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!
Looking for Zejula users
I just wanted to know if there were other ladies out there who are taking or going to be taking Zejula. Tagging @nadiaC from our recent discussion. I am high grade serous 3C, diagnosed Oct 2019. Will be starting Zejoula today. Reaching out for input and discussion regarding dosage, side effects, when, where and time frame.
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Thanks for starting this discussion @Cecile21. I’m high grade serous 3C, diagnosed June 2020. I just finished 6 and rounds of docetaxel/carboplatin. Pending bloodwork, I will start Zejula on Nov 18. I’m getting it through a clinical trial at the Royal Victoria Hospital in Montreal. I’ve been told the starting dose is 200 mg and that I will have weekly blood tests for the first 4 weeks. If all goes well then the dose will be increased to 300 mg. I would love to hear from others taking this medication.0
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Good morning... I have been curious if this will be option for me.. diagnosed HGS stage 4a in April..4 rounds chemo (technically 3, as #2 was allergic reaction within 15 min and all had to stop).. successful surgery beginning of Sept with tumour removed and 2 good drops in CA125 since.. 2 Chemo’s since surg with 3rd (and I am told final) Nov 20. At my most recent follow up, Dr told me after chemo I would be standard 3 month check ups for 2 years. no Olaparib. However at the recent online OV symposium I learned of nuriparib? Or did I read about it? (Is this different than olaparib?), recent approved for Canada? (Maybe I read that?) and I seemed to meet all the criteria. She is looking into that for me. Any insight you can offer me? Feeling a bit overwhelmed.
Twitch thanks
Laura1 -
Hi Laura. Niraparib and Olaparib are two different medications. From my understanding, Olaparib is prescribed for recurrence. Niraparib was just approved in Canada as first line treatment for maintenance, but I don't know if the provinces have worked out their funding models for it. It's worth your doctor looking into this. If you have private health insurance, it might also be worth check with them about coverage. That's all I know at the moment. Good luck and please keep us posted. :-)0
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Haha just saw my typo “twitch” thanks. ...too much Halloween candy. Thank you Nadia. I am in Ontario, so I will look into that plus call my extended health coverage. For the first time in my life, I hope I will be considered “high maintenance” for sure! I will definitely watch this post.
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@laphilly it sounds like your treatment is going well, other than the allergic reaction. That's great news.
Yes, unless you're BRCA positive, Olaparib/Lynparsa is not available to you as a maintenance treatment. The great news is that Niraparib/Zejula has been approved and it does not require a BRCA positive result as one of the criteria. Leave it in the hands of your oncologist to determine if the drug applies to your particular situation. That's the first step. Then lean on your cancer center to help determine funding possibilities if the drug is appropriate for you following the end of your chemo.
I would also suggest you ask about trials on an ongoing basis if the Niraparib is not suitable for you. These come up fairly regularly and you want to ensure you are being considered for any that might be appropriate to your case. I can vouch for that given I've been on an Olaparib clinical trial almost two years now that, given I am not BRCA positive, I would not normally have qualified for. For me it was all timing...my recurrence and the launch of my particular trial.
Good luck with completing your treatment and do let us know the outcome of your investigation into the use of Niraparib moving forward.0 -
@ laphilly As I said I am taking Zejula ( niraparib ). I had to wait until my genetic testing was complete. My debulking surgery was Jan 2020. Chemo completed Apr 29. I did not receive the order for the blood draw until mid July. They do a complete family history. The results took about 5 weeks. Received results early Sept. I am BRCA negative. I received the call that I would be taking niraparib Oct 23 to be started Oct 30. I have drug coverage and am waiting on whether or not they will cover. The company representative assured me that if I had no coverage they would supply under compassionate terms. So I have received my first 28 day package by Purolator ( on time) .It seems they will go ahead while waiting for approval (yes or no) by Green Shield. Thus far no side effects. Blood work every week for 4 weeks and then every other week for a month (so far)1
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This is all great info thank you all so much! My blood work genetic testing came back neg too, also, they did further genetic testing on cancer cells from surgery (full hysterectomy everything gone, cantaloupe tumour, and debulking) and still neg. I was able to see in my manulife site that it is not covered. I will have some time now to prepare for any other financial options, or see if they also have a compassionate pre-approval. Glad to hear purolator got there in time! And bloodwork was going to be another question from me so Thankyou for that too. Is the bloodwork checking the standard pre chemo type levels? CA125? . Fearless, Thankyou as well re working with doctor and team re funding. It had been mentioned to me at one point that funding emigrated be available and I completely forgot til you wrote it. (Also dealing right now with sudden loss of my father, estate matters... so much in my brain, and in my heart). I may have missed my early evening walk in the blue/pink/orange sunset.. but got a solid 2 hour nap. Always move forward.
