NICE are undertaking a Cancer Drugs Fund guidance review for olaparib. The name of the NICE consultation is: Olaparib for maintenance treatment of BRCA-mutated ovarian, fallopian tube and peritoneal cancer after response to first-line platinum-based chemotherapy (Review of TA598) ID6191
This treatment is currently available through the Cancer Drugs Fund, but the aim of the review is to decide whether or not this treatment can be recommended for routine use after data collection is complete.
We are preparing a submission to NICE for this review and we would really like to hear from you if you are currently receiving olaparib as part of your treatment plan for ovarian, fallopian tube or peritoneal cancer or if you have received this in the past. We will not use your name or any identifying details.
If you would like to share your comments and views for this submission, please leave a comment below, or send a private message through the chat function of the forum or by emailing at support@ovacome.org.uk.
Thank you very much for your help as always.
Best wishes,
Anna
Ovacome Support
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I have been prescribed olaparib when I complete the next 3 sessions. I was relieved to be eligible for this centrally funded drug. I understand it is for a limited period on the NHS. I would like to see a see it being available as long as studies indicate a benefit .
I was diagnosed with Primary Peritoneal Cancer February 2020, at the age of 69. After 6 chemo sessions and full debulking surgery I was prescribed Olaparib 300mgs daily in the September,which after 1 month was then reduced to 200mgs due to side effects. I came off it September 2022. Throughout treatment my CA125 remained around 10. I am now a year into remission and receiving 3 monthly blood checks. Although my CA125 increased to 16 last time, I am still very optimistic and extremely grateful to have received Olaparib .
Diagnosed with ovarian cancer HGS stage 4 in November 2021 (just shy of my 45th bday), I have completed 6 chemo cycles, one surgery of the entire abdominal area, and currently on olaparib as I am BRCA1 positive. Completed 1 year on olaparib started with 600mg dose and currently at 450mg dose due to recent side effects. I will be taking it for another year. Ca125 is around 5-6.
I was diagnosed with Stage 3c Ovarian Cancer last year and had chemo and debunking surgery. I'm now taking Olaparib for the next 2 years and grateful for a maintenance drug being available however like others I'd like to know the benefit of longer term use.
I was prescribed Olaparib after a first reoccurrence 3 years ago in June 2020.I am BRCA 2 +ve .I have kept very well, luckily no side effects ,good blood results, regular scans and Ca 125 around 4/5.
Good morning 🌄 I'm on 400mg daily and 3 weekly infusion avastin maintenance for stage 4c ovarian hgsc, had 4 carbo plax then debulking then 2more with avastin added to the last treatment, i am hrd+ brca negative. Started at 600 then reduced to 500 and then 400 but stable now and coping well on 400mg just still get aches and fatigue but ca 125 at 7. Diagnosed April 22.
Hi, I was diagnosed in May 2019 with stage 3C cancer of the fallopian tube. I had full debulking op after 3 sessions of chemo ( Carboplatin and Paclitaxol ) followed by a further three sessions.
I finished chemo end of Nov2019 and started Olaparib beginning of Jan 2020. I had 600mg per day ( three breaks of two weeks approximately due to low HB).
I finished in Jan/ Feb 2022.
I don’t carry the BRCA gene but my tumour was BRCA2+
I’be been NED ever since and have a CA125 of 14. ( Clear over 3.5 years ).
I do think Olaparib has prevented recurrence and hope it continues to be offered to women with OC.
I found it generally very tolerable after the first few weeks and so worthwhile persevering.
I was diagnosed july19 stage3 high grade serous turbo-ovarian carcinoma had TAH andBso 4th July left sided infarenal lymph node mass remained as resection not technically feasible followed by three weekly carboplatin and paclitaxel
October 19 complete debulk of nodal mass followed by 3more carboplatin and paclitaxel ct scan in February 20 showed complete response
Commenced Olaprib in February 20 600mg reduced to 200mg the high dose was causing me pain in my body and sickness coped very well on lower dose
Iam BRCA 1 and very happy and grateful to be NED
Having to stop Olaparib was very scary I would still like to be taking it now it made me feel protected
I was diagnosed 4b Ovarian cancer, BRCA2 positive, and had five sessions of carbo-taxol in 2022 and in October a 10 hour keyhole operation to remove ovarian cancer from my stomach, omentum, full hysterectomy, appendectomy, plus more. I then had a sixth session of carbo-taxol.
I was put on 600 mg Olaparib in January 2022, which was stepped down to 400 mg because of anaemia. I have tolerated the 400 mg very well apart from walking issues, but I still walk for an hour every day despite these.
I feel very blessed to be on the Olaparib and would like to stay on it for longer than 2 years but will have to see what the Marsden recommends. I am 77 years old.
I was given Olaparib after my second line of chemo in 2021. I am BRCA 1 + The drug caused very few side effects for me and I took the maximum dose from the outset.
Over the course of 18 months my ca125 began to drift upward, often only by 1 point and under 35.
By Christmas 2022 it was clear that Olaparib was not working as well as hoped and a CT scan confirmed nodular disease. A trial at RMH in January 2023 using celerasertib to boost Olaparib made my ca125 fall 100 points in 7 weeks but also proved to toxic for me to continue.
