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 (mfallis@ovariancanada.org).
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).
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Options
Comments
-
@grandma
Welcome to the chat and yes you are using it properly. My "dump" today was something I needed to unload. I am glad you could join this and hope you don't get put off by my thread. The waiting is so very hard especially when you are waiting for levels to come up or down.
How are you feeling otherwise?0 -
@grandma I've never had a PIC. My first treatment in 2017 was 6 cycles of Carboplatin and Gemcitbine administered by IV. I recurred a year later and was put on a clinical trial of Olaparib, an oral PARP inhibitor. It shrunk the cancer 75% and maintained me at that level for almost two years when my cancer (by the way, it's high grade serous stage 3C) began to progress. Back in to the combination of Carbo and Gem and then later Cisplatin and Gem when expressed my first negative reaction to Carbo. But this time I had a chest port installed for the infusions and that was wonderful Then a hiatus for six months but the treatment didn't stick so now I'm o Gemcitabine alone. But always have my infusions into the chest port. It was easy to install and relieves all the hunt and peck issues that IV give you and easier ro manage than a PIC.
1 -
I feel fine, if it wasn’t for the doctors telling me I have this disease and my other situation and “can’t“ work”. I would go back to work, but I am finding a new path to follow that is at this moment filled with time for myself0
-
@grandma
HOLY!!! What in the world were you doing for work? I truly am intrigued to know given that you gave up your age in another thread. I am so curious what had you still wanting to work that long.0 -
0
-
I know it’s a matter of time with me. I’m not going to kid myself. I have to face this head on and appreciate all the “dumping”. Cause I know I will be there doing the exact same. It’s stage 4 and no hope for any type of surgery1
-
@grandma
No "hope for surgery" does not necessarily mean there is no treatment. You will find out some answers on Monday and will be able to process and move on the way you wish to. It is all yours.....well other than the parts of our body that will make us do things in order to carry on.2 -
I worked in an munipical office for over 20 years and transferred out to the recreational department so I could work outside. Love being outdoors in the summer and in the winter I drive the Zamboni. Love watching the little ones play our national sport 😂2
-
Hello @Ele
How are you this week?1 -
@grandma
That is awesome. Driving a Zamboni must be fun...it looks like it anyways! So many would love to be able to say that...and kids LOVE the Zamboni.2 -
From what I understand zejula is a maintenance drug that keeps the cancer at bay and hopefully stops new or continuing growth0
-
Hi All, I had my 3 months consult with the oncologist yesterday and since some symptoms are back ie mid and upper back pain, he is ordering a CT scan. I take Tylenol extra strength when pain is too much. But I will most likely be back in treatment come January. Meanwhile I hope to live my best life. Recap I had my first recurrence and chemo carbo/taxol this spring. Finished chemo mid July1
-
@Bojenka
Sorry to hear that you may be experiencing a recurrence. For now, it is good also that your pain can be controlled by Tylenol as it is not constipating which can become an issue with other pain meds. It also sounds like you will or should be able to enjoy the holidays should you celebrate them and then go into treatment. How are you feeling with the waiting game?0 -
Hi Bojenka, Did your oncologist Put u on any maintenance treatment?0
-
hello all i’ve missed you so much, life has just been a shit show i know you can understand……. one more round of chemo for me, i feel like death and last week i was sick with the nasty flu bug!
i also went through my anger stage it was well in the end very therapeutic for me but i never realized how long i held on to all this “hate” i feel a little bit better ……
been taking with my team and i decided that after chemo i’ll weigh my options but am now considering surgery……or i should say it was recommended…. how many of you had surgery after chemo ? Hysterectomy … oophorectomy together … basically everything out ?0 -
Oh @Strongwoman what can I say but "I hear" you. I've found over the past few years I've been moderating this site how incredibly resilient our members are, but for some there comes a time when they just say "i'm done" and usually related to treatment effects. I've been one of the lucky so far. But every time they introduce a new chemo or share a new trial I think carefully about whether I'm willing to try it...and more so, strong enough to stay stop if it becomes unbearable. But you are an example of the new advocacy that's surfacing among our Sisters. You're educated on he topic and you steer the path you want to take. I'm just so sorry the Trem and all that comes with it has been such a failure for your quality of life. Are you heading this way to visit your parents over the holiday season? If so perhaps we can do that coffee when you're in the area. I"m back mobile again so can drive and Belleville is not far. Do let me know. And as for your anniversary. Congratulations on 33 and do go out and do something special. Perhaps that will lift your spirits enough to get into the holiday season. Last year I truly though that Christmas would be my last based on an updated prognosis. So I overdecordated, overspent, over ate and despite continuing recommendations to mask make sure those who deserved it got a big hug. Well, here I am and planning another Christmas for our family and already thinking about next year. Anyone who has never had this disease will never know the roller coaster we live in. One minute you're on the fast track down hill and then out of the blue the side of a mountain appears and tune spent rising to the occasion. That's the innate resilience built in all of us. It just takes time to find it sometimes.
