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Has anyone had much success with this drug?  I am thinking of taking it as I am BRCA positive

Hello Courtenay I have to say I do not know much about it.  I am reliant on my oncologist and my GP and gynaecologist to assist me with medications as there are many.  There is also Avastin.  

Hello Courtenay @Courtenay I post a comment but forgot to attach the ampersand connection to notify you.  That is what this is for.  

Hi @Courtenay.  I see that you have not had many comments about peoples' experience with Lynparza. Are you still looking for information about the drug?  Lynparza is one of a new class of drugs called PARP inhibitors.  PARP inhibitors interfere with the ability of DNA in the cancer cells to replicate itself.  This can lead to cancer cell death and has been found to be more effective in BRCA positive cancer.  The benefit of Lynparza is that it has been shown to increase the length of remission - the time between the end of one round of treatment and when the disease recurs.  This is called "Progression Free Survival" or "PFS".  I can give you more information about these results if you are interested. 

At the national level, Lynparza has been approved for use in the treatment of BRCA positive recurrent ovarian cancer and pubic funding of the drug has also been recommended specifically for those with platinum-sensitive, relapsed BRCA-mutated high grade serous epithelial ovarian, fallopian tube or primary peritoneal cancer who have completed at least two previous lines of platinum-based chemotherapy.  However, even though public funding has been recommended, each province now decides whether or not Lynparza will be funded by their specific health insurance program.  This is why funding may be available in some provinces but not others.

You don't mention whether or not your doctor has recommended that you take Lynparza or whether they have discussed with how it would be paid for.  To gain access to Lynparza, the drug needs to be prescribed by your doctor. The physician or you, as the patient, would then need to contact AstraZeneca’s Patient Assistance Program for information on financial coverage, including coordination of coverage at 1-877-280-6208.  Your doctor should have all this information and know how to go about it.

Do you have any other specific questions?  What are things you are considering as you make this decision?

Thanks Marilyn.   I found that very helpful for myself to ask my doctor about at the next visit.  

I've been on lynparza, for almost three weeks now.  The side effects are much easier to handle than other chemo drugs.  I just hope it works.

Hi @Courtenay.  Glad to hear that you are finding the side effects easier to handle!  I hope it works too!  I am @mentioning a few people as I believe them may also have some experience with olaparib @Vivig @birdee  @AndreaB

I have not been so lucky with lynparza   nausea is horrible

Andrea, i don't suppose ginger would help with nausea?  Maybe it will get better once your body grows used to the stuff.  How long have you been on, and do you think is effectual?  

Hello AndreaB I was thinking that there are prescription anti nausea out there that your doctor can give you.  I have had it with the chemo treatment I have had in the past.  It has been very helpful.  It is called ondansetron under the brand name Zofran.  Not sure how it would pair up with Lynparza but could be asked about.  

That drug is very constipating, but I don't know what else is out there.

I’ve just finished my second round of chemo, this time 9 treatments of Carbo/ Taxil. I’m not NED this time but the tumours have shrunk a whole lot and many are gone. My Oncologist has prescribed Olaparib as maintenance therapy to hold the cancer at bay. I don’t have a germ line BRCA mutation, but apparently it can work in about 24% of women without BRCA.  Not great odds, but I have my fingers crossed. 
I’m wondering about side effects as I’m told they can include relentless nausea, diarrhea, joint pain and fatigue. Anyone else out there on these drugs? Did the side effects diminish over time?

Hello @Courtenay @AndreaB and @Nanakaw - hope you are doing well. I have been reviewing some of the topics on the site and wondering if you can share your experiences again - as to where you are now with the Lynparza / Olaparib treatment. Thank you in advance for sharing. 

Hi flower!
Thanks for asking!  The drug lynparza is working for now anyway.  I am so happy and surprised!  I feel great on the drug with only just a few side effects.   I had 5 spots under 2  cm which have shrunk by a few mm.  How is everyone else doing?

Hi Flowergirl
I’ve been on Lynparza for a month. The first two weeks had no side effects but last two weeks I have the worst foul gas, some bloating and a bit of diahreah and nausea. Also I’m more tired than I was before. I’m seeing my Oncologist this week so may get some more insight. 

Hi Nana
I'm glad you mentioned bloating because I ve had that side effect all through chemo and the four mo I've been on lynparza.  The positive news is the drug is slowly reducing size of tumors!  Maybe that's what's going on for you.  

Does anyone know what causes the bloating.  Obviously it's the lynparza.   But can anything be done?  

Hi @Nanakaw and @Courtenay - it is good news it is working to shrink the tumors - sure hope those side effects get better to deal with!

Hi Janney
How sad you had to deal with all this.  It's not right.   You'd think the people in the health care industry running these operations would be more competent as we're talking about people's lives!
It sounds like a deliberate attempt to stall your application...what is the name of your insurance co?   For sure a company to avoid.

I'm glad Astra zen came thru!  And I wish you success! 

@Courtenay
Hi Courtenay -  thanks for taking the time to read my very long post.  Last week before funding was granted I was willing to stand naked in front of the insurance company to get the attention my case needed. Since then I have calmed down and don't want to out the company before I gather all the info and be sure of the part they played in the delay of funding.  Will keep you up to date.

