Avastin query : Hi there, I have stage 3c high... - My Ovacome

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Avastin query

Helvelyn profile image

Hi there,

I have stage 3c high grade epithelial. Had surgery 7 weeks ago debulking.

Due to start chemotherapy on Friday.

Have been positive up to now.

My Oncologist said I will then start Avastin but the side effects look so bad and so I’m wondering whether it’s even worth having it . Maybe it’s just better to enjoy a few months symptom free and taking my chance.

How do others feel?

Julie xx

37 Replies

Hi there I went through the same dilemma.I decided against the Avastin after frontline chemo as I wanted my body to recover from it and allow my blood counts to return to normal

etc.I didn’t want to go straight into taking more drugs with more side effects.My oncologist told me that it can extend time before a reoccurrence by an average of 4 mths.I chose to go a more alternative route.

Helvelyn profile image
Helvelyn in reply to Lovedogs41

Thank you for replying. So hard to know what to do for the best xxx

Lovedogs41 profile image
Lovedogs41 in reply to Helvelyn

I was exactly the same! Go with your gut instinct would be my advice xx

I had Avastin after first line chemo and I also thought about going without. It was like gold dust back then, so in the end I was grateful to be offered it ( via cancer drugs fund). I would say that the side effects were minimal but annoying. I had nosebleeds and thin skin. But I managed 16 out of 18. On balance I would go for it but it has to be your decision xx

Helvelyn profile image
Helvelyn in reply to Lyndy

Thank you Lyndy for replying. So glad I found this forum. It’s so helpful hearing from people who have been through this.

Hi I had Avastin after my chemo and had all 18 cycles only side effect was slight raise in blood pressure I worked as a nurse all the way through it so you could be one of the lucky ones with no side effects. I would definitely have it again if I had the chance but it must be your decision. Good luck and big hugs Liz xx

Helvelyn profile image
Helvelyn in reply to koza21

It’s good to hear that you still worked as a nurse whilst taking it. I am a nurse too and would love to think I could return but my Oncologist didn’t seem very hopeful when I discussed it with her.

Hi, I started avastin with chemo 5 and 6 and continued and have felt great in general. Did suffer with some neck stiffness, and took some meds to counteract that and thought it was worth it.

Taking the avastin is very different to the chemo, (thank goodness!) need to have your bloods, BP and urine checked but overall for me, a good move and the scans so far have been good. You do what is right for you xx

Helvelyn profile image
Helvelyn in reply to Slipper1

Thank you 🙏. Makes me more reassured about having it xxx

I had Avastin alongside frontline. No side effects apart from blood when I blew my nose and one nosebleed which stopped after 3 minutes. Everyone reacts differently, but it's nothing like chemo. I've read on forums of women who haven't recurred during 18 months of avastin maintenance. Do remember that statistics are based on overall averages, and dont apply to individuals.

Helvelyn profile image
Helvelyn in reply to Saffery1

Yes you’re right…I keep telling myself that statistics are just general and not individual xx

AusTig profile image
AusTig in reply to Saffery1

I am interested to hear about the nose bleeds. It is always reassuring to hear someone who has similar side effects.

Saffery1 profile image
Saffery1 in reply to AusTig

Always had runny nose (lack of nose hairs I believe) and when blowing there was always blood - had a ready supply of Kleenex balsam tissues around the house 😂. As I say, only one proper nose bleed so just followed google instructions and tipped my head back while pinching my nose and it stopped. Tried not to blow my nose for the rest of the day. It's meant to be a common side effect of Avastin so expect lots of ladies on here have dealt with more severe cases?

Cher96 profile image
Cher96 in reply to Saffery1

I just ordered a case of Kleenex🤣my nose hasn’t stopped running and my hair is growing back like down. 🐥

Hi Julie I was exactly the same as you , once I restarted chemo I resumed Avastin then when I had done the 6 rounds of chemo carried on with just Avastin , I had it for 5 rounds alone until I stopped as a scan showed I now gave 4 cancerous lymph nodes across my stomach . Avastin did nothing for me but I will say side effects are nothing or they certainly weren’t in my case , I really have nothing to say about it , I also carried on working non stop in those 5 months . Personally I’d say I suffered far worse from carbo / taxil combo which I assume your on now and I suffer far more now on carbo / gemzar even tho once again I don’t have half as many symptoms on the later . Hope this as eased your worries

Helvelyn profile image
Helvelyn in reply to Tj511

Thank you so much for replying and Im sorry that Avastin didn’t work for you.. Die to start carbo/taxil on Friday so will find out soon what I’ll be like. 🤮😊

Leniko profile image
Leniko in reply to Helvelyn

Carbo taxol can cause joint pain. I made hot stone massage a special treat- felt so good!

