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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@JoanEG
Ah geez…just what you needed…a two-hour delay. Hope you got some extra rest as a result 😴. Halfway through…nice milestone. Good luck with your CT scan. I’m sure you are anxious to move onto surgery. Did they give you any indication of when your surgery may be scheduled?Has your oncologist mentioned anything about HIPEC immediately following surgery. I was never eligible for that treatment so I don’t have a lot of info on it…just know that it is sometimes an option for some. Might be worth checking it out on line and discussing with your oncologist.
There is also a procedure called PIPAC. I just looked it up again and it is used when the cancer spreads. I am probably too far along now, but will be asking my oncologist on the off chance that it may be a viable option for me at this time.
Self-advocating is exhausting but without all of the sharing we do on this site, it would be even more daunting!! At least we get some leads here that provide some areas to explore. I am so appreciative of everyone’s generosity in sharing their experiences - it’s not always easy to put everything we are going through out there, but knowing that we are not alone and having the support of the wonderful, strong women on this site makes it a whole lot easier to ask our questions and dump our worries.1 -
Good grief…seems I have a flowing tongue at 5 in the morning 🤣🤣
I was just thinking about the whole selvage treatment drug situation I posted about above. I think I will send a note off to some cancer organizations and maybe political parties asking them to advocate for drug approval at this stage. The drugs are already approved for use and there is positive research about combination treatments at this stage. Just have to get my message ready with supporting evidence, will be a slower process right now with chemo brain, but I’ll get it done.0 -
Good morning Ladies.....looks like when I retired early to bed last night, many a conversation flowed. So wonderful to see.
@hope2022 Welcome....it has been awhile and nice to see you engaged on the site. It is unfortunate that your scan showed progression. The feelings that go with that along with discussing next viable options is a lot. How are you doing with this news?
You are correct, we sure do go through a lot. Whatever your preferred choice of "cocktail" it is, I do sincerely wish that it has minimal side effects for you and reaches the desired outcome. These can be difficult decisions for ourselves as we weigh out what an Onc may present and then what we may find ourselves either through this site or own research; then decide what we feel may be the best choice and hopefully our Onc agrees. I have faith @Taita will respond in the next couple of days which may help you with the answers you are looking for. In the meantime, let us know how we can support you through this, should you feel you need any assistance along the way.
@GloHo LOL when my phone dinged a few mins ago, you are about the only other person in this group that I know can be up at this hour. So happy to have company.
How have you been doing with all you are facing? How is your current treatment going and how is it leaving you feeling physically? Advocating, it is lengthy and time consuming. If I can help you in any way, let me know. I can proof read, help to gather what you need perhaps (let me know what it is) or whatever it is, let me know and I will do my best to assist you.
@JoanEG Wow! The pivotal half way mark! It brings with it some thoughts. Now that you are that much closer to the end, have discussions begun regarding either surgery or next CT scan to determine what things are looking like prior to surgery? Are you every 3 wks for treatments currently? If so, it could be a late Feb/early March surgical date??? Mine was mid March which was nice as I could walk outside all bundled up or sit in the sun all bundled up a couple of times a day which was nice esp after being in the hospital. Certainly makes one appreciate fresh air!
Well ladies, whatever this day brings you, I wish you all well.
I am off to have breakie with a gf I haven't seen since summer, will brave Costco one last time then off to get bloodwork and see my Oncologist today.
Take care all
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@Strongwoman
Good morning. Nice way to start the morning. Have a great breakie! Good luck with your bloodwork and hope your follow up goes well.Me…I’m doing fine and dandy. Dex kicked in! 🤣🤣 Was up extra early this morning!! Had a really good tired (not fatigue) nap last evening and woke up feeling refreshed. Of course, couldn’t get to sleep when I went to bed, and woke up every hour on the hour until I gave up on sleeping and just got out of bed at 4!!! Thanks, Dex!! Just finished floor grout cleaning in the powder room. Have been procrastinating on that task…thanks Dex!!
