Avastin and Olaparib cocktail

[suzannebirch]

Stage 4 Ov. 6 weeks post debaulking and 7 rounds of chemo later Im about to start on 3 weekly Avastin and daily Olaparib PARPS. Any feedback on side effects of this combination??? Also be good to hear if there are any success stories out there from late stage OV having had or having the same treatment.The good news posts always give me hope and make me feel more positive! Thank you in advance lovely ladies x

[Tiff52]

I am on avastin following frontline for 7 months. Been on 10 months so far and is holding me stable. Ca125 has risen but scans mostly clear (no new growths) stage IVb high grade serous Dx 3/16/2020. Good luck

[RoseMS in reply to Tiff52]

Tiff52 are you on the Olaparib also? I am only on Olaparib following frontline chemo diagnosed 3c Dec 2019.

[suzannebirch in reply to RoseMS]

On 3 weekly avastin and Olaparib.. X

[Tiff52 in reply to RoseMS]

No I was on doxil/avastin right out of frontline then just avastin and my ca shot uo from 140 to 487 and now they added a dailyChemo pill - an old chemo and original ones for treating OC- cyclophosphamide (Cytoxan). Feeling soooo much better now though. Will get rescanned in September snd will get ca redone in 2 weeks so praying it comes down. I feel great though I am BRACA negative so my dr said PARPS may not be an option- at least anytime soon

[suzannebirch in reply to Tiff52]

Im also BRCA negative. Never in doubt i would go ona PARP but waited for the BRCA rssult to come back as some PARPS better suited for BRCA positive rhan others so my ONC tells me???,, 🤔xxx

[FlowerRose in reply to suzannebirch]

I learned something interesting about this. I am brca negative but when they tested the tumors removed during surgery they found THEY were brca positive! I asked specifically about this, and was told that for all practical purposes, I should consider myself brca positive because the positive tumors would respond well to the same combo you're on. I'm on 3 weekly avastin and daily olaparib, too.

[suzannebirch in reply to FlowerRose]

Thanks for that reply. Hows it going? I had my first Avastin last week - i have a very upset tummy!!!

[FlowerRose in reply to suzannebirch]

Aww, sorry to hear that. I've been on avastin/lynparza (olaparib) for 14 months now and lynparza made me so nauseous, ugh. For a solid 8 months i was queasy and throwing up, but it eventually subsided. Avastin makes my joints ache and gave me bloody snots (sorry). Oh, and lynparza constipates me like crazy (sorry again.) No rise in blood pressure for me, like lots of people suffer. Also oddly lynparza made me very tingly, like over my while body. And not in a very pleasant way. Not constantly, but in waves, head to toe. That's also lightened up a bit but sometimes when I wake up in the middle of the night I'll get a wave of tingles, then it's gone.

[suzannebirch in reply to Tiff52]

Thanks and good luck to you xx

[Itha]

Hi, I am the same as you. Stage 4b, had all the chemo and the surgery. Been on Avastin already and started Lynparza a few days ago (Tuesday).

So far, I am doing really well. I don't have any nausea but do have a slightly squirmy tommy. Just aching joints and tired - but that was before I even started the Lynparza.

My oncologist said I should be patient - the chemo takes time to get out of your body

Eat before you drink it and then take again before you go to bed. This way you should have a better day.

I also had my first Phizer shot on Monday - a sore arm and tired, but recovering quickly

Watch this, youtube.com/watch?v=uHfqq9d...(Not working as expected?). It gave me great comfort to know how these drugs work and how well they work

I am BRCA1+

PS: I am working with a functional medicine Dr and he is looking after my gut and immune system. I can highly recommend if you have the funds to go to someone who can support you in this way. A healthy gut = a healthy immune system. Your gut and microbiome takes a huge knock with chemo

[suzannebirch in reply to Itha]

Thank you so much for this info. Really interested in the gut health and a firm believer in positive contribution to recovery with the right nutrition. What should I search for when looking for a proper qualified practionner. Xx

[Itha in reply to suzannebirch]

I used Dr Johann Baard, kronodeus.co.za He is AWESOME! he considers the cancer you have, the treatment you are on, does loads of tests and then only creates a protocol for you. I did a lot of research before I decided to go with him. He consults online.

[suzannebirch in reply to Itha]

Thanks loads ill look him up x

[Itha in reply to suzannebirch]

What to search for: I looked for integrative oncology and found various offerings. I then engaged with 4 to compare their approach. I was willing to spend some money up front to do this in order to make an informed decision. One response was a fairly stock standard OC protocol. It was not personalised at all. Another was based in the UK. They responded quickly and even phoned me (I am in South Africa). They were more than happy to assist and get all the tests done and then send me the script to take to a SA Dr so I could get it here. The costs was significant to go ahead. They seem to know what they are doing. Another was in South Africa. I had a 2 hour online consultation and the Dr seemed to know what he was doing with a lot of very specialised approaches. Unfortunately he never followed up with the next steps despite me connecting a few times asking about next steps. My oncologist was apprehensive about him as she knows the centre and what they do. Dr Johann Baard's approach is scientific. He only works with proven results based on proven research. I am very happy with him so far and my oncologist is very happy as well. He does his research and updated my protocol significantly once I started with Lynparza as some of the supplements would have interfered. I am not sure if this is of any use, but happy to chat directly

[MPee123 in reply to Itha]

Hi Itha do you mind if I ask which functional Dr you’re using please? Thanks Martine x

[Itha in reply to MPee123]

Dr Johann Baard, kronodeus.co.za. He is AWESOME! he considers the cancer you have, the treatment you are on, does loads of tests and then only creates a protocol for you. I did a lot of research before I decided to go with him. He consults online.

