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).
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Now physio is here to assess me walking so must go0
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@Fearless_Moderator
I think I better clarify what I meant....that first comment was for "better late than never." Glad you could join.
I was wondering if you were okay when I didn't see you on.0 -
@hope2022
That statement is true. So when I am down and out, I am really down and out.
Good for you! Go enjoy that sunshine! It is good for the soul!
Let us know after you hear from your doctor what your plan is.0 -
Hi everyone, back after a summer break. My schedule didn't align well with these chats but I have read everything. First thank you to everyone who posted pictures and updates on their lives. And sending my best thoughts and wishes for your recovery @ToughAsTeal
I had both a challenging and amazing summer. Challenging at the beginning as we tried to fit in the last 2 chemo treatments but my platelets were pushing back. After a few postponements we were able to fit in a total of 8 by July 15. CA 125 to 58 then 72. I am BRCA negative so looking at Niraparib now but just holding off another couple of weeks to give my blood a change to recover bc that one is particularly hard on red blood cells. Anyway the beginning of the summer was tough. I was so weak, dizzy etc and it was difficult to imagine I could be my previous active self but by the end I am been cycling, swimming, walking, yoga Tai chi etc and even some overnight sailing trips so feel ing pretty great. and optimistic. At my appointment yesterday my oncologist was fairly positive about our plan to go with Niraparib by end of the month. However after my appointment yesterday I received results that my CA 125 has gone up suddenly to 160 ( I monitor using the MyChart app so I can see as they add the test results). So that took some of the optimism away but I have not heard from my doc so assume the plan stays the same. We will see if the PARP brings that number down.
I am planning to have a lovely September and deal with those other issues as we work through them.
Happy September to everyone!
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@ToughAsTeal - glad to read you had a short walk so important after surgery.
I had CT scan recently at Credit Valley with contrast dye. Had oncologist call today and CT report results. Some shrinkage of my tumors and disease stable after the first recurrence. Hopefully will stay that way for a while.1 -
@mjmck21
I am sorry to hear that you had a rough go earlier. You seem to have a good outlook on it and that your strength has slowly come back.
Keep us posted as how things are going.1 -
@Bojenka
That is good news from your results. Some shrinkage is good. I will send positive vibes your way.0 -
Thank you @Strongwoman. I find so much support on this chat and website.0
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Well ladies, I must end the chat. My dog just dug a hole in the backyard that I have to go fix before the hubby comes home.
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@strongwoman I live by the Glenora Ferry which connects Highway 33 in Prince Edward County to the mainland. We had to do a run into Picton this morning and I got caught with an unexpected ferry line up coming back. Gorgeous day out there though..
Welcome to our two new members. @Bobby and @hope2022. Sorry I was not there to great you but looks like you've al been in good hands. Thanks @Strongwoman for stepping in and covering me. Promise to be more timely next week.
Busy week ahead for OCC and final planning and execution of this years' annual Walk of Hope on the 11th. Hope they do well this year, both in fund raising as well as furthering awareness of the disease.
It's now after 2 and everyolne is dropping off so I'll catch up with all of you next week. Big hugs and know you're in my thoughts, always.
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Hi everyone. I seem to miss these chats. I myself have issues sleeping at night. Seems that by the time I fall asleep I don't wake up till at least 1130 but that's ok.
@ToughAsTeal sending speedy recoveries your way.
Welcome to out site @Bobby and @hope2022. I find this site and talking with everyone very comforting and helpful. Ty as well @Strongwoman for your support.
My update well my CA125 levels are still slowly climbing. Had a meeting with my oncologist yesterday in the cancer clinic. We could do a few more round of Caeylx and Avastan but with my CA125 levels slowly climbing and with the hand and foot syndrome (which ive been keeping at a minimum by staying 90 percent off my feet). She felt we should change to another form of treatment.
Their is 2 trials in stage 2 here and my oncologist is reaching out to the trial centre to see if I qualify. Someone will reach out to my by no later than early next week.
Other than that we also have plans for me to start gem and Avastan.
Had a call from my oncologist this morning to touch basis with me and she mentioned 1 study you cannot start the chemo but the other study u can while you wait. My oncologist wants to explore all options first before we go ahead with the new chemo. So with that said if my oncologist is holding off doing new chemo for 2 weeks and will retouch basis with me next week.
I've already been off chemo now for 1 week come monday my ct scan yes i used the contrast iv as well.
