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!
Mirvetuximab soravtansine (MIRV)
Hello. Has anyone out there tried to obtain treatment with Mirvetuximab soravtansine (MIRV) in the USA? If so, how did you go about it? Currently, in Canada, it is only available by participating in drug trials. But one has to qualify, and while I have tested positive for the folate receptor, I don’t have what is considered “measurable disease”, (nodules and pleural effusions in the lungs don’t qualify). My understanding is that MERV is better than the standard of care, which for me, after a third recurrence and three lines of chemotherapy plus PARP inhibitor would be gemcitabine.
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Hello @PaulineJ How do you feel about not being able to participate due to not having "measurable disease"? I did look this up as I had not heard about it before. I believe from what I read it is in a Phase II trial? Is that correct? I could not find what "measurable disease" means in this data. It would be interesting to know what they mean by that.
I did find this info from a link regarding it. Here it is:
"More patients on mirvetuximab soravtansine required dose reductions due to TEAEs (34%) vs those on chemotherapy (24%); dose delays occurred in 54% of patients on each arm. Treatment discontinuation rates were 9% with mirvetuximab soravtansine vs 16% with chemotherapy."
It also stated that blurred vision that was reversible is in 41% in all grades of OC.
If you did meet all requirements, do you know if it would be a fairly smooth process to get approval for it here in Canada?
It was a very interesting read for me, nonetheless and thank you for bringing it to the attention of everyone on the site.
Let us know how we can support you on your journey.
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Hi @PaulineJ How are you doing? How are things going with moving forward with this trial? Any movement at all or have you encountered a 'roadblock'? OR Have you had to return to the standard of care treatment, Gemcitabine? If so, how are you doing on it? How are you doing in general? Would love to hear an update and how you are making out with it all. Hoping you feel up to it one day to do so.
Take care
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Hi @Strongwoman I am not eligible for Canadian trials that include mirvetuximab soravtansine. Either I have had one too many recurrences/lines of chemotherapy, and/or I don't have "measurable disease." Yes, it is a frustrating situation. I am still on Avastin (bevacizumab) as maintenance therapy, having completed six cycles of Paclitaxel in combination with Avastin. My CA125 is rising slowly, as are my pleural effusions, judging by the difficulty I am experiencing in the last two or three weeks swimming in the pool. My oncological team recommended I continue on Avastin until the CA125 number spikes and the PE are evident in the x-ray and having a real impact on my day to day living. I am due for another x-ray on the 16th. I don't want to rush a change in treatment because once the doctors establish that Avastin is not working I cannot have it again. My oncological team and I haven't discussed the next move, but I will discuss with them going down to the States to see if I can obtain treatment with mirvetuximab (or anything else) on compassionate grounds. There are not that many options left here, north of the border.
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@PaulineJ I am so sorry to hear all this. There is so much in your message. Disappointment. Hope. Fruatration. Fear. I don't know where to start.
I understand totally about the "nowhere to turn to, if this isn't working". It's tough to wrap one's head around. I have sat there and it is a lot to process. Sounds like you are almost there and almost not. Like you may have a Crack in a door or window left before it comes to that. I hope it is that, a Crack that slowly gets bigger for you and opens up that window or door for you and gives you options. That is the HOPE.
The DISAPPOINTMENT is finding out that you aren't eligible for whatever the reasons are.
The FRUSTRATION is the waiting.....the pleural effusion and spikes in CA 125. Knowing all the while the changes are occurring and doing your best to have faith they are providing the best approach/treatment for you.
The FEAR comes with the what next "if". All normal responses to it all in my view.
It sounds like you are determined and will seek out what you need or feel is available to you either here or elsewhere. It is that grit that gets us through all the rest of it.
One wonders why "compassionate grounds" aren't offered instead of us seeking them ourselves.
It's difficult to see and experience the changes in our bodies both knowing what they are and what it may be leading to. I feel you are doing well and have a good handle on it all.....emotions are separate from this. They come with their own baggage and hit any time they want.
In the meantime, enjoy the things you love even if it is shorter duration or amount of time spent doing it. It is hard when it has to be given up totally and is a process of and in itself. Keep driving forward the best you can. If I hear of anything that can help you achieve your goal, I will pass it along. Please feel free to update, vent, laugh/cry or whatever here in a safe space.
I am thankful you reached out and updated us. I truly feel for what you are currently going through. Sending virtual hugs.
Take care 0 -
Is anyone out there currently receiving Mirvetuximab (Elahere) in the US? If there is someone, are you getting it through the the drug company Immunogen, their compassionate access program or private pay.
Any information would be really helpful.0 -
@hope2022 I am keeping my fingers crossed that you receive some feedback regarding this. If you learn anything, will you post it as well in case others would like to explore it as well? Thank you.0
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@hope2022 @PaulineJ I wanted to check in with both of you to see where you are at with this or an alternative line of treatment that may have been suggested. How are you both doing in general? If you can drop a line sometime to update, I would appreciate knowing how you are both doing.
Take care of you. 0 -
Hi @Strongwoman I decided to pursue the standard of care here in BC, as the potential cost of treatment in Seattle was prohibitive (upwards of $440,000 in Canadian dollars for a full course of treatments). I would have had to sell my house (I am not in a position to raise money any other way). The side effects, particularly eye toxicity, were also an issue.My oncologist had also suggested I test for the HER-2 receptor in order to pay out of pocket for Enhertu. But I tested negative for that receptor.So, in the next week I will be starting chemotherapy with Gemcitabine.I am doing as well as can be expected under the circumstances. I have moderate pleural effusions, ascities, and the CA125 reading keeps going up. Hopefully I have a response to Gemcatabine. Other options incude another run at Paclitaxel (third time) or maybe Topotecan.0
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Hi @PaulineJ Thank you for updating us! Wow! The cost of that treatment in Seattle is outstanding! I don't know that I would be able to afford that either. It does astound me the cost of certain things and especially when looking at the USA. It makes me thankful for the healthcare system we have in Canada as I don't know if I would have been able to afford meds and hospital visits if I didn't live here.
So, this week is the Gemcitabine week? I do hope the side effects are minimal and manageable for you.
I, too, have been informed that Paclitaxol may be an option for me. They definitely don't want me on it prior to surgery is all I know for sure. I will see what the surgeon has to say a week today about my condition and where we go or don't go from there.
Like you, my CA 125 level keeps climbing. Mine seems to go up between 5-10 points for 2-3 months then spikes over 20 points for a couple and then rinse, repeat. I have no idea why it does it and like you, have accepted it.
You sound like you have a good attitude towards everything and I find it inspiring. I do hope you keep us updated as you go along with your new treatment. What you post may just help someone else who needs it.
Take care and chat soon 0
