Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. 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 Community Champion. 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).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
Comments
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Hi @mazzg. It is a long road but it’s not all terrible. My five year old asked me last night if I could just remain bald, because he likes it. Hahaha! There are spaces between chemo when you will feel normal and find ways to regain your strength and positivity. Lean on us when you need to be bolstered and no question is ever stupid. I have certainly ‘cried’ on this site and received nothing but calm, kind and words and solid support. We are with you. A survivor said to me ‘this is a short period of difficulty in a long life.’ Another had a mantra ‘ I am stronger than the storm.’ I found a lot of comfort in these words. 🧡2
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@Fearless - Vol Mod..here..here..to that..all of our journeys are different..we can learn from each other..support one another..were in this together..1
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@Fearless - Vol Mod Thanks for your support! I feel alone out here! Just finished my first treatment and it didn't go well. It's like I felt the deadly drugs permeate my body. And now I'm left with shooting pains down my arms & legs, plus horrible pain in my abdomen - both left over from surgery and being poisoned. It's a horrible feeling that meds. are not fixing! Wow! I didn't expect this feeling.1
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Hi I am Vivian l from Canada I was diagnosed in September I have my 3 kemo last week feeling o k0
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Hi @mazzg...I was thinking of you today..sorry your first treatment didnt go well...did they give you an emergency number to call ? Did they give you direction as to what to do for side effects or pain? Or a prescription? the other option would be to go to the ER if you dont have any options or medication...0
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Hi @Bluebird . Yes yes they did give me a number but they said to go to the ER. I don’t have a fever, so I’ll take the Tylenol & Morphone they gave me for surgery and go to sleep! If I feel bad tomorrow I will call again! You’re so sweet to be thinking about me today!! It’s so comforting knowing you & this wonderful group of women are looking put for me! Thank you so much!!1
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Welcome @vc46...to the ovarian cancer support group..I'm glad you are feeling well and finished 3 chemo treatments...have you had surgery yet or are you finishing chemo first then surgery? I'm glad you joined..other members may have been attending the symposium today..this is open to comments or discussions any time..the main group chat is Thursdays.. at 11 am eastern time I believe..anyone following this conversation please correct me...0
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Welcome to our community @vc46. There are lots of ways to exchange information and ask questions on this platform.
As @Bluebird mentioned, we have a live chat every Thursday. But, it is at 1pm EST, not 11am. To join, all need to do is sign in to OVdialogue and click on the the Discussion Topic: Teal Thursday....... Our group gets larger each week and it's an opportunity to get an immediate response to any questions you may have. And sometimes we don't even talk about cancer. The chat is open to anything anyone wants to share. We would love to have you join us any time.
You can also just surf through the discussion threads on topics of interest to you. You'll find a lot of information that may be helpful in supporting your journey. And you can always look for a specific topic by typing a couple of key words into the search bar at the top right of the screen. That will list all related discussions that may have already occurred.
Finally, if you haven't already, I highly recommend you investigate the Ovarian Cancer Canada website. ovariancanada.org It is chock full of information and resources about our disease. And I strongly suggest you order the booklet By Your Side. It now comes in e-version as well as hard copy and is a very useful guide to support you through your journey from diagnosis to end of first-line treatment.
Glad to hear your first chemo sessions have gone well and hoping it stays that way for you. We all look forward to hearing from you as your journey progresses. Always feel free to let us know what we can help with...if only to be here to listen.
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Hi Ladies, My Name is Karen and I was diagnosed with I was diagnosed with stage 3B, grade 2 endometrial carcinoma and grade 1 blah, blah blah...I copied and pasted below what I have. It is a bunch of big words. Even though it says stage 2...my oncologist said because of the size and spread (because it was spreading out of the abdominal area) that it was actually stage 3 in size and development Two separate primary tumours: (doctor speak... 1) Stage IIB, grade 2 endometrioid carcinoma of the ovary with involvement of the uterine serosa, left periadnexal tissue, serosa of the left fallopian tube, mesenteric and peritoneal nodules. 2) FIGO - grade 1 endometrial endometrioid adenocarcinoma in the background of atypical hyperplasia.).
Prior to my debulking surgery, I was not told that it was cancer. I was told that it could be, but because I have a large family history of Benign Fibroid tumors, they were not sure if it was that or not. But, the tumors were large enough that the gynecologist who first saw me told me that a Gyne-Oncologist would be the best person for me to see because of the size and complication of the masses. But she kept assuring me that these tumors may not be cancer. Once I saw the oncologist, she too could not be definitive.
So...4 days after my 50th birthday, November 26, 2019, I went for surgery. When I woke from surgery, I was given the news that my tumors were in fact cancer. I was prescribed 6 rounds of Carbo & Paxel Chemotherapy. I began in January and finished at the end of April. So I also got to experience life and treatment in COVID as well. I must say, I did take to the treatments very well. I lost my hair and had some neuropathy in my hands and feet. I still have some mild neuropathy in my feet but nothing major. I was actually walking approximately 3-5kms a day during my treatment. I kept busy and active throughout. I didn't get nauseous or feel sick. Physically anyway. Actually, mentally, I was in good shape too. I found local support groups that it was a tremendous help talking to other cancer warriors. Including one that is specific to gynecological cancers.
