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Hi all,

I know there are a few folks who are currently taking Lynparza and some who completed the two year course of treatment. I've tagged a few folks who I think are in the 'completed' camp. I'd love to hear how you are doing. @JoanEG @lbarr72 @brendalee 

This month marks my last month. I'd achieved the two years, on full dose. There is no opportunity or support for extension. My oncologist is interested to see if I'll start to feel differently (physically). To be honest, it has not caused me to feel bad for well over a year so I'm not expecting a radical change at all but it will be interesting if I do notice something. I'll admit I'm nervous being off the drug however I'll take it as a win!!! I know not everyone is able to complete the two years nor at the full dosage. I do not take that point lightly.

At this point, I'll be monitored by my gyne oncologist at PMH with labs and an appointment every six months. No routine CT's. If I have concerns prior to that, I can reach out. I know the support will be there. 

In each of our journey's there are hills to climb however there are also positive milestones. This is one for me and I'll celebrate it as such. 🙌 Thanks as always to each of you who have helped me along the way. Whether directly or indirectly, this forum hosts a group of women who share and show more strength than they sometimes know. 💪💙

#Healthandwellness #Treatmentandsideeffects #

You are correct Alwayslearning, this is definitely a significant milestone for you. Not many women can go the distance at full dose and you did so with a minimum of difficulty. Now another chapter begins in your wellness journey. I am one year behind you, and will likely feel the trepidation as I get closer to my cut-off. I remain curious (like you) about the women in other countries who report remaining on this drug for several years feeling very well. I mentioned that observation to my GP-O who reviews my bloodwork every month, and she agreed that funding in our country could be one of the factors involved in the 2 year cut-off. She said that research is advancing rapidly in the field and medication rulings can change if there is enough evidence to support continuing. It would be interesting to find studies done in other countries that support longer-term use of Lynparza. They must exist. 

I hope that you continue to feel well and possibly even better post-Lynparza. I read that some women reported having much more energy since stopping. But as we have said many times, we are all unique in our responses. 

Enjoy your summer!  

@LeslieA thank you for your words of support!!!

interesting what your GP-O said. My gyne oncologist also mentioned 'evolution' of research and said we never know what time will tell in terms of evolution of thinking. For now, she said the research clearly spoke to two years maximum upon treating the initial disease. She still said the risk of blood cancers increases for continued use. Sadly, as we know, time isn't always on our side. 

I follow a Lynparza group on Facebook (you might too, I can't recall). There are a group of Lynparza "Super Responders" who have had one recurrence which involved chemo. Post chemo they remained platinum sensitive e.g., the chemo worked once again AND they were then given the opportunity to take Lynparza again, indefinitely (or unless they recurred, had high toxicity etc.). I've attached the recent study of the group. This group is global however BC Cancer Canada was one of the participating group which I find interesting. The risk of blood cancer in this group specifically Myelodysplastic Syndrome (MDS) and Acute Myeloid Leukemia (AML) were exceptionally low.

While like all of us, I hope I never have a recurrence, I do have this as "hip pocket" information. 

#Resources #Treatmentandsideeffects

Attachment(s)

ESMO poster Haggstrom v6 Oct 2025.pdf   2.37 MB 1 version

ESMO full paper jamaoncology_haggstrom_2026_oi_260027.pdf   336 KB 1 version

@Alwayslearning, I appreciate you providing these studies. It is another ray of hope for us. At the right time, I might have a conversation with my oncologist about this study. 

I was also looking at research about the value of resistance/strength training exercises for ovarian cancer sisters to offset or delay recurrence. Daily walking was also included on the list as being highly beneficial for maintaining muscle mass, improving metabolism, and improvements on a cellular level. Additionally, regular movement reduces anxiety and depression. I felt vindicated because my Onc thought that there wasn't much research available in this area. There is more and more information coming out about this area.  

@LeslieA I agree it's another item for our awareness. If you do discuss with your oncologist I'd love to know what he/she says.

