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 ([email protected]).
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 ([email protected]).
Clear cell ovarian cancer recurrence
It seems clear cell is a rarer form of OC. I’ve gone thru operation and 6 rounds of carbo and taxol and was fine for over 2 years. Now it has reoccurred but no possible operation and my first two rounds of chemo ( carbo + caelyx ) has not reduced my ca125. Next step is doing immunotherapy pembrolizumab (keytruda) for possibly up to two years. Has anyone been given this treatment? It seems it is a newer type of treatment for this type of cancer. Looking to see if anyone else has had this treatment
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@Lorraine5845
Welcome and yes I believe that is true. How are you doing with your news and possible treatment outlook?
I believe that @GloHo is receiving this immunotherapy as well. I may be incorrect but believe it is in conjunction with the Artistry 7 trial. It may be best to connect and ask if she has any insights for you. If you also look back at her message threads, they may hold a few nuggets of info as well. I know she has been logging her journey very thoroughly since the onset and commend her for sharing her journey with all of us.
I wish you well going forward and if you would like to share "what happens next" for you and your journey, I, for one would be interested in reading it.
Take care of you.0 -
Thank you.0
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@Strongwoman Thanks for making this connection.
@Lorraine5845 Sorry for the delay in getting back to you...I have had a bit of a crazy house these past couple of weeks. Am feeling good, so welcome the crazy-ness though!!
I do receive Pembrolizumab in addition to my trial drug on Day 1 of my 5-day cycle. Given that I receive both drugs on Day 1 followed by the trial drug on the remaining days, I'm not sure that I can give you a clear indication of the effects that Pembrolizumab is having on me. As far as side effects, I get the chills and aches each evening throughout my 5-day treatment. So, it is difficult to say whether it is Pembrolizumab, the trial drug, or both combined! In addition, I have had fluctuations in my liver enzymes and neutrophils...but they bounce right back to normal following treatment. Again, it is unknown if this is a result of one or the other or both. On a positive note, my first CT scan showed no new growth, no growth of existing, and some reduction...classed as stable. I did have a significant decrease in my CA125!
I'm not sure this information is going to be too useful for you but I hope that if you do experience something similar, you know you are not alone and can reach out at any time to share your experience and/or ask more questions. Always remember that we are all different and our experiences often vary.
These new drugs show a lot of promise. I wish you all the best as you move into this next phase of treatment.0 -
Thank you. For now I’m doing my 3rd treatment (carbo caelyx). I guess it can’t hurt since I’ve been tolerating it well. As for next steps I need a ct scan and if it shows progression it will be immunotherapy (pembro) but they didn’t mention if it would be in Combination with anything else. Not sure if you have clear cell ovarian cancer or not. It seems it doesn’t respond well to chemo. Let’s wait and see0
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@Lorraine5845 I was diagnosed with High Grade Serous in 2019. Glad to hear you are tolerating carbo/caelyx and I hope it is working for you. Good luck with your upcoming CT. One step at a time...0
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thank you so
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@Lorraine5845 Hope you are doing well with treatment. Wondering how you are doing and if you want to share any updates as to how your treatment is going and how you are feeling.0
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I just got bad news on Friday that my carbo caelyx treatments are not doing much. They have been stopped after 3 treatments. My last ct scan shows progression of the disease. It seems clear cell is a rarer type and chemo resistant . Next it’s either a clinical trial or immunotherapy pembro. Waiting to see the doctors. the team seems to have different opinions on my case0
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@Lorraine5845 Oh Lorraine, how are you doing with the news. Clear cell sounds similar to LGSC as far as treatments go. I feel for you especially when hearing of the news then processing it. It may be difficult but do your best to keep yourself occupied, one day at a time and as much as you can your frame of mind in the positive. I am saying this from experience. It is very difficult to not let our minds wander and I also acknowledge that they will wander, it happens. When is your appt with the doctors? It will hopefully give you some more answers and hopefully some collaboration as to they came to those decisions.