I had avastin and from memory had one or two nose bleeds.I do remember listening to the Dr run through the possible side effects and wondering if I should proceed with the avastin though.

Looking back now I'm glad I had all the treatment that was available to me.

Whatever you decide I hope the treatment goes really smoothly for you.

All the very best.

Liz x

Helvelyn profile image
Helvelyn in reply to Jacky5

Thank you Liz. I’m feeling much more positive about taking it now xx

I've had Avastin twice. 24 rounds with and after front line on first DX and then again alongside weekly taxol for third line treatment. It was a total breeze, just a few nosebleeds and some temporary joint stiffness which was resolved with Naproxen. I only had access to it at the time (just three years ago) as I have private medical insurance. The fact that it is now available on the NHS speaks volumes for it being effective and worthwhile. Go for it!! You can always pack it in if you decide it's not for you x

Helvelyn profile image
Helvelyn in reply to Gemmyw

Thank you Gemayel xxx

Cher96 profile image
Cher96 in reply to Gemmyw

I’m on Avastin now too ( #4 coming up). This is very encouraging thanks

Hi, I was on Avastin for over 5 years I’m not sure I would be here without it, I had high blood pressure but just took tablets for that and had nose issues, and joint pain but I also carried on working throughout. Had to come off it because of my kidneys and the tumour came back within 4 months of coming off it. I’d go straight back on it if I was allowed.Chele

Thank you for replying. I’m so sorry that you had to stop and so sorry that the tumour came back so quickly. Will you be given more chemotherapy? It’s such an awful disease. 💜

Hi I am presently on Avastin which I started during my last 2 chemos. I have had one dose (3rd) by itself and will be having next dose on Friday. I get it as an infusion every 3 weeks. So far no side effects. Doc checks my blood and pressure. It is a monoclonal antibody and angiogenesis inhibitors which is also a maintenance drug. I hope it works to keep this alien inside me at bay. I am interested in alternatives too. Any info on that front will be greatly appreciated. There are many drugs out there for stage 3c so if this doesn’t work we can try others. Many women have no side effects.

Dear Helvelyn-I am so sorry you have to go through this. I’ve been on Avastin infusions for a few years. It keeps my CA 125 low and keeps my inoperable tumor from growing. Don’t believe all the side effects you read, I’ve had very few. A running nose and bleeding gums come to mind. Wishing you all good things. 🙏

Hi, I had Avastin/Bevacizumab with front line Chemo session 4, 5, and 6. I then had a planned 8 week break and went back on to Bevacizumab every three weeks, and Olaparib (600mg daily). My Oncologist is very forward thinking Ang was able to prescribe two together, which I don’t think is common as far as I have heard.

Now, here’s the tricky part. I have a lot of joint pain. A lot. No-one can tell me if it is down to the Olaparib or the Bevacizumab - but both *can* cause joint pain. I’m affected by this issue every day, and it does limit my ability to do some things - lifting and reaching for things, taking stairs, walking distances, etc. The odds are on it being the Olaparib causing the issue as it is consistent throughout the 3-week cycle. I suspect that if it were the Bevacizumab, it would be worse in the days after infusion and gradually improve, but that’s not the case.

My partner and I have talked about me stopping one or the other to see if the situation improves, but it can take a couple of months for things to get better and knowing my luck, I’d choose to stop the wrong med! So for now, we’re ploughing on with both, knowing that I am doing all that I can to delay a recurrence.

I don’t have any of the other side effects that can occur with Bevacizumab - my blood pressure and kidney function remain normal and I haven’t had any nose bleeds or bruising like others have sometimes reported.

I hope this hasn’t been too negative a post - but that this helps you to get a sense of the bigger picture alongside the other replies you’ve had.