My daughter-in-law to be is a researcher in OVC (PhD student). She was an the OCC Annual conference in Halifax a few years ago and one of the Teal Sisters who was speaker talked a lot about exercise and the benefits during and post treatment. She was a very firm advocate for it and said it's definitely one thing within our control. She wasn't presenting research rather, was just reinforcing from her own experience and that of other Teal Sisters she was connected to, that the value is there. I'd like to believe that the more we can do to keep other parts of our body (and mind) healthy, the more beneficial this will be for overall health. I try very hard to walk 5-6 times a week for at least 30 minutes (I have a TM so can add incline and have no excuses for inclement weather). I'm also trying to stay consistent with weights 4x a week too. I'll do whatever it takes to try and keep this body healthy!!!

If you come across any research in this area, feel free to share! 

#Healthandwellness

Hello @ Alwayslearning,  changing paths has been a stressful part of this journey, putting your faith in how it works or doesn't and what side effects come with it. I came to the end of my 2 years on olaparib in mid April. I had side effects that required lowering the dose when my hemoglobin dropped, and I took a break while my kidney effects were analyzed by a specialist. It was decided that the cancer took priority over the kidney issues, so I completed the 2 years.

A CT done prior to completion revealed a recurrence of 4 small nodes in my upper abdomen, so while the disease was slowed, it wasn't stopped. I felt pretty good and similar before and after stopping. I traveled 2 weeks to the west coast in May, and did fine. However,  a trip to the east coast that began as a long drive on July 19th, had to be cut short. We returned home ( a tortuous drive) on August 4th (17 days of our 27 day planned). I was very sick (abdomen pain, little appetite, fighting constipation, painful headache, sweating and shivers and barely able to walk )

3rd day home I saw my GP, and was reminded again what a treasure he is. He was so thorough  sending me for blood tests and urinalysis , setting up a CT and thinking about the whole body. It made me realize that gyny oncologist  is very focused  on only the parts he knows. The suspician is that Covid  is the culprit due to theMy GP is very personable and caring. Suspicion is Covid, due to how fast and hard it hit me. But concerned about how the cancer is progressing too. He is helping pretest before the Onc visit Sept 24th.

Rest is helping, along with no longer pushing myself to do a ton of visiting. It's sad that cancer makes it hard to do normal. I did get to see all my east coast and Montreal based grandkids. I collected them like charms !

I love my home and garden, and I am content to be home resting. Each day gets better. Im not done yet....but I sure wondered ! 

You have done so well. You got lots more life to live ! Go Warrior !

hi @lbarr72 ... I am so sorry to hear about your interrupted trip however am glad you got to see the grandkids!!. I can only imagine how awful the drive must have been. I have had Covid and a nasty flu each during the last two years and they knocked me on my feet both times. Prior to my diagnosis I had Covid and pretty much sailed through it. So I think already have a system that's fighting can definitely impact us more. 

I'm so glad you have a great and thorough GP. I do too. I know we are both very fortunate in that regard 😊. Hopefully the CT will help answer any questions and having the bloodwork close to the Onc visit will be so helpful as well.

I'm glad you are resting up and enjoying your home and garden. I will wish nothing but continued wellness for you as each day passes. You are DEFINITELY not done yet!!! I'm honoured to be one of your fellow Warriors 💙

#Supportandencouragement

Hi@Alwayslearning like you I did the two years, at full dose, without any adverse side effects.  I took my final dose on June 28th and to be honest I have not felt any different.  I was expecting a miraculous boost in my energy level but have come to realize that my age and my COPD make that highly unlikely!  I haven't spoke to anyone in my oncology team since April but have continued to have monthly labs which I did notice that on my recent one all my levels were back in the normal range.  I am a little ticked at the fact I was supposed to have an appointment with y oncologist in June and that didn't happen.  I also was expecting a final CT scan (my last one was July 2025) and I would like to know where I stand in regards to the mass that was causing a partial bowel blockage.  I have been on a low fibre diet since March 2024 following my surgery when they were unable to remove that particular mass. My last CT, a year ago, showed it had shrunk considerably so it would be really nice to know if I could go back to eating whole foods again.  I'm pretty tired of processed stuff.  I am planning on booking an appointment with my GP and I will get her to order the CT scan.