I guess my concern is my tumors that have shrunk and or stable will start regrowing while i wait.
But on the other hand my feet and hands i am able to do things again. A little yard work. This break will give a chance for my blood count to rise again. Missed out so much being stuck at home.
Yes it can be isolated feeling but watching nexflix and reading books. Now im sitting outside enjoying the fresh air now that its not so hot.
Have a great week everyone.
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@Eileen
The good point is....you got on and did join!
Thank you for sharing. You made some good points while awaiting treatment options, your body is getting a break it probably needs and your mental state is too by getting outside and doing some of the things you were unable to do.
So those are all good and positive things.
The waiting can be hard and we all know that it is such a waiting game with all of this. It is why we have each other in the meantime.
As for your sleeping, talk to your team to see if there is something they can give you for it. I am back on something again due to the lack of sleep and quality of sleep I was having. It does help and the one I take does not give you the "hangover" feeling. It just shuts my mind down so I stop thinking so much.....so when I am reading at night, it will slowly start working and I know it is time to put my book down as I am not absorbing the words anymore. It is worth an ask on your end.
I hope you are able to join us again.
Take care0 -
@Strongwoman
I spoke with my oncologist on Thursday about rising ca125 and stomach issues. I will have a CT scan in the next few weeks and compare to the last one in May. It looks like the Niraparib didn't work for me, so I stopped it as of yesterday. Currently there are 3 clinical trials open, so it looks like that's a good option for me. I'll meet with my doctor after the CT and discuss next steps.
You really inspired me Thursday to get out and get moving after I read all the things you had on the go that day! So thank you.0 -
THURSDAY SEPTEMBER 15 AND WE'RE READY FOR ANOTHER LIVE ONLINE CHAT. WELCOME EVERYONE.
Not sure about you but I'm definitely beginning to see the signs of fall just around the corner. The air the last few days has been crisp and cool. The leaves on a few of our trees are beginning to show changing colours. Apples in the orchards around us are ripe for picking as we switch from wine tours to apple picking.. Really a favorite season of mine but these days, as we move from one season to another, I see that as a new milestone achieved in my survival!
Feel like I'm falling apart these days but had to remind myself that whatever ails me is not cancer related....sciatic nerve driving me nuts, a UTI I just got antibiotics for (ouch more pills to take), Yup normal life still swirls around us oblivious to this disease we continue to fight.
Anyone participate in the 2022 Walk of Hope last Sunday? Strongwoman started a discussion where you can share your experience if you wish to comment. I didn't walk myself. The sciatic nerve was problematic for my mobility but I did do my annual outreach to my own community and raised close to $2000. As they say, every penny counts in the fight to eradicate ovarian cancer or, at the least, make it a disease one can actually live with long term.
I updated the September events list. And interesting Speaker Session this month and the usual Teal Tea schedule for those interested in meeting others on the zoom platform.Enough from me for now. it's time to get our chat started so thanks to everyone for joining us now or as we chat durig the hour. Sign in, say hello and let us know what's on your mind today. What can we help with? What would you like to share with the others?
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Hello. I am here and will be in and out as I put away my groceries. Went to the Farmer's Market this morning and got some goodies. Went to my chicken place to get chicken that is hormone free. Then, I stopped at the mall and shopped (teehee), with a couple of gift certificates that have been sitting here for who knows how long. Felt good to do it and not spend my own money!
I had an emotional day yesterday as I resigned from my profession officially and sent my designation back to the College. I had made my mind up about it and was ready to do it. What I wasn't ready for was the emotions that took over. I had a good cry and then headed out to do some errands. End of my day was a pick me up. I got my hair done (haven't been since April) and got it coloured and cut. That made me feel very good and still does today.
So, now I wait for my new Med Onc to call which may happen during out Teal Time but I will manage both.
That is all that is new on my end!1 -
@Fearless_Moderator
I hear you. I am not quite ready for summer to be over, but each new season brings life so onwards we go! I have had my second shot of Palegea this week. So far so good. It seems to be keeping my WBC's up so I can have three treatments in a row. I have felt better than I have since coming off the trial in May. This Friday/Monday will be my first scheduled break in the cycles (3 weeks on and one week off). What will I do with myself?? Well actually I am going on my first out of country work trip (only Pittsburgh so close) on Wednesday. Back Friday to get to the hospital for blood work and Dr. consult.
