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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Hello Lakelady3. I was accepted for the Olaparib study within two weeks of the consultation with my oncologist. My study doctor is Dr. Limor Helpman and she is with the Juravinski Cancer Centre. They had all the data they required previously, so the decision to accept me for the trial was done quickly. I do not know how many studies are going on right now. The one I am in has approximately 300 people in the USA and Canada.
i hope you get an positive answer soon.0 -
I do have to say that things are slowly starting to improve, and I am hopeful that in a months time, I will have more energy, and my stomach will have settled. I do think Olaparib is working because I feel that the fluid in my abdomen has reduced, and I have less pain from cancer in my abdomen!! Next week's scan will tell the story.0
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Has anyone tried a half dose of Lynparza? Was it still effective? I tried it at a full dose last year, and my side effects were terrible...worse than IV chemo. I’m wondering if it’s with trying starting at a half dose this time around.0
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Hello @TealSister and welcome. Sorry you had a to deal with those side effects. Are you on one of the studies/ trial now? From what I understand and have heard, the DR may adjust the dosage level depending on what other issues are happening in the body (example creatinine levels).0
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My doctor said that there is no trials that I’m eligible for right now. I finished chemo June 11th...the doc might have me try the Lynparza again, but starting with a half dose and then increasing. It was very debilitating last time I tried it (last July). I had Nausea, fatigue, headaches etc. Nausea meds didn’t help at all for it. So I am a bit leary to try it again, but maybe starting off at a low dose then increasing will help my body get used to it.0
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Hello @TealSister - sorry you had such issues with the medication. Hoping you are feeling well as you recover from the chemo.1
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Can you tell me what non gBR CAm status is? I am looking for Olaparib trials for women like myself who do not have BRCA 1 or 2 genes to see if I am eligible for any clinical trial but I don't understand this specific term. (I had genetic testing done,which determined I am in the "wild" category, when having surgery for Stage 3c ovarian cancer last year.) I read the press release in May 2018 about opening Lynparza/Olaparib to women who do not have the genetic mutation but are there any clinical trials now open to this new group? I have already had paclitaxel/carboplatin, avastin/caelyx and a rechallenge with carboplatin. I am not going to try a rechallenge with Paclitaxel as the likelihood of gaining any more time is poor and I don't want to lose all my hair again. I have a very good oncologist who is willing to support me looking for a trial. We live in a rural area and there is nothing available anyway in BC so I would have to travel somewhere else in Canada. Thanks.0
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Hello @guinsal - welcome back to the chat. Yes, it can get confusing the genetics and the trials. Your oncology team should be able to assist you as there are lots of specifics to be eligible for a trial. Here is a current one and the link is below:
https://www.clinicaltrials.gov/ct2/show/study/NCT02983799?term=D0816L00003&recrs=ab&cond=Ovarian+Cancer&cntry=CA&rank=1&show_locs=Y
They are recruiting in Vancouver.1 -
Hello @lakelady3 - hope you are doing well and I have sent you a private message.0
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Hi @jsullivan33
I have followed up about Lynparza and platinum resistant ovarian cancer. As I suspected, it is not available. Health Canada has approved this drug only for the "maintenance treatment of adult patients with platinum-sensitive
relapsed (PSR) BRCA-mutated (germline or somatic) high grade serous epithelial ovarian, fallopian tube or primary peritoneal cancer who are in response (complete response or partial response) to platinum-based chemotherapy.(Platinum-sensitive relapse is defined as disease progression occurring at least 6 months following completion of platinum chemotherapy.)"Unfortunately, this means that Lynparza is not an option if the cancer is platinum resistant. I am not sure exactly where you live but here is a link to the Princess Margaret website that lists some clinical trials that you may qualify for. It is very technical information so I would ask your doctor to review these and see if one of them is appropriate for you.
I would also ask your doctor what clinical trials are available at the centre where you are currently being treated.
I'm sorry I don't have better news for you!
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Thanks, @Marilyn, happily my situation reharding sensitivity has been redefined, and I will in fact be enrolled in a Tx plan for Olaparib folowing a renewed course of carbo platinum. This was the outcome of reaching out (as you have siuggested) to the director of clinical trials at my clinic to see if I might qualify for some other trial. After careful review, it was decided that I should benefit from a parp inhibitor, and the above plan was offerred to me. It is worthwhile to question a decision, as I did.1
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Thanks again @Marilyn - those details will assist some of the ladies asking about the drug and the trials.