At my last appt with my oncologist I was told to take Lynparza without food, either eat one hour before taking the drug or wait two hours after eating.  But was told by my pharmacist I could take it with or without food.  When I researched the topic all indications (even by the drug manufacturer) were the same as the pharmacist, with/without food.  The only exceptions were from all cancer related sites, which said the same as my oncologist.

Question:

Has any other Lynparza users been given the same conflicting directions as I was given by my pharmacist/oncologist. If you have, what did you decide for yourself?

Hi Janney 
That's a good question!   I was wondering that myself.   Could the prescription be different for those taking the pill vs capsules?   AZ should have the right info.  Let me know what you find out.   I'd be interested to know. 

Thank you @janney (sorry for your terrible run around for the coverage) and @Courtenay for sharing your experience.
I wonder also, if it makes a difference with tablets vs capsules. Everything seems to state with/without food so perhaps what ever works for the individual. Hope you get some answers.

If anyone not currently taking this drug - you can check out more about it here:
https://www.lynparza.com/ 
Be sure to scroll down on the site as you can review some of the studies that were previously done.
And as always, check in with your medical team if you have questions or concerns.

Hi @janney  I, too, am sorry you had such a runaround getting funding for Lynparza.  Sadly, it is sometimes up to the patient to become their own advocate for getting appropriate and timely information for treatment. I'm glad that is finally sorted out.  I will ask about the issue of the optimal time to take the drug either with or without food.  Watch for an answer here.  

Hi @janney @Flowergirl @Courtenay and @Nanakaw

Here is a response from the manufacturer regarding the optimal time to take Lynparza:

"As per the olaparib (LYNPARZA) Product Monograph, olaparib should be taken on an empty stomach (at least 1 hour after a meal) and patients should refrain from eating for up to 2 hours, due to absorption rate of olaparib in high fat meals. (This is different than what many consider eating on an empty stomach as that leads one to assume they can eat after dosing.)  As far as tablets versus capsules goes, we are only approved in capsule formulation in Canada at this time."

I hope this helps!

Hi @janney
My Oncologist and Pharmacist gave me the info in bold in the post above. That’s how I have been taking the drug. It has been 2 months now and the nasty side effects are finally gone! Yayyy!!!  I’m feeling much better and have more energy too. So Hang in there ladies!! It gets better!! I must wait another month for a CT scan to see if it’s working. Fingers crossed! 
Sorry to hear about your runaround with the drug approvals. I never imagined the administration involved for all of us that goes along with this disease!! So many forms, letters and details to be on top of. But glad you got the funding! 

Hi everyone!
I spoke to my oncologist last week and was told the tablet form of lynparza will soon be available in Canada.  It doesn't matter if you take the pills (4 in total) with or without food.  

It is wonderful to hear that the Lynparza is helping ladies out there.  I am now on my second recurrence and receiving Taxol only.  I was receiving Carboplatin until rd 14 but it had to be stopped at that point. I am BRCA gene mutation positive. I know I can receive Lynparza as the chemo is working again this time.  I always develop ascites.  I was wondering how long after the last standard chemo treatment before one receives the Lynparza?  I am sure it varies.  I have only been on Carbo and Taxol.  I have not tried anything else.  I am not sure whether or not that is a factor.  Thanks.

Hi Curley, I think you can start lynparza around 3 wks. after chemo, or whenever your doctor sees fit!  Hope it works for you!  It used to be 3 regimens of platinum drugs before you can take a parp inhibitor, but maybe that's changed, I hope so!

Thanks  @Courtenay.

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

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!

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. 

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.

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.

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?

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/

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.

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

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

@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 ;)

Thank you  

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

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

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.

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

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?

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.

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. 

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.

Hello @Teddybear welcome

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.

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.

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

@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. 

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.

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.

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.

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. 

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.

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.

Hi @JaneWest - wishing you well and hope you are feeling better each day. <3 :)

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. 

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).

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. 

Hello @TealSister - sorry you had such issues with the medication. Hoping you are feeling well as you recover from the chemo. 

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.

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. 

Hello @lakelady3 - hope you are doing well and I have sent you a private message.

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.

 http://www.uhn.ca/PrincessMargaret/search/Pages/clinical_trials_search_results.aspx?#Default=%7B%22k%22%3A%22platinum%20resistant%22%7D

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!

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. 

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. 

Thanks @Flowergirl - my husband and I are pleased with this improved plan. 

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. 

@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. Cheers

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.

@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.

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. 

An update: 
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. 

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.

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!

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. 

Hi Unpicknot
O that's good news that you're still sensitive.  and brca germline patients supposedly have better results.  

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

@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. 

hi everyone - yes, thank you for sharing your experience and giving us some hope @UnPickNot

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.

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. 
Thanks 

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.

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.

Thank you. I’m not sure what the longer term plan is. Just keeping my fingers crossed. 

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. 

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.

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.

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.    

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.

Your kind words are appreciated, @Flowergirl, @Courtenay and @Teddybear. It's great that we can come to the Dialogue for support. cheers 

For sure - we will take all the support we can get and give!

