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OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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).
Platinum resistant/refractory chemo & chemo combos you have been offered please
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My CA-125 has been steadily going down (lowest was 73) on the Avastin/Taxol combo then it jumped up 120 points last week to almost 200. I was fighting a gastrointestinal virus and truly believed my body was fighting more inflammation and this likely caused the jump - but of course there is always the worst case - progression - lurking in the back of my mind, too. Yesterday was a nail biter as I waited for the next CA-125. Thankfully it's back down 60 points to just under 140 - phew! But I asked what was next for me if it continued to rise. My oncologist (CV Hospital in Ontario) said Caelyx most likely. I said 'paired with Avastin, right?' He said OHIP will likely not approve that combo. (But he didn't think they'd approve my Avastin/Taxol' and surprise- they did. Doesn't hurt to request it.) I told him that many of the posts I read on ovariancancer.org describe different combos with Avastin and some women seem to be on their 4th or 5th chemo treatment option with or without Avastin. He indicated that if Caelyx doesn't work, we can look at trials including one at PMH that is testing Folate Receptor Alpha and looking at Elahere. I felt that I wasn't being offered all that much in the way of 'next steps' regarding chemo options. I reminded him I also had the two potentially targetable mutations revealed by my Bio Diva study. He said he would take a look. I would love to know what chemos platinum challenged women have been offered, if Avastin was approved to be used with them and what province your treatment was offered in. Results too if you don't mind sharing. Please help me present him with ALL the options b/c he isn't really a cutting edge kind of guy - I've stayed with him because he does fight for me and he listens respectfully to all my suggestions and questions. Thanks very much - I always like to have options in my back pocket!
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Hi @BellaDonna1959 my mum was offered a combo of Caelyx/Avastin as her next chemo treatment, she is currently on a parp and doing well, but that will be the next line of treatment, if things change. Hope that helps1
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@SM222 is she in Ontario?0
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Hi @BellaDonna1959 yes she is in Ontario, she receives treatment at PMH0
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Thanks good to know.0
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@BellaDonna1959 Can you clarify for me what the question is that you are seeking an answer to? There are a couple of ladies who are either looking into or are in the process of looking into the Elahere study and there are 2 different posts about it up under Discussions on our site. Perhaps connecting with them would assist you. From what I read, they do take their own tissue sample under this study in order to proceed going forward. You say, "he isn't a cutting edge kind of guy" but he was aware of Elahere at PMH. It is fairly new to my knowledge. It is so difficult as well. I find that some know and are "up" on new trials etc and others have so many different 'types' they are dealing with that they can not possibly know everything about them all. I feel the best you can do is research and look into different combos, type in the search bar here to see if any ladies have posted about them previously and start including or excluding them off your list. Good to know whether they are a Phase I, II, III trials or not as well.
It is good that your CA 125 levels are trending downwards. You may be correct in that the inflammatory nature of what your body was going through at that time was what may have elevated that once. It is my previous experience that they usually look at trends over about 2-4 months before they jump on deciding on which direction it is headed. There is a lot of 'wait and see' in all of our journeys. For us, sitting in that wait, it can feel like an eternity and we can become impatient (understandably) as we wait for answers, for information etc. Another good source to check information about trials etc is pubmed.org articles. They are trusted sites to my knowledge and I often use them when looking for information pertaining to my own illness.
I feel that there are a lot of options left for you out there that would be covered under OHIP and may be viable options as well. When I was searching as of late, I wrote down all the trials I knew that were going on, then started looking up the Eligibility criteria to see if I could still continue looking at it as a viable option. By doing that it narrowed my search of 4 down to 2. Since then, I believe I am down to 1 possible option now. With you being HGSC and from reading online here and elsewhere, I don't believe your well of possibilities has gone dry as of yet.
I, personally, asked my Med Onc about the BOUQUET trial and to get in touch with my GYN ONC I had down in London. This resulted in the GYN ONC suggesting a referral go right to PMH where the trial is being done. I now sit and wait to see what unfolds next. In the meantime, I am back to journaling everything I do and eat and have resumed my Turkey Tail Mushroom Tea as well. It is difficult to wait but as I do so, I fill my days with things that I want to get accomplished in case I am accepted and decide to go through with a trial. I figure I might as well do them know as I may be unable to do these things I want when I participate in a trial.
I hope some of this banter assists you and your decisions/research going forward.
Take care of you.
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Hi @BellaDonna1959 Thought I would check in to see how you are doing and feeling. Let us know when you can. Take care 0
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Having a scan at the end of Jan to see if I'm stable or if the cancer is growing and spreading. Fingers crossed.0
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This time can be filled with a lot of emotions both good/bad as you away your scan. Do your best to fill your days with activities @BellaDonna1959 to keep your mind going down a rabbit hole. It is easy to do as our minds are very powerful. Need any helpful hints to help fill your days or do you have lots to do? Let us know. I will be thinking of you and waiting to hear your results when they are ready. Remember we are here for you no matter what so if you need to blow off some steam, go ahead......
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@BellaDonna1959- just saw your post about chemo drugs combinations - I’ve developed resistance to platinum based drugs after 3 rounds over the period of 2018-2022 and as of June 2023 has been taking Caylex/Avastin combo. This combo brought the disease under control - stopped it from progression and so far, it’s been keeping me stable. I live in Ontario. I hope it helps.1
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Just checking in - thanks for all the suggestions. Stable for now but waiting again for the next CT scan. CA 125 is stable in the 60-80 range.0
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Stable is good. When is your next CA 125 test being performed? You now have some other info in your tool box to discuss with your Oncologist when the time is right to see if anything suggested would fit your particular case. In the meantime, go enjoy what you can.
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