That is good news @jsullivan33, so glad they have a plan figured out for you.0 -
Thanks @Flowergirl - my husband and I are pleased with this improved plan.0
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Today I took my last Olaparib capsules. I have been 6 months on the drug, with a bit of success having a few tumours shrink, and some staying the same. But unfortunately I have a lot of new growth and regrowth of some of the tumours that I hoped were gone. I don’t have a BRCA 1 or 2 mutation, and I know the drug works best for those ladies who do. I’m back to Line 3 of Chemo tomorrow. Monthly Carboplatin. Sure hope it still works. Sigh.0
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@Nanakaw , I wish you best results with the new course of carbp plat. I found it much easier to take (just started my 2nd line on Friday) than the combination chemo (i.e. Carbp Plat plus Taxol). Sorry to learn of the new growths, but keep focussed on the tool box of options your oncology team has for you. Cheers0
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Dear @Nanakaw, I was re-challenged with carboplatin in February and it worked very well for at least four months with my CA125 antigen count declining. After that it didn't work but it gave me four months of a great quality of life which is so important to me' The side effects were minimal as opposed to last summer when I had the combo carboplatin/paclitaxel. Everyone reacts uniquely to their chemotherapy regime. I had the chance to grow my flower seeds indoors in March and then plant them outside in May and I now have a spectacular display of flowers in the garden that I enjoy every day! I am still able to keep up with household chores, gardening, shopping and visiting friends, making new memories and looking forward to travelling a little this summer. I hope Carboplatin gives you the same quality of life as I had while I was on it. All the best.0
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@Nanakaw I am on third line treatment right now. I had to stop the carboplatin in February with reaction after about 13 treatments on and off over 2/ 1/2 years. I took Taxol on it's own for three rounds and now do Taxol with Cisplatin. I have had 3 of these. I still have a bit more if there is no reaction and it seems to be working again. So keep in mind Cisplatin as well. Good luck.0
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An update:UnPickNot said:Hello to the group!
i was diagnosed with Stage 3c high-grade serous Ovarian Cancer in January 2014. After surgery, I did 6 rounds of Paclitaxol by IV and 4 rounds of Cistplatnin by IP followed by 2 rounds of Carboplatnin by IV when my IP port failed. I am BRCA 1 positive.
Following treatment I was declared clear of visible cancer and qualified for the SOLO 1 clinical trial. For 2 years I followed the daily regimen of the trial, didn't eat a grapefruit or marmalade, and saw my oncology team at least every 3 months. Imodium was my constant companion and I took iron supplements to keep my iron looking good. At the end of 2 years I had to come off the drug as per the study. That was September 2016.
Throughout the study period my CA 125 remained stable between 8-12 and my many CT scans were clear. In November 2016, my CA125 was 16, and the slow and steady increase began. I have been unblinded from the study and we now know that I was on the medication. While Olaparib did not cure me, it held my disease at the microscopic level and kept it stable. I am now being treated for recurrence and after treatment hope to again be able to be treated with Olaparib.
I tell you all of this to say I have lived on this medication successfully for 2 years. All through this time I worked full-time, became a doting grandmother and led an active and engaged life. There were side affects that I found manageable through medication and lifestyle choices. There seemed to be a bit of a cycle to my side effects - the better I took care of myself, the less they intruded.
I experienced fatigue (diet, naps, lots of water); low grade nausea; diarrhea (diet changes, Imodium and water); mouth sores; increased chemo brain/forgetfulness; leg cramps (magnesium supplement); low iron (pumpkin seeds and supplements). At the end of the 2 years I was staring to feel like I knew what normal was again.
I found the routine and pattern that worked for me while taking this drug. For those of you who decide to try it, I sincerely hope that you are able to find the balance that works for you.
My journey continues as I started Olaparib/Lynparza today. I had my first dose this morning. I completed my 2nd full round of carbo/taxol in September with some minor delays at the end. The second time round was rather like the first but the toxic affect was greater. However I am done and after a 6 week recovery period, my CA 125 stabilized and I again qualify for the drug - only this time I KNOW that I am on the drug and there is no time limit on it.
