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!
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Comments
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@Fearless I took your advice and have arranged for a virtual appointment with my oncologist Wednesday morning to see what she has to say. When these problems started to occur I was told that if it was recurrent then surgery was in the cards. Now that it's occurred three times, this year, and each time I've had to be hospitalized these same doctors are saying that surgery is not an option since more scar tissue may result. It's not a matter of 'if' it's a matter of 'when' and one of these times might not be as easily managed resulting in emergency surgery.
I just wonder if the number of Covid cases occupying hospital beds has something to do with this.
I'm hoping to hear that they'd consider doing the surgery laparoscopically which is what has been suggested by the Cleveland Clinic since there will be minimal invasion, scarring and down time. Here's hoping that will be the case if not I'd like to know why not and then head off to Cleveland.0 -
@ToughAsTeal
I was offered a PICC when I was first treated and we the Gemcitabine that was part of my chemo started to scar my veins. But I refused and suffered through IV's. I knew I wouldn't tolerate the nuisance of the PICC and, as is usually the case with me, the site would end up either horribly irritated or with an infection. This last time they offered the same along with the option of the chest port, and once I got over my squeamishness about getting the port installed with only local anaesthesia, I opted for it. By then my veins were totally useless so I had to do something. Haven't regretted my choice since and getting it implanted was so easy peasy that I now laugh at having been nervous. BTW, they can use the port immediately after implanting it. You don't have to wait to heal first. I had chemo the day after and all she did was pull back the bandage and badda bing badda boom it was operational. Hope you have as good an experience as did I.1 -
@Rad oh Thankyou reminder I need to put into calendar estimate for my 2nd shingle!0
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@Fearless - Vol Mod Thanks for checking in with all of us. Yes we are definitely celebrating. I was successful in getting into the Clinical Trial and I had by first chemo treatment Tuesday. Good news is that so far I am tolerating it well and hope it stays that way. Thank you everyone for your support. We are all hoping that three times is the charm!
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Have been absent from the chats over the last while, but always try to read through the conversation after the fact. Was glad to read about some of the recent good news stories.
@gaylestorm how lovely to have Christmas in September - and it sounds as if it was an amazing one! Also good news that chemo is back on the table - nothing like 2 Christmas celebrations in one year!
@ToughAsTeal - glad to hear that there has been no spread and that you're doing well with the current treatment!
@Taita - good news about the possible clinical trial - keeping fingers crossed for you.0 -
Great you were able to join us today @Rad Are you at work or taking some time off? We'll all be rooting for a good blood work result for you gal. How you're feeling makes it sound very promising. Good for you on the shingles vaccine. My husband and I had ours last year. Shingles is not something we really think much about, or at least we didn't, but amazed at how many people I've talked to who've had a case of it, some very bad. You're wise to have had had it.0
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@Annie1950 question… does the Cleveland clinic “talk””share info” directly to oncology team here?0
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@Annie1950 I seriously doubt the drain on beds because of Covid would result in being told surgery was not an option at all. I think more that the news would be timing. So truly they don''t seem to think, here, it is the option that the Cleveland Clinic says it is. But you're doing the right thing using the word that I use so frequently I'm sure it drives my oncologist crazy....WHY? For me the days of ...if they say it I must believe it...are gone. I want to know WHY...and what other options they considered. And if none of those are available to me, then WHY? This is all part of our advocating to ensure we get the best treatment possible. So good for you. Let me know what they answer with?
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@Fearless - Vol ModI took today off for my 2 appointment0
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@ToughAsTeal Once they have all of your information, including blood work, scans etcetera they source it to the specialist (s) at the clinic and once a diagnosis and a treatment plan is worked out they phone you with the results and follow up with a letter summarizing what they feel are the best options. I've never asked them to talk directly to my doctors here so I'm not sure if they would 'talk' to them. When I have my virtual appointment with my oncologist Wednesday morning I will ask .0
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@Fearless - Vol Mod, I am back home now - and yes, it was a great trip! The wedding was in my now son-in-law's backyard. Will try to share some pictures once I get them...they had a photographer taking photos and videos.