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.  

Good to hear you are doing ok @Courtenay
Do you happen to have a link to the trial info for the vaccine c ketruda ?

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

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) :)

@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. 

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,

@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. ????

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.  

@Courtenay - thanks for the good wishes. I hope I remember to update everybody :wink: Darn Chemo brain!

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!

Hello @Janis - are you eligible for any of the clinical trials and can your DR team assist in anyway?

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

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!

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!

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. 

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.  

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. 

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.

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. 

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.  

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.

@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.

A trial might be a good alternative....have you contCted princess Margaret in Toronto?  They might be able to giveyou ideas.  It's certainly a crazy unfair world

Tell your story to your local news TV.  Reach out...help is out there but you have to make your case be known.  I hope n pray you can get the med

Hi @maggiemae... I'm trying to determine from your above post that your treatment has ended and have you discussed the clinical trials or options with the DR team?

Hi Flowergirl, Yes my treatment has ended but we don't know yet if I am in remission or not. I've completed 2 surgeries and 2 rounds of platinum based chemo (6 cycles after my first surgery in July 2018 and 3 cycles after my second surgery this past January).  I had my last chemo treatment on April 18th.  My most recent CT Scan 3 weeks ago showed a small remaining area of nodularity but they weren't sure if that was cancer or just scar tissue from surgery.  My oncologist has prescribed Olaparib but I'm having trouble getting it covered.  I've not been made aware of any ongoing clinical trials.  Are there still some taking place for Olaparib?

Hi @Courtenay, thank you for those suggestions. I'll give them a try!

Hi again @maggiemae
Please check in with your DR team about this one, or any others that are open in your area. The DR team should be able to chat with you about the options and if you would be eligible:
https://www.clinicaltrials.gov/ct2/show/study/NCT02983799?show_locs=Y
There are 4 cohorts and depending on the genetic profile and if one is eligible, and if any of the cohorts are open or full.

and here is the info from a previous post from @Marilyn 

To gain access to Lynparza, the drug needs to be prescribed by your doctor. The physician or you, as the patient, would then need to contact AstraZeneca’s Patient Assistance Program for information on financial coverage, including coordination of coverage at 1-877-280-6208.  Your doctor should have all this information and know how to go about it.

I hope Maggie MAe can be accepted into that trial, looks like a good one.  Flower girl, do you know of any clinical trials for people who have been on lynparza and it is no longer working?

Hi @Courtenay
You can start a search here:
http://www.canadiancancertrials.ca/
Trials can be a tricky issue- again, a discussion with your DR team to see what is available in your region and what may or may not be right for your situation/condition/course of action/treatment
Wishing everyone the best and yes, be vocal with your Dr team about options, what is best for you.

Hi! I took Lynparza for about two years with no side effects until I relapsed. Still platinum sensitive though. 

I hope Maggie MAe can be accepted into that trial, looks like a good one.  Flower girl, do you know of any clinical trials for people who have been on lynparza and it is no longer working?

Hi jule
Sorry lynparza is no longer working for you.  What are you taking now?  If I recur I  don'tknow what to take next as I'm resistant to carbo.   

Hi all
Has anyone on lynparza  had radiation done on stubborn spots that won't go away?  I've been on lynparza for 19 mo and still have a few spots all less than 2 cm.  It is worrying because not sure how long lynparza can keep things at bay.  
Hope Maggie got access to lynparza?

Hi Janis. I am BRCA negative/Wild. I finished my first recurrence chemo in October 2018. I was lucky a clinical trial became available shortly after that for Lynparza/Olaparib for my type of cancer (3c high grade serous) in London, Ontario for those who are BRCA negative. It is a phase 3 study called the Opinion Study. Only 250 people worldwide are on this trial. Unfortunately it looks like I will going through my 2nd recurrence soon. My CA125 started jumping in June and I went from 6 in October 2018 to 27 now. I was 18 last month and 11 before that. My Oncologist does believe a recurrence is coming but the Lynparza/Olaparib is slowing it down, which is what we had hoped it would do. I get a CT scan every 8 weeks while on this trial. So far nothing has changed, but Oncologist says your CA125 needs to be pretty high before the cancer shows itself on the CT scan. I am hoping it takes a few more months before this recurs. Of course, I hope it doesn’t recur at all but this is the nature of this disease it seems.

This is FANTASTIC news. Thanks for highlighting it @Flowergirl

Hi all,
Thanks for getting back.  I am still on the lynparza, it's been 22 mo BRCA 2 somatic +.  There is slight progression on spots on spleen, liver, and lung (.1 mm which is very small)  So my Dr is keeping me on to yes, like you Maria, help slow things down.  I am just ever so grateful to have had the past almost 2 yrs with virtually no side effects!  I am now wondering what's next for a person who's had 3 regimens of platinum, still a bit sensitive, but has bad reaction (blood in urine).  I cringe at the thought of taking doxil, but may have to.  those meds seem so caustic now.  I am hoping against hope researchers will come up c another med after lynparza.  All the best to you all,

No coverage for brca neg girls yet