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Welcome @KarenBemi We're so glad you've joined our community. So sorry your diagnosis wasn't what you had hoped for but it does sound like you've weathered your surgery and chemo very well.
We have a small but active live chat group on Thursdays at 1pm EST that I host. Love to have you join us, any time. You need only sign in and then click on the Teal Thursday discussion title and you're in. And you can pop in and out as the conversation flows.
Otherwise, any time you have a question you can review previous discussions on the topic by typing in key words into the Search button at the top right of the screen...or you can start a new discussion yourself. And as you see other's discussions or comments love to have you share any relevant experience you may have had. And for sure, use the Ovarian Cancer Canada website ovariancanada.org as a great source of information and resources as your journey continues.
If at any time you wish to ensure a particular member is aware of any comment you might make you need only type the @ and then begin typing their screen name with no space in between. That will bring up a popup that you choose their name and they will be notified that there is a comment awaiting their attention.
Wishing you continued success in your recovery and look forward to hearing more from you down the road.
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Today I finished chemo #6!! It’s been a long road since surgery in June and the start of my chemo treatments in July. Some might remember that I became allergic to Paclitaxel and was switched to docetaxel. This might have ended up being a blessing. The docetaxel infusion is only 1 hour long and my hair is already growing back. I’m on a clinical trial and will likely start Zejula in 3 weeks. I’m also getting either immunotherapy or placebo as part of this trial, which will continue every 6 weeks during maintenance. I think back to chemo 1 when I was terrified, and today when I strolled in like a pro. You certainly learn a lot about how to cope and how your body responds to chemo. My nurses today were lovely. I rang the bell and they cheered me on. I wish I could post the video. I’m so grateful for the support, encouragement and strength that my Teal sisters on this site have given me. We are warriors!
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Here’s a photo from chemo 6!
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Thanks @cbot @kattie666 @Bluebird! It’s a unique road for each of us and the support along the way makes a huge difference 🧡1
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Lovely photo @KarenBemi! Thanks for sharing and congratulations 🥳 It’s great too that you tolerated the treatments so well!1
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@nadiaC @KarenBemi Thanks so much for sharing your pictures. It's so wonderful to hear about someone reaching that final milestone but to see it is really inspiring for those still in treatment.1
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Hi my name is Ann from Newcastle Ontario. I have just recently been diagnosed aggressive stage 2a ovarian cancer . In October I had surgery to remove the large mass and slow do a full hysterectomy.
Since Cancer found she also did some debulking
while she was already there. Surgery was a hard recovery but am doing fine . I kind of feel in a fog
hard to comprehend I have Cancer ....
on November 13th I am scheduled to start my chemo which will be one day for 7 hours then every three weeks for six months.I have been reading about chemo treatment and the more I read the more I am stressed about all these side effects. I know it’s hard as everyone is different but the unknown scares me !
Does anyone have any advise for me I would greatly appreciate it . I do not have anyone here that I know that has went through this treatment so you input would be much appreciated !
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@scottishlass Welcome to our community. We're so glad you found us. Here, you have the support of over 600 women diagnosed with ovarian cancer...all caring and willing to share and support your journey.
We actually met on CancerConnectioin, the CCS site, where I'm known as KathiR. So I won't repeat some of what I suggested to you there. But I can say you are not alone having been surprised with your diagnosis. That's the problem with this disease. It just sneaks up on you. But thankfully yours has been caught in an early stage.
We can all understand your concerns about the chemo but everything you read is targeted to all possibilities that could occur. In fact, we all respond differently. And these days they load us up with meds, either orally or through IV, that are intended to counter any side effects....anti nauseas, antihistamines, steroids and whatever else they feel appropriate. The real key to successful and comfortable chemo is communication. You will find the chemo staff incredibly caring. Their job is not just to administer the chemo but also make the process as easy as possible for you. So, it's important to let them know how you're feeling. Don't try to be a martyr. As long as they know if you're experiencing any discomfort they can adjust meds and the IV drip accordingly.
I don't know where you are having your chemo but many of the centers offer a pre-chemo tour and mini workshop to familiarize you with the process. I'd highly recommend attending if you can.
A few tips and I'm sure others will weigh in with theirs:
* Wear comfortable clothing (I wore loose track pants and top and brought slipper socks to change into)...layer so you can adjust to whatever the temperature in the room is.
* You can eat while chemo is being administered so take some snacks or nibble on or lunch
* I always find hospital water awful tasting so always took a bottle or two of spring water.
* Bring something to amuse and occupy your time....a good book, magazines, iPad or Kindle.
