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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).
Clear cell ovarian cancer recurrence
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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
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Hi @Lorraine5845 I thought it was time to check in to see where you are at. It has been awhile since you posted and you had a lot going on then. A would not hesitate to say a very 'emotional and mental challenging' time. Are you now finished your chemo cycles? What are things looking like currently and how do you feel about it? Are you doing ok or anything you want to discuss, vent, cry/laugh at? We are here for you and I truly would like to know where you are at with it all. I sit here with my headphones on listening to "Hopeless Romantic" on Spotify which is mainly classical takes from different shows like Little Women etc. Loving it and it sits in the back ground. Currently Fur Elise is playing which one of my favourite pieces. How about you, do you have a favourite? When you can, drop a line and let us know how you are doing. I care....
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It has been a while, for the benefits of others….i did 6 rounds of chemo (carbo caelyx) but the last ct scan results were mixed and not sufficient. It showed some shrinkage but other new tumours and some existing ones grew. So I have started immunotherapy instead called keytruda (pembro)… so far I have done only two treatments so hard to tell if this will work. Back to dr this week for bloods so I shall see what they tell me. They had successful results on one other patient with clear cell OC.0
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@Lorraine5845 So hard having the mixed results and to decipher what it means and how one feels about it all. How are you feeling on the Keytruda? Any notable side effects? Minimal side effects? Hoping you will post about your newest blood test results when you are ready to share them. I will be thinking of you and crossing my fingers that this immunotherapy is working for you. Take care 0
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@Lorraine5845 I as well have the clear cell subtype. If you feel comfortable answering, have you had your original tumor tested for mutations? My Doctor recommended I do so right from the start as results obtained can potentially open up treatment options.0
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To be honest I know they tested my original tumour (from 3+years ago) to see if I was eligible for immunotherapy and I am. That is why I am on this treatment now. Ill
have to ask at my next apt to see if that showed them any mutations. Thanks for the feedback0 -
@Lorraine5845 one last question, I know 3+ years ago is a while ago but do you remember the doctors telling you what made you qualify for immunotherapy?0
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For me this is a reoccurence. The testing to see if i was eligible for immunotherapy was actually done back in March 2023. But they told me they had my old tumour (i guess freezed dried ) which they tested. Pathology came back to say that my score was above 1 so it made me eligible. You know that’s all they told me and I just started immunotherapy so I’ll have to ask them again. Sorry not sure this is of any help to you.0
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@Lorraine5845 no worries, if you remember to ask I would be interested to know. I know my doctor told me she is reserving immunotherapy for me if a recurrence develops ( maybe that means I qualify?) Plus I have a mutation. Not too many of us with clear cell here. Can I ask a personal question? What stage were you diagnosed at? Please disregard if too personal. Fingers crossed for an excellent response to immuno for you.0
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My first occurence I was stage 1c , I got operated and had 6 rounds of chemo (carbo +taxol) and all
was good for almost 3 years. I asked to check my ca125 and it had gone from 10 to 23 and I sounded the alarm ( even if normal range is till 35). Ct scan showed two lesions on the omentum (lining near liver) ..6 rounds of carbo caelyx ( and so so results ). They were also keeping immunotherapy as plan b. They have had a previous patient with clear cell respond very well but the important is that I respond. You are right not many with clear cell. Dr told me it’s more concentrated in Japan. I don’t know if they have a plan c. Honestly sometimes I’m scared to ask the questions because not sure I will like the answer they give me0 -
Asked the fellow (new guy not my usual dr) and told me I don’t have a mutation. But definitely ok to get immunotherapy but obviously doesn’t mean it will work. Today they spoke to me about the possibility of tumour sequencing (not sure if the hospital picks up the tab or not). So for now blood came back ok to go for my 3rd immunotherapy.
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@Lorraine5845 Sounds like some conflicting info for you. Where do you sit with it all? Might I suggest asking the question as to who does the testing, cost and if it is covered or not? I did when I went to London and they were looking to do it. They suggested both to me. One they do themselves and through funding at the hospital due to it being a research facility and one that I could do on my own and what the cost of that was. They left the decision to me. When I was inquiring, the panel was larger that I could do at my own cost but the outcome (in my situation) would probably not result in anything much different. Knowing that, I went with what they would do as they cover most of the major ones. It is whatever sits well with you and you want. You be confident in the decision you make and whatever your situation is. That's the long and short of it.
Forgive me if I asked this before, do you mind sharing what immunotherapy you are currently receiving and will be going to your 3rd treatment shortly?
How are you feeling in general? What can we do to help support you through this? Let us know. 0
