Hello ladies. I have just finished my last frontline chemo session and now need to make a decision on my maintenance treament. I am BRCA1 and have been told by my consultant that I can have Olaparib (Lynparza) on its own or with Avastin too. She is thinking that maybe Olaparib on its own may be the best option to reduce side effects but she said the decision is mine. I obviously want as few side effects as possible but I I defiitely want to do as much as possible to delay the onset of a recurrence too so I'm not sure what is best. Is anyone else on this double maintenance drug regime? Or if you have had avastin on its own do you mind letting me know how you tolerated it? I kow we are all different but it may help me to make a decision.
Thank you! xx
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Carpediem68
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I think this is the new thinking after frontline if you are BRCA + but I can see that’s a lot of maintenance drugs all at once! There are some technical issues: after frontline they give you both drugs for a limited time (2 years Olaparib and 18 sessions of Avastin)
I am on Olaparib following first recurrence and can stay on it as long as it’s working.
If you don’t go for Avastin now…could you have it later on if you relapse?
I had Avastin on its own after my initial chemo and debulking. It was much easier than chemo but not without challenges…BP, nosebleeds, anaemia etc.
Many thanks. yes, i think BP and anaemia are my concerns. Avastin won't be available if I reoccur apparently which is why I'm wondering whether I should give it a try now while I can. How long have you been on Olaparib? Thanks for your feedback x
Hi Samantha. I'm facing a very similar decision... I've had 3 lots of Avastin alongside my Taxol/Carboplatin first line treatment. I have Avastin on its own this week, but in a couple of weeks I'll meet my oncologist and be offered Olaporib alongside Avastin - which is great in some ways, but I am worried the side effects will be debiliating and mean I can't do things I'd really like to do with my family and friends....
Hi there. Yes, that's my worry. My bloods have got progressivy worse during chemo so I'm not sure if the two drugs together may be too much. I guess i'll have to see how I respond. Good luck to you too. x
Hi Samantha 101I started Avastin plus Olaparib in Nov 2021. My side effects are, neuropathy ( which I had before I was diagnosed oc 4B), runny nose, fatigue and some constipation. All are entirely manageable. My cancer has metastasised so I wasn’t suitable for surgery, therefore I have none of the associated complications. I also have food disparity which started with the chemo and has continued so I don’t know if it’s affect by the maintenance drugs. I was incontinent for a time but that’s ok now. The combination is the preferred way forward now for maximum killing power! I hope this helps. X
Many thanks for your feedback. Yes, I really want to keep side effects to a minimum but more than anything I want to keep the cancer at bay. It's such a hard decision. I think my body will probably make the decision for me. Hope the drug combo works well for you. x
Hi Samatha.This is purely my personal opinion but I think i would have both.
I understand the combination is proven to be more effective than Olaparib alone and I would want to take the maximum treatment available to me.
If you found the Avastin troublesome you could always stop that part if the treatment.
Maybe check with your Dr if any of the side effects from the Avastin could jeopardise your suitability to continue with Olaparib too?
Thankfully I found the 2 years of Olaparib OK on the whole with the side effects coming and going and never being severe in nature .
I also had a few doses of Avastin during my chemo. I'm not sure to be honest which of the side effects I had that could be attributed to the Avastin except a few nose bleeds maybe.
I think whatever decision you make you will be getting a really great course of treatment.
Hi Liz. Many thanks. Good to know that you found Olaparib ok for two years. My oncologist says that that does the bulk of the work but i feel as though i don't want to turn down avastin until I've tried it. Keeping the cancer beast away id the ultimate goal. When did you finish your Olaparib treatment? I hope it has worked well for you. x
Yes I understand just how you feel.I finished olaparib on new years day this year. I was very anxious about giving up the tablets for quite a while before hand and probably a month after but now I feel OK about it . I'm currently having 3 monthly bloods and phone appointments.
That’s interesting, Liz. My oncologist in Ireland has mentioned that he might take me off Olaparib this summer. I’ll have been on it for 3 years by them. It’s a frightening thought. I glad all is well with you. I’d be interested to hear from anyone else who came off it. Thank you for sharing.
I wonder if there are other ladies like you out there who's drs are considering stopping the Olaparib ?I've often wondered if the ladies who have the treatment for recurrence actually need any longer than 2 years like us first line ladies (if that makes sense).
I imagine it would be relief to quite a few to stop the treatment if they knew they'd had the optimum course. Side effects and risks are no fun are they?
Hi Sam, I was on Olaparib for 6 months and asked for Avastin had it had not been recommended by Nice at the time, I do wonder if both would have made a difference. I now have the option of paying £1800 per Avastin treatment, I would try and if you don’t tolerate stop. Hate bringing money into it but it’s the world we live in! Stay well xxx
Hi Esmerelda. many thanks. yes, I'm starting to think that I should at least try it and see how I tolorate it. I don't want to regret dismissing it as an option. I hope you are doing well with your treatment. x
Hi Sam. I just had avastin and managed fairly well, just having a stiff and painful neck and had to take baclofen to manage this, but in all, nothing in comparison to the chemo. I have walked every day since my surgery and wonder if that helped. All the best tomyou
I had 17 x Avastin (last one cancelled due to me having an accident and needing surgery). Been on Lynparza since July 2021. My last CT scan (3 weeks ago showed no sign of cancer). Diagnosed Oct 2020, Stage 4B, Peritoneal, BRCA1+
If you can tolerate the side effects, I would do both as they work differently and you want to target any remaining cancer cells
Thanks so much for this and for the links. That's really useful. I'm thinking that I should give both of them a go and see how I tolerate them. I hope the Olaparib continues to work well for you. Great to hear that you are currently NED! Best wishes and good luck. x
I had Avastin on its own for at least 6 months. I had nose bleeds and was a bit tired but I was working full time throughout. I had a recurrence after that. I’m on Olaparib now and tolerating it well. Working part time. I’ve no side effects except that my creatinine levels are high and the usual tiredness. I haven’t made any decisions myself over the years, to be honest. You’re great to be able to make decisions. I found it hard to think at all after chemo.
Hi. This is just me but I believe the trial of Avastin and Olaparib together tested the combo only against Avastin alone and not against Olaparib alone. I would ask about doing Olaparib alone to cut down on side effects. Olaparib alone should be very effective if you’re brca1 but that’s just me. I guess if you try both they can always cut back if necessary. I hope you will be cured!
Yes, my oncologist said that was the problem with the trial, that they didn't test olaparib on its own. So it's a bit of an unknown. I think it will come down to how my bloods and blood pressure are doing in the end. She said as i already have high blood pressure, that may decide for me on the Avastin. I may not have a choice ... x
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