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!
Lynparza/Olaparib
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Thank you. I’m not sure what the longer term plan is. Just keeping my fingers crossed.0
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Hello all, just checking in on the Lymparza experience. I have been taking it for approx. 6 weeks, the side effects have been mainly fatigue and some (manageable) nausea. On my first Lynparza monitoring visit, the CA125 had dropped from 542 to 377, but yesterday’s (2nd) visit showed a worrisome increase to 649. My gyne-oncologist has ordered a CT scan and will keep me on the drug until there is objective evidence to discontinue it. As a BRCA ll positive patient, I have put hope in this drug - should be my best bet. Have to say that it really helps to have a kind and compassionate oncologist who takes me through the science and the options in these instances.0
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I am also BRCA positive and started full dose olaparib the beginning of June as part of a drug study. The first CTscan showed positive results as the tumour had shrunk by almost half. The second scan done eight weeks later showed no change and the last scan done two weeks ago has shown that the tumour has grown and I am out of the study. We had great hopes for this drug but all cancers are different. I have been on the US Ovarian Cancer site Teaminspire and radiation is still used for some ovarian cancers. For me time is essential as the tumour is growing and compromising my colon .I really can’t wait to see if chemo will work and is so how fast. The other option might be surgery. I have a PET scan scheduled for Saturday and see the oncologist on the 18th. So big decisions to be made.
Be positive for your outcome, we all react differently.0 -
Wishing you the best possible outcome @jsullivan33 for sure.
Thanks for your update @Teddybear - for sure it is good we are being looked after and wishing the same for you as well.0 -
Sorry you are progressing on lynparza. Sadly I think the same is happening to me. I've been on for just over a year, but abdomen is getting fuller, more sore, esp after a meal. I get a scan soon, which will help, as ca125 is still low at 8.0
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Nice to hear from you Courtenay, albeit in uncertain times like these. Always wait until the objective evidence is in, dear girl - as you may be thinking too negatively. Having a clear skies CA125 like yours is a good sign.0
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Your kind words are appreciated, @Flowergirl, @Courtenay and @Teddybear. It's great that we can come to the Dialogue for support. cheers0
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For sure - we will take all the support we can get and give!0
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Thanks all for the letters of hope and inspiration. No I can't complain. I've been on this med for a year, and have appreciated every minute. I am thinking maybe a partial/slow progression, so doctor may say I should still stay on it. But I am thinking maybe try something else. I'm hoping to take the survivin vaccine c ketruda trial which is offered at princess margaret, and I think calgary. then possibly returning to lynparza afterwards or during this treatment. Just wondering if it would still work...I've heard of people being off lyparza for a few years, then going back onto in or something similar like niraparib or rucaparb.0
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Good to hear you are doing ok @Courtenay
Do you happen to have a link to the trial info for the vaccine c ketruda ?0 -
Hi Friends and Flower girl, thanks for being such a helpful resource. I saw my dr/scan yesterday, ca125 is still 7 and disease is stable, nothing new! I am so happy because I thought I was progressing because of increasing tummy bloating. I do feel more fatigue lately, maybe the time of year or it's been a year on drug. You're right JSullivan, don't jump to conclusions too quickly. The survivin trial may have openings in Toronto and Calgary. Or they may know of other pertinent trials! Go to clinicaltrials.gov and type in the study #'s
02785250 survivin c epacadostat
03029403 survivin c pembrolizumab
Has anyone considered letrozole as maintenance? You must be Estrogen + but most of us are. In BC they are still working on getting TILS immuotherapy for OC up and running. Hoping it will be soon, as they've stalled for over two years now.....They just received a grant from a generous donor for 250k as well.
Stay hopeful,
C
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Hello @Courtenay - you are welcome - those are good results and here is hoping the fatigue lessens overtime.
Thank you for the info on the t rial - will check it out.
Yes, seems treatment options vary by province and by condition/stage/type/status or disease - all unique just like us!
Reminder to use the @username - like @jsullivan33 @Courtenay within the post to send an alert to participants within the topic (no worries if you forget as we can pop back into the post when logging into the chat site the next time)
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@Courtenay I can relate to your concern of recurrence due to increased symptoms. At least your symptoms had some relevance.
