Looking for advice as to whether Avastin is the right option for my mum

[Pitchperfec]

Hi there, my mum was diagnosed with stage 4 HGS OC following debulking surgery in December 21. She is BRCA negative and has just completed 6 rounds of chemo and her last scan showed no evidence of disease and her CA125 was within the normal range. Following an appointment with her oncologist today she was told that Avastin was possibly an option and she has to make the decision whether to try it. As mums scans showed NED and CA125 is within normal range can anyone advise if Avastin is the best option. Prior to surgery she had fluid drained from around her lungs which was tested for cancer cells and at the time she was told the results were clear. However today her oncologist said that although the test didn’t show cancer cells it was inconclusive and this is the reason she may be eligible for Avastin. We don’t know what to do for the best, mum was looking forward to getting on with her life and the thought of more treatment so soon after chemo has really got her down. Any advice would be welcome and thank you for taking the time to read my post xx

[27-359]

I had Avastin and would jump at it if offered again. I was stage 3 and feel that it gave me a good few years before recurrence.

Jenny

[Pitchperfec in reply to 27-359]

Thank you Jenny, it’s really helpful to hear everyone’s experiences and advice, I’ve read all the replies to my mum and it’s really helped with her decision to have the Avastin.

[Katmal-UK]

Hi. I can’t tell you or your mum what to do but can advise I trialled Avastin in 2007/2008. I had Avastin infusion every 3 weeks with standard chemo then continued to have an infusion every 3 weeks until a year was completed. I would have the infusion then go to work the next day. I continued to work full time and life was normal. The side effects I had were some joint pain and what I can only describe as a ‘snotty’ nose, where each morning it would take me several tissues to clear my nose. I also had occasional nose bleeds. Once the year was completed it took around another 3 months for the side effects to go. Am I glad I trialled Avastin, yes. Would I take it again (assuming that’s even an option), yes. I achieved a complete remission of nearly 4.5 years. Best wishes on your Mums decision which needs to be right for her. Kathy xx

[Pitchperfec in reply to Katmal-UK]

Thank you for taking the time to reply Kathy your post has really helped my mum with her decision to have the Avastin. Reading everyone’s comments on this forum over the last 6 months has really helped me come to terms with my mums diagnosis and I feel so much more informed. Ashleigh x

[JayGeeCee]

I had Avastin added to my last 2 infusions of chemo and continued with Avastin every three weeks for a further 9 months when I asked it to be stopped as my last 2 scans showed NED and like your mum I just wanted life to return to normal.3 years on I’m still NED and coming up to 5 years post diagnosis at stage 4b.

I would definitely have it again if it was needed.

Good luck and I’ll keep everything crossed for your mum.

Joy x

[Pitchperfec in reply to JayGeeCee]

Thank you for taking the time to reply Joy, i really appreciate it and it’s really helped with my mums decision to have the Avastin. Ashleigh x

[Loorunner]

I was NED after my surgery and 6th scan in April and am now on Avastin with Olaporib. I am working, going away for weekends and whilst I get tired more easily getting on with life. I am taking it to give me a better chance of longer cancer free time.

[Pitchperfec in reply to Loorunner]

Thank you for sharing your experience I’m really grateful. I’ve relayed everyone’s comments back to my mum and it’s really helped.

[Carpediem68 in reply to Loorunner]

Hi Loorunner. Do you mind if I ask if you have had any problems with white blood cell counts taking both drugs together? I'm on Avastin and Olaparib and my white blood cells keep crashing. They say it's the Olaparib rather than the Avastin. Hopefully I just need a lower dose.

[Loorunner in reply to Carpediem68]

Hi. So far I've been OK (I've had 2 lots of Avastin with Olaporib so far, 3rd lot this week). I have heard people have lowered the dose and its still been very effective. This week I've experienced some dizziness which I think is an Olaporib side effect, and I've occasionally felt naseous (despite taking anti-sickness twice a day). Really hope it can be sorted out for you. sending very best wishes

[Carpediem68 in reply to Loorunner]

Hi there. So glad it is working for you! Thanks very much x

[Morini]

I get where your Mum is coming from and my presentation sounds really similar to hers. I have gone onto Avastin and I am finding it so very much easier than chemo. It's now done over 30 minutes, no pre meds so takes little time out of my life. My side effects are minimal and my life is returning to something like normal. I went to a talk by Ovacome yesterday which explained how it works and it made me feel glad I am on it. Maybe she could try it and see how it is, if she finds it affects her quality of life too much she can always stop? Also she may be able to take part in the Valtive study which measures other markers and is trying to increase the availability of Avastin on NHS. Best wishes to youand your Mum xx

[Pitchperfec in reply to Morini]

Thank you for taking the time to reply I’m really grateful to you for sharing your experience. Reiterating to her that she can give it a try and stop if it if needed has helped make her to decision to give it a go. Xx

[SUE7777]

Although we are all different regarding side effects Avastin tends to be much easier to tolerate than chemo. I was on Avastin for 15 months and found it easy. Hope this helps, good luck to your Mum Sue xx

[Pitchperfec in reply to SUE7777]

Thank you Sue I’m really grateful to you for taking the time to reply and it’s really helped with my mums decision to have the Avastin. Xx

[Lizzieanne]

Wondered what criteria you had to meet to be given Avastin.

[Katmal-UK in reply to Lizzieanne]

Hi, I may be wrong but I believe it’s given for stage 3 and 4, I could be wrong ….

[Pitchperfec in reply to Lizzieanne]

I’m not really sure to be honest but in my mums case I believe it was due to the inconclusive results of the fluid tested around her lungs which means cancer cells could possibly be present. I think there has to still be some evidence of cancer at the end of chemo. My mums scan showed NED but there was a question mark around the fluid results.

[Summergold2]

That is wonderful news! And great to hear she is doing wel. Yes she should jump at the chance as being braca neg there are not a lot of options but most importantly the longer you can keep from reoccurring the better and I believe less chance of platinum resistance

[Pitchperfec in reply to Summergold2]

Thank you, I really appreciate your advice and my mum feels so much better about her decision to take Avastin having listened to everyone’s comments xx

[RoseMS]

Hello there. Avastin is usually given alongside the last 2 or so chemos, did you mum have this? Also, was she tested for BRCA, blood test and tumour test? They are now giving a PARP (oral tablet) alongside Avastin for maintenance now, has this not been suggested for your mum? I do believe either way, maintenance (avastin with or without PARP) is the way to go. Good luck.

[Pitchperfec in reply to RoseMS]

Hi, no, she finished her 6th round of chemo 4 weeks ago, she tested negative for BRCA both blood and tumour so PARP was not an option. She had a call yesterday and her first Avastin infusion is booked for the 27th June. Thanks for the reassurance that maintenance is the way to go. Xx

[RoseMS in reply to Pitchperfec]

My best friend had 18 post chemo infusions of Avastin only; she is 6+yrs now of NED! I’m on a PARP, 2 years post chemo, and so far so good. So yes, good to hear you mum is doing maintenance. Which hospital is she having treatment by the way? All best wishes to both of you.

[Pitchperfec in reply to RoseMS]

It’s really good to hear the positive outcomes, praying it works for my mum too. She is being treated at Dorchester hospital. Xx

[suzannebirch]

I am coming to the end of my Avastin. No side effects at all in the year I have been taking it. Also on Olaparib so not sure which is keeping me stable but based on the fact it was merely an inconvenience having it administered every 3 weeks for a year I'd say its a yes. Good luck