering how to access this drug.

Best wishes

Diane xx

[thomas62]

Hi again Levanah,

Wow Levanah - brilliant that you're been chasing Trametinib up both with Charlie Gourley and David Gershenson with the aim of Novartis getting the drug licenced and also your individual funding request in England. Also for Charlie Gourley's update. Let's hope these applications are successful and made quickly. You're a star Levanah! Please keep us updated. Gwen Xx

[Spirit22]

Thank you Diane for this post and update. Fingers crossed it will become available soon. I am seeing oncologist end November so will mention to him. Best wishes Lesley xx

[Artgreen]

Thank you so much for this update Diane I will let my oncologist know the position, you are indeed a star!

Love Alex xx

[busbee3]

Trametinib for Low grade could be one of the greatest advances for us! Could you kindly let us know when the actual paper is released if possible and where we can access it for our oncologists? Much appreciated!

[Levanah in reply to busbee3]

Hello busbee3,

I will definitely let you all know when the paper is published. That will help our cause so much so I’m looking out for it. Much love. Xx

[Shqiperia]

Thank you 🙏

[Judith53]

Thank you so much for this update re availability of Trametanib and your hard work on behalf of us 'low graders'. Look forward to hearing when the paper is published and hope that this badly needed new treatment can be made available asap.

[Levanah in reply to Judith53]

You’re welcome Judith53. As soon as I hear more I’ll post again. Xx

[thomas62]

Hi Levanah,

I saw my Oncologist yesterday at the Christie in Manchester. He himself brought up Trametanib as a treatment I might be able to access at some point. I showed him a copy of Charlie Gourley's update to yourself. My Oncologist said that he'd had discussions himself with Charlie and thought that NICE would approve it because of positive results in the Trial setting and even though the numbers were fairly small on the Trial. He said there were some issues with the drug alongside side effects. I did have quite a moan during my appointment to the fact that we low graders heard a lot about PARPS, etc. for high grade but that there never seemed to be much out there for us low graders!

Best wishes. Gwen Xx

[Levanah in reply to thomas62]

I’m so pleased you’ve had such a positive consultation Gwen. It sounds like your Oncologist is on your side and proactive. I’m also glad you had a chance to offload... good for you darling! This does sound positive for us . Thank you so much for the update.

Loads of love xxx

[thomas62]

Hi Levanah, Yes I did feel he was on my side and wanted to do his best re. treatments to give me as much time as possible. I'm glad I off-loaded as the medics need to listen and hear us - that we have a voice. I was pleased to read the articles in the current Ovacome magazine because there are articles on Trametanib and other and recognition therefore that we low graders are out there and not in the ether. Now fingers crossed re. Trametanib.

Love Gwen Xx

[Maus123]

Fingers crossed one of these paths will lead to the mek inhibitor, Levanah. Glad there seem to be real options available. xx. Maus

[Solange]

So pleased you wrote to Prof Gourley. Very braveThank you for passing your info on. You deserve a gold star. 🎖Having had Melanoma as well I'm very interested. I read all about it in the Ovacome magazine and felt quite excited. Strange that they now realise that treatment for low grade and high grade needs to be different. I'm a low grader and hadn't realised it was rare.

Not that I'm moaning - it will be 13 years since my debulking op this coming Friday!! 🍾🥂

Sending love and best wished, Solange 😊

[Levanah in reply to Solange]

Hello Solange,

Thank you !

You’ll probably have been aware of Trametanib and it’s origins in treating melanoma too then? Ovacome did a great feature on Low Grade and I’m so grateful to them for that. It’s important that we are not forgotten seeing as we are a rarity. Fingers crossed Trametanib will soon be available to us all as and when needed.

You are doing brilliantly and long may that continue . 💜lots of love to you xxx

[Solange]

No, I hadn't heard of Trametenib before the article in the Ovacome magazine, actually, as it was decided to treat the OvCa which had recurred and although I have subsequently had another Melanoma afterwards, it was nowhere near as deep and didn't need so much treatment with skin grafts etc.

Thank you for your good wishes and the same back to you. 😊🤞