Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Trametinib
Is anyone taking Trametinib to treat serous ovarian cancer? My oncologist just suggested I start this treatment, want to talk?
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Is it chemo or immunotherapy? I am always looking for/interested in new approaches. Tell me what you know, thanks. And good luck
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@Sylviequebecbc
Your post was the first I'd heard of Trametinib but understand it is available for use as a maintenance drug for low grade serous OVC. Or at least that's how I interpreted what I read about it on the internet. I immediately called a good friend to let her know about it and it turns out our mutual oncologist put her on it last year. So she was already aware of it. It was a quick call so not much time to quiz her but it didn't work for her. I think after three or four months her cancer continued ot progress so they stopped the treatment and put her back on chemo. You might want to know though that Janet, my friend, is in her 7th year of treatment and other than a bowel blockage for which she had to have surgery last year she's holding her own quite well. She's headed to Sunnybrooke in Toronto soon to discuss a possible trial so I'll keep you in mind when she reports back with anything that might be applicable to you.
I wish I could give you more on the Trametinib front.1 -
@Sylviequebecbc
Hello. I am not on it but have been doing some reading regarding my own case.
One study that was done showed that Trametinib in combination with Letrozole had an overall better effect than either one on their own. Perhaps that might be worth discussing with your team? It was an article/study that was from this year.0 -
@Sylviequebecbc
Here is the link to the article/study.
"Trametinib versus standard of care in patients with recurrent low-grade serous ovarian cancer (GOG 281/LOGS): an international, randomised, open-label, multicentre, phase 2/3 trial - The Lancet" https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02175-9/fulltext
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Thank you so much everyone for your comments. @Fearless- Vol Mod: i am sorry to hear this didn't work for your friend, that is a shame. I do hope they find alternative treatments for all of us!
I am still waiting to hear if I qualify to receive this medication, and I will discuss the findings of the study with my team -( thank you @Strongwoman) .
@BellaDonna1959 To answer your question, it is an oral chemo like medication, and from what I read, it is used to treat some melanomas, lung and thyroid cancer.
Have a great day everyone!
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@Sylviequebecbc
Curious as to how you made out with being approved or not. Or if you started it and how you are doing on it?0 -
Hi @Strongwoman
I have been approved and will be starting next week. Had to have blood tests and a heart scan before starting, and they will courier the meds to my pharmacy and should arrive on Aug 10th.
Crossing my fingers that this treatment will work!0 -
We're all pulling for you @Sylviequebecbc. Good luck with the new treatment and please keep us posted.
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@Sylviequebecbc
Hello. I am wondering how you are doing on your new medication. What are the side effects like or have you had any so far?
Are you tolerating it well?
Curious as I am to be going on it as well.
Thank you0 -
Hi Ladies!
Well, I started Aug.10th on Trametinib, 2mg per day. I developed a skin rash (common) that started to bother my eyes, so a week later, started on an antibiotic and the Trametinib was held. It took 2 weeks for most of the rash to disappear, so they started me again but on 1mg (half), and still taking the antibiotic for now. Otherwise, going ok, don't notice anything else, feeling ok, just a slow GI ....but that can be managed!
Still hoping for positive results!0 -
@Strongwoman
When are you starting ? Let me know how it goes!1 -
@Sylviequebecbc
Thank you so much for letting me know. I was getting a little concerned that I had not heard from you and was hoping that you were okay.
I don't know when I am starting as I lost contact with my new Med Onc and called this past Friday to inquire what was going on. He is calling tomorrow so I hope to find out more tomorrow. If I do start on it, it will be in conjunction with the Letrozole (as per a new research paper March 2022). I know in the case of LGSC there is not a lot of research and I indicated that I am willing to "used" for research if he wants. My genetic material is in the lab currently being tested and if they find anything of importance (sometimes they find no info), we may switch my treatment protocol. So while we wait (unless he has change his mind), it will be the treatment protocol going forward.
I will most definitely keep you posted along the way and it also helps anyone else out there that is like us and has LGSC0 -
@Sylviequebecbc
Hello! I was waiting to post until I had talked to my new Med Onc with an update on the Trametinib. We talked tonight and he is quite hopeful, that we will have the approval (to be covered with no cost) of it and that I will be starting it next week. Only caveat is, I will have to drive a couple of hours to get it. No biggie. Would rather do that then wait any more for it.
We talked about side effects from it as well and I am aware from my reading what they are and also I will be chatting with you along the way too. I know it is different for everyone but nice to know someone else on it,
I will be taking it in conjunction with Letrozole until such time that my testing comes back. If it reveals anything, we will revisit it then.
So that is my update!1 -
@Strongwoman
hope all will go well !
Interesting that your oncologist told you to keep taking Letrozole, mine told me to stop Anastrozole while on Trameninib, although some readings showed that combining the meds has some positive results, I should ask my oncologist about that.0 -
@Sylviequebecbc
I talked and directed mine to a recent research article about the 2 together.
They were on board with it. Perhaps because they are telling me they are giving me less than 2 yrs with palliative care?
If you need help finding the articles let me know, I don't see the point in waiting to see if one works then the other when time isn't on my side and with the new research. In the meantime we await to see if my testing of my tunour in their lab turns up anything of significance.
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@Sylviequebecbc
Also, I indicated that since there is very little research put into LGSC that they can use me as research material if they would like.
Other than those 2 drugs, I don't believe I have read anything that is current as far as new trials etc for LGSC
I have a feeling I will yucky for a bit after taking it and hoping it may level out after that. Anything to hold off me getting a nephrostomy or having my kidneys stop working is what I am asking for.
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@Sylviequebecbc
Hello. Checking in to see how you are doing on the Trametinib.
