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.
Original Message:
Sent: 02-19-2025 17:22
From: DiamondGoddessYYC
Subject: Let me introduce myself.
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).
Original Message:
Sent: 02-15-2025 23:22
From: melissa
Subject: Let me introduce myself.
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
Original Message:
Sent: 01-31-2025 09:23
From: DiamondGoddessYYC
Subject: Let me introduce myself.
@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!
Original Message:
Sent: 01-23-2025 01:40
From: DiamondGoddessYYC
Subject: Let me introduce myself.
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