Thank you Leslie.  Sorry I have been MIA lately.  I recently made the decision to sell my house.  I have decided it's time.  Every year it gets harder and harder to stay on top of everything.  The well, the yard, the house, the out buildings, ugh.  My granddaughter and her husband have decided to sell their house and buy one with a suite and asked if I would be interested in being their tenant.  That was my deciding factor.  Their kids are 12 and 6 and we have always spent a lot of time together so it won't be a huge novelty for them to have me living on the same premises.  They won't want to hang out with me all the time just because I'm there, lol.  That will suit me fine as I definitely need "my space".  I have given myself till next spring to get ready to sell.  My family from Saskatchewan were just here for a couple of weeks and I made them take all the stuff they have had stored here back with them.  My son is taking possession of my Mustang and all the parts stored in the barn, my daughter will take my TBird and all its accessories.  Niw U need to buckle down and go room by room and decide what I want to keep, what to garage sale, what to donate and what to haul to the dump. 40 years and 4 generations of people's stuff!

@Leslie I am on a 2.5 acre parcel with a house, a huge shop (my hubby was a car guy) and a "barn".  We always called it the barn just because we painted it barn red when we built it but it really is just another huge 2 story building full of stuff.  Here are a couple of pictures of my cars.

@LeslieA we did many fabulous road trips in the Mustang.  It has a pedigree of having won over 200 awards.  We drove it from here on Vancouver Island to many prestigious events in Washington, Oregon, California, Utah, Nevada (including the Mustang 50th birthday celebrations in Las Vegas), as well as many events throughout B.C. and Alberta.  My husband restored the car from the ground in 1996 and kept it in immaculate condition.  We had so much fun.  The fun was in the journey not the destination and we made so many amazing friends.  The Thunderbird has always been my summer cruiser and although it is 24 years old it only has 13,000 km on it.  It will be heading to a different scene in Saskatchewan although it will remain just a summer cruiser.

Thanks!

@JoanEG ... wow that's a big decision however how lovely that your granddaughter and her hubby have invited you to be their 'tenant'. That's a double win as there will be someone 'keeping an eye on you' plus how nice to be so close to family. While I certainly don't have a property that sounds like the size of yours, I certainly understand having your families 'stuff' at your property. We still have quite a number of bins of my son's that one day, will venture off with him but certainly not 40 years across multiple generations. I'm glad you are going to give yourself lots of time to make it happen. I'm betting you are going to be travelling down memory lane as you methodically go through each room. ☺️

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Hi @JoanEG ... I too am not expecting some big change in my energy level. Glad to hear I am not the only one!

Your comment on the CTs reminded me again of how varied the approaches are with different oncologists and medical teams. You would think there would be some standard protocol that says, 'once you complete a treatment phase, do a CT for a baseline'. Out of curiosity did your oncologist cancel your June appointment and not reschedule it with you? Can you call him/her to get one scheduled? Maybe attack it from both sides...try to see both your GP and your oncologist? I would hope, knowing you have a history with the blockage and that you are on a modified diet, that they would want to assess at a regular basis. Sometimes I think that if we aren't persistent, there's a complacency that things must be okay. Regardless I'm glad you are taking the initiative to get in to see someone and get some answers. I hope you won't have to wait too long for an appointment nor the CT. Fingers crossed 🤞

#Treatmentandsideeffects #Healthandwellness

@Alwayslearning I never had one scheduled for June.  When I had my appointment in April I was told I would have an appointment in June but that never happened.  I will see my GP and get her to light a fire under my oncologist's butt. 😁

@JoanEG great plan!

Also your cars are amazing!!! The roadtrips sound amazing. My sister had a Mustang (I think 1972 so nothing special) however it was a beautiful blue with a black ragtop/retractable roof. Gosh we thought we were hot stuff when we drove around in that in our 20's. It sounds like your family will treat the cars with the respect they deserve however won't they have fun giving the cars yet another set of adventures!

#Anythingbutcancer #Healthandwellness

@Alwayslearning I'm happy they are staying in the family, especially the Mustang.  I wasn't looking forward to selling the Thunderbird so it was great that my daughter decided she wants it.  