Health wise, other than the fatigue, not bad. The last couple of days I have been able to suck in my tummy…so maybe some action there? I don’t have ascites, so assume it is tumour/lession related. Being optimistic.I have a telephone appointment with my oncologist tomorrow to discuss the addition of Beva to my treatment but thanks to the chemo oncologist, I’m pretty sure how that conversation is going to go. Not happy about it but you have to figure out how to deal with the hand you’re given. Given that there is no traditional medicine option, I am again going to broach the subject of alternative supplements…namely mushrooms. I am going to look up turkey tail again and try to find specific references of use with Paclitaxel and use specifically for ovarian cancer. There is also another mushroom alternative that I found through research related specifically to ovarian cancer - Cordyceps militaris. There’s also research for both products related to breast cancer so not sure if those references will support my proposal. One of my strategies for my push for this alternative will be to try to get an alternative med Dr to weigh in on what would be best (with details) and present that to my oncologist.Thanks for your offer to help with my communication piece…it usually takes a couple of days floating around in my brain before I even begin to put pen to paper…then a few more days for fine-tuning. It’s such a simple concept, but complex. I’m going to try to KISS it…but still get the message across loud and clear. Probably won’t get to it till the new year…pretty busy with family over the next two weeks. Priority #1 🩵.Not sure I’ll be able to join you guys on Thursday because we are heading to Toronto. I’m sure I will visit the site throughout the holidays…just to keep up with everyone’s progress. So much going on.Now I’m off to the kitchen to make Russian fudge…all sugar…very bad for you…but I cut it up into very small pieces! 🤣 I also want to make Buckeye fudge…may as well do it while I’m in the kitchen already making a mess! See how my stamina is.Good grief…just scrolled back to the beginning of my message…tongue still flowing freely!!0 -
Good morning @Strongwoman and @GloHo I have been up since 5 am PST but I went to bed at 10 and never woke up once until 5. I took 1/2 a zoplicone before bed and slept like a baby in spite of the dex. @Strongwoman I have a CT scan today and I believe that will determine when they will schedule my surgery. I’m optimistic as my bloodwork showed significant drop in my CA markers. My treatments are every 3 weeks with my next one Jan 8th. It’s sounds like you have a busy day today. I have my Weight Watchers workshop this morning. I will take my dogs for a nice long walk this afternoon since they were cooped up all day yesterday while I was having treatment. I’ll ride the dex wave for the next few days and get stuff done!@GloHo good luck with your research. There is a company here in the Cowichan Valley that has done extensive research on the use of micronized mushrooms. Specifically turkey tail and cordyceps. Here is their website. I’m sure there is a link to their research somewhere on the page or you could contact them. This is a very reputable company started by a local family. I hope they can provide you some assistance. I’m joining you on the dex wave today and getting $hit done!0
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@GloHo the company here in the Cowichan Valley is called Purica
https://purica.com/?utm=gad-shrooms&gclid=Cj0KCQiAm4WsBhCiARIsAEJIEzU-1mr5yurPHigD258QRRuT5K46plfIjSdTwlBjr6rli3sQOyuzMSIaAimNEALw_wcB
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@GloHo
I don't join in on Thursday's too often, but always try and read the posts to see how everyone is doing. I wasn't too surprised with my scan results given that the last scan showed slight progression, but under the 20% stable mark. I did have caelyx before, so just hoping that I do have a response to it.
You've posted a lot of good information on this site, so thank you for that. I see that you have asked your oncologist to add Bev to your weekly taxol. I wasn't aware that this may be an option if you have had it prior to current treatment. Are you also looking at other combinations? This is a discussion that I have had with my oncologist before, but she hasn't suggested anything. I'm always looking to see if there is anything at all to increase efficacy of a drug. Thank you for the link, I am interested to look at it. Thats' great that your oncologist is willing to call around to see if there is anything you can add.
I did not realize that there could be an option to pay out of pocket for a a drug that was not approved for a specific cancer.
I'm currently trying to arrange getting tested in Seattle for Elahere. It's a real long shot, but one my oncologist feels is worth pursuing.
Good luck with your weekly treatments and hope you are not experiencing too many side effects.1 -
@hope2022
Good luck on getting into the trial. Is it drivable for you? There is Hope Air out of BC that transports cancer patients to treatment. Might be worth checking out if you haven’t already. Clinics/hospitals usually have a partner hotel for cancer patient accommodation as well. You probably know all this…
I had the same experience on the trial…scan showed progression within stable range…so you are prepared for it…but it doesn’t make it any easier to deal with. So Caelyx is next for you? Hope it works for you!! I had an adverse effect so that one is off the table for me.
