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!
TEAL THURSDAYS - Sign in and CLICK HERE TO ENTER LIVE DAYTIME ONLINE CHAT (1pm EST)
Comments
-
@ToughAsTeal
on the subject of the IV Vitamin C, all I know about it is that it's referred to as IVC and used in naturophathic care or integrated care settings that include naturopathic and other non traditional treatments. I've never heard of it employed by anyone I know here but there may be gals who have used it. You might want to open a discussion topic to see if anyone in our community responds. But always best asking the experts, your cancer care team.
There is a session on Integrated Medicine Saturday afternoon at the Symposium you may want to attend for sure. Check out the agenda. You may be able to submit a question beforehand.0 -
Just remembered this chat option today. Too late, but just in case, does anyone know anything about PARP inhibitors? I am on my initial chemo treatment with Carbo/Taxel, responding well as of fourth cycle yesterday, and will be done by mid December. Dr. quickly mentioned starting me on PARP inhibitors, but no details, except that I will be contacted by drug company re compassionate funding program. I am not a BRAC 1 or 2 mutation person, and am stage 4 (pleural infusion was symptom last July). Don't know if there is more than one drug, or one drug company involved here in BC. Anyone know anything about this program?
0 -
2PM ET gals and time to say so long for another week.
@ToughAsTeal hope the funding for your Avastin gets approved and it's added to your protocol for your next treatment. Keep us posted. And keep up that great sense of humour you have.
@Readersmaven hang in gal. It's been bumpy for sure and I'm not about to say it won't continue to be bumpy. But please remember we're here for you. And feel free to reach out on private message function if you're not up to sharing with the whole community. I am always here if there is anything I can help with.
Until next week, my thoughts and prayers with everyone in our community. Here's to new treatments, new trials, more manageable effects and just getting the best out of every day we have.
0 -
Hi @PaulineJ Sorry you missed us. But since I'm still on I'll answer as best I can.
First of all I am answering on the assumption they are intending the PARP for maintenance post primary treatment and not a as a clinical trial. The former being the case, and not being BRCA, in all likelihood Niraparib (Zejula is the trade name) is likely the PARP they will recommend. It's oral and generally comes in three dose levels 100, 200 and 300. Some start you low and raise dosage over time, others do the opposite. All depends on side effects. Some women tolerate it very well. Others do have significant side effects which outweigh the benefits. And there is no guarantee the drug will work or for how long. Your cancer care team is the best to ask questions and closer to completion of your primary treatment someone will go over it all with you in detail.
You are always at choice to take it or not if it's offered. But doing some research in advance will help with the questions you might want to ask in preparation. Go to the search function on this site (upper right) and key in Zejula and/or PARP and it will pull up the recent discussions on the topic. Also the regional directors at OCC might be of help to you. I can't recall what province you're in but you can go to the OCC site at https://ovariancanada.org/about-us/contact-us and look up your regional director. She'll be very happy to provide some advice on how to prepare for that discussion with your cancer care team. I do believe OCC has been tracking input from our community on the effects of Zejula over the past year.
As for funding, these drugs are very expensive so do rely on support from your cancer care team/navigator to find the best funding model available to you. It does differ from province to province as do the criteria for use of these drugs.
I do hope this helps somewhat. Good luck finishing your treatment with the desired results and in making an informed decision on taking a PARP if appropriate and offered. I can tell you I was on a clinical trial using a sister drug of Zejula, Olaparib with no real side effects and it kept my cancer in check for almost two years.0 -
Thank-you for responding. I will get in touch with my doctor to find out more. There was no mention of a clinical trial. Yes, I did a search on OVDialogue for PARP, but of course did not know the name of the drug. I will try to get that information from the doctor. Didnt think of contacting the regional director but will do so. Thank-you for all the tips!
0 -
@Readersmaven ,sorry to hear about all you have been going through, I will keep you in my prayers and please stay positive. @Fearless - Vol Mod and @ToughAsTeal, positive vibes to you both on your treatment. Sorry I am not able to join in on Thursdays because of work but I do read all the comments later and a great weekend to everyone.1
-
@Rad thx so much....its been tough the last few months but I'm feeling more positive now! Appreciate the support. Have a great weekend!0
-
It's November 4 and WELCOME TO TODAY'S LIVE ONLINE CHAT.