I am still waiting to hear if I have been approved yet or not. It will be 4 wks this Thurs since last speaking with the Med Onc that is supposed to be getting it approved....fingers crossed I hear something soon.0 -
Hi @Strongwoman,
I am still taking it, no new side effects really, does make your skin dry so the onco pharmacist suggested I use Cereve cream, and it is helping with my dry fingertips. Hope you hear soon about the med, let me know!
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@Sylviequebecbc
Good to know. I was approved and start Trametinib on Nov 16th. Purely for scientific purposes (for both myself and Med Onc), we are waiting until my CT scan is done on the 16th. That way we can definitively say, this is when theTrametinib was started and this is what it looked like then. So when we do a CT scan down the road it will be compared against that to see what it looks like after taking both Letrozole and Trametinib.
I will keep you posted!
Thanks for checking in!1 -
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@Sylviequebecbc
Thank you for the tip on the dry skin. I pre-emptively bought cream for my body and one for my face yesterday. I bought the Cerave cream for body and something similar to that for my face at Sephora.
Going to try it out before my med just in case I react to it. Then I will know it is the cream vs the medication.
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Interestingly enough for those that don't know....this medication is kept refrigerated.
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It does- when they ship it to my pharmacy, it comes so well wrapped in cold packs and bubble wrap, it resemble a frozen ham!1
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@Sylviequebecbc
Good Day. I have now been on Trametinib in combination with my Letrozole for 1 wk now. Here is my list of things I am experiencing thus far:
Fatigue (with or without rest)
Restlessness
Mild Headache
Abdominal Pain Off/On
Nausea Off/On
Peripheral Neuropathy returning in my right hand
Feet very sore when walking on them
Either a rash or acne starting on my chin (mainly), around my nose and chest area
That's my list so far and will see what happens as I continue on with it. I know as I take more the cytotoxic level increases as can symptoms. I see my regular Oncologist this Friday and my Med Onc speaks with me on the phone next week.
Still, it's the only option out there so far for us LGSC recurrence gals so I trudge forward.0 -
@Sylviequebecbc
I am writing to let you know I am off of Trametinib as of Thursday last week. The rash that came up is so sore I can't handle it anymore. Even wearing a face mask hurts it and causes bleeding from the rash. I also found I was starting to "hide" due to the way it looked and made me feel. It is not the way I want to live life.
I spoke to my Med Onc that prescribed it last Thursday and he agreed we have to get the rash under control. I asked to leave everything regarding Trametinib until the New Year and he concurred. We may rechallenge it at a much smaller dose and different timing of dosing but it is up to me and my decision. I personally can't make that decision without seeing how long it takes for the current rash to go away. I want a return to my norm where I am not applying cream to my rash and taking an oral antibiotic for the rash as well to see where my head is at. I wish you the best of luck on yours and hope it works for you. This is so new of a drug for us that any outcome is possible in efficacy and side effects and it is only based on that, will the science be able to go forward to determine if it will continue to be an option in the future to treat this disease.0 -
Hi @Strongwoman
So sorry to hear about your side effects! I too got a rash, terrible ! They stopped me for 2 weeks and put me on antibiotics and cream, which both helped, then started me on a lower dose, and kept me on antibiotics so the rash is better, but now I had to stop again because my lab work was abnormal, my CK was too high, so I will have another blood test in a few days.
I also found out today I have a PET scan on January 14th, so fingers crossed!
Have a wonderful Christmas, stay stay strong!0 -
@Sylviequebecbc
Thank you for your feedback it does help. I will have a conversation with my Med Onc about rechallenging it (hopefully soon) and see if it will align with myself or not. I have a long list of antibiotics I can't take so I am hesitant to willingly go on one long term for the sake of a medication. I want to ensure there are some options should I run into trouble with an infection down the road.
I will keep my fingers crossed for your test results and what the high CK level means/doesn't mean in conjunction with that.
You have a wonderful Christmas as well. I am feeling better being off the drug but still have my "melting" moments now and then.1 -
@Sylviequebecbc
Good luck with the PET. I will also keep my fingers crossed for you. And hope they can keep you on the right medication course with adjustments to doses and extra support for side effects. Have a wonderful holiday season.
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@Sylviequebecbc
Thank you for your continued feedback while you are on this drug and off it. It is helping me when I speak to my Med Onc. We discussed you (no names) being on a pre-emptive anti-biotic when you were re-challenged as well as some info I had read of some drug (can't remember the name) of what people with melanoma take in conjunction with this drug so they can see if either or none of those are options for myself. I don't know those answers yet as they are going to do some research on options etc before my visit in January to discuss whether I will or won't go on the trial drug again. All I do know is that they said that Trametinib does not act like other drugs and it will take 4-6 wks to return to normal with only being on it for 2 wks. So, I figure the longer you have been on it, the longer it will take to leave your system.
With that, I will say, I will be thinking of you and your upcoming PET and results going forward. I have never had a PET scan but hear of lots of ladies that have.
Enjoy however you celebrate the holidays and stay safe with the weather!0 -
Here to update re: Trametinib
Saw my Oncologist in London yesterday and after showing him the pictures of my face rash after just 2 wks on the drug, he admitted that it is the worst reaction he has seen yet. We agreed that at this time, this is not the drug for me even at a lower dosage. If I went on a lower dosage, I would more than likely get a rash again and it is one of those things that would not go away. Since I am allergic to most antibiotics, it isn't wise to go on Trametinib and an antibiotic for a prolonged period of time in case I did get an infection down the road and then they would be even more limited in what they could administer.
Sadly, this is not the drug for me but I do hope that for others out there that it will work.0