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Zejula, just heard about this one yesterday. Oncologists wants me to try this for maintenance. I am still trying to decide if I should try this. I just finished chemo for Ovarian Cancer on Sept 30th this year. This is great info that I have read so far. Thankyou all for sharing.1
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I've been taking Zejula for almost four months. My health plan would not cover the cost ($6000 per month, so I don't really blame them), so the drug company is giving it to me on compassionate grounds in exchange for my data. Good deal, as far as I'm concerned. This was arranged by the hospital in Peterborough. I had to fill out a few forms and agree to the data collection.At first, the drug did give me side effects, which included headache, feeling fuzzy in my brain, some nausea, and some abdominal pain. I persevered, however, and the side effects stopped after a few weeks. My CT scan in October did not show any growth in the one tumour that can be seen, so that's good news. However, my CA125 keeps increasing, and that worries me. The jury's out on whether or not this drug has actually stabilized the cancer. The tumour is on my vagina, and it secretes a nasty-smelling discharge, which had been minimal back in the summer, but is continually increasing as time goes on. I think it's a bad sign., especially in conjunction with the rising CA125.0
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Good morning. Thank you for sharing your perseverance. That word is sometimes my only daily goal! Sounds like you are doing good job tracking side effects and changes. My friend (who is going through breast cancer) always encourages me to call my oncology team, even for what I think might be minor, in between my appointments. By nature, I don’t like to “bother” people, but can say I have never regretted making the call. I am still trying to understand the significance of CA125 levels and changes. I hope you might give an update after your next appointment or feedback from doctor?... keep moving forward (Walt Disney)
Laura0 -
A good website to learn about CA125 levels and their meaning is the Mayo Clinic. It says that a normal level is below 46 units/mL. Mine are already way past that, and rising. In September they were 150. I'll find out October tomorrow. Not a good indication at all. In 2018, when my cancer recurred, they were up to 2406. Shocking!
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Went to see my oncologist yesterday. Surprisingly, my CA125 had gone down slightly in October, to 130. That was good news. I won't find out the November level until I see her again in December. Being one month behind is annoying. This happens because I see her on Mondays, and give blood that morning. The CA125 takes up to 48 hours to process, so I can't get it the same day. I asked the doctor if I could give blood the previous Thursday or Friday, and she said yes, as long as my bloodwork stayed normal. That will make things easier.0
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I am leaning towards not to take this maintenance drug. So many side effects and one is raising blood pressure which concerns me.0
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@Rosebud65 The Mayo Clinic website always has good and reliable information but it's important to note that it aligns with US standards not Canadian. For example here, the CA125 normal score is 0 - 35. That said, the CA 125 can't be relied up on other than from a trending perspective and in concert with symptoms and scans to determine whether any medical intervention might be necessary. An steady upward trend in CA score above the 35 level, and generally in significant bumps, is only an indicator that investigation MIGHT be in order. Coupling that with persistent symptoms usually means a scan might be necessary.
@babs272 Far be it from me to suggest you do anything other than what you believe is right for you. But do think carefully about passing on the opportunity to try the Zejula. Yes, it appears to have side effects; for some patients worse than others. After all, PARP inhibitors are toxic, just like chemo. But side effects can often be easily managed with medications or changes in dose levels. Usually though there is a short window after chemo that a PARP can be started. If you miss that window then there's usually no turning back the clock. You can always start and if you don't like it stop it. Do make sure any decision you make is based on good, accurate information. When I started Olaparib two years ago I was concerned about introducing something else into my system and what that might mean. But I armed myself with the information I needed and felt secure that if I changed my mind I could stop any time. Yes, I had some nasty side effects the first month. Some regular Tylenol and a drop in dose stopped that and for two years, other than mild queasiness and keeping an eye on my red cell counts I had no problems. For me, it was a matter of either saying no and leaving recurrence to further chemo, or giving it a shot. If it worked and I could tolerate it, then wonderful. If I eventually stopped it and had to go back to chemo then I could at least know I'd given it a try. No regrets, no what ifs.
I'm sure you'll make the right decision for you. I know how daunting the thought of more possible side effects can be just as you come off chemo. We all want to be as far from anything toxic or disruptive as we can. So I totally understand your concerns.
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Do you know what the window is to start it? My last chemo is this Friday. I figured, if I am candidate for Zejula, it likely would not start until at least 3 weeks? Does anyone know difference between CA125 Architect and Ca125 orthodox is? I can see both numbers in “my chart” online. And the are different. Thanks.0
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Auto correct... CA125 Ortho... not orthodox0
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I think they recommend waiting at least 3 weeks after last chemo to let blood values stabilize again. I don’t know if there is an optimal window after chemo though0
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Thankyou😀😀😀🌻0
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I looked back at the information from chemocare.com, which was given to me when I started Zejula. It says that the drug is usually started within eight weeks, but that seems to be a guideline. You could discuss this with your doctor. Also, high blood pressure was listed as one of the less common side effects. My main side effects were some of the more common ones: headache, nausea, and fatigue. I was happy when they all disappeared after a few weeks.
