I'm posting on behalf of someone who has contacted Ovacome support services and hope you may be able to help please.
This person will shortly be commencing 18 cycles of bevacizumab/ Avastin and is seeking to hear from people who have experienced this treatment please. They would like to know how people have felt on this treatment, what side effects people had and how it compared with chemotherapy. Any suggestions of how you managed any side effects would also be welcome.
It would be much appreciated if you could kindly share your thoughts below.
Thank you all for your input and the support you provide one another.
Best wishes
Annie - Ovacome Support
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I've so far had 2 rounds of Avastin, I too have had sniffles (thought it was just me) which seem to get worse when I'm eating. Also experiencing muscle aches and sort of heavy feeling. A little like mild flu effects our muscles. Also agree much more tolerable than chemo. 2 rounds in and and 16 to go, but if it does it's job well worth the mild side effects I'm having so far. Others have said that the side effects get less and more manageable as time goes on. I would advice anyone to go ahead with this treatment if offered. Much love to all xx
I had a runny nose and mild nose bleeds occasionally. also my voice went a little hoarse which lasted for some time after treatment, apart from these mild side effects was absolutely fine x
Hi, I was on Avastin for 36 sessions in the past which to me was a walk in the park compared to the reactions I have had to chemotherapy, symptoms of sniffles, slight joint pains, headaches, and hand and leg cramps but all very tolerable, had to come off it as it was affecting my kidneys and blood pressure and unfortunately my cancer recurred four months after stopping.
Back on it now at present and about 17 sessions in and the same symptoms as before but all very tolerable..Hoping I can stay on it for a long period again.
Hi - My Mum who is in her 80s has been on Avastin since about April. Despite all the worries about potential side affects at the beginning, including the slight threat of damage to the bowel, she has done very well. The only thing is she has developed terrible back and then shoulder pain which have been put down to bone thinning and age, but can't help but wonder if the Avastin might be a factor.
Hi. I trialled Avastin in 2007/2008 for stage 3b OC. I initially took alongside 6 cycles of chemo then continued for a further 12 months having an infusion every 3 weeks during which timeI continued to work full time just having every 3rd Weds off work. I had a blocked nose and occasional nosebleeds and aching joints for which I took painkillers. After completing the course It to 3-6 moths for the side effects to completely go. I has a remission of just under 4.5 years. Good luck xx
I have not personally been on Avastin but may be in the near future for a recurrence. I'm in the states but a survivor that I know uses Flonase says it works but would of course have to be cleared with the Onc as its a steroid.
Hi, I was put on Avastin only after having it alongside my chemo which finished about two years ago. I asked my onco how long a could keep having it (3 weekly infusions) & he said "as long as it works" . So far 🤞 it is still working. I have very little side effects, sneezing for a few days after & constant sniffles but nothing I can't handle. I've had lots of stomach issues but these started before Avastin. Can only put that down to the after effects of two peritonectomies. I love my Avastin 🙏
just to add to what others have reported, I had snuffles with a little blood. There were worries about my bowel from my oncologist but all went well. I was on it for 16 weeks back in 2016/17.
I think it has left me with a permanent nasal dryness but I am hoping to start another course of it, which indicates it’s not very bad.
Thank you all so much for sharing your experiences of bevacizumab/ Avastin. I'm sure your feedback will be really valuable for the person who is about to start this treatment.
My late wife Janet was on Avastin for some six months. She tolerated it pretty well, but a routine blood test revealed that she had suffered a rare but documented side effect, namely seriously impaired kidney funtion - this meant that she had to come off Avastin. As I say, this is an unusual side effect, but I would recommend that anyone on Avastin long-term should ask for kidney function to be included in any routine blood tests. I hope that helps! All best to everyone, Peter
Thank you for sharing the experiences of your late wife Janet. I'm sure this information about less common side effects to bear in mind will be really useful.
We're here to support anyone affected by ovarian cancer, including those who have been bereaved because of the disease. Please don't hesitate to get in touch if you would ever like to talk things through. You can send us a message here on the forum, email support@ovacome.org.uk or call our Freephone support line on 0800 008 7054. We're here Monday - Friday, 10am - 5pm.
Thank you for your reply and offer of support. I do keep an eye on this site in case any questions come up that I can answer from experience. It's now a little over five years since I lost my beloved Janet to this disease; she survived four years from the initial diagnosis, with more than a year in remission, and even after recurrence she remained in pretty good health until the end, which came very quickly in the last two months once she experienced bowel blockage. She was very well looked after at the Guy's Cancer Centre in London, under the care of the wonderful oncologist Dr Ronald Beaney. The one thing that has haunted me, and perhaps someone can put my mind at rest, is that several years earlier we had attempted four rounds of IVF in the hope of conceiving. We were unsuccessful, but I've often wondered whether overstimulating her ovaries so much, as is necessary for egg collection, might have been a contributing factor to her developing ovarian cancer. There's nothing in the literature that I can find to confirm or deny his hypothesis, but since the reason for the IVF was my poor sperm quality rather than any deficiencies on Janet's part, I can't help but feel an element of guilt, daft as that may sound! Any thoughts would be very welcome. All best wishes to you and to everyone on this site, Peter.
Thank you very much for your response. It’s lovely to hear that you still contribute to this site and offer support to others. I’m sure this is much appreciated by the forum community.
I was sorry to learn about Janet’s passing. It sounds like this was a very challenging time. I am glad that she was so well looked after that the Guy’s Cancer Centre in London. Please do contact us if you would ever like to talk things through, we are here to support you.
You mentioned some concerns about the IVF that took place several years before Janet’s diagnosis. Please know that you don’t sound daft to me and I’m sorry to hear that this has been worrying you. Cancer Research UK provide some information about IVF within their resource about ovarian cancer risk that I hope may be of interest. They explain:
‘IVF
Ovarian cancer risk is not directly associated with undergoing IVF, a meta-analysis of cohort studies showed.[5] Women with infertility who undergo IVF have a higher risk of ovarian cancer compared with the general population, but this is because of differences in the number of children and duration of breastfeeding, rather than the IVF itself.’
The full resource can be found here on their website: cancerresearchuk.org/health... . This information is under the subheading of ‘Reproductive and hormonal factors’.
I hope this information is reassuring. If there is any further information we can provide or anything else we may be able to help with, please do drop us a line via support@ovacome.org.uk or call our support line on 0800 008 7054. We can respond to questions or just chat about what's been on your mind. We can also let you know about our monthly online bereavement support group if that may be of interest to you. You would be warmly welcomed to attend.
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Recurrent Platinum sensitive ovarian cancer
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Lobbying workshop for Ovacome members, Saturday 16th November 