It was nice to see, at least where I am, the weather really held nicely for the little 'uns out trick or treating. The towns around me, Bath and Napanee, pulled out all stops this year to ensure the children had a great time, and by osmosis, the parents too. Both FB sites were full of pictures so I was able to enjoy the spirit of the event vicariously. We used to be in a neighborhood in Toronto where we'd typically have close to 200 come knocking at the door. What a change here in the country where don't get any. How did everyone else spend their "hallowed eve"?
And, I just received a picture from a friend in northern Ontario of a snow covered laneway. I don't know about all of you but I'm sure not ready for snow yet....brrrrrrrr.
This weeks updates:- If you haven't, clear some time and register for the Symposium this weekend. I'm especially keen to hear about the integrative approach to treatment and the use of cannabis among some of the sessions being offered. And got my kit of products to use after the session on makeup and skin care (preregistration required) and blown away at the quality and amount of products they sent.
- Last Teal Teas for this calendar year are this month. The schedule and registration links are posted. These virtual sessions are intended to pick up again in the new year.
- No more speaker's sessions for the balance of the year.
And that's it for updates so let's get started with our chat today.
If there's any one new, just a reminder that you can follow the conversation anonymously by not signing in, but if you wish to participate you must sign into OVd first and then click on the Teal Thursday discussion topic on the home page.Otherwise ladies, who's with us today? How are you? Any news to share?
0 -
Hello and happy Thursday, @Fearless - Vol Mod0
-
Hello,
Fairly quiet Halloween here, we did have about 40 kids, used to get 100s!
No real update, heading off for blood work shortly and phone call with dr. I'm planning on asking about Avastin. Chem tomorrow.
Still struggling mentally, finding it difficult to deal with lack of energy this round. Of course change in weather doesn't help.
How's everyone else doing?0 -
@Readersmaven, I missed last week's chat - but was glad to hear from you after a long time. I'm sorry to hear how physically and emotionally upsetting the last few months have been. But glad that you are back on the saddle again and am hoping things go well.0
-
@Tinazzie thx for the positive thoughts. I'm trying to stay positive but as I mentioned, the lack of energy is the part I'm finding the most challenging .0
-
No change in my health - still struggling with the bowel and hernia issues. I have an appointment in January for a physical examination, and a colonoscopy to determine possible causes for the blockage, following that, there will be a decision on the hernia - surgery or not.0
-
How are you @Fearless - Vol Mod?0
-
@Readersmaven it will be interesting to hear what your doctor says about the Avastin. Wonder why some of us get the combination and others just the Caelyx. I would imagine it's all dependent on what the desired result is and which drugs will best help achieve it.
Have to admit I'm not feeling great after my first treatment last week. None of the blistering hands & feet or mouth sores that are possible, but the fatigue is awful....along with a stiff neck and spine for a couple of days...constant queasiness and chills that come and go. I do hope my body adjusts to this stuff. Next is just an Avastin dose next Wednesday and then off another week so we'll see I guess.
Should mention I bumped into a gal in the clinic waiting room and she's now almost 10 years since diagnosis. She had one recurrence a year and a half after primary treatment that was managed. Then spread to her brain a year later and like you she had radiation. Then awhile later it was in her liver and back into chemo. Today she's on a PARP, I believe, and so far so good. NED for the past two years. So regardless of how hopeless we sometimes think the progression of this disease is, there is hope out there.
Are you seeing anyone for the emotional challenges? I'm about to reinstate my meetings with my gal in our social work department in our cancer centre. She's been enormously helpful keeping me balanced and in the right perspective. Highly recommend that kind of support if you don't have it already.0 -
I've also been hearing about a 3rd vaccine dose (as opposed to a booster) for those in active cancer treatment. How does that work in Ontario? Do the cancer clinics send out letters to those to whom it applies?0
-
@Tinazzie sorry to hear the bowel and hernia issues continue. So far no blockages for me but it is one thing I really fear. That condition seems so prevalent for most of us in recurrence. My hernia though drives me crazy. They call it small but to me it feels like the size of a baseball and right at my midriff making anything I wear with a waistband very uncomfortable. I don't know why but they seem very reluctant to deal with our hernias. That said, they did try to close mine only to find I have a wall of adhesions blocking the way so they gave up. And like Readersmaven, this new chemo is really causing me a lot of fatigue, much more than I've ever had before.
0 -
@Fearless - Vol Mod thx for this, always great to hear positive stories.
I had sessions with social worker last year, but have decided to call her to resume sessions. So much has happened last 6 months and as I found it really helpful, I need to get back to it. You've inspired me to call her when I get back from lab work!0 -
good morning everyone.