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Good morning all. Good check up yesterday. Yes, ortho is the new test process JCC is using. Thanks Fearless! Ca125 is 32😀. Looks like I am good to go with Zejula. Dr is applying for compassionate funding. She feels it will be approved and my next appointment in Dec will be for bloodwork and getting the prescription. Sent me home with a lot of information. (Canadian source). So, I realize this morning at 430 am I now shift from fighter to survivor mindset. They have referred me to JCC psychologist. While I had some pain with the tumour, other than being told “you have cancer” these past 7 months were not tangible. I wonder, if I had a lump I could feel, then it went away, I might be adjusting better. Very similar to early miscarriages (we had 3, many years ago). Never felt, or looked pregnant, so we were dealing with an intangible loss. Many who have haven't experienced this don’t understand. Expectation I should be soooo happy that my surgery went well... why aren’t you happy? I did however get great advise (sarcastic) for the following cures for cancer: eat more asparagus, drink a maple syrup concoction daily, and watch a “you can cure yourself” documentary. Good thing we enjoy asparagus and tolerate its own side effects lol.. I really enjoy the occasional shot of Sortilege maple whiskey from Quebec (hang counts, right?)... and comedies are more my genre choice for a laughter cure. Sorry, I am having a dexamethasone induced early morning vent. Yeah Zejula.1
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I started on Zejula 6 months after finishing chemo
I think my oncologist was waiting on genetic results
I am familiar with the 8 week time frame but am happy that I got the opportunity to try this
Had a CA125 just before starting which was 16
Just waiting on the CT results
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Good morning., now that you have been on it for a few week (and I know it’s different for everyone), are any side effects manageable? Happy to read that side effects can settle after a while. Was ct scan before you started it?0
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The side effects thus far have been manageable
I started Oct 28. At first no side affects . Currently slight nausea.Feeling somewhat fatigued now but I suspect that will resolve. The CT was after 2 weeks, probably due to scheduling restrictions.0 -
Thankyou! Enjoy today cool but sunny weather in Ontario, before we get lots of snow tomorrow! (Makes me annoyingly happy)0
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I have been on Zejula since September. My doctor prescribed 300 mg a day. My side effects were terrible. My heart rate would go up to 160 bpm just by taking a shower and getting dressed. I had difficulty breathing and had pressure in my chest. I actually thought I was having a heart attack nearly every night. I had extreme fatigue and then found out that I became anemic. After a blood transfusion I felt born again. My doctor took me off Zejula for 3 weeks. I’m now back on 200 mg a day and side effects are more manageable. Had to have a transfusion of magnesium last week but it’s a small price to pay when I think Zejula may prolong my life so I can watch my grandchildren mature.I’m grateful for each day of my life and I’m living it the best I can for as long as I can.
I don’t know if there other options out there.3 -
I started at 200 mg and found it manageable. However my platelet count dropped and liver enzymes increased to a point that my oncologist reduced the dose to 100mg. He feels that is sufficient although I wonder. My hgb is stable at 118 and no concerns with the rest of the CBC . WBC and absolute neutrophils normal. My platelets had dropped but were not critical. I think that I shall discuss in more depth at my next appointment . It doesn’t seem that anyone else is at the 100 mg dose that I have noticed at any discussions .0
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Hi @Honey. Welcome to our community and for sharing your experience with Zejula.
As I expected, as more and more of our community share their experiences with this drug...and really with any treatment....clearly everyone's response, while having some similarities, is also quite different. Your reaction to the max dose of Zejula doesn't surprise me. Varying levels of intensity of the side effects you mention appear to be fairly normal. And as with any drug, there will usually be side effects of some kind. As you said, a small price to pay if the side effects are largely tolerable. I'm glad to hear that lowering dose has helped.
As for other options, your oncologist will be keeping abreast of all new treatments available, either approved or trial. You can always ask about trials as an option but that would likely mean giving up the Zejula. Lynparsa, to my knowledge, right now is the only alternative that is designed for the same purpose as the Zejula. However, on top of criteria such as platinum sensitivity, Lynparsa is for BRCA positive patients.
Wishing you the best and hope you'll continue to share you experience with our group, as well as reach out if there is anything we do to help you.
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I get to ring in the new year, starting Zejula tonight! 300mg. Take that 2020!I appreciate reading everyone’s comments. I am nervous right now, but will dig in my heels with the first pill I swallow. Here we go!For 2021, wishing everyone more friends and family RealTime instead of FaceTime and virtual hugs.0
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@laphilly, good luck with your first doses of Zejula. Just keep your medical team on top of any side effects..although hoping none or they're tolerable. You're starting at high dose level so can always be reduced without significant impact to the efficacy. Wishing you continued success in 2021 and the years beyond.
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