We are here for you whenever you need.
My thoughts will be with you along your journey.0 -
Next apt sept 12 and more blood work and I hope the team can come to one decision. I love when they ask me what I want to do like I was a doctor. Sorry this news is slowly sinking in when two weeks ago my dr was optimistic that chemo was working0
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@Lorraine5845
Do not be sorry. It is understandable as to how you are feeling and why. Be gentle with yourself. It is hard news esp if you were under the impression it was improving.
Soon I hope you will have answers0 -
thank you for the encouraging words0
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@Lorraine5845 I will be thinking of you tomorrow at your appt. If you feel like sharing at some point in time, know we are here for you.0
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Ok thank you. I will be happy to share if it can help0
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We’ll a little update on my last apt. They had cancelled my last chemo saying it wasn’t working because my ca125 had gone up to 271 (sept 1). This week my ca125 went back down to 143 (sept 12) and now they are putting me back on the same chemo (carbo caelyx) for round #4. Not sure why my ca125 is going up and down. But for the moment no immunotherapy just yet . And it turns out I’m not eligible for the clinical trial as I don’t have the gene PIK3CA (Inavolisib +paclitaxel
Study CO42800). New chemo date sept 18
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@Lorraine5845 Your post screams FRUSTRATED! Am I correct. As for your CA 125 levels, Fearless said "it is not the number themselves but whether they are continually trending upwards or downwards." I do recall quite a few ladies on this site having fluctuating numbers during treatment. Have you asked your Oncologist about it? It may put your mind at ease.
As I look at your post, you will have had your appt yesterday. If you would like to share how it went, I would be interested in listening. Are you aware of any other studies/trials that you may be eligible for? Do you have a clearer picture of where things are headed?
Do your best to enjoy some sunshine today if you have it where you live. Falls are lovely with our overheated bodies enjoying the cooler nights and snuggling up in sweaters at other times.0 -
I’m not aware of any other trials for now. If chemo can work then that would make me happy . Yes my treatment was yesterday and so far i have tolerated them well.
Nov 29 2023 ca 125 10 (when I was stable )
March 3 2023 ca 125 23 (family dr checked it at my request)
June 9 2023 162 (before 1st chemo )
July 7 2023 261 (after 1st chemo of June 12)
Aug 4 2023 264 (after 2nd chemo July 10)
Aug 16 2023 178 (after 3 rd chemo Aug 7 -)
Sept 1 2023 271 (chemo got cancelled)
Sept 12 2023 143 (dr put me back on chemo 6 weeks since last chemo )
Not sure what kind of pattern this is exactly
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@Lorraine5845 Have they changed your chemo cocktail or has it remained the same? I am thankful you are tolerating the treatments thus far. Reach out to your team if you start experiencing adverse effects. They usually have something helpful for you which may include some drugs to counteract your reactions.
As for your numbers, I believe (kindly correct ladies if I am wrong) that numbers do fluctuate during treatments and is normal. So that would mean looking at your numbers it would be within the norm during treatment. What has your Oncologist or team said about it or have you asked?
We can get caught up in watching and analyzing so much of our treatments that we also forget how to be. Hoping you are attempting to enjoy pockets of time when you are well enough and resting when not so well. On days I felt low I did my best to find something funny to watch on TV to get some of those pent up emotions out. It helped especially some ridiculous comedies. Clarkson's Farm was one that always made me laugh. He goes from racing cars to buying land and thinks he will be a farmer and knows nothing about it. British as well so scenery is beautiful.
Perhaps you will find comfort with this post, your mind will ease and your treatments continue with minimal side effects. Take care of you!0 -
It’s the exact same chemo carbo + caelyx that they put me back on. I did ask about the fluctuation to my chief oncologist and he is the one that put me back on it again.my next apt is Oct 10 so i think I need to go apt by apt. For the rest , I’m usually tired the first week and that’s about all I have had. Now of course it’s cumulative so I’ll wait and see what comes next.0