. Booked for Washington next month. Hopefully this feeling good gets me back into productive mode. Hope everyone is doing well and enjoying the last vestiges of summer. 0 -
Hi all. @Strongwoman I understand this emotions after a 33 yr career. Bawled at work. And that was it. Have never missed it.My Ca125 went up some while in hospital. I am adjusting to the ostomy for the most part. Having a lot of pain today.0
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@Strongwoman congratulations and making the break. Much of what you experienced I recall from when I shut down my business after a good 30 year run. It's so amazing how subconsciously our careers become such a part of us. And sure enough good old retail therapy does help a lot LOL. That said, out of the blue I discovered a way to marry my old expertise with my fight against these disease and actually crafted myself a new career. Not particularly lucrative but very mentally fulfilling so here I am today moderating this site of ours, almost done co-authoring a guide for gynecological patients on how to transition out of primary treatment, consulting to AstraZeneca as a patient-partner to some of their pharmaceutical initiatives, and just getting into a new study partnering with my oncologist on PARP inhibitors. So there is definitely life after retirement and the change can be invigorating.1
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@Strongwoman
Thank you for sharing. Two weeks ago I was seriously thinking of officially retiring and giving up my contracts at the end of the year. I still may, we will see. It is not what I want to do but some days it just seems too much. I am sorry you had to take that step, but I completely understand. Hair cut and colour!! I am jealous (given I again have NO hair)!
I am losing some of my fingernails (Taxol) and so even a manicure is out. I did have a very nice massage treatment on the long week-end and that perked me up. She even gave my bald head a great massage which felt amazing! May have to do it again soon 0 -
@ToughAsTeal
I am sorry you are having a lot of pain today. Are you able to take something that keeps it under control? I understand pain management is a bit of an art, hope it subsides soon.0 -
I have some Ovarian Cancer Canada good news to share. There is a "Day on the Hill" coming up at the end of the month and I am participating along with others in meeting with MP's and minister's to let them know how successful we have been with the first $10M from the April 2019 budget and of course we will be putting in a request in 2024 when the current $ runs out. We have lots of support in Ottawa and I know it will be a busy but productive day!1
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@ToughAsTeal so glad you continue to be able to join us while you recover from your surgery but very sorry to hear you're in pain today. You've been through so much since we "met" it's time life cut you a break so I hope the pain resolves quickly and your healing process puts you in much better shape than you were before it.
I have been Netlixing, Primeing, etc. the past couple of weeks (bit of insomnia) and wrote down a list of movies and series to give you assuming watching the tube might be something that is helping occupy you in recovery. LOL now I can't recall where I put it. Oh well I'll locate it later and send it on to you.
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@Taita Hydromorphone.
complete off topic, which is giving me good distraction, my friend is taking one of her daughters (17yrs) to London for the funeral. She has gone to previous jubilee, weddings.. preparing to start her street camp out on Sunday.1 -
@fearless yes will enjoy list of suggested watching thank you!0
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That's amazing @Taita. I can't think of anyone better suited to represent us Survivors. Good luck with the presentations and with your background I"m sure you'll be very convincing when it comes to squeezing more money out of that budget for us.
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@Taita that is huge news about day on the hill! Will be a powerful event1
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@ToughAsTeal I've been sneaking some Hydromorphone I have that's intended for when I get a Gout attack and using it to take the edge of the pain in my leg from the sciatic nerve and getting no relief at all which really surprises me. Mind you the pills are only 1mg so maybe I need a stronger dose. That said, no I won't try doubling up. I not an advocate for meddling with meds with doctor approval. However I spoke to the nurse at my GPs office and she's suggested Gabapentin for nerve related pain. So I'll pick up that script and give it a go.0
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@Taita
That is ah-mazing news! Please keep us updated with how you make out.
@ToughAsTeal you are one tough cookie! You have been through so much currently. I am sorry to hear that you have pain today. What area is that in? Is it from the ostomy? Just curious, don't share if you don't feel like it. I understand.
@Fearless_Moderator Good to hear that you will get a break from treatment even if it is short lived. As for re-starting a career, good for you and can't wait to see what you have put together. I am not ready to think about that yet. Still coming to terms with ending work and getting stuff organized at home and for future to think about anything, Like I don't even feel like reading or crafting which is soooo......blasphemous! hahahaha0 -
@Taita do you know if there will be any sort of live feed?0
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@Strongwoman the pain seem to be transverse colon, before the ostomy. I also continue to get some pain when I discharge large clumps of mucous and some blood clots with real or imagined peristalsis0
