Hi, I have just finished 6 rounds of chemo and the radical hysterectomy. Now my oncologist is going to put me on Avastin iv every 3 weeks for the next year. My scans now show no evidence of the disease and I am so happy. Has anyone else been on Avastin for any length of time?? Have you struggled with side effects??
Has the cancer come back while you are on it???
Everything seems so uncertain and I don't get straight answers from my nurse or the oncologist. I feel I will just spend too much time stressed
Hello, after my chemo and debulking surgeryI had a plan for 20 rounds of Avastin alongside 2 years of Olaparib. I had a few episodes of neutropaenia and so the Olaparib dose was reduced and apart from some mild but annoying nausea until lunchtime I tolerated that well.
I had some floaters in my eyes so in the end I had 11 of the planned 20 Avastin doses.
My Consultant said that many people can’t do the full plan but that Olaparib is the key treatment. My Ca 125 was measured every 3 weeks and remained normal.
I have now finished the Olaparib in August and my 3 month follow up bloods are normal today, so I’m calling that a success.
I had a few agreed holidays from the Olaparib for 4 days on two occasions for big social events and felt epic within 24 hours of stopping it, and had a week off with each neutropaenic episode but otherwise took it as prescribed. You may tolerate it very well and I hope you do but I found the nausea a drag and was glad when I finished it.
best of luck , elinor
That's really interesting that you stopped a few times for 4 days. I'm 2 months in with Niraparib post chemo etc and the nausea, vomiting & insomnia is making me think I should give it up altogether. I'm going to try a break of 2 weeks over Christmas/New Year and then review the situation. Did you EVER feel well on it? Or just managed to get on through for 2 years? I keep missing things as feeling too nauseous to drive places. Hard to decide how to proceed...
Thanks for replying. I am not getting Olaparib or any PARP inhibitor as the genetics on my cells were negative and so those drugs won't help me my oncologist says. I am only having Avastin for 16 rounds every 3 weeks. Just fingers crossed.
Congratulations on your blood tests staying normal.
Have a great Christmas. X
Sounds like a harsh treatment with Niraparib. I am not getting it and from what you are going through I am quite OK with ghost. Sometimes these treatments take just too much out of you.
Hope you can take a break for Christmas and let your body have a break.
Lots of positive thoughts to you.
Xxx
Hello Spooks, it took probably 3 months to get my dose right. I was really nauseous and vomiting regularly on 300mgs twice a day, and had to have a week off as my bloods weren’t right. Once they reduced my dose to 200mgs twice a day it was better and I was never neutropaenic again.
I tried various things to manage the nausea and found the best regime for me was to set an alarm to wake at 6am every morning to take mine with a little fresh orange with grated fresh ginger ( and then try to drop off again). Doing this meant I could eat about 6 hours later.
I took my evening dose with my dinner and didn’t feel nauseous in the evenings. I did consider that taking it with breakfast might be a good idea but I couldn’t face it as I’ve never been a breakfast eater.
I also was teetotal for the whole 2 years (apart from the 4 days off I had on those 2 occasions) as the literature made me concerned for my liver function so I decided to do that to preserve it.
I got used to feeling subpar and although I thought I was ok, my closest family and friends would tell you that I wasn’t myself on Olaparib.
Everything I read about Olaparib made me want to complete the treatment and my CA 125 level was within the normal range so tthat helped .
I finished it in august and felt epic within 4 days of stopping it.
I really hope you can find a way to have as much of it as you can
kind regards,
elinor
Dear Elinor, Thank you for telling me about your experience. It is so useful. I intend to try and continue with the PARPs but if I need to take a break then I will. I have some anti-sickness drugs now which may help. Well done to you for completing the course.
Spooks
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