Travelling and getting on a plane after almost 2 years - and then to a busy city like Toronto, did seem very strange at first. I was surprised to find how insecure I felt about many things - Covid, mingling with so many people, self conscious about my health and appearance, etc. It took me some time to relax and feel like me again. Possibly still some ptsd symptoms that I suffered from when I was first diagnosed.0 -
thank you @Annie1950. I didn’t know how that worked. I file a lot of stuff in my brain for retrieval if I will need it (well, in my notebook, or like here where I can search)0
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@ToughAsTeal
@Annie1950
that's a really good question and an answer I'd like to know, as I'm sure would others. So Anne, let us know what your oncologist here has to say about open communication between doctors here and those down in the US.0 -
@Fearless - Vol Mod The Study is PHL-098/NCI 10150 and it is Phase 2. It is a randomized study with an Arm "A" (new drug) and Arm "B" Taxol and Avastin. I fortunately got into Arm "A". YAY!!! The drugs are a combination of anetumab ravtansine with bevacizumab (Avastin). I get it every week. We go to Toronto every Sunday evening and come home Tuesday afternoon. Blood work and Dr. Visit Monday morning and treatment Tuesday morning. I am having my port put in on Monday. Had one in my first line for my IP treatment. Will keep everyone updated.
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Finally got some “Great Lakes “ therapy under low UV… took our daughter (now 2nd year Western) to Port Stanley lunch on the beach restaurant for her birthday. What a gem that town is! And it was so very good for all of us. Truly de-stressed, despite the tornado warnings and worry to keep stupid picc dry.1
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@Tinazzie
I'm glad you just shared how you were feeling as you stepped back out into society again because I can admit I am very much the same. This farm I live on, in a community that I didn't have a chance to build a social network before I was diagnosed, and combined with Covid has literally left me almost a hermit over the past five years. And I do find huge reluctance when we're invited to social engagements to step outside my new comfort zone. I am so self conscious of how different I look, my mobility issues, even my ability to manage effectively in an unknown environment...all completely the opposite of how I was pre cancer. Truly, when they say your normal once you complete treatment is really a new normal you have to learn to adjust to they are right for many of us. So, at the least gal, don't feel you're alone in how you felt and I'm so glad you did take the plunge and had such a great time.1 -
@Fearless When I was diagnosed in March of 2020 surgery was not an option for me due to the pandemic. Fortunately there was a break in the number of cases last summer and they managed to fit me in for debulking surgery and a hysterectomy. I'm a little suspicious when it was clearly an option earlier on this year when the obstructions started and now isn't.0
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I have my 1-year post chemo appointment coming up soon and pushed for a CT scan and blood work before I went on holiday, so have been anxious about those results as well. But...keeping the hope.0
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@Taita thank you for sharing about the trial! Patient “yay” won’t show up in report when the results are published. It’s a big missing piece on the human side of things.1
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@Taita
Fantastic. I believe the anetumab is a targeted antibody therapy that's shown some interesting results. in combination with Avastin will be interesting to see but it sounds promising. Yes, please keep us informed on your progress...all of which we hope is very very positive.0 -
I am glad for so much info sharing. I hope everyone has a good week. Let’s go, Blue Jays.1
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@ToughAsTeal I agree, information sharing is so important and this site is a perfect vehicle for it.0
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Have a great week everyone:)0
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@ToughAsTeal
your point is well taken about the human side. I have mentioned in past that I do some work for Astra Zeneca on its patient partnership program where we are asked to consult from the patient perspective as they develop and roll out new new treatments and programs. And OCC has a similar program that helps advise the professionals managing the clinical trials that are part of the OCC work. But from what I can tell this is relatively new. It's great though that these organizations and the medical profession have become more focused on the patient and making our experience a better one. Hopefully we will see that 'yay" on a report one day.0 -
Nice catching up with all of you. Hugs and best wishes for a great week everyone!0
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Yep, it is "that time" again ladies and I can't say enough about how much I missed everyone last week and am so glad so many of you were able to check in today.
As Rad said, good luck to everyone as you continue to move forward in your journey, whether it's getting tests, getting results, getting treatment, or just hanging in and hoping for the best to continue.
See you all next week...I hope.
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Enjoy the weekend everyone!!0
