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Hi. I was diagnosed in December 2020 with stage 3C HGSOC. Had chemo and surgery. Was on zejula for 11 months. I’ve been on some type of treatment since June of 2022. Tmr I am to start Topotecan. There doesn’t seem to be much info on this drug. My onc says this is the only thing left for me. I’m so discouraged and scared. Less than a month ago I found a lump in my breast. The biopsy came back as OC.

Hello Jayne!
I never had to be on a maintenance drug personally, so I have no comment about Topotecan. Hopefully someone else has something to offer?
Where is it that you live?
I'm in Calgary.
What is the care plan with the lump?

I live in Ontario, Canada. Since the lump is ovarian cancer we are just going to proceed with the Topotecan treatment.

perhaps the resources listed on CCS page could help? Cancer.ca

I can’t seem to paste the link? But they say check Drug product database on Government of Canada site

Hello @DiamondGoddessYYC I'm glad you found this group. It has been immensely helpful. Welcome to the group nobody wants to be a part of. From your bio I see you have clear cell. So do I same stage. I was diagnosed in June 2023, had surgery July 2023, had the 6 rounds of carbo/taxol, like you I reacted to the paclitaxel pretty bad, but got through each round with the help of reactine.

Chemo was completed by mid November 2023 and I've been on surveillance ever since with CT scans every 3 to 4 months and blood work as well. I think it's worthwhile to mention that I had my tumor tested back after surgery and I have a targetable mutation PIK3CA. Have you had your tumor tested?

Fingers crossed for your upcoming scan. Hopefully your pains are just pains. I've been taking Lyrica for nerve pain the past 6 months but not for my feet/hands but rather for the side of my abdomen. I had a gigantic bruise after surgery and I'm pretty sure the nerve pain is from that. I'm in montreal not Calgary.. sucks for me

Hi @melissa!

I typed out a response and now I don’t see it?!
if you ever come West, would be fun to meet up!

I did have my tumor tested, but nothing remarkable noted

@melissa
I'll be having a CT scan next week on Jan 30. I have cysts on my left kidney and there is something called "hypoechoic" in front of my bladder that they want to check out from my last ultrasound.
will be drinking contrast in the morning - fun times…. 😉😄
It will be my first time at the NEW Cancer centre here. Will be nice to see how it's laid out. The parking and floors are all color-coordinated. So for DI it's blue parking lot and take the blue elevator for example.
Have a super weekend!

Wishing you all the best on your CT scan.

@jayne Thanks very much!! 😃

Hi @diamondgoddessyyc just checking in to see how things are with you. I remember you said you had a scan end of January, hopefully you have the results by now. Here to listen if you feel like sharing. I myself have a scan March 6th so the scanxiety is starting to rear it's ugly head

@melissa my fingers are crossed for you for good scan results. Have you been feeling well?

@alwayslearning my next scan is March 6th . I've been getting scans every 4to 5 months since chemo ended. Apart from scanxiety I feel good. I'm learning to deal with what I feel is chronic pain.. I've had very mild pelvic discomfort on/off for over a year and ever scan comes back clean. After my surgery my surgeon did tell me that there were a lot of adhesions ( likely from endometriosis) and then when I read my report it said surgery included adhesiinolysis in both pelvis and abdomen.. so who knows.

I did read that they very often grow back. I feel this will just be a chronic issue for me and it's been mild. Other than that I feel good. No return of pre diagnosis symptoms.

Hitting the gym 3 days a week. I think I will ask my dr for hormone replacement therapy though cause my joints are no fun

@melissa here's to a positive scan in March!! I have the on/off pelvic pain too. Like you, my most recent scan came back all clear. The Lynparza also causes abdominal pain in about 40% of cases so who knows if that's the issue. My oncologist said the CT is the gold standard and it says clear, then that's where my focus should be. 

Good for you on hitting the gym. I'm doing laps in the pool and going to get back to light weights next week. It's time!!

