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!
Length of time on Lynparza (Olaparib).
Comments
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Hello @Laurie - hope you are managing well.
I can only offer that I was on Olaparib for about 8 months - and am BRCA negative.
Hoping others can post their experiences.0 -
I've been on Lynparza now for two months, starting month three this week. I am BRCA1 positive. My dosage needs to be slightly reduced for month 3 as my platelets aren't holding up too well....otherwise no side effects for which I am grateful!
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Hi.
I am quite new to this site and hope that I can find advice/support through everyone...
Since September my life has been somewhat of a merry-go-round... I was diagnosed with Ovarian Cancer and more recently the BRCA2 gene. And now I am about to start this new drug Lynparza after having had 1 round of Chemo. I am a bit nervous but at the same time hopeful as it is a relatively new drug.
If anyone else has thoughts on this drug I would be interested.0 -
Hello @KiwiChick... welcome and you will find so much support here.
I hope this message finds you doing well and getting the answers you need at this challenging time!
If you require a copy of the resource guide - By Your Side - you can order it here:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources
Yes, ask lots of question from your medical team.
You can also search in the top right - search bar - for topics under Lynparza or Olaparib. There are many on this site that have taken it /are on it currently / or participated in trials, etc.1 -
Just noticed this so a bit late out of the gate, but I have been on Lynaparsa (Olaparib) on the Light Trial since February 2016 and no, I am not BRCA positive. In fact this trial is to assess the impact on non-BRCA patients, but who do show an HRD mutation in the cells of their primary tumour and who are platinum sensitive as a treatment for recurrence. My response was very postive with CA125 going from 350 to 51 in the first month and then 18 in the second. The two small tumors also shrunk to 50% in size during that time. Since then, until recently, all has been stable. Right now we are monitoring the possibility that the drug is losing its effectiveness. We've had some challenges with CT scans (my veins and IV's are no longer as compatible as in past and so, scans are not as clear. Keeping my fingers crossed that the tiny progression in tumor that was noted on that last was either an error or it's since stabilized. If not, the drug has been a blessing in keeping me out of more invasive treatment for a significant period of time.3
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Hi just noticed this post as well....I’ve been on Lynparza since Aug 2018 and I’m BRCA negative as well1
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I'm now on month 3 of Lynparza. My dose was reduced from original 600mg to 500 mg daily starting month 2, and that's been fine with no side effects whatsoever. My bloodwork continues to be in the acceptable ranges (my platelets were trending low on the maximum dose). I am BRCA1 positive. I am in the "paid by the manufacturer" program for this drug, and I'm very grateful for that. Today is my one-year anniversary of diagnosis; my husband and I will celebrate the "year behind us" this evening with a close friend who was there for all my chemo treatments (which were done in February). I am so grateful for the medical research that happened years before now, which is enabling us to experience treatments today that were only someone's dream in a lab at one time. Go dreamers!
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@apricotsinmypocket
Hi, and great to hear from another "druggie" and congratulations on your one year anniversary. You BRCA positive gals are so fortunate the drug was approved recently and for you, more so being on a manufacturer funded supply. My situation is different being on clinical trial but through it I've met a significant number of women, here and internationally, who are enjoying the fruits of all the research that went into development of the drug. I've met women who have been on it as a maintenance drug for significant lengths of time...one 15 years now and part of the very original trials out of the UK, and another now 8 years and holding here in Canada. And there are many many more.
Enjoy your celebration tonight and I'll expect to hear you're celebrating again next year and the next and the next.1 -
Congratulations @apricotsinmypocket! I hope you and your husband had an enjoyable celebration of your 1-year post-diagnosis anniversary! I'm coming up on 2 years (July 5th) and I, too, am so grateful for all the research that has gone before. I'm not on Lynparza as only my tumor tissue itself was BRCA positive (not my blood). But it's such a comforting feeling to know that if I have a recurrence, the drug is there for me. It was already prescribed but wasn't covered, and won't be unless and until a recurrence happens. It feels like a '"safety net" to me, like beneath a trapeze act :-). Hey, @fearless, I had no idea that there were studies on this drug going back as far as 15 years OR women who've been on it for that long! We really do learn something new every day! Do you know why we here in Canada are being told that we can only be on it for a 2-year period at a time?1
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@maggiemae
In answer to your question, I had the fortune of a chat quite recently with a gal at the AstraZeneca head office in the UK who shared quite a bit about the testing that began many years ago over there and then subsequently extended country by country worldwide. I was already aware, through my medical oncologist, of patients in Canada who have been on the drug as long as 8 years but was surprised myself to hear there are patients in other countries where trials began years earlier than here who have been on the drug upwards of 15 years.
As for the two year rule you mention, I don't believe there is any limitation in time when taking the drug. I believe what you're referring to is a funding model. While Lynparza has been approved by Health Canada, each province now has to decide how the drug will be funded...in whole or in part or not at all by each province. Until that is decided the manufacturer has agreed to continue their current funding model, either 100% or providing the 20% co-pay where private insurance covers the drug, until such time as each province makes that decision or two years whichever is earlier. Marilyn OCC provided this information in an earlier comment as follows. She doesn't mention the 2 year limitation in that note but I am almost positive that was referenced in the respective press release at the time."Here is the latest information about funding for Lynparza. Each of the provinces are now deciding whether or not to cover the cost of Lynparza. Some may say yes, others may say no.
