Lynparza/Olaparib

CurlyHair

Thanks  @Courtenay.

AndreaB

Hello ladies   well 4 months on lynparza   started with  16 a day   had to go down to 8   because of terrible nausea  now back to 12.  Have to say I still have nausea but it is now livable.   I am very anxious to have pill form available soon .
I just had a CT and no evidence of cancer so all is good.  CA 125 had gone to 3 so even better. 
Unlike some I really had no problems getting coverage for lynparza  Green Shield  picks up the total amount.  Feeling very fortunate for that.  
I am back at the gym  finally and starting to feel like me again.  Tomorrow I am taking part in a photo shoot for my cancer centre women' campaign excited about that  just have to find something slimming and make me 10 yrs younger   lol to wear.
Take care 
Andrea

Flowergirl

Hi @AndreaB - that is fantastic news about that low CA125 - so glad it is working for you. Thanks for sharing your story and experience - I went back through some of the previous posts and I see you have been through alot - glad you were also able to get that nausea under control! I hope that photo shoot was a fabulous experience for you - congrats!

Tesla01

Hi, I’ve just joined this group and been reading some reviews, I live in the Vancouver area of BC,  I’m on Lynparza and handling it good, I did have a few hiccups in the beginning, my hemoglobin was dropping low so my Oncologist reduced my dosage to 8 caps a day, not sure if he will put dosage up again or not. 

Flowergirl

hello @Tesla01 - welcome to the site and thank you for sharing.It is good to hear that they are able to adjust your dosage. You are welcome to post your story on your bio page or in the Let's get started topic.
We also try to connect live on Tuesdays at 7:00 PMCST if you are able to join us. There are lots of topics and much support here for you.

Courtenay

Hi Tesla, welcome to the group!   So your caps were reduced from 16 to 8?  That seems like a severe reduction in dosage.  I'm on the full dose, and I must say, it's okay.  Just fatigue, but everyone feels that way sometimes.

Flowergirl

Hello @Tesla01 @AndreaB and @Courtenay - hope you are all doing ok this month and thank you again for sharing your experiences with Lynparza

@AndreaB - how did that photo shoot go?

AndreaB

Photo lock out cancer campaign is in full swing.  Here is the finished product.   I am the one with white hair  www.lockoutcancer.com/about-us/

Courtenay

Hi All
Well I'm still on lynparza and it's been six mo.  I don't know how much longer it will continue working, but I feel good at least!  Still suffer from fatigue and fullness and I always think the disease has returned which puts a damper on things to say the least.   A scan next mo. with help see what's going on.  I'm still on full dose, so whatever works!  How is everyone else doing?  Hope that we can keep taking this for a long while.

Flowergirl

That is fantastic @AndreaB - glad you were able to do that!
Neat event!
HI @Courtenay - glad you are feeling ok!

More great news just out!
https://www.newswire.ca/news-releases/lynparza-olaparib-tablets-receive-approval-as-maintenance-therapy-treatment-for-ovarian-cancer-regardless-of-brca-status-682039621.html

JaneWest

for those of you already taking Olaparib/Lynparza, would you mind sharing if you are BRCA positive or negative? Women who are BRCA negative are also getting the drug, so I am wondering what benefits they are finding so far on the drug. @Nanakaw @janney @AndreaB @Flowergirl

JaneWest

@AndreaB I'm very happy for you re your CT and CA125 results, how encouraging! I also saw your photo, ,and you look radiant!!! love your hairstyle

AndreaB

Thank you  

AndreaB

I am a BRCA 1   here is the news article just released  
https://www.newswire.ca/news-releases/lynparza-olaparib-tablets-receive-approval-as-maintenance-therapy-treatment-for-ovarian-cancer-regardless-of-brca-status-682039621.html

janney

@JaneWest - I'm positive for the BRCA 1 mutation and not aware of others taken Lynparza who do not have the mutation.

Teddybear

Thank you everyone for the info on Lynparza. I have been approved for a a trial starting next month. Just wondering how often does the doctor monitor your blood work and check to confirm that the tumour is shrinking.

Teddybear

Also, I live in Ontario and retired. My income consists of CCP, OAS and RRIF . Does OHIP cover the cost of Lynparza.

Flowergirl

Hello @Teddybear - welcome back to the chat.
If you are on the trial, you will be provided the drugs related to the trial.
The trial has a protocol on how often they monitor and scan.
If this is the trial you are approved for, more info can be founde here:
https://www.clinicaltrials.gov/ct2/show/study/NCT02983799?term=D0816L00003&recrs=ab&cond=Ovarian+Cancer&cntry=CA&rank=1&show_locs=Y 

You may need to pay for the over the counter items or drugs prescribed by your DR to deal with side effects.
You can speak with your medical team and also some good resources here:
http://www.health.gov.on.ca/en/public/programs/drugs/
 
How are you feeling?

sharon

Hi I am new to the group . I am brac2 was treated for ovarian cancer stage 1 8 years ago . Unfortunately it returned in my lungs 4 months ago I was to do 6 rounds of chemo but only did 2 as I had a severe allergic reaction to the carboplatuim . So my doctor put me on lynparza I just started taking it 2 weeks ago . So far I have occasional nausea but nothing I need to take medication for . But I do find that I am extremely tired often have to take a nap in the afternoon. Thank goodness I am not working right now . I am told after 2 months things will get better . When I was first rediagonsed my ca125 was 271 after the first 2 treatments of chemo it dropped to 37 and today I was told it is 22 . Feeling good about that but will feel better after my next scan . Hoping the lynparza works and side effects go away so I can feel somewhat normal again  and get back to walk. Staying positive.

UnPickNot

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. 