* Don't go to any major expense buying things like head coverings and wigs and other special items until you know if you need them. I spent a lot of money on fancy head coverings only to find out I had no hair loss and didn't need them)
* These days most hospitals will not allow someone to accompany you. I know how comforting it is to have a family member or friend with you, but that's the state of Covid and something we have to accept. You will find yourself making friends in the chemo room though. You'll discover others on the same cycle as you and so over the course of time you'll get to know each other. And, if you have access to internet you can always connect up with us here at OVdialogue. We have a live online chat on Thursdays and one of our members who is in chemo at that time occasionally joins in from the chemo chair.
Continue to reach out if you have more questions or concerns and please keep us posted on how you're doing. There have been many other discussions on this topic so you might find is useful to type in key words like: chemo into the search bar at the top right of your screen and it should pull up former discussions you can review or even join.
Good luck to you ....and don't worry too much...you've got this gal! 0 -
Thanks for the information and encouragement it is very much appreciated !0
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@Scottishlass, my treatment was also 6.5 hours a day. I remember before my first one, I was so frightened of what to expect. It is a very long day, especially if you cannot have anyone in there with you. I finished my treatments in April so I did go through during COVID. If you are going to be getting the Carbo / Paxel drugs, you will probably start with Benedryl...SLEEPY TIME. Usually within 20 minutes of starting that, I was out cold (I am a light weight when it comes to drugs. Not everyone responds the same way to all treatments but I do know that I took to them pretty well. Make sure you bring stuff to keep you occupied (books, phone, tablet, adult colouring books). Bring Snacks. And Bring water. It is a long day so be prepared.
You can do this. Just make sure you keep your mind busy so you don't think too hard1 -
Thanks Karen Bemi
I do have that combination of med so hopefully it all goes well! I am sure the first time for everyone is very scary. It sucks no one can come with me but hey I get it everyone doing what it take to Covid away!
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Hi! I'm Marie from Peterborough ON. I live on my own, but I have a 33-year-old daughter. I was diagnosed with stage 2C epithelial ovarian cancer in Dec. 2015, at age 60. I had a hysterectomy in Jan. 2016, and then the standard chemo treatments. I responded well, and was lucky enough to be in remission until Nov. 2018. More chemo started in Dec. 2018, then a few months clear until the cancer was again detectable. Chemo started again in Dec. 2019 (December seems to be a bad month for me!), but was paused after three treatments. Radiation was offered to shrink the tumour that was pressing on my bladder and causing incontinence. Chemo completed after the last three treatments. In July 2020, I was told that I met the requirements to be prescribed Zejula (Niraparib), which is a PARP inhbitor. I did not need to have the BRCA gene in order to be eligible for this drug, but my treatments had to show that I was responsive to platinum drugs, which I was. I've been on Zejula for four months. I hope it's working.2
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Welcome @Rosebud65. I'm glad you found us and hope we can be of some support as you continue your journey. Strange but I was just wondering the same thing about December myself. My first assessments for OVC began December 2016 (although not formally diagnosed until the end of the following January). After surgery and chemo I was clear for a year and a half but in December 2018 I recurred. I was put on a trial oral med instead of chemo, which has worked up to now. But here we are almost December 2020 and last week advised the drug had run its course so headed into chemo in two weeks. So, like you, the December timeframe seems somewhat pivotal for me...just a fluke I'm sure.
Sorry to hear about your recurrences though. It's tough going through multiple iterations of chemo. Hopefully the Zejula will work, although I saw you other post on the Zejula discussion thread. I assume you're keeping your treatment team apprised of the discharge and they're monitoring the rising CA125 closely. The discharge could still be a side effect of the Zejula...I hear the drug can be quite brutal. Regardless, hope it all sorts out for you and glad you've joined our community. We're all here for you...through the good and the bad. So please continue to reach out as you need support...even if only someone to listen. And keep sharing your experience, which is invaluable to the rest as we compare our situations, but knowing each of us very different. At the same time, it does help knowing there are others out there who've had similar issues. You're never alone with this community, that's for sure.
All the best and keep us posted on how you're doing. 0 -
Thanks for your welcome. As far as the discharge goes, it was there long before I started taking Zejula. It goes away when I do chemo, and returns when the tumour(s) start growing again. It's a red flag for me. My oncologist is aware of it, and simply says that tumours can produce fluids. When I had radiation, the radiologist said the same thing.0
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Hi Every one !
Well got my first chemo on Friday was not as bad as I was expecting ! Was a long day was there for 7 hours at Oshawa but very comfortable and people
were so nice !
I have a couple questions I had the CRBPPACL treatment and I have not slept from Thursday night not tired do you get as a side effect an adrenaline effect? Also I have had a lot of pain in my side
has anyone else had these issue ? If so any advice !!!
not sure about taking over counter meds for assistance with sleep!
Anyone’s input It would be much appreciated !
Thanks for all your input on my previous message you reposes calmed some nerves for me !!!💕
Ann
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