My Ovacome
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Bevacizumab/Avastin. Anyone on this long term?

Hi All, Just joined. Had ppc stage 3c/4 diagnosed Nov 2016. Finished Carbo, Taxol with Bevacizumab May/June 2017. Continued with Bevacizumab and was reviewed last week, number 14. Levels are steady but was told the body needs to rest and recover hence stopping at 18. There was reference to funding also!! Is anyone here on it long term? My fear is that if they stop it my levels will rise then I would have to return to platinum chemo, Carbo/Taxol. Thanks for any help.

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Hi

Yes can totally relate to your fear . I am a few months ahead of you . Diagnosed stage 4 June 2016 . Finished chemo January 2017 and had 18 Avastin last one January 2018 . Clear scan in February and CA125 at 8 but now feeling very vulnerable.

I met someone who was on it for two and a half years and only stopped as her CA125 started to rise . This was before the funding changed . I went to get a second opinion about stopping to the Christie and saw Proff Jayson . He spoke at last years Ovacome day ( think you can still see his talk link on the Ovacome site ) . He felt as I had no evidence of disease I should stop and if / when needed consider using it again after chemo if necessary which we would need to self fund as NHS won’t fund .

Feel very luck I was offered the avastin and it has worked for me , and had a good year in remission as I know many ladies don’t get it at all or have had complications and had to stop . But also feel cheated that our teams are having their hands tied in terms of maintenance treatment due to funding . The problem is there isn’t enough evidence it improves long term survival and also not enough awareness of the struggle many ladies have to access or fund the drug . Makes me cross as am sure if this was a breast cancer drug there would be more pressure for something to be done !

Had what turned out to be a urine infection a couple of weeks ago but sent me into panic mode . Takes a while to adjust from 6 weekly bloods to 3 monthly checks so my next check is not until 10 th May . But very lucky as flying out to Italy for a week tomorrow to celebrate being off treatment. ( Although not sure it’s really something to celebrate! ) That’s the problem with this OC can mess with your head !! Had some counselling and went on a fear of recurrence course through Dimblebycancercare at Guys which helped with providing some strategies and know that worrying about a recurrence won’t do any good and just waste precious time but not always easy to keep it in its box !

Hope the avastin continues to work for you without too many side effects .

Have a good day , sun shining here and the daffodils beautiful.

Love and best wishes Kim x💜

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Hi

I trialled Avastin in 2007/08 and the protocol was to have it for 18 cycles. I had a remission of over 4 years and in fact the hospital were surprised by the fact it came back. Fingers crossed it works as well for you xx

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Hi

Also meant to say welcome to the forum 😀, but sorry you have had to join our club . The ladies on here are amazing and so supportive and there is a wealth of info . Welcome again Kim x 💜

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I can only have it privately. The NHS said I’m not financially viable as Avastin now only for first line not recurrence. When first introduced it was only for 3rd line.

However there is another way to look at it. If you are on continuous treatment when does your body get a chance to rest and rebuild its immunity. The poison will wreck your body too. Chemo along with the other meds are not a cure they’re a medication

I’d have a good chat with your oncologist about your worries

LA xx

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Hi Maybe you can ask dr, about zejula pills, I tolertated them very good, 2 pills a night, also we are now trying keytruda, maybe one of those would be option for you, not as strong as chemo iv.

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Thank you all for replying, you have been so helpful and Kim, everything you have said about getting a second opinion, being cheated, (as it was 'sold' to me as a long term maintenance treatment at one stage) but thankful it has done/doing its work and also the messing of the head I can totally relate to, as also having gone/going through counselling myself. Even with that coming to a close, is messing with my head, lol. Enjoy beautiful Italy and enjoy the warm sunshine. The best medication! The snow is melting here today, thankfully.

Thank you, Katmal-UK, very encouraging to read 4 years remission. Lily-Anne, thinking my body does deserve a break and a time to recover and rosebud12, I will certainly be looking into those 2 meds.

Thank you all for welcoming me into the group. Much love and best wishes xxx

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Hi, I was on Avastin for nearly 3 years (I sneaked in before the Cancer Drugs Fund stopped funding it for recurrence) . I came off it in October due to increasing side effects and slowly rising Ca125 which indicated that it has lost its efficacy.

Hope is works as well for you.

Sandra xx

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Hi and welcome. Just to say a few of us are having a meet up in Worcester next Wednesday lunch time 28th march I don't know where you live but it would be lovely if you could come. Let me know.

Lots of support on here.

Anthea

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Anthea, good to meet you. I'm based in the South West. Unfortunately cannot make the 28th but would love to catch up on your next get together. Thank you all for the support. It's much needed. xx

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