Hello @melissa
So it's not great news and I feel super bummed and have been crying on and off and am in a flurry of activity as this is a recurrence and I will have a Port inserted next week on Tuesday Feb 25 and then start chemo (again) Feb 26.  My last day of work (didn't quite make a full year returning) is Monday Feb 24.  I'm super thankful I have benefits to pay for the medications and have some retired friends to drive me to these 2 appointments.  My anxiety is super high so I will be taking some Ativan for both of these appt's.  I do understand that the Port will be helpful as my veins are not cooperative, but the idea of them covering my face/my head freaks me out ....even though I'll be sedated. I took tomorrow off work to do some errands and get a hair cut, although this time my combo is Carbo and Caelyx so not likely to lose hair...YEY!  Still, I want it shorter and layered up since I can't color it.
Good thing I already went for a Pedi as they don't recommend that either (in case of cut/infection).

Hi @DiamondGoddessYYC

First off, I just want to extend my deepest empathies to you. This disease causes us such a tremendous amount of anxiety and daily worry.  Not to minimize what you are going through, or come across as tone deaf but there is, I feel a silver lining to this.  I think I previously mentioned in a chat that I, like you also have the clear cell subtype stage 3b. Do you know what substage you are?. Any who, the silver lining is it took almost two years to recur. I don't know how much you have read about clear cell, perhaps you have researched even more than I but... I will just say it anyways. 

Clear cell ovarian cancer is basically defined as a rare and aggressive subtype, although there are many women with more indolent or "lazy" variations. The majority of these types recur within 6 months. Also, since it has been more than 6 months since chemo ended then that means you are platinum sensitive, another positive, especially when it comes to our type.

have you had your tumor tested for possible targeted mutations? this could be helpful,  why was immunotherapy not offered to you ( maybe it was ) I see you are in Alberta and I must admit I am not familiar with the rules they must follow in oncology. I am in Montreal, and I doubt we are offered anything better  ; ) my gyne/onc said if I ever recur we will try immunotherapy. Clear cell is " supposed" to be the type that might respond better to immunotherapy. I asked my Dr if they would still try immuno on me even though my tumor was not microsatellite high, and had a low TMB she said they actually do not think these molecular finding are what make women have a good response... so, does that mean that histology alone can make the difference? 

Again, I am sorry you have been dealt a recurrence. recurrence is something I worry about almost everyday. I allow myself 15/20 minutes a day to actively think about my diagnosis and what that means, all the what ifs , all the crap, i wish i did that... then i move on with my day and leave that behind.

Does your oncologist offer any words of hope? or do you not ask. every appointment I go to I always ask. These questions are not for everyone. If ever you want to chat privately, I am here.

@DiamondGoddessYYC I too am sorry to hear your news. Of course your anxiety is high. I'm glad you have the meds to help with that. It sounds like@melissa may be a great resource partner for you. Good for you finding the silver lining (likely no hair loss with treatment). That shows how strong you truly are!!!

@DiamondGoddessYYC and @Melissa I am too, in the clear cell club, stageIV. I am in Toronto, PMH. Dx in Feb 2023, recurrence in Feb 24 (just barely platin-sensitive with 7 months), 2nd surgery in June 24 and another 6 cycles of Carbo+Paclitaxel. Not fun, but I managed and came out without any chronic health problems (who would have thought that one body can tolerate so much poison). I also got bevacizumab next to chemo for the first tumor, but had some interruption due to early bowel obstruction (surgical adhesions). Since I saw a couple of case series with OCCC that did well on bevacizumab long term,  I insisted to get bevacizumab again this time which I got (on compassionate use). I also felt that similar to the women with serous cell, clear cell women need some form of maintenance treatment. So, now after my treatment for recurrence, I am actually doing well. So with all this, I hope you you see that tumor recurrence is not fun, but it is not the end of the game. I agree with melissa that immunotherapy for clear cell is an option, though data are scarce, and the last study I saw that double immune therapy was also effective in those without MMR deficiency. So, there is hope at the horizon.

Did you ask whether the recurrence is operable?