Halloween in vancouver was great! so nice the adults had their parties on saturday night leaving sunday for just the kids. I have just returned from a sleepover with my 2 grandsons. The one year old thinks he needs to eat every hour all night long now so i relived my daugher and slept with the little guy to hush him up. First night he didnt eat. lol.
It seems that there is a large group on Caelyx now. I have the dreaded mouth sores. and fatique. I'm hoping that my body just learns to cope with it. Its not like I have a long list of things to do. Does anyone else have mouth sores and if so what is their cure.0 -
Hi all. Avastin = fatigue. Am struggling to keep eyes open, but just got off phone trying to cancel Reliance contract.. and wanted to check in here. My partial blockage better with diet and restorolax onky0
-
@Tinazzie i had to get a special form filled out by dr to get my 3rd vaccine here in ontario. Got my shot one day before chemo last month. Got my flu shot same day, in the other armln1
-
@Fearless - Vol Modencouraging bump into the 10yr gal 2 yrs ned0
-
@gaylestorm thankful no mouth sores0
-
@Readersmaven good luck with the blood work and consult...and the chemo tomorrow. And glad I've inspired you to reach out to your gal too. We stopped our sessions when things were going pretty well but there I was last week feeling a bit more fragile than normal and said to myself...why are you trying to do this alone, Kathi. So I picked up the phone and what a godsend she's been once again.
@Tinazzie I've been following the Covid booster/3rd dose info closely in Ontario and like the roll out of dose #1 and #2 I as confused as seem to be most people on who gets what, when. As far as I've been able to determine booster or 3rd dose is the same shot, just the purpose and timeline different. 3rd dose for those where ! & 2, because of age/condition don't have the full level of efficacy so about 28 days or more after #2 they get a 3rd. Booster is to top up efficacy when it begins to possibly wane...around the 4 month or more. That said, I've seen the Ontario list of who it applies to and we don't fit with the criteria for those who will get it first. Yet, the mother of a good friend got her 3rd because she's in long term care....then her daughter was given her 3rd as her caregiver yet that category is not on the list. My local pharmacist says I am entitled, the cancer center says we're not yet. So totally confusing. And of course they do say we'll be notified when our turn rolls around but I wouldn't be on it. So I intend to be proactive and if my pharmacist says he can give me the shot when his next shipment of Pfizer comes in then I'm going there and getting it done. Of course we also have to consider when we get it. My oncologist, for me, says a day or two before a chemo treatment is optimal. Could be different for you or others. So I would defer to my oncologist for advice.0 -
I'm wondering if the fatigue is Avastin or the Caelyx and thinking perhaps more Caelyx driven, since those on Caelyx-only are also feelling this awful fatigue.
No mouth sores for me yet but I did post a list of interventions a friend had given me for side effects from Cealyx and Avastin and will try to find it. She gets horrible mouth sores and blistering in her hands and feet...more than most would apparently. But after almost two years of Caelyx and Avastin she's tried everything. She said warm (not hot) water with a bit of salt and baking soda to swish and gargle really helps, more so than the special mouthwash they prescribe. And she found some stuff that you daub on a mouth sore and it hardens like a like shell over it to protect it while you eat. I'll find the name of it and post it for everyone.0 -
MOUTH SORES: Here's a copy and paste of what my friend recommended. "A new recommendation for those with mouth sores. My friend on Caelyx who suffers badly from them each treatment...on the roof of her mouth , sides, her tongue...and makes eating and drinking a nightmare just found a gel that she dabs on the sore and in minutes it hardens and keeps the sore from stinging. She calls it her miracle. Zilactin-B gel is the name. If you're interested though, do check with your medical team to make sure it's use is suitable for you"
0 -
@Tinazzie Here in BC they have already given 3 vaccine to cancer patients and liver transplant patients. The vaccine they are giving following pfizer is moderna0
-
@fearless thankyou fe zilactin info
hope for a good week to all and maybe "see" you at this weekend symposium
keep moving forward0 -
Hello @gaylestorm and @ToughAsTeal!
Good luck with your blood work - and chemo, tomorrow @Readersmaven.
Glad that you have a sort of down time before your full cycle of chemo, @Fearless - Vol Mod.
According to the National Advisory Committee on Immunization, the additional or third dose being considered for moderately to severely immunocompromised persons should be distinguished from that of a booster dose. I was looking at this because I am on a hormone suppressant for my breast cancer, and apparently fall into this category.
But still looking into it further.
Yes, it does seem that Caelyx is the 'popular' drug with many this fall. And despite the fatigue, soreness and achiness that comes with it, you are all still here on the chat - and that's awesome!!
1