Can anyone else relate to having a hangnail point to recurrence instead of maybe, say, a hangnail? In the words of a therapist friend” is it possible? Yes. Is it probable? No.”
this disease can make your head spin.
As for Lynparza, I am back on the med after a 2-year hiatus. (Was on clinical trial previously). The fatigue comes and goes. I think you may be right @Courtenay and the time of year and stress of the season may be triggering more lynparza fatigue. God bless.0 -
Hi Unpicknot
I didn't know one could retake lynparza after a 2 year break, that is good news. There are also rucaparib and niraparib both having slightly different uses but are similar to lynparza. Yes, the researchers are coming out with many new meds/combos, so keep spirits up! There is always hope,0 -
@Courtenay. I participated in a clinical trial for Olaparib (Lynparza) for 2 years with NED. As part of the trial contract, at the end of 2 years I came off the meds I had been taking. It was a double blind study and I could have been on the placebo. One month of the meds and my CA125 started to creep. I had experienced moderate fluctuations before so it wasn’t until we had a definite trend going on that we were suspicious of recurrence. It took 14 months for the official recurrence diagnosis. As part of my decision process for further treatment I was unblinded from the study and found I had indeed been on the med Olaparib.
It is unusual to be back on Lynparza. My case is somewhat unique in that regard. I advocated that the med had not failed- I had merely come to the end of the trial. In fact, I argued, the medication had held my disease stable at the microscopic level. Stable and microscopic. I can live with that.
So a we consulted with Astra Zeneca and a treatment plan was put in place.
And so now, 8 months later after a second full round of chemo, I am again on Lynparza and so far we are good. CT Scan in January. 🤞🏻0 -
Hi Upicknot, It seems if you were getting good results on the trial they (astra zeneca) would have offered you the drug after that. did you get tumor profile? the drug of course is free if brca +. I hope it continues to help and that you have a good scan result in jan.0
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Hi everyone and hope you are enjoying your holidays!!
I have a question ... is there anyone on Olaparib that does not have the germline or somatic mutation. I am of the wild type and have had absolutely no success getting this drug. I have Green Shield insurance which will not cover the drug unless you have the BRCA mutation. Also no luck with AstraZeneca.
I'm wondering if I am missing something?? OR is there anyone who has the wild type diagnosis who is on a PARP inhibitor??
Thanks so much for taking the time to read this and respond!1 -
Hello @Janis - are you eligible for any of the clinical trials and can your DR team assist in anyway?0
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Here is the link to one of the trials
https://www.clinicaltrials.gov/ct2/show/study/NCT02983799?term=D0816L00003&recrs=ab&cond=Ovarian+Cancer&cntry=CA&rank=1&show_locs=Y
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Well hi everyone. I didn’t remember to update you all. Oops. My scan in January showed NED and my Ca125 has fallen below 20. None of us believe the NED, as we have had experience with me in the past... however, we believe that it is microscopic and stable, hiding out on the surface of my liver.
Im on Lynparza and get my 6 month follow up on Wednesday. I hope it doesn’t take me 3 months to update you with that news!1 -
Hi Unpick
Thanks for posting and relating the wonderful news, I am so happy for you! It is also wonderful that you were forced off the trial, waited 14 mo to receive the med again, and yet it worked still....! You may not have microscopic disease. Let
s hope the lynparza has killed any stem cells, etc.
I have been stable for 15 mo, ca125 is 9 and disease is stable from scan of a wk ago. It would be nice to see it disappear, but stable is good. I can't remember if you're brca 1/2 somatic/germline? I am brca2 somatic. All the best to everyone. Stay hopeful!0 -
Another update. Had my 6 month post treatment check in and it all looks great! Blood work all normal and CA 125 is stable at 15.
This is an emotional turning point for me and I am glad.
We tweaked some of the side effect treatment and I literally feel like a brand new woman! The nausea and diarrhea are gone, so is my back ache and listless fatigue . Unbelievable the impact that was having on my life. You just don’t know until it is gone.1 -
Hi Unpick
That is wonderful news! Did they lower your dose of lynparza? You have double good news. Disease is at bay and you're feeling better.