Until these decisions are made, the process for patients wanting to access Lynparza remains:
- A doctor prescribes the drug (indication for BRCAm ovarian)
- Patient is enrolled in AstraZeneca’s Patient Support Program for information on financial coverage, including coordination of coverage at 1-877-280-6208
- AstraZeneca will continue to provide the drug free of charge until that person’s province has it listed on the formulary. In the case that the patient has private insurance, then her private insurance may cover it with AZ kicking in the 20% co-pay.
Please discuss this with your doctor and make sure you are enrolled in the AstraZeneca's Patient Support Program"
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@Fearless
Is this new as of 2020? I was prescribed Lynparza in 2019 by both my oncologists and was connected with AstraZenica, who told me about the 20% co-pay and asked me to check if mine and/or my husband's insurance would cover any of the cost of $8,000.00/month. My insurance wouldn't cover any of it, and my husband's would cover only up to $2000/year. I was then denied the drug by AstraZenica and told it was because I was 'first line'. But clearly, if I could have afforded it, I could have had it. Simply nasty!0 -
I was diagnosed with Stage 1 triple negative breast cancer in January 2019 and Stage 1c ovarian cancer In June 2019. I am BRCA1 positive. When I started chemo in July, Lynparza was not available to me as a post chemo option as I was Stage 1 and had not had a recurrence. However my oncologist is a bit of a bull dog when it comes to new treatments and staying abreast of treatment options. In October he came bouncing into the chemo suite very excited and said that Lynparza had just been approved for use after front line chemo regardless of stage as long as you or your tumour were BRCA positive. I started Lynparza in December with full
coverage by AstraZeneca. The plan is for me
to be on it for two years as doctor felt it would be curative at that point and it will have done its job. I am very grateful as I would not have been able to pay for this drug out of pocket.
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@maggiemae : @jnrichmond is right. The "rules" keep evolving. Much is dependent upon where you live and for what purpose and criteria the drug has been approved. For example, when it started out it was for platinum sensitive, BRCA positive, recurrence of advanced OC. Then, that changed to all stages of OC. Front line may well have now been included. It's always worth it to have your oncologists check in from time to time. But there is also a window of opportunity for when the drug can be administered post completion of chemo. You may be past that window now.
My situation is very different. The clinical trial I am on is to understand the impact of the drug on some one who is in recurrence, platinum sensitive, non BRCA but does have an HRD mutation in the cells of the strata of the original primary tumour. For as long as the drug has positive impact on me, I will continue to get it. If they stop funding and I can't afford to continue they'd lose all their data value since they'd have no way of knowing how long the effects lasted for me. LOL, I am hoping a normal lifetime! I'm the last admitted to that study though.0 -
Lucky you!! I think I read that you've had a recurrence too, is that right? When did the study you're in study begin? I've not heard of an HRD mutation...what does that stand for? My tumor was BRCA positive but I don't recall now if that was BRCA 1 or 2. I'll have to look back through my paperwork or ask my oncologist when next I see her (my check-ups have just been moved to q 4 mos from q 3 mos). I'm enjoying this site and learning a lot! Thanks for sharing your knowledge :-). M1
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Yes, there are so many factors that come into play regarding eligibility / coverage for the drug / trials / genetic status, etc.
I really dislike the disparities between all the provinces and if you happen to have employer or private insurance coverage that can be complicated or limited, too.
Again, your best options are to have all these discussions with your care team to find out what options are available or suitable for you... wishing us all the best of luck with these new drugs coming in.
HRD mutation = homologous recombination deficiency
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Hi @flowergirl, and thank you so much or responding....I hear you! While Saskatoon was without an Obs Gyny Team last year and using locums, I saw 4 different Obs Gyny Oncs from different provinces, who all prescribed Lynparza, but still I couldn't get it. The one from Ottawa flat out told me that if I lived in ON, I would have been covered for it :-(. Oh, well, I'm surviving just the same. Hopefully if/when I have a recurrence, it will be covered for me. So many things in this country would be better managed on a national, versus provincial, platform and cancer care is one of them, as is elder care! I hope you are having a great Canada Day! Hugs, M0
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Agreed @maggiemae, so many challenges and yes, we always have hope... science and treatments and coverages are changing all the time. I believe the positive from this current virus issue will be the overhaul of many systems, for the better or at least bring them to the spotlight!0
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Hi @maggiemae and @apricotsinmypocket
I just wanted to say that even though this is a bit late in coming CONGRATULATIONS to you both for your anniversaries. I sure hope that you both enjoyed your celebrations with family.
It is amazing how time goes by so quickly, especially under these current situations.
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To everyone else, I am a bit behind the 'eight ball' these days, but I have just been reading some of the comments and it is good to see that there are so many on the Lynparza drug.
I am happy to say that I have just started month three of being on the drug and so far according to my oncologist the results are favorable. Although the growth has not shunk it has not grown either and I am happy to say that aside from a feeling of nausea from time to time, I have not had any real side effects. My oncologist mentioned last visit (last week) that the drug has been proving to have positive results and I hope that it continues for all that are taking it.
On another note, I am happy to say that as I am not currently working the thought of paying for the drug and the stresses that come with it have also been taken care off. My husbands healthcare provider has just confirmed that it will be covered for 80% and that the 20% co-pay would be covered by the drug company. This has only come into effect this week. Previous to that I was fortunate to have it fully by AstraZeneca. But I understand that AstraZeneca will cover the full cost again should my husband have a change of employment or something else.
My biggest concern, although I have been assured that AstraZeneca will absorb the costs shoudl this happen it what if they decide not to, but the fantastic contact that I had just told me to call her and she will follow it up.
It gives a sense of relief to know that there are people 'out there' who just want to help not matter what.
So ladies, that is my rant for the day
and I appreciate you all "listening'.
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