Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
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).
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).
Clear cell ovarian cancer recurrence
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@Lorraine5845 have you gone for your third immunotherapy treatment yet? As well, do you know the name of the drug? Is it Keytruda perhaps. I've done some reading and some studies have shown greater results when more than one drug is given, like 2 immunotherapies. When you mentioned your score was more than 1 I think that was the PD-L1 score, they rate it as less than and greater than 1%.
I think there for sure is a plan c if and when we clear cell ladies may need one. I was reading about gemcitabine and studies have shown it may be a better fit for clear cell. I asked my oncologist and she said yes!0 -
I did have my 3rd treatment and yes it is called Keytruda (and right now only taking this ). My bloodwork was ok to proceed. But my ca125 went up to 206 (it’s been going up since I stopped chemo). Not sure what to make of this …they did tell me it takes longer to act. I didn’t speak to my oncologist since receiving my ca125 results. Left him a message let’s see when he calls me back.0
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@Lorraine5845
I was on Keytruda plus a clinical drug. I started treatment in May and my CA125 trended up until July (quite significantly) then started to trend down until Sept, then up again. Continued treatment to Oct then deemed not working for me. There was another woman in my centre on the trial who had more positive results than I did. So true that everyone responds differently. Hang in there.0 -
Thanks for the info. It’s just hard to stay positive these days while going thru treatment and having abdominal pains on a daily basis.0
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@Lorraine5845 So hard isn't it? Do you know the origin of the abdominal pain? If it is due to diet, do you want a copy of the low residue diet I was given to look at to see if it may help? Or do you think this is a side effect of something else? Let me know.
What is the biggest you feel is making you feel you are unable to stay positive? Perhaps we can help you with this. Let us know when you are ready and if you are ready to share. There are so many emotions that go along with treatment and then there is the anticipatory grief we all go through as well. I feel for you and am here for you...you just say...when.
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@melissa Your research and your response from your Oncologist sounds promising should you need another round of treatment. That is wonderful. Here is to hoping you don't need it but if you do that it is successful. 0
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Yes if u can share a copy of the low residue diet maybe that can help. Honestly even eating is causing me pains these days. You know every pain I feel I associate to the cancer growing (might not necessarily be that but that’s what goes thru ur mind)0
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Yes, I do know what you mean and I, too, was experiencing abdominal pain daily. I also thought it was due to growth and progression of disease. Since being on this new 'diet', I have not had it and so much so that I have stopped taking my mid-day pain pill. So, something is working.
I am in the mid-phase and will be for another 3 wks. As I introduce food, if I feel it isn't sitting right inside, I go back to the liquids until I feel it has passed. Meaning either the feeling itself or after having a bowel movement. I have also been finding that the Smooth Move Tea very helpful. I take mine during the daytime and usually about mid-day. Fingers crossed it continues that way.
Here it is and I wish you much success
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Hi @Lorraine5845 thought I would check in to see how you are doing. Let us know when you are ready to share.
Thinking of you...🤗💕0 -
Hi @Lorraine5845 it's been a little while just read something on immunotherapy and thought of you. Here to listen if you feel like sharing0
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Yes it has. I haven’t been feeling very well since my 3 rd immunotherapy. My stomach is swollen and abdominal pain and little energy and zero appetite . But funny enough my blood work is good and my ca125 went down for the 3rd time in a row to 122. My next scan is March 22 so we shall
see what that shows. Hope u are well0 -
@Lorraine5845 I am sorry to hear you have not been feeling well. What have or can you do to mitigate the zero appetite? If you aren't eating or unable to, the energy levels will definitely plummet with it. Can you do ensure or boost or something of the like to help with that? It is tough to want to move when one is swollen and has abdominal pain. From my experience, I tried to move a bit despite it. I may not have gone far or long but attempted to move around a bit a few times a day to keep movement up. Keep up your good work.
Glad to hear your CA 125 level went down again. That is promising news. Side effects can be hard but when one hears of a positive outcome like your level dropping, it can renew some hope and faith in the treatment. Sounds like it means you are on the right path to fighting this. Baby steps. Build strength slowly.
Take care of you. 0
