My Ovacome
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Avastin

My wife has low grade serous ovarian cancer, she was treated with Taxol, Carboplaxin and Avastin. We were told the Avastin had some serious side effects including bowel perforation. After her 3rd treatment, we had her admitted into the hospital with a bowel perforation. Currently she has been in the hospital for 3 weeks, having multiply issues. My wife is a long time survivor of Ovarian cancer. She was first treated for the disease 38 years ago and in remission for the entire time. She did develop cardiomyopathy due to chemo she received when she was 21. At any rate beware of the Avastin, hope others have not had this same experience. Wishing all of you brave ladies the very best.

Kindest Regards

Steve

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Thank you Steve for the post. I have long felt that the side effects of Avastin are dismissed by the medical profession. I actually had a chemo nurse say to me "Avastin is nothing. We think of it as just juice!" Yeah... easy for her to say! My gyn/onc told me that here in the US Avastin is given at much higher doses than in Europe. Makes me nervous!

I'm sorry to read that your wife is having such a difficult time and hope that things improve for the both of you soon💐 Dee

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I hope you wife is recovering from a very scary experience. I recently read a very informed PP presentation about Recurrence and treatment, including Avastin which addressed the side effects and risks of Avastin including bowel perforation and also fistulas - that risk was stated as 0 to 11% or 0 to 9% if Avastin used with another agent.

The professor stated that the patient needed to be kept well informed of all risks but I don't think this is happening.

That must have been very frightening.

Hoping that your wife is getting better and doing well.

Sending prayers

Clare

Edited to state this is an American presentation and the dosage of Avastin may be different

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I also have low grade serous and hadvacastin as part of second line. Before starting treatment I was made aware of the risks including the possibilty of bowel perforation. I generally found the experience unpleasant I had lots of sinus pain, minor nose bleeds and aches/pains. It raised my blood pressure and cause protein in the urine. I was not in it for very long but lots of women have taken it successfully

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First of all Steve , my sincere kudos to your wife to have been in remission for 38 years. In other words she was cured of OC. History of sorts and needs to be taken cognisance of medically. Has the chemo regimen changed over these 38 years? Interesting to know.

My wife too is in remission since seven months after being detected with high grade stage 3C PPC. We too were suggested Avastin post surgery and chemo, but the surgeon (yes surgeon) opined that Avastin has yet to prove itself and that the tenure of treatment is too long and with side effects . So we decided against it. Be sure to receive many a response to this chat since it's a hot bed topic to debate on.

Here's wishing your wife a speedy recovery and healthy life.

Naimish

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Will follow this post with interest. I have stage 4 high grade serous PPC & have, so far had 2 doses of Avastin alongside my first 2 cycles of chemo. There is a chance I'll have my third dose this Friday, & the aim is to continue to have it 3 weekly after my chemo finishes for potentially a further 12 doses...as a 'maintenance' drug...

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Hi Steve.

I've just had my 6th dose of avastin. I'm due another 12. I was told by the nurses and Doctor that avastin doesn't have any bad side effects. I've googled avastin and have read about the bowel perforation being a side effect. Yes it's rare but can happen.

I get a very sore nose and have presently got a bad back and the pain radiates into my hips. That maybe avastin. May not. Could be age.

I do think the medical staff should make us more aware of the side effects and not 'play it down' as they seem to do.

I'm in a clinical trial and so am treated and monitored very precisely. I guess the trial would be null and void for them if avastin wasn't taken so they do want us to have it. Often at our expense it seems.

Anyway, wishing your wife all the best and well done to her for being in remission for such a long time. 👍🏻👍🏻👍🏻👍🏻

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I'm too having the same symptoms as you suzanne. My lower back has been bad with joint pain in legs and knees and sore sensitive nose. Just on Beva every 3 weeks now as I'm on a trial ICON 8.

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I too was on avastin! Thank God my bowels are fine but my bones and feet are terrible. Now I have plantar fascititis which is so painful especially in the morning. I think doctors concentrate on the cancer and really don't discuss more about "side effects"!

Everything difficult, just have to stay strong and positive.

Carole🐞💃🏻

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I have such bad throat problems with Avastin. I cannot sleep because every time I swallow it's like my throat is being cut. I'm prepared for the pain when awake. Back to ENT later today. Cameras etc have revealed nothing. I'm fed up with oncologist and ENT specialist saying it's not avastin. I could get through this pain if I knew it was avastin but as not confirmed I m worrying constantly that it secondary cancer. Hoping for more answers later.

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Hi Tracy, I hope you will have a good result from EnT, I had my 2nd avastin with my last chemo last wed. And I'm slowly experiencing what your feeling at the moment, my throat is sore and painful so it must be the avastin. I can't wait to see you next week and have a good chat.. Take care.. Xx

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I bet people are fed up on here about me going on about my throat. I've had it for so long now and it's got me down so much more than the cancer. Hoping ENT can help today xx

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Hope they are able to offer you some answers and relief . I had same symptoms with my first dose of Avastin . Really bad throat had to keep sipping water through the night. Since then have luckily been ok but get some sinus congestion over night and have to clear my throat some mornings. Seems to go to my throat and not nose as some people have .

Sounds as if definitely connected . Hope they sort soon. Love Kimx

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I only want someone to acknowledge it could be Avastin. We are a different so how do they know it affects me like this? I hope you manage to keep the sore throat at bay x

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Hi Steve

38 years of remission is fantastic but must be devastating after doing so well for so long to have a recurrence and this awful complication . Really hope they are able to resolve and your wife gets back home soon.