So an interesting turn of events, as I told you previously, because I never received an appointment with my oncologist in June, I thought I was done with the Olaparib.  However, I wanted a CT scan to see where I stood in regard to the bowel blockage.  I phoned the Cancer Clinic last Friday to see about getting an appointment.  I got a call yesterday morning saying they had booked me an appointment with the NP for Wednesday morning at 8:30.  Today after my workshop I picked my great grandkids up and never even thought to check the answering machine when I got home.  So this afternoon at 2:15 I got a call from my oncologist who said I had obviously slipped through the tracks.  My Olaparib should have continued for 3 years not 2.  So now I had blood work, she was sending the prescription in to CDH pharmacy and I will be back on it for another year.  She is also ordering a CT scan to be completed in the next month.  She apologized profusely and said she was glad I had contacted the clinic.  So I checked my answering machine and sure enough they had left a message saying she would call me at 2:30 this afternoon.
I'm not sure how I feel about another year on the Olaparib but it's better than the alternative!

@JoanEG well I'm thrilled you've gotten their attention and there is momentum. Definitely not thrilled as I'm sure you were too, that you'd "fallen through the cracks".  Thank goodness you reached out to them!!! Also glad the CT has been requested. 
I'm definitely interested about Olaparib for three years vs two. Would love to know if that might be a new standard in BC. It's certainly still two years in Ontario following front line treatment. 
Regardless I'm glad you've got forward momentum. Thank you for the update. I hope things go well. Please keep us posted.#Treatmentandsideeffects 

@Alwayslearning I was blown away when my onc. said 3 years, she even said "wait a minute while I double check"!  From the beginning I was told 2 years, even my appointment in April the NP said I would be done in June s my 2 years would be up.  So I am guessing this is new.  I tolerated it well so I'm not concerned about another year.  Since it has been two months since my last dose I will be done a fresh start protocol which means blood work after 2 weeks and again at 1 month.  I will be restarting on Friday.

@JoanEG I hope the transition back onto Olaparib will be smooth.🤞 

Sorry for my continued curiosity however I'm assuming that the additional year (year 3) will continued to be covered by the provincial health plan? Assuming yes, that is awesome. I'm just making sure I have all this information for the future. Also can you remind me, did you start Olaparib following your front-line treatment? I'm sensing there may be a difference in how they are prescribing the continued use of Olaparib for front-line vs. recurrent OVC. But who knows?! I appreciate your sharing your experience.

#Treatmentandsideeffects

@Alwayslearning I started on Olaparib following front-line treatment (6 rounds of chemo, surgery then 2 more rounds of chemo).  I just picked up my medication and  it was covered by my provincial healthcare plan.  I am also hopeful the transition back on will be smooth!  I tolerated full dose, for the 2 years without any real adverse effects. Fingers crossed 🤞 

@JoanEG thanks for sharing. I hope the transition back on the Olaparib is going well. I'm also thrilled that your provincial healthcare plan is continuing to support the medication. I was thinking about the 2 vs 3 years and I'm wondering if perhaps you are being supported for three years as you had the mass that was causing the bowel blockage. It's a theory but regardless, I'm happy you are getting the continued support!!!!!

Keep us posted on your progress.

#Treatmentandsideeffects

@Alwayslearning I have an appointment with my onc. NP on September 17th. i will ask why it was changed to 3 years.  I have had the bowel blockage from the beginning and was always told 2 years. 🤷🏼‍♀️

I just restarted last Saturday so I am only 5 days in but so far feeling fine.  I didn't really notice any difference in how I felt in the 2 months I was off so hopefully it stays that way.

@JoanEG I do greatly appreciate you asking. If there has been a change somewhere along the line in terms of length of timing for Lynparza I'd love to know, even if it's province specific. It's still ammo for use for my own advocacy.

Glad that almost a week in you are feeling fine. I looked back at my notes and my nausea/fatigue were almost instantaneous so I'm glad your body is adjusting nicely. I hope it continues that way!

#Treatmentandsideeffects