Is Avastin actually worth the terrible side effects?

[Ella1717]

I’m on 4 of 6 first line chemo for stage 3b/4a HG OC. My doc offered me the option of starting Avastin before the last one & I did (15 months). Since then I’ve had terrible bowel probs (I had a stoma reversal before my 3rd chemo) & really awful aches in legs, bum & feet. I can’t clear bowels properly & have to take stool softener to go at all (my diet has lots of fibre , so it’s not that). The pain in my rectal area radiates all down my legs & makes me miserable. The question is, am I going through a lot of physical pain for no good reason?

I’ve read a lot about Avastin & it getting banned in the US due to its lack of efficacy in breast cancer treatment. It seems to provide very little benefit at a big physical cost. Women rave about how its extended their lives by years, etc but OC & Avastin studies state that it only extends cancer free life by a couple of months at best & doesn’t actually extend life at all. These women may been NED for a similar length of time without Avastin.

Also im not sure why it’s been given to me when my first line chemo is working.

I’d really like to stop because I don’t want to suffer for 15 months for 2-3 extra cancer free months. I’d prefer to only take Avastin if I really have to.

Has anyone here with stage 4 OC gone into a decent remission period after first line chemo without maintainence therapy?

[Lyndy]

This is a complex subject Ella1717. I experienced the type of side effects you describe during first line but my Avastin was only added to my sixth cycle... so those effects were due to the cumulative effect of chemo.. not Avastin. I had 16 further Avastins and then almost 5 years without recurrence. Did Avastin provide that outcome? I’ve no idea 🤷‍♂️ Generally I found Avastin alone very tolerable but I get why you are asking. It seems that, like many OC meds.. if it works for you, it works well (don’t forget that overall figure is a mix of all treatments attempted... not your results on Avastin which could be much better than average).

I took the view that I might as well put myself in the way of a good result as long as the side effects were ok. You could try it on it’s own and then decide whether to keep going? Talk to your team about your misgivings... and about those nasty side effects to see if they can sort them out. Best of luck xx

[RainbowC]

I’ve nearly finished my year of three-weekly Avastin after the initial six rounds of Carbo and Taxol (actually round 5 was only whichever of those is the quicker one - Carbo?), with the Avastin added in from round 4. I do have achy feet and ankles, and earlier on had achy hands a lot although they’ve been much better for the last few months. For me (Stage IV), the side effects haven’t made me regret the treatment at all, and I think I’d be far more regretful if I hadn’t had it. Yes I know the likelihood of recurrence in the next year or two is terrifyingly high, but I feel like I’m doing what I can to put it off without sacrificing quality of life.

When I had Avastin with the other chemo drugs it made me hoarse for about a week, but on its own that hasn’t happened at all!

And hot baths seem to help with the achy feet.

[Ruebacelle]

I had a year remission after lst line carbo taxol which allowed my body and functions recuperative time avastin by itself lst line carbo taxol was successful

[Neona]

I don’t know much about this treatment as I have never qualified for it. However I do have a stoma and am astonished that you were recommended to have a reversal in ths middle of chemo. I was told no way even though NED after my operation. Chemo affects healing and my guess is that your problems are due to the stoma reversal rather than the Avastin. My dog attacked me when I was on chemo and I had 2 operations under GA to clean the wounds. Chemo was stopped until it healed. This is just my thoughts and I think it may be worth asking oncologist and surgeon about this and maybe delaying treatment for a few weeks. I believe you can also get adhesions from stoma reversal but not sure whether this is much later or early on.

[delia2]

Hi. My onc really wanted me to have Avastin with frontline but I refused because I wanted that time after chemo to recuperate. I didn’t think then that the trade off was worth it. However I have read that in people without optimal debulking Avastin makes a bigger difference in progression free survival. For me quality of life is really important. Good luck!

[Mjb49]

Hi Ella

Every one is different as you know, I found Avastin very tolerable I was on the icon 8B trial which was weekly taxol/carbo and avastin this was very tough, chemo started September 2015 until February 2016 I then continued on Avastin only until December 2016 , if I could of I would of liked to have stayed on Avastin as I found the side effects minimal.

Anyway I had clear scans until January 2018 which I believe was down to the Avastin keeping the cancer at bay.

Whatever you decide to do I wish you best wishes good luck Maggie

[Ella1717]

Thanks for your responses ladies. Docs fine with me stopping but want to replace it with Niraparib which has better results but even worse side effects. It seems constipation, insomnia nausea & exhaustion are par for the course. I’m really starting to think a longer NED life isn’t worth it at these costs & it makes me wonder how anyone gets through it at all, except as a last resort. I still think I may be better of steering clear of maintenance therapy until the cancer returns.