My case is rare in that I was on the PARP inhibitor for 2 years before my recurrence and am now going back on the same drug after a recurrence. While I was successfully on the drug for 2 years in that I experienced no recurrence and my CA125 remained stable, we didn't know I was on the drug at the time. The limit of the trial was 2 years. My recurrence diagnosis was 17 months after I stopped the trial, although we suspected the recurrence much sooner. In fact the flags started waving not 2 months after I finished the trial medication, but you have to wait for a definitive diagnosis. Let's face it, who want to do chemo "just in case"?
It was only in April of this year as we explored treatment options for my recurrence that I was unblinded from they study and told that I had received the drug not placebo.
It should be noted that while I am yet going back on the same medication, my recurrence occurred after I stopped the medication, not during. I believe that was a factor in my successful application to return to the drug treatment.
However, every case is different and I hear new things every month about new treatment regimens and qualifiers. Ask your oncologist. Advocate for yourself. Get a second opinion. Keep asking, because things change in this expanding clinical field (finally!) A NO answer today may be a YES tomorrow. There is such new hope for us Survivor Sisters.
Keep your spirits up. Persevere. And know that you are never, ever, alone.
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UnPickNot, thank you for your very insightful report on Olaparib. I am currently into my sixth month of the drug. My first CT scan was very positive as my 5.7cm tumour had shrunk by almost one half, however the latest scan showed no change. But as long as it doesn’t grow then all is good. And I will stay on Olaprib after the study ends if it still shows no new growth or until a wonderful new drug is discovered.
Thank as well for your coping ideas for dealing with the side effects. Everyone will respond differently from the drug. My issues are with fatigue (nap every day) and sour stomach which causes food aversions (Gaviscon).
Please keep in touch as it helps.0 -
Hi Unpicknot,
Thanks for your heartening story! Did you say you were BRCA1 somatic, or germline? I'm BRCA2 somatic and have been on the drug for a year. like with teddy bear, things were shrinking, but now things are stable and ca125 is about 7. i was thinking of trying something else, and then possibly restarting the lynparza in the future if needed. let us know how you do with restarting this. i hope you get a good response!0 -
Thanks for the encouragement @Teddybear and @Courtenay. I will post another update when i have something to share. 😉
I am BRCA 1 germline, I am platinum sensitive.0 -
Hi Unpicknot
O that's good news that you're still sensitive. and brca germline patients supposedly have better results.0 -
A new study published on Olaparib as maintenance therapy for newly diagnosed OvCa. Wouldn’t it be great if this drug could be offerred as soon as the study suggests (after 1st line therapy, rather than waiting for two or more lines of standard chemo?
Take a look at this content on PracticeUpdate: http://prac.co/l/y7aky8uf
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@jsullivan33 I was part of that study. My oncologist was at the conference when it was presented last month and he has much hope for it moving forward. There is still the process of getting it through the approval hoops but how wonderful to have such a positive prospect on the horizon.
It it certainly worked for me.0 -
hi everyone - yes, thank you for sharing your experience and giving us some hope @UnPickNot0
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Hi @UnPickNot, @Flowergirl , and others following Olaparib. Just as follow up to the study, here’sa good interview discussing the integration of Parp inhibitors into first-line package. The goal posts are starting to change. “ESMO 2018: Maintenance Olaparib Following Platinum-Based Chemotherapy for Newly Diagnosed Ovarian Cancer “. Take a look at this content on PracticeUpdate: http://prac.co/l/yc99zjox. Have a great week ladies.
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To anyone on lynparza. Are you on full dose? Reduced dose? I’m curious as to what everyone is doing. My second go around of chemo was tough on my blood counts recovery so my onc started me on half dose of lynparza. I’ve been on it coming on 3 months. Very little side effects. They may increase dose in another couple of months. Curious to hear what dose people started with and increase/decreases etc.
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hello @dmas125 - yes it is a good sign that they can adjust the dose if needed depending on various circumstances - they monitor blood counts as well as kidney function levels.0
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Hi @dmas125, Although I haven’t heard of starting at a 1/2 dose w Lymparza, sounds like a good way to deal with the aftermath of a second course of chemo without delaying the parp inhibitor start-up. My experience was to have a 2nd chemo like yourself, but it was only four cycles and just carbopatinum. I began Lynparza one month after the chemo, and have been taking it for almost 4 weeks now. Adverse effects have included some nausea and fatigue. Glad you shared your experience, as it is an interesting approach.
Wishing you luck and comfort as you scale up to the full dose.0