[Tim1963]

Hi,My wife was diagnosed 3c/4 november 2019 and finished chemo in april 2020 . She had surgery and started avastin/olaparib in june 2020 even though she is brca negative. After initial difficulty in terms of fatigue and neuropathy she was doing well . She switched to niraparib on its own in june 2021 as it is more suitable for brca negative . That has been hard due to sickness and fatigue plus high blood pressure. But she is now getting better and has started swimming again which she loves. It is something she does on her own and thats important to her.Her ca125 has remained much the same around 15-17 for the last 12 months and her scans are clear.

I wish you well and it sounds like you are doing great

[suzannebirch in reply to Tim1963]

Thank you for taking the time to reply. I am also BRCA negative so im interested as to the decision to switch to niparib esp as your wife was tolerating the Olaparib. Something to ask my oncolgist. Thanks again amd good luck to you both x

[Tim1963 in reply to suzannebirch]

There was a study which I beleive was called either paolo 1 or solo 1 which showed that even though olaparib wasnt ideal for brca negative patients there was sufficient evidence to show it provided a benefit . Zejula/niraparib was approved by the fda in october 2020 for first line maintenance for brca negative patients.

someone else may have a better understanding of this than I do but you are obviously doing great on olaparib,

best wishes

tim

[Lyndy]

Hi Suzanne, when I finished first line in 2016 Avastin was the only maintenance drug available. I found it tolerable, although it did give me nosebleeds. Fast forward to 2021 and I am 9 weeks into Olaparib following chemo for recurrence. Again side effects tolerable. In a way I am grateful not to have had the two together, as I do think the impact on normal life would have been more difficult to deal with. However, I guess they choose to blam the disease with both these agents to give you a better chance of not having a relapse. Avastin is generally 18 sessions, so it’s not forever. Try not to anticipate side effects… they might not come. Wishing you all the best on your journey xx

[suzannebirch in reply to Lyndy]

Thank you so much for this info. Much appreciated. Good luck x

[Katmal-UK]

Hi. I have stage 3b OC BRAC2. trialled Avastin in 2007/8 and started on a trial of Olaparib in Jan 2014 (still on it). Although not taken combined I can advice on the side effects I had/have. Avastin.... nasal congestion, nose bleeds, raised BP, aching joints. Olaparib... lowered BP which cases dizzy spells, bowel issues , tolerating well and generally feeling great. If u want more in depth details feel free to message me. Good luck. Kathy xx

[suzannebirch in reply to Katmal-UK]

Thank you. Really helpful. Good luck xx

[Amiieb in reply to Katmal-UK]

I always see you pop up Kathy on threads in here and you always give me hope! My mums diagnosed 3b primary peritoneal in jan 2020 brca2 positive and has responded really well so far, so thanks for always sharing with us xxx

[Katmal-UK in reply to Amiieb]

That’s good to hear, long may yr Mum continue to do well xx hugs to you both. Xx

[Rankij11]

Stage 1V . Inoperable. BRCA2 +Front line chemo finished November 2019. Been on Olaparib since . Just finished 5 miles on top of downs hitting a little white ball. Every day I say thank you for Olaparib!! You may get some symptoms, everyone is different with this I feel??? But mostly can be managed in a way that suits you . For example I get really tired an hour or so after taking, so one dose I take before bedtime. And then conk out for 7-8hours . Means I have a little slump around lunch time for the morning dose. But others may be completely different. Not done Avastin , had growth too near bowel.

Anyway persevere if you can , it’s a life line !!! Hope all goes

Jennifer

[suzannebirch in reply to Rankij11]

Thank you so much for replying. Just the sort of good news stuff i needed. Good luck x

[Cumbrianlass5 in reply to Rankij11]

So wonderful to hear from someone with was stage 4 and inoperable and is still going strong. I am too. However, I am BRCA negative and have been on niraparib for the past four months.Last scan showed a slight progression in the cancer but a drop in CA125 so they are leaving me on them for another three months until next scan. I am so grateful for them.

I feel really well and take heart from those who are inoperable but still keeping going. I began 18 weeks of front line chemo in September 2020.

Take care my dear and keep on keeping on. Very, very best wishes for your continued good health x

[suzannebirch in reply to Cumbrianlass5]

Thanks. Good luck xxx

[Rankij11 in reply to Cumbrianlass5]

Always good to hear from someone else who hasn’t done the op. It always seems that everyone else has ! So good to hear you are doing well. I think we have to keep battling and hope that something else will miraculously appear to keep us going . You sound in good spirits , let’s keep going !!! Love from sunny(today!!!) Sussex

Jennifer

[Cumbrianlass5 in reply to Rankij11]

Yes, let's keep on keeping going. All best wishes x

[GSML]

Hi Suzanne.Always think positive.There is always hope.I had debulking surgery in jan2020.BRCA negative to be correct VUS(variant if unknown significance)after my 6 rounds of chemo started Lynparza with Avastin and still on it.Have major nausea after Lynparza but with food it is little better.CA 125 before surgery was 7000..After surgery 452..Now controlled within norms.Scans dont show growth or..I was 3C high serous ovarian cancer.Slowly I gained some weight because after surgery and chemos I lost a lot of weight and was very weak.Now I started doing light weights and trying to go walking because I feel tired.I Thank God every day that I am alive.God is Gracious.Good luck.Think Positive.That really helps.

[suzannebirch in reply to GSML]

Thank you. Good advice xxx

[Leniko]

Haven’t been on Olaparb, but Avastin has kept me in remission for 2 years. ❤️🙏