The problem is that there is research indicating that combination treatment works well at this stage, but the government hasn’t funded the drugs for this purpose…so not an option. My chemo oncologist indicated that paying for the drugs may be an option…I’ll follow that up with my oncologist tomorrow. I have a list of drugs that have been researched with good results for each of the next two standard of care drugs (Gemcitibine, Topotecan) and will continue to push for those with my oncologist. Not expecting agreement due to the funding issue…but you never know!!My weekly Taxol has been good so far (4 treatments). The last time I had it with Carbo, so had issues with bloodwork and fatigue. But with Taxol only, my bloodwork has been good…I’ve noticed a couple of counts are moving down…but very slowly. Have fatigue and am expecting hair loss.Thanks for letting me know you find my info helpful…interesting. 😁0 -
@GloHo Saw my Onc today. I am thankful I am on top of things. She asked what she could do for me. So I kindly asked that she connect with the Gyn Onc I saw last year to see if they feel I am a candidate for the BOUQUET trial. They will have a better understanding as to whether (a) that I am eligible (b) that I won't be placed on a randomized one (c) it's right for me (d) that it should be my next step or continue same path. I trust this Gyn Onc and we have had good convos in the past. I also will mention that this bloodwork for CA 125 isn't in yet I purposely stopped taking the turkey tail tea this past couple of months. I will return to it after I find out my CA 125 level and then monitor it from there. Fingers crossed it is what I need.
Take care!0 -
@Strongwoman
Hoping trial works out for you! Do you have a timeline when your Onc will get back to you?It will be interesting to see what your CA125 is after stopping the tea. Keep me posted. Interesting stuff.0 -
@GloHo
Yes, I start with the Caelyx tomorrow.
Sorry, I probably wasn't very clear when I mentioned treatment with Elahere (mirvetuximab)....it's not a trial. I am looking to get tested to see if I have a high enough expression of the folate receptor alpha protein, and possible compassionate access to the drug in Seattle. The FDA fast tracked this drug last year for OC. It is still in the trial stage in Canada, maybe another year or two before it is approved here. A real long shot, but I feel it's worth looking into.
Any tips on how to look for drugs for a possible combination to improve efficacy? I look at pubmed.org sometimes and have found some good info there.
I'm sorry to hear about your niece and her cancer diagnosis. I hope things work out ok for her.
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@Strongwoman
Thank you for all your support on this site.
The news yesterday was hard to hear... always hoping for the best of course, and bracing for the worst, even though when you get the news I'm never quite prepared. Still some options left, so just trying to stay positive.
I have thought about going to a Naturopathic Oncologist to see if they can be of any help. I did watch the segment in the OCC symposium with the naturopath and patient, which I found interesting. Anyways, I've pondered this for a few years, but haven't gone down that road yet.
Good luck with talking to your oncologist about the trial. I hope you get some positive news!
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@hope2022
Good luck with your Caelyx treatment tomorrow.Oh…ok. That’s an interesting strategy for getting a drug. Good to know.Finding potential combos has been hit and miss with random searches. Type in things like “approved drugs for ovarian cancer” or a”specific drug name” and “combo” and “ovarian cancer”. I also came upon the term “salvage treatment” …I usually read through research articles and look at different cancer sites. One thing leads me to another…There is a US site that lists a lot of drugs plus a list of combos…then you have to figure out which ones are approved in Canada. (NCI: cancer.gov - in the search engine, type in “drugs approved for ovarian cancer”). Thanks for the pubmed.org lead, I’ll check it out.0 -
Hi everyone. So…I am exhausted. Talked to my oncologist today. Hit a brick wall. Essentially…no data = no funding = no drug. Drugs can be paid out of pocket but are usually very expensive. I have so much going on right now with Christmas that I’ve decided to take a break from all this research stuff until the new year. My brain is fried! Of course, chemo brain is not helping at all!! My next appointment with my oncologist is Jan 8.We are heading to Toronto tomorrow for a couple of days. Will get to see our granddaughter’s school production and the following evening will be spent with my husband’s side of the family. Back home for a Christmas Eve Christmas with our youngest son and his girlfriend…presents, dinner…the works. They will leave on Christmas Day and head to her family’s festivities. We will have a couple of days rest before everyone descends on our place. Then it’s a late Christmas with the granddaughter and New Year’s celebrations with both sons. Then everyone is gone.Wait…there’s more!!! We’re getting a puppy (pending approval but spoke with the foster mom today and she doesn’t anticipate an issue)!!! Probably Jan 2. Can’t wait!!3
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@GloHo I feel that based on your past posts and what you faced today that your decision to hold off and enjoy the now is exactly what you need right now. You are remarkable with your diligence in documenting and sharing your trial journey with everyone. I suspect you have dove into research and research articles as of late which is all good. Your brain requires a rest. I sincerely hope you enjoy all the festivities you listed and be present in mind, body and soul for it all. It sounds like a wonderful line up of family time.
