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
Comments
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Hi @Strongwoman and @Fearless_Moderator
Well, I had my PET scan and saw my oncologist a few days later: Trametinib didn't help, the cancer grew. My CA 125 is over 1300, so for now, they stopped my meds. I need a scope done asap to find out why I bleed when I have a bm, which lasts for 3 to 5 days each time, had 3 episodes so far. 😒
They said we will talk about what to do next after they get the scope report, so we'll see. I feel a little gutted....I told them I will continue looking at alternative healing methods since they said they have nothing new for me now, and that my cancer will continue to grow and is incurable. They may still operate, but only if they are pretty sure to get all the cancer out. Hoping for the best...0 -
@Sylviequebecbc
Ugh! What a tough spot to be in and go through.
How are your iron levels with the bleeding?
Are you linked in with a palliative doctor?
You mentioned you are "gutted". How are you doing with the information? Supports in place?
I hope they come up with an answer for you as well. I will keep my fingers crossed.
Update us when you are ready.
Know we are here when you need to vent.
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Hi @Strongwoman
To answer your questions:
My iron levels are ...do not know
No palliative doctor yet: I am still optimistic, looking into a radical treatment called the Gerson method, have you heard of it?
Thank you so much for your support, 💕0 -
@Sylviequebecbc
I have not heard of that method. When I did look it up, I don't believe I would be able to do it. It involves enemas and I had a bowel anastamose and wouldn't want it to affect it at all.
I wish you the best with whichever avenue you choose to go and for the best outcomes.1 -
Hi Sylvie- is trametinib paid by your insurance and/or Novartist? Thanks0
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@Belouche1 Hello and welcome to the group. I am in Ontario and was on Trametinib briefly and had to go off it due to a toxic reaction to it. I had to get approved for it to be covered and the Gyn Onc applied for it.
@Sylviequebecbc is in Quebec and not sure what her process was.
Hope that helps.
Let me know if you have any other questions about it. I would be happy to field any that I can.0 -
Thanks for your reply- did you havé to pay it when you tried it?0
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@Belouche1 No. The application went in first to see if it would be accepted or not. It is a very expensive drug.
I am assuming you have LGSC if you are asking about it. I am happy to discuss anything you are curious about. Even including side effects. I understand everyone is different but have some advice regarding the skin rash part if you go on it.
Has your Oncologist discussed going on it or are you bringing it up to them? I brought it up to mine before they had a chance to but had a very interactive conversation about it as I had done my research on it. Let me know what you need. My experience and knowledge is yours to pick away at....0 -
Thé doctor told me it would be a good medication for me and would probably be paid but just called me tonight to say no not paid by thé company and would cost me $5000 per month so maybe i should go chimo (taxol and avastin) instead - i don’t undertand why he changed his mind - i am very confused now - should i start the chimo in the meantime or start paying for trametinib-0
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@Belouche1 I am sorry to hear that. Did he say why it wouldn't be or that you weren't a candidate? That would make more sense.
If you are Low Grade Serous, have you had chemo before? If so, why are they recommending it again? I feel the amount he quoted you is conservative for the Trametinib as well.
If you can answer those questions (and feel comfortable doing so), I will be better able to help you.
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