Bevacizumab (Avastin) availability in Wales - your comments needed

[OvacomeSupport]

Hello All

We've been contacted by All Wales Therapeutics and Toxicology Centre (AWTTC), who are involved in considering treatment availability in Wales. They are currently involved in the process of reviewing bevacizumab for advanced epithelial ovarian, fallopian tube, or primary peritoneal cancer.

We are asked to submit comments from the patient perspective, to add to the information on clinical effectiveness and cost-effectiveness which will already be submitted.

If you have any comments or experiences you would be willing to share to inform our submission please leave a comment below or email me at [e-mail] . You don't need to be living in Wales to contribute your comments.

I won't include any names or identifiable details. Please do get in touch if you have any queries.

Best wishes

Anna

Ovacome Support Service Manager

[Annr5h]

I was on Bevacizumab and had 18 rounds. I was on the ICON trial. I wish I could of had it for longer as it kept my cancer away. Hope England get more funding so that the teal ladies can have a longer life.

[27-359]

I had eighteen sessions of Avastin, finishing in August 2017. I had OC 3b and am pleased to say that I am still NED.

Jenny

[Hidden]

Hi Anna. I've just responded to Jenny's "Any good news about avastin" above. You're welcome to use that if it helps. Diagnosed 3C in Nov 2011. 1 x recurrence. Age 73. BRCA neg.

Also, a friend who goes to the same OC Support group as me and has been on avastin for around 3 years, is just as pleased with it as I am. She had a few small new growths showing on a PET scan just before Xmas. She says the avastin has wiped out all except one of them. I didn't know avastin could do that - I thought it was only a maintenance drug. Good luck to Wales. Pauline.

[Chele21]

I live in Wales and when I had a recurrence they were going to give me the same chemo drugs as before. My husband had just died so living alone, I moved in with my daughter in Manchester for treatment at the Christies who put me on chemo and Avastin. After chemo I moved back to my home in Wales where I travel every three weeks to the Christie for Avastin, I’m still on it after 5 years and 3 months, that’s 90 infusions. I’ve just had a scan and for the first time one of my tumours has reduced, they seemed surprised too.

Michele

[LittleSan in reply to Chele21]

Wow! That's good going! Long may it continue. 💐

[LittleSan]

I was on Avastin for 3 years and staved off chemo for a further 10 months. Excess mucous was my biggest problem which exacerbated my asthma. Iafter 2 years I also became hypertensive which was fully controlled with meds. At the same time I started with joint pain which was managed with OTC painkillers. I had dysphonia also. All symptoms resolved over the course of a few months once I came off Avastin. I am very grateful for the opportunity to have Avastin despite the side effects.

[OvacomeSupport Partner My Ovacome Team]

Dear All

Thank you very much for this feedback. All your comments are really helpful and will make the submission so much stronger. I really appreciate the time you've taken to let us know your experiences.

Best wishes

Anna

[transf2856]

Hi I had the 18 cycles of Avastin and continued working as a nurse in a busy operating theatre. I felt a bit stiff if I sat down for too long and it did give me sinusitis but use a neil med rinse so no problem really. I wish I could have continued with it like some ladies who have been on it for years but was told I was only allowed 18. Only took half and hour every three weeks and went straight after work and went back to work the next day no problem. Hope this helps in your campaign.