I was diagnosed stage 4 high grade serous OC in June 2016 and had carbo/taxol and radical debulking . My team were very upfront about the pros and cons of Avastin . Was meant to be having it with 2nd chemo but they didn't go ahead due to other issues I was having with bowels. Then wanted to wait to see all tumour clear of bowels after surgery . Introduced it with 6 th chemo as they said the bowel area all clear and risk of perforation therefore reduced. Although if the funding hadn't changed think they would have saved it for a recurrence rather than using now as only funded as part of first line in UK at present .

Oncologist didn't want to take the risk of me having an early reccurance and not be able to offer the Avastin . Am on 3 rd so along way to go !

Yes I think we should all be made fully aware of all the risks involved so we can make an informed decision . This helps if you have trust in your team but unfortunately with this disease it comes down to doing all you can (despite the risks ) to spend longer with your loved ones .

Sending you and your wife all my best wishes and a big hug . Love Kim x

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I agree with Dee345!!!! I'm actually laying in the hospital now from Avastin!!! My blood counts, blood pressure and urine are all out of whack!! Here in the United States we receive double the dose then in Europe. I was receiving 15(unsure if it's ml or what) every 4 weeks. In Europe, you receive 7.5 every three weeks, I believe. I ended up with high blood pressure, which my original cardiologist drug overloaded me to try and get my pressure down to where it would be acceptable to receive Avastin and too much protein in my urine!!! The other drugs throughout this ordeal I've managed to handle but this Avastin can be very powerful with a lasting effect of following up with cardiologists and nephrologists. For some, it works great with no dreadful side effects. Others beware!!!

Sorry your wife is going through this and I hope positive days lie ahead!!!

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I had my 7th dose of avastin yesterday. The first 4 were alongside carbo/taxol, last three on its own. I have had the back/hip pain, and am reassured that others have too, if that doesn't sound too unkind! Also snotty nose. I was given a cancer research print-out with all the side effects listed. I think the thing is, we never believe they will happen to us. I'm glad to be having it, partly because it means I get to see either a nurse or doctor every three weeks.

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I agree that the side effects of Avastin are often played down. I felt so bad on it that I couldn't face continuing. Chemo was bad enough but only lasted 4 months. The Avastin would have gone on for a year of joint pain, weakness and sinus problems, let alone the risk of fistulas and bowel perforation! I packed it in and started enjoying life again.

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So sorry your wife has had this awful and scary experience with Avastin. I've been having it 3 weekly since last May and have been ok on it except for the joint pains and sometimes hoarse voice. I do worry about staying on it but this is my 3rd line of treatment so on the whole I am grateful for it (so far!) I was aware of the risk of bowel perforation but have not heard of anyone actually having experienced it until now. I really hope your wife is receiving the care she needs and that situation improves.

Best wishes

Madeline x

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Thank you for sharing that. It's very relevant to my own situation at the moment.

I hope your wife feels better very soon.

Debs xx

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What a shame! So sorry, it certainly isn't an easy disease. She is so lucky she was in remission for such a long time. Take care

Carole

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It's hard for me to believe all I've just read about Avastin. I'm about to be a voice in the wilderness. I had Avastin initially along with 6 months of Carbo/Caelyx, with Avastin continuing 3-weekly as maintenance for a total now of 38 infusions (I checked that number last visit). The only side effects I get are runny nose almost every morning for a couple of hours or so and also it raises my blood pressure just a bit, so I need to take 1/2 a tablet per day to keep it in check. That's it. Nothing else. When I joined the avastin trial, I had to sign paperwork that listed all the possible side-effects. It seemed to me at the time that EVERYTHING was listed there - just to cover themselves, I thought. Someone told me it even had "Sudden Death" as a listed side-effect ! For me it's been a wonder drug. I know it won't keep me in remission for ever but it's done a damn good job for me to date.

One thing I learnt recently that I didn't know and that may interest you all. For the avastin trial, I have to have every 3 months, a CT scan and a gated heart scan. I asked if I could be excused the gated heart scan as I always do well in it and I don't like the thought of all the nuke-fluids in my body if it's not really necessary. I was told the drug company (Avastin) needs to have it done because problems from caelyx can still occur even now, 18 months post-caelyx. So they need an idea of whether any problems occuring are caused by avastin or caelyx.

I often read on here problems attributed to avastin and wonder if caelyx may be the culprit e.g. the croaky voice mentioned above. My onc says caelyx affects your vocal chords. As said, it's around 18 months since I had caelyx but I still get a croaky voice. A friend who was on carbo/caelyx (but not avastin) at the same time as me, has the croaky voice too.

Steve, I do hope your wife recovers well from the perforated bowel. And I'm only sorry that avastin hasn't been a success for so many people. Best wishes. Pauline

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Hello, I'm new to this forum, because I want to learn more about the drugs that My Mom (77) should start receiveing in Europe. She has OC for 11 years now, and 3 Chemotherapies so far- Carboplatin, Taxol-Carboplatin, Gemzar-Carboplatin and now after 6 months her cancer spread to lungs (previously only to lymph nodes in abdomen and inguinum), so she is to start with Caelyx- Avastin. She is very positive person, with otherwise very good health condition (for 77 y.o.- down not take any other drugs... all organs are fine), but I am afraind should she receive both caelyx and Avastin, due to her age, or avoidone drug.... Is anybody on this chat of her age?? I've read all your comments, and see severe side effects from Avastin and Caelyx, and now I don't know if she should go with it, or being this age, maybe she should do some less "damaging" therapy maybe the cancer will not grow that fast as she is old....

Any thoughts?

Thank you all very much in advance. i'm desperate to find a way to provide my Mom with as more painless last years of her life as possible...

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