I seem to have a lot of bloating. Never sure what is going on. Now the doctor said no more ct scans. We will rely on ca 125 numbers to see how I'm doing. Disease was linked to ca 124 in the past, just hope it is still so. I will get a scan anyway in a few months.0 -
Hi @Courtenay,
I, just as you, am to receive no more regular Ct scans as my CA 125 marker is sensitive and I am a symptomatic. They will still keep a close eye on me for which I am grateful.
They have not lowered the dose of Lynparza. I do not believe that is a protocol yet.
I had noticed that when I took Imodium when the diarrhea was severe, that the nausea and backache went away as well.
So, they put me on Questran in the morning to bind the bowel (which also lowers my cholesterol- not that it was out of range but on the high end of normal) and Zantac at bedtime to reduce acid production at night.
It’s like magic! Seriously. I even want to eat salad again!
Yhe drag on me from the constant I’ll feel is gone and my energy rebounded. The best result is the end of the listless quality I had come to accept as normal.
I am interested again.
I am deeply appreciative of my doctors who keep listening to me and are actively interested in not just finding solutions but in my whole wellbeing.2 -
Hi Unpick
Yes, finding a caring doctor really helps. I have problem c constipation, on the opposite end (no pun intended) of the spectrum. This may be the cause of bloatiness. so far this has been the case, but you always wonder if it's something more serious occuring.
Well, I'm so happy you've found balance and peace of mind and body! Enjoy the moment, each day. Getting sick has made me appreciate this one precious life we are given and to be present in each and every moment. I still have residual disease, spots on liver, spleen, tummy, all under 2 cm. Lynparza has helped shrink some initially, but things are stable which is supposed to be good. But I would like to take something else in combo to rid myself of this disease once and for all but there's nothing out there. I am already wondering what I may have to take next should this stop working. No rest for the weary I guess. Well have a momentous day to all.0 -
Hello @Courtenay and @UnPickNot - glad you are both doing as well as can be and that the drug is cooperating.
Sending you all a hug on this WOCD.0 -
Yes, an important day.....This disease, cause, unknown. It's not like we smoke, drink, are overweight, etc. which causes other types of cancer. So getting this is through no fault of our own! That is why more funding is needed to help these women who have tried to stay healthy most of their lives.0
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Hi everyone, I'm new... just joined today. I hope this finds everyone doing okay. I was diagnosed in July 2018 with metastatic ovarian cancer (stage 3b high grade serous carcinoma that had spread throughout the peritoneum). My tumor tissue recently tested BRCA positive after a 2nd surgery that I'd requested as the first one did not get all the tumors (HIPEC performed in Calgary, AB). My oncologists recently prescribed Lynparza/Olaparib. However, because I'm considered to have a 'first-line' cancer, this drug is not covered in my province (Saskatchewan) and it costs $8,000.00 per month. I've spoken with the manufacturer of the drug, AstraZenica, and have learned that my insurance company through work, Great West Life, doesn't cover this drug either. My husband's insurance company through his work DOES cover it, but his policy is capped at $2,000.00 per year. We recently had our first grandchild and I'd really like to be around to see her grow up! Has anyone had success with accessing funding for Lynparza when considered a first-line cancer patient? (first-line just means that I've not yet been in remission and had the cancer then return - that would make me a second-line cancer patient and the drug at that time would be covered). It seems cruel to make one have to wait till the cancer comes back and ravages more of one's body before covering a drug that can kill it.0
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@maggiemae
What a journey you have had - and how tenacious you are! Go girl!
I have a rather unique Lynparza journey in that I actually was part of the SOLO 1 study for the drug as first-line post treatment use. I came off the drug trial and experienced recurrence. The end result being treatment and after significant advocating, I am now back on the drug. Initially I was denied as I had technically already been on the drug - but that is a long, technical and convoluted story detailed in this thread earlier.
It is an awful place that you are in right now - seeing this potential on the horizon without being able to access it. I have been there. I participated in the clinical trial PRIMARILY so that women would not be facing what you are currently dealing with. I pray that it will be safely brought to market soon and that you will still qualify for it.
Wouldn't it be wonderful if you didn't need it?????? If you want to continue the conversation, you can private message me.
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Darn Chemo brain!
