Hi , I have 1 more session of taxol/carbo left and my oncologist wants to discuss going onto avastin however, I'm not sure whether that is needed at this stage. I have ovarian 4b and have been debunked. My ca125 levels were 7 before the last chemo 3 weeks ago. I feel very fit and healthy.I've not had a ct scan since surgery.
I need to decide, should I just monitor with bloods or start taking avastin now?
Is anyone else using avastin and when did you start?
Hi Bendywendy1, congratulations on getting through your chemo and debulking…and getting a great low ca125 into the bargain!
I completely understand that it feels counterintuitive to land yourself with further treatment at this stage. However, for us stage 4 patients, it’s not just getting rid it’s keeping it away that’s important.
Avastin is a maintenance drug designed to stop new tumours forming by denying them a blood supply. It isn’t like chemo, you should feel ok and much more like your normal self on this drug.
I had it in 2016 through the drugs fund and I have realised since that maintenance treatments are very important to stave off chemo and to give you good quality of life through this journey.
I would suggest you consider it very carefully xx
Lyndy, you always offer such sound advice ❤️ I hope you are doing well. xx
Thank you very much that's very useful information and great to know that you are doing well on it.Do you need to take it every 3 weeks intravenously? If so how long does it take to put avastin into your body?
It’s a short infusion, from memory about 90 minutes. Much easier than chemo xx
The first one will probably be 60-90 mins as they check to see whether you'll have a reaction to it. Then all being well, the time will be reduced again. Mine takes 30 mins now and is done IV every 3 weeks.
Hi 👋 good morning,I'm also stage 4b, had interval debulking nhs and private operation with Prof Fotopoulou 😇she's my angel! Anyway after my operation I had the same choice with my nhs oncologist, I emailed the professor who told me to take the avastin and as I was hrd + to get the olaparib too and to attack the remainder of the cancer head on! I trust her judgement as she is the expert in the field in this country. I'm Brca negative and still clear ca 125 6 had debulking last September and had avastin added to last chemo end of November last year. Good luck 🦋
Snap!! I always say Prof F is my Angel 😇 isn't she a wonderful human being 🙏🏼 I'm also HRD positive. Hope you continue to do well. x
Thankyou
I think I needed to start Avastin after interval debulking and with my final chemo to be eligible?
Once I was on Avastin by itself my side effects were far less, mainly achey joints especially on getting out of bed (but not so bad that I couldn"t go horse riding). I was grade 4a and no re-currence possibly thanks to Avastin, though I can't prove that.
Thankyou for your message
I had Avastin and got to 4 1/2 years NED. I’m on my first recurrence now but feel very lucky as most ladies have it about 2 years. Avastin is a good drug used for many cancers. Hope you make the right decision for you xx
Good luck with overcoming the reassurance and thankyou for replying to my message.
Hi Bendywendy1,
Congratulations on getting this far with a wonderful CA125 number!
I really echo what the other lovely ladies have said. I too was diagnosed Stage 4b last year, I had successful primary surgery and then 6 rounds of Carbo/Taxol with Avastin and I'm now continuing Avastin with Olaparib as my maintenance.
I was advised it's best to throw everything including the kitchen sink at the Cancer at the start! This is to hopefully give my body a long break from it returning 🤞🏼
I know some ladies have suffered side effects with Avastin but for me it has been much easier than the chemo itself (the only thing I get is ankle pain) but I'm doing lots of walking and have now starting strength training again and I feel great.
I'm stopping the Avastin next month, the 3 weekly blood tests and infusions although slightly annoying, I will take it all if it helps.
It's definitely worth considering, although of course entirely up to you. May be worth speaking to your Nurse or the Ovacome support line?
Best of Luck. xx
Thank you for sharing your experience.
Hi Halo2014,
I just joined this wonderful site and reading through…I was diagnosed last year with stage 4b and given only carbo taxol with surgery and niraparib as a maintenance and this year it has returned. So Dr is offering carbo/caelyx with avastin. Then either avastin or MIRV as maintenance. I will be starting this combo soon in 2 weeks.
Did Dr offer u carbo/taxol with avastin and then continuing with avastin / olaparib as maintenance when you were first diagnosed?
Is the maintenance a pill form? How long are u or were u on the maintenance. Did you lose hair on maintenance? And were there any bad side effects on the maintenance?
Peg
Hi Peg,
Sorry to read that you're dealing with a recurrence 🙏🏼
I was on Avastin and Olaparib (which is a Parp Inhibitor like Niraparib). I had this as maintenance after first line treatment because I was HRD positive. I finished Avastin in November 23 and Olaparib in Aug this year. I didn't lose any hair but it did feel like my hair didn't grow back as quickly as I expected.
With Avastin it gave me sore ankles, I think it's common to get some joint pain. Towards the end my blood pressure was rising but didn't need any meds and now I'm off its back to normal.
I generally felt well and was able to lead a normal life.
I've no experience with Mirvetuximab but think this may also be given via IV like Avastin.
Wishing you successful treatment 🙏🏼 xx
Thank you Halo2014 I appreciate your input on this.
Hi. What about a PARP inhibitor? That is your best insurance against recurring. The combination of Olaparib and Avastin would be the best. Although everyone is different you have a 90% chance of recurrence if you don’t do maintenance. I’m stage 3b and recurred after eight months. Then I went on Olaparib for three years and am still ned after six months on nothing.
Thank you that's really interesting and hope you continue as you have for the last 3 years.
Thank you, that's very encouraging.
Delia2, may I ask why you were taken off olaparib after 3 successful years? I was taken off recently too after 3.5 years bc blood counts were worrisome and onc was afraid I was getting leukemia as a side effect 😞 Still not definitive but I'm sad to be off it.
I was supposed to be on it indefinitely but I think the concern was MDS/leukemia and they believe the drug has done it’s work based on what they’ve seen of those taking it for two years after frontline. I’m quite nervous about it!
I was taken off for the same reason! I'm now going on 6 weeks off it an very nervous too. CA-125 is going up one point at a time every blood test which isn't the end of the world, but it didn't do that before 
I hate to say it though, I actually feel so much better off it physically (not mentally). Less joint and muscle aches and pains which I know came from Olaparib. Just can't have it all, can we?
Exactly. I feel so much better off the Olaparib but have more anxiety.
I used Avastin for many years to keep my recurrent OVCA cancer at bay, with minimal Side effects. It worked very well for me , for a long time, keeping my CA 125 low. It works on a cellular level and starves new cancer cells. Unfortunately, as with many of these monoclonal antibodies, after a time, it became less effective.
But it did keep the growth of the tumor on my psoas muscle on my back (diagnosed also as OVCA that migrated), under control. Hope this helps.
Thankyou. Hope you are finding other solutions now.
I would do what doc recommends avastin can give you longer time between occurrences and every three weeks is little price to pay as this disease is devastating and aggressive in some didn’t do me much good but others have had good results
Sorry to hear that. Thankyou for replying.
I took avastin for a year after 6 chemos and debulking. Kept C at bay since then constant chemo (6years)
Thank you for telling me your experience.
I’d do it. Few side effects and blocks blood flow to cancer cells.
carbo/gem
Avastin
Avastin decision