Best wishes, whatever your decision.

Annie x

Itha profile image
Itha in reply to testarossa71

Hi, I am also on both treatments and am experiencing exactly the same side effects as you. The stiffness in my joints are immobilising and not fun at all. I did have the joint stiffness with Avastin only and it is getting worse. It might be because of the Olaparib? But so far I am in remission (last chemo was May 2021). I am stage 4B OC. My CA125 is very stable and very low, thus I count my blessings

Hi, Had the same diagnosis 3 years ago & took up all offers. Coped well with some & not so well wwith others. Stabilised now but for how long? Has returned twice but have terrrific Oncologists/nurses & guided by them.It’s an individuals choice, I thought not only of myself but the impact on loved ones. The decision is yours? Thinking * of you & sending you strength & positivity, Cheers Iside X

Next week I will have my 14th Avastin infusion and I've become a believer! I had it first in combination with carboplatin and docetaxel for 5 treatments ending May 20th. Then I continued on Avastin alone every 3 weeks since then. I was intimidated by the list of Avastin side effects until I realized that the study I was reviewing had been for Avastin in combination with other chemo drugs -- not Avastin alone! So the worst of the side effects were likely from the traditional chemo drugs being given with the Avastin. My experience has borne this out. With Avastin alone I have had a stuffy nose and occasional nosebleed and some joint and muscle pain. Also occasional hoarseness. And I DO have to watch my blood pressure but medication has kept it under control. On the plus side my CA 125 test every three weeks has been in single digits (!) and my last set of scans in June looked very good. I believe this stuff is working for me -- my original diagnosis was Stage 3 High Grade Serous Carcinoma in June, 2019. I was treated with chemo (that did not include Avastin) and surgery. I had a recurrence in January 2021 and began the chemo that included Avastin. I hope you'll feel comfortable giving Avastin a try! These targeted biological treatments like Avastin are the future of cancer therapy. Good luck and stay hopeful!

Helvelyn profile image
Helvelyn in reply to Why4300

Thank you for sharing. I will give it a try.My friend had ovarian cancer stage 3c and had debulking and chemotherapy and no maintenance and she is NED for almost 6 years. I think she must be the exception rather than the rule though by the sounds of things xx

HiI had 13 sesdiions of Avastin for 3c oc with and following first chemo carbo/ taxol and surgery. I had quite significant joint pain but did yoga, Epson salt bath, massages. Recurrence quite quick after about 8 months but I will of course never know if it would have been 4 without Avastin. For me I would take the side effects for the extra 4 months. It could of course be much longer and can always be stopped. I think you've decided to go for it so really hoping it keeps anything nasty at bay . Sending love, Sara x

I was diagnosed with the same and same grade 3c. Dec 2019 Started carbo taxol jan 15 2020 then added Avastin on the second session of chemo and continued until may 2021.Everybody is different the only side affects I experienced was joint pain and some tiredness the day of infusion. I reoccurred in May of 2021. Chemo was much more difficult than the Avastin and if it gave me a few more months off second line chemo great. Tough decision to make only you can decide. Good Luck and fight hard!

Hello from the U.S. I had my 3rd recurrence of my Stage3b in March of 2020. I went on a chemo regimen of carboplatin, gemcitabine and Avastin until August. At that time my doctor kept me on the Avastin every 3 weeks. It has now been a year and my CT Scans show NO incidence of cancer. I plan to stay on it as long as I can, as long as it is keeping my cancer away. I have very few minor side effects from the Avastin. My blood pressure increased (while on chemo/Avastin combination) so she doubled my blood pressure meds from 5mg to 10mg and it's holding steady. I do have a runny nose and a few minor aches periodically but nothing serious. So, from my experience, I heartily recommend it!

Thank you 🙏. Glad that you are doing well xx

Thank you everyone who replied to my Avastin query. Helped getting it all straight in my head. Let’s see what the future holds. Hopes everyone keeps strong and well xxx

Hi - I had 18 cycles of Avastin but found it okay - I was achy and tired sometimes but none of the horrendous side effects we are all warned about. Carried on working and generally living a normal life (with naps). Good luck in whatever you choose to do!x

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