Please stay in touch and let me know what |I can do to help gal. i'm here for you.1 -
Good morning everyone. Finally am awake lolol. On my 3rd sesson of the gem and happy to say my ca125 levels down to 78 now.2
-
Hello @Eileen
Glad you could join today. How are you doing?0 -
@grandma “I feel fine, if it wasn’t for the doctors telling me I have this disease and my other situation and “can’t“ work”. I would go back to work, but I am finding a new path to follow that is at this moment filled with time for myself”.
oooooh can i relate to this when i was first diagnosed i thought nothing of it and was like whattttt? new paths are exciting but also a little nerve racking, i’ve found that i loved a very very busy lifestyle and never made time for myself which now seems like that’s all i have time for0 -
I want to also say Happy Anniversary. I never married and wish I did have a spouse to have a shoulder to cry on and laugh with1
-
@ Ele
Yes, I totally understand. I have found for me, reading has helped a lot. I get little 'nuggets' from different books that I can relate to.
Venting helps and I think we all here understand what that both feels and looks like. My initial and only surgery consisted of a radical hysterectomy (which is what you are describing), partial omentectomy, bowel anastamose and debulking surgery. Depending on your situation, they may have an option to do your surgery laproscopically or they may open you up from the belly button down. Due to the spread of mine, I was opened up from sternum (breast bone) to pubic bone. I also went into my surgery not knowing if I would have an ostomy or not but was marked for one just in case. I thankfully did not need one. Whichever one you have, recovery is tough and being thrown into surgical menopause is a "ride". The hot flashes happened more quickly than what I thought they would. Make sure you walk daily even if it is small and with assistance. It will be painful but you must do it. Recovery is the hardest part of any surgery.1 -
Hi Eileen, I’m so happy that ur Levels r low0
-
@Fearless_Moderator
Thank you and I hope that maybe after the holidays I may get there. I like to travel when it isn't so busy out there and then in the New Year it sometimes feels like things "fall flat" if you know what I mean.1 -
-
@Strongwoman
Sorry to hear about your side effects and I am truly amazed at your resilience. Really appreciate your candour. All of you ladies are inspiring. I am ok with waiting for treatment. Being in treatment is positive because it’s killing the cancer but I get anxious about it also.0 -
@Bojenka @Ele I suer remember the anger phase for me. Primary treatment was a piece of cake for me so he cocky in me gave into confidence I'd beaten this sucker. And then a year and half later....first recurrence. And boy did I hit bottom one day. M|y husband was at work and we live on 11 acres on the lake and were in the midst of some decluttering so I took a couple of boxes of oldl china down to the lake front and starting screaming every invective I'd eave heard while hurling china as far out into the lake as it would go. It seemed to go on forever but probably just ten minutes. But boy, did that clear the cobwebs out of my complacency I still get anxiety attacks (last night a good example) and rather than ignore I do ry to hit them head on. But like Strongwoman it helps to get back my control over decisions made in my treatment. If you want to take a path that hasn't been recommended, don't be aftaid to clearly state this is the way you want o go and for what reason is not being recommended. I've found often my oncologist has just said her recommendation was because she thought I'd prefer it but no reason not to follow what I'd suggested and we go forward that way. She's learned over time I want to hear all options considered and the pros and cons of each before we continue down the path. And so far so good.2
-
@Bojenka
Thank you. It takes courage to write what you feel and to feel safe in doing so. Yes, being in treatment is positive. The other medication I am on, I will continue and was managing fine with it (Letrozole). Then we will go from there.
I read things and don't always take them for face value (ie/ side effects) as they don't happen to everyone. I was truly hoping that was the case with the trial but alas it isn't and that is okay too.2 -
Good morning @Strongwoman. Doctors put me on some trazadone to help with sleeping. 50mg dont work so my oncologist said to try 75. Well that worked except. I get shaky and drugy in the morning. So i spoke to her yesterday during the chemo and she said try to cut the half pill in half again. Ok well still a bit shaky this morning. I wish we could find a pill that helps sleep but u dont feel like crap the next morning. Other tham that had a great bday last stools etc and suchat . my kids took me out to a fantastic japanese restaurant where they cook in front of u and do a fancy juggling show with their cooking tools and such and i also got a new notebook computer for my bday.0
-
@Fearless_Moderator
Well said! It is the truth. I weigh heavily on the pros and cons and in my case I at times discuss them with my Palliative Doctor as well which also helps to give me either food for thought or reinforces my decisions.1