My experience of Olaparib is therefore that I tolerated it well but it only gave limited control over my disease. I do believe it did slow my recurrence significantly and would choose it again.
I would suggest that for patients starting a Parp inhibitor at week 8 following chemo that using maximum dose and allowing patients to find it intolerable is NOT taking care of the well being of cancer patients.
The option should be given to start on a low dose and work upwards. Patients are often exhausted and still suffering the after effects of chemo when asked to start another drug with a long list of side effects and it is no surprise that many have a rough time.
I hope you can count my submission as I had Olaparib after second line.
I was diagnosed in March 22 with grade 3 serous OC, had a full hysterectomy before chemotherapy & my last chemo was around November 22, I then went straight on Avastin every 3 weeks & Olaparib 400 ml daily but I didn't respond well as platelets always low & I had an folate deficiency whereby I came of treatment, had some blood infusions before being out back on treatment.I have suffered severe arm/shoulder pain as a result of the targeted drugs but am now of the Avastin after having 10 out of the 18 was going to have & just on Olaparib 400mg a day for the next 18 months, CA markers have remained low after chemo & have gone down to being checked every 3 months!!
I have was diagnosed with OC in 2016. I had surgery then 6 rounds of chemo. Unfortunately in 2019 I had a recurrence with small cancerous nodules in my abdomen. I once again received chemotherapy then I was put on olaparib in Feb 2020. I have been on 600 mgs since and tolerate it well. I have regular blood monitoring and 6 monthly scans and all good to date. I count myself very lucky.
I was diagnosed with HGSOC in Nov 2017, stage 3c. Had 4 cycles of Chemotherapy, full debunking surgery then 2 more Chemo cycles. Gene test in October 2018 showed I was BRAC2 ( I had breast cancer in 2005).
CT showed NED no more treatments just checkups and annual CT.
October 2022 annual CT showed cancer had returned to Liver and spleen, stage 4a. 6 cycles of Caroplatin and Taxol reduced cancer.
Avastin only given on first diagnosis, so I’ve missed out on Avastin, as not available for me.
Olaparib started in June on 600gm daily, after 4 weeks taken off as bloods low . Now on 500 gm daily which suit me so far. Waiting for CT scan to see if they are working.
I have hope that Olaparib will keep the disease at bay. Without Olaparib I know this disease will return.
I was diagnosed stage 4b in February 2022. I had primary surgery and then 6 cycles of Carbo/Taxol/Avastin and now I continue with Avastin (which will stop soon) alongside Olaparib (which is due to stop next year). I feel very lucky that I was able to have this after 1st line treatment. I'm still currently NED, normal CA125 and I feel very well in myself.
I really struggled with the max dose of Olaparib, I had to have blood transfusions and breaks. However now I am on a dose of 100mgs twice a day and things have been stable for nearly 8 months.
I'm not sure if it's my successful surgery, Chemo, Avastin or Olaparib that's got me to where I am today. But I'm grateful that I was able to have it all at the beginning. I feel it's given me my life back and I can be a Mum to my little girl.....its given me extra time with my family and friends. I would love for all women to have this opportunity.
I have just finished 2 yrs of Olaparib agter chemo and avastin for stage 4 OC. Now told I'm finished with it because of long term side effects eg impact on bone marrow. Next to no side effects.
I was diagnosed with stage 4a high grade serous ovarian cancer in October 2022. I received three rounds of neo-adjuvant chemo (carboplatin/taxol), had debulking surgery (optimal cytoreduction, removal of spleen, omentum, full hysterectomy), and then 6 more rounds of chemo with the addition of Avastin for the final 5 rounds. Finished chemo in May 2023. Continuing to receive Avastin every 3 weeks, and started Olaparib a month after chemo ended.
Tolerating the combo of Avastin and Olaparib well. So far all blood work within normal range. Experiencing mild background fatigue and periodic nausea, but very manageable, and haven't needed to take anti-nauseants. Able to do my usual daily activities, including 5K walk every day. Experiencing muscle and joint aches, body stiffness, pain in hands and feet, but not so bad that I need pain meds. CA-125 was 12 at the end of chemo, and at 10 since starting Olaparib.
I am in Canada, and will be receiving Olaparib for 2 years for maintenance therapy. Very, very grateful to be able to get it.
Thank you for your comment. You can leave a further comment on this post, direct message us through this forum or email support@ovacome.org.uk to share any details about your experience of olaparib for inclusion in the submission. If you have any queries please do let us know.
Hi , I was diagnosed with grade 4b HGSOC in September 2022 . Following chemotherapy and then radical debulking surgery in January 2023 , I was informed that I was eligible for Avastin for 15 infusions and Olaparib for 2 years as I am BRCA 1 ( somatic mutation ) and HRD positive.
I am currently taking 600 mg daily of Olaparib and I seem to be tolerating it well ; my bloods are good . I do have some aches and pains . My. CA125 level , which was 35 post chemotherapy is now at 16, which I’m delighted with and my oncologist seems to be slightly surprised that it has continued to fall .
I am so grateful to have “ qualified “ for this drug , which I believe has helped to keep me stable . I hope that its use may be extended so that many more women may benefit . It feels like a lifelike to me
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