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I'm looking for insight and experiences from anyone who has recently had radiation treatments. I'm having a phone consult this week with a radiation oncologist to discuss this as my recent CT scan shows a growing lymph node in pelvic area. 

Dx fall of 2019, chemo from Dec to May 2020, debulking surgery March 2020, declared NED and have been on lynparza since. CA125 has been climbing, it's now over 700.

Worst of it is that I feel great, so bit of a struggle with this. 

Thx!

Hello

I did a search about radiation in the discussions and it seems yours @Readersmaven is the most recent one I found.

Unfortunately I see no one replied :( 

I have a consult July 8, 2025 for Radiation consult for para-aortic lymph node where the Clear Cell Ovarian Cancer has returned in my body.

What happened for you 4 years ago @Readersmaven? 

@DiamondGoddessYYC - as clear cell patient you may want to discuss possibility and effectiveness of immune therapy with your oncologist - PD-1 antagonists such as pembrolizumab. While these drugs are not really successful in ovarian cancer, all trials have been mainly done in serous cell It looks like that clear cell better responds. Just an idea.

Thank you @Tanja!
I will send this in to my Gyne-Onc to ask him about this.

Hope you're doing ok?

Appreciate your insights 

@DiamondGoddessYYC. I am not doing immune therapy right now- no need yet. I am Clear Cell (5% of all OC, more in Asia) diagnosed Jan 2023, R0 surgery in Feb and the 6 cycle Carbo/Pacli + Beva, interrupted by acute bowel obstruction - adhesion. Recurrence of small tumor in spleen in Feb 2024 after 7months. Surgery in July 24 with splenectomy - no other tumor site. Another 6 cycle of Carbo/Pac, finished in Dec 24. So far tumor free. Argued for another Bevacizumab round which I am still getting. My argument is that serous cell people get PARPinh as maintenance therapy but clear cell patients get nothing?
With recurrence I got nervous and went for 2nd opinion to Buffalo. They had several clinical trials based on immune therapy which they were convinced was the next best treatment option for clear cell- ideally in combination - 2 immune drugs or with Bevacizumab. Then I decided to go for surgery which was the right choice. But if I have another recurrence I will look for a clinical study with immune therapy or try to get immune therapy in clinic.
Has your tumor been examined for genetic mutations? There are several pathways that can be defect in clear cells and for which there are specific treatment strategies. Unfortunately, I have none of these positive. And then you can also be eligible for elahere once it is approved as long as you have positive folate alpha receptor on your Tumor.
But it could be that also radiation works - I have no experience and knowledge about that.
Sent from my iPhone

Hi @Tanja

I agree with you - I wonder why Bevacizumab is only protocol for serous OC and not those of us with clear cell?

Do you happen to have a link to the Buffalo clinical trials about clear cell? I was searching on this page and put in search criteria "clear cell ovarian cancer" and then "completed" and search by most recent and it lists 84 studies and at quick glance I see 2 for Buffalo: this one about Fitbit: NCT03685695 (completed but no results posted) and for Adenocarcinoma NCT02853318 as below.

.
https://clinicaltrials.gov/search?cond=clear%20cell%20ovarian%20cancer%20&sort=StudyFirstPostDate&aggFilters=status:com 

I think immune therapy is a great way to go.  Why not use our own bodies to help us?!

I had genetic testing, but nothing showed for me.  

Hopefully radiation will be a good option for me and if not, I will ask further about immune therapies instead of going back to Carbo/Paclitaxel. 

Hi@DiamondGoddessYYC. I'm sorry to read about your recurrence. Did you have any symptoms that led to the discovery or was it found through your routine exams? Please keep us posted on how your consult goes. My fingers are crossed that they will have a treatment plan available. 

Hi @Alwayslearning

I was having symptoms of pain, but on my right side (tumor that was removed was on my left side) so went for ultrasound Jan 6, 2025 and felt nauseated that week. Talked to one of the chemo nurses Jan 15 because the recommendation from ultrasound result was to have a CT scan.  Had CT scan Jan 30th and then my oncologist called me with those results February 6th and said I needed to start chemo again as it returned in the para-aortic lymph nodes - but trying Carbo and Caelyx, which ended up not working for me unfortunately.  I did Carbo/Caelyx from Feb to April and my CT May 6th showed it wasn't working.

We'll see how the radiation consult goes July 8!

@DiamondGoddessYYC thanks for the update. I'm always curious as to how a recurrence "presents" itself. I know there are likely multiple different ways and in some cases it's likely a surprise again (like many of our first diagnoses). I've learned that some people feel fine and then bam, bloodwork shows differently 😢

I hope you get the answers you are seeking at your upcoming appointment 🤞

Looks like I'll have 5 radiation treatments every other day and they "tattooed" me with 3 dots to aim at the para-aortic lymph node area.  Not sure when I'll be scheduled, but I must say that CT SIM appointment to line everything up....it's quite intense and the table is hard like laying on cement!  

I'm hoping my appointments are not longer than 10 minutes.  Not sure how well I'll be able to lay still.  They really emphasized NOT to move my arms at all as it will mess up all the alignment and then have to start over.  My arms have to be overhead and holding on to a stick-like thing as I'm laying on my back.  The two tech ladies said if I have anything itchy, just to yell out to them and they'll come scratch for me (itchy nose, eye, etc) but not to move my arms.

I have a CT scan booked for July 25 at ACCCC so I'm not sure if they want that before booking the 5 radiation sessions, or if that's for after to see how well it has shrunk the cells.  Time will tell.

Yes! @Tanja I will be asking about music.  I think that will be super helpful for me to focus on and thanks so much for this abstract! this is great to read :) 

@DiamondGoddessYYC yikes! That does sound intense. I do also know you are a fierce Teal Warrior and you've got this. Just think of something fun like a beach and ocean waves or as @Tanja says, maybe you can listen to music? I know in the U.S. if you have an MRI, they give you headphones for music. I haven't come across that here yet but I'm hopeful it will be an option in Canada if it's not already especially for those of us who go for so many scans.

@DiamondGoddessYYC I always screen all channels for new things for ovarian cancer. This is what I just saw

Thank you @Alwayslearning I was told that yes they do have music, just have to ask about it when I get the first appointment and a friend of mine said they ask what genre you want to listen to, so happy news on that front!

Hi @DiamondGoddessYYC ... I believe you had a CT scan on July 25th. Just wanted to check in and see how you are doing. Do you have any further information on when the radiation treatments will be scheduled? How are you feeling? Most importantly, have you figured out what music genre you are looking forward to listening to?😊😊😊

#Supportandencouragement #Treatmentandsideeffects

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Morning @Alwayslearning!

Yes, I did.  I had to go 2 hours early to drink the oral contrast - was hoping I wouldn't have to, but they wanted me all lit up for the CT.

Just waiting to get the results and hear about the radiation schedule.  I expect to hear by tomorrow.

I feel slightly anxious about radiation - just the laying still part.

I figure I'll ask for some instrumental music, like guitar, piano or harp because I would find that soothing.  I normally like pop and rock but those would make me want to move and sing along, so I need tranquil music to keep me in a meditative type of state.

Thanks for checking in! 

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@DiamondGoddessYYC mmmmm the oral contrast (🤐). I can only imagine thinking about the 'stay completely still' part. Even during an MRI I tell myself not to move and of course, I always get an itchy nose!! I like your music choices. Something calming and soothing. Hopefully the radiation schedule will be accommodating to your schedule. Keep us posted. Thinking of you.

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