Teddybear

Thanks Sharon and Unpicknot for your comments on Olaparib. I am starting a trial next week with two Olaparib 150mg tablets twice a day with or without food. My CA125 has not been used as an indicator of cancer as it was low when my cancer was diagnosed. Therefore, success will only be confirmed by a CTscan or the tumour completely compromising my colon. The tumour is not in my colon but in the vaginal vault. I am hoping that the side effects are minor as I have IBS diarrhea and already fight with that daily.

Flowergirl

Hello @Teddybear welcome

jsullivan33

Hello @janny, @Marilyn, and others with Parp inhibitor issues. 
Looking for some context here. After a bit of a meltdown a couple of weeks ago with my oncologist, who informed me that my cancer had recurred 2 months after I had completed my treatment (and hence the end of my aspirations to be in a parp inhibitor drug trial) , I decided to book a subsequent appt. with the cancer clinic to go over this juncture with calmer spirits. Today I went to the clinic appt., taking with me some concrete questions to better understand what comes next. I met with the oncologist on duty. I am to expect a 2nd line treatment regimen for “platinium refractory” OvCa, i.e. Caelyx (although the Gyne -onc I spoke with felt that I would do better w another round of carbo-platinum - TBD by my principal oncologist). Have to wait until late August in order to rest my bone marrow.  Anyways, he explained that although I had done exceptionally well w my first chemo/surgery/chemo, it is typical for BRCA cancers (like mine) to recur as quickly as my cancer did. Now here’s the rub: early recurrence (within 6 months) and hence “platinum resistant” means that I am not eligible for parp inhibitor maintencance therapy following 2nd line treatment, despite the fact that BRCA cancers are exceptionally responsive to parp inhibitors. It’s tempting to ask here what is the value of undertaking 2nd line treatment if recurrence will show up almost as soon as as treatment is finished, and I won’t  count on on maintenance therapy. The oncologist said that I would benefit significantly from the parp-inhibitor, immediately following my next treatment, and that I must figure out how to secure this. (not very helpful...)
 Does anyone know about flexibilities within the AstraZeneca’s Patient Assistance Program that Marilyn outlined in an earlier post in Lynparza topic, to accommodate my parameters? Any experience out there for platinum resistant/ BRCA? Really appreciate any input.

MarilynOCC

Hi @jsullivan33.  I am checking into Lynparza for treatment of platinum resistant BRCA positive disease but to my knowledge it is not available.  I am also checking into clinical trials as well but haven't seen anything that is available in Canada yet.  I will let you  know what I find out. 

If you have to wait until August, you have some time to gather information.  I would also ask the oncologist how they can help you navigate getting access to this drug if they are going to recommend it for you.  Sometimes cancer centres have "drug access navigators" (they may be called different things in different centres).  These are people who can help you figure out if and how you can access newer drugs.

jsullivan33

Thanks for your interest and efforts, @Marilyn.You are right- I need  the clinic to prescribe the drug as maintenance following my next chemo treatment course (hopefully they will), and by then, I will have made the inquiries about obtaining it. I note that I have read  about women receiving Olaparib / Lynparza in Canada, not just  through trials. So It would be great to learn  how Parp inhibitors like Lynparza  are being provided currently.  With the new Health Canada  approval (May 2018), does this mean that parp inhibitors are provided by the cancer centres, or does the patient simply receive a prescription and goes to a pharmacy to purchase? (in which case, the issue of getting $ support either through provincial drug program, the Astra Zaneca support program, or if the patient has a health insurance carrier willing to cover it). So many questions, and too little access to the oncologist to get the answers. Thanks for the idea to contact the “navigator”, whom I suspect is the pharmacist at the cancer clinic I attend in Ottawa. Thanks again,
Judith

JaneWest

@janney I am sure glad to hear your report that the nasty side effects have disappeared for you. I am on week 6 with Olaparib/Lynparza, and it has been quite rough. I have very little energy, lots of nausea. To complicate things, I had a bowel obstruction just a few weeks prior to starting. Now I'm trying to manage that ongoing issue with the addition of drugs to help deal with Olaparib! which are constipating. I take Ondansetron 3x days, every day; Maxeran as break through for nausea; Hydromorphone as break thru for pain. I'm so tired of this, there's very little enjoyment in life because I just feel unwell all the time. Week 6 now - this better change. I'm due for CT scan #2 next week. 

Courtenay

Hi Jane, do you know if the lynparza is working?  it seems worthwhile to take all these meds if it's fighting the disease.  I wouldn't take ondasetron, horribly constipating!  Which is the last thing you need with an obstruction...  I'm thinking maybe there's a different anti nausea pill you can take?  Hope things improve for you.

Flowergirl

Hello everyone - hope for those of you taking this drug or on the trial are doing ok.
When you can, perhaps everyone can share their update for those just starting the trial.

Teddybear

Hello everyone. Just starting my fourth week on Olaparib (study).No really bad side effects. No nausea, just tummy upset that can be calmed with ginger candles or ginger ale. I am fatigued more often and need to nap in the afternoon. I have bouts of feeling light headed and dizzy, but they pass. I have IBS diarrhea, so diarrhea is expected and with the tumour pushing on my colon I can’t take any medications to relieve this symptom. I have had some taste changes and food aversions so my appetite is up and down
i am so hoping this drug will work and quickly as the tumour was on a growth spurt gaining a centimetre each month. My next CT scan isn’t until July 31st. so I will be stressing until then.
Hope everyone else taking Olaparib is faring okay, the study doctor keeps saying it takes 2 months for the body adjusts to the drug.

lakelady3

Hi evryone. Just want to know how long you had to wait to begin the Clinical Trial for Olaparid, after you went through all the tests to be on it, CT scan, bloodwork, EKG, and a sample of your tissue to be sent away. I'm finding being in limbo is difficult. I just want to get on with it and be more proactive about my OVC.