Bad Avastin reaction

[truewordweaver]

Hello all. I was diagnosed with OC back at the end of Feb, after a cyst burst. At the time the emergency hysterectomy showed it was 'contained' and they staged it as 1C, but of course the fluid meant cells went winging around my abdominal cavity, and because it's an 'unknown primary' - apparently undifferentiated and very primitive in type, according to 4 pathology reports - it hasn't exactly played by the rules. I've been on carbo/taxol since May 4 with good results so far, but when my onco. added in Avastin, it walloped me: massive nosebleeds, legs heavy and weak, raised heartbeat, watery eyes, pain in the stomach/abdomen/rectum, tinnitis that went through the roof, crushing fatigue ... you name it, I had it, including neuropathy in my fingers. Thankfully onco. agreed to 'set the Avastin aside' for the minute, so I'm back on the usual 2-drug combo, but I was wondering: has anyone else had such a bad reaction to Avastin? I keep being told I'm 'exquisitely sensitive' - can't even tolerate bandages, so finally got a portacath implanted - but I'd love to know what everyone else has gone through with Avastin, and whether you've been put on another maintenance type drug as a result of reactions. Wishing you all health, TW.

[rossnbren]

Hi TW..Yes I too had Avastin but stopped because it didn’t work for me.. my blood pressure went through the roof, tinnitus, massive pain and stiffness in joints and muscles throughout my body, blood and high level of protein in my urine, I am now back on Cissplatin and Caelyx, which if it works can then have Caelyx as a maintenance... all the best XX

[SUE7777]

Hi, I've had problems with Avastin pretty much what you mentioned. I read chest infections were part of the deal and I had one which turned out to be pneumonia and pluerisy which hospitalised me. Well I'm still on it because I'm more afraid of the disease and the side effects have got better now I've dropped the chemo (due to finishing that treatment). Last session was painful but I'm finding this one better. This probably doesn't help and I'm sorry if that's true. Wishing you all the best. Sue xx

[truewordweaver in reply to SUE7777]

That does help, Sue - thank you. My onco. has said we might try it again when the chemo stops, so your experience makes me feel a little less apprehensive about that. Wishing you well, TW.

[SUE7777 in reply to truewordweaver]

I'm glad I could help and I hope everything goes well for you. Sue

[Dog-lover-forever]

Hi - I had Avastin added to my 5th chemo in Feb 2019 and finished 18 cycles of Avastin in Feb this year. I had a range of side effects from

Avastin. My main problems were joint pain and stiffness - this was very bad and I struggled getting out of bed in the morning or if I’d been sitting for a while (I’m 38). I also felt completely exhausted and fatigued for the first week, I would also need to rest after any social activity or after doing anything. It also added to my neuropathy. I kept going because I was stage 3 with widespread disease and couldn’t have more surgery. It’s now been 6 months since my last treatment and most of the side effects have lessoned or gone but I still have neuropathy and feel fatigued after doing too much. I hope you can get help and support with your treatment plan. Also don’t feel like you are not good at handling pain - I sometimes feel medical professionals describe how a drug should feel that they’ve never taken themselves. Sending lots of support and well wishes xx

[truewordweaver in reply to Dog-lover-forever]

Thanks, DLF - from one dog-lover to another, I hope it all goes well for you, too!

[Tulips66]

Hi, I was diagnosed in Jan 2019 stage 3c high grade & was the same combination of carbo/taxol with Avastin. After having complications after my first infusion where I needed more surgery my oncologist stopped the Avastin for a few months as I don't think Avastin helps withhealing. I then started back on the Avastin on its own when I finished with my chemo. I am now on my 21st infusion which I get every 3 weeks. In the beginning I had nosebleeds & neuropathy but now I do get a little stiff when getting up after sleeping or sitting & sometimes my heels are sore. Once I start to move around the stiffness goes. I also get headaches sometimes but the neuropathy & nosebleeds are gone now. I don't mind putting up with the stiffness & sore joints as it's a small price to pay once it keeps the cancer away. Hopefully your symptoms will ease as your body adjusts to the Avastin but make sure you let your nurses know about how it's affecting you because it just might not suit everyone. I am sure they can recommend something else. Hope you get sorted & feel better soon Xx 🌸