A puppy!?!? Do tell more as you mentioned a foster mom. How did this come about? I feel this is a joyous moment for sure!
How wonderful. Thank you for all you do, the info you gather and share and the support you show for fellow Teal Sisters. Now rest and enjoy.
Thank you for sharing your news. It must have been frustrating at the moment and am thankful you were able to take a step back and pause to see the alternate side of what this will offer for yourself and family right now.
You are ah-mazing!
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@Strongwoman @JoanEG
Thank you for your words of support and encouragement.As for the puppy…as you may know, we lost both of our dogs within two months of each other last year. It has been a year of us denying that we were going to get another 😁. We had been talking and beating around the bush about whether or not we should. The way things work now, most rescues are fostered in individual homes so you can’t just go into a shelter and meet them. There was a “pet the puppy” event at a local pet store on the weekend and we decided to go. Need I say more!! 🤣🤣 Pics will be posted when we get her 🐾.1 -
Hello Ladies.....not sure who is around today but I am here if anyone wants to chat about anything.1
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To ALL I send this message not knowing where any of you 'sit' today and with the upcoming holiday season. I would like you to know that I thank each and every one of you for all you have done this year. This is for yourself, being present and supporting others in the group as well. This journey can be hard and difficult at times and other times can present to us an opportunity to show us another way to be and exactly who we want by our sides as we walk and talk along our journeys. I would like to 'hold' this moment for all of you no matter where you are in your journey and give thanks to many. We are all here for each other and know that you are with a group that cares to the bottom of their souls as so many have similar stories but different journeys. I would like to give thanks to all of you, for all you have done and how far you have come from the start of your journey to where you sit today. So pause for a moment, reflect if you can and give yourself kindness as you continue on what can be for some a very difficult time. I wish everyone warmth, strength and kindness over the next few weeks. Make sure you all take care of yourselves as you enjoy time with family and friends. 3
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Thank you @Strongwoman for your thoughtful words 🥰
My dr has recommended Zejula after my frontline chemo in January. I am trying to gather info and would love to hear from anyone that has had experience with it.Wishing everyone a wonderful holiday season!0 -
Thank you @Strongwoman for being the “glue” that holds us together. Your support and wisdom have helped me tremendously since I found this wonderful meeting place.I had my 3rd round of chemo on Monday, 3 down and 3 to go. On Tuesday I had a CT scan and on Wednesday I got a call from the Victoria. Cancer Clinic setting me up with a phone consultation with a gyn/onc/surgeon. I’m hoping that a surgery date will be not too far behind..1
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@Strongwoman - thank you for your kind wishes and words of wisdom, as always. While I do not share my comments often, I read the posts every week and get amazed by the strength and courage of all Teal sisters.
@flory - I have been on Zejula for about 6 months. Also, you can find information on Zejula posted by others under "Treatment: category, just type Zejula in the search box.1 -
Just want to wish all you ladies a merry Christmas and all the best for the holiday season.0
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@Strongwoman
Thank you for all of your support and inspiring words! I loved what you wrote last week about " two reasons why we ought to try" ... it made my day and I felt just a little more hopeful!
Have a wonderful holiday season.1 -
Hi @Keepcalmandbreath how are you finding the side effects on Zejula? Are you taking it after frontline or for a reoccurrence?0
