Anybody self funding Bevacizumab/Avastin treatment?

[Emmacrispins]

This was mentioned by my oncologist as an option for second line treatment. I’ve heard that it’s super expensive, but in searching for info’ it seems that some are finding it less expensive than it was. Does anybody have any experience of self funding avastin?

[Pumpkininja]

Hello, yes I have. Just last year till December( together with olaparib that was reimbursed)Paid a fortune and in my case didn't help. Cancer cameback more aggressive and very spread.Ive been since December in Caelyx, and they add Carboplatin in January ( for 6 months)

Doctors talked about avastin again .I'm still waiting to know exactly what they want to do but very honestly praying avastin is not needed. It creates a financial stress that I wonder if is good for my disease.

Best wishes

Xxx

[Towergirl]

hi Emmacrispins,

I’m the same, now on Chemotherapy after recurrence in spleen and liver. I’ve previously been on Olaparib for 6 months as BRCA2 but didn’t work for me.

Last week discussed next treatment with Oncologist, mentioned Avastin as not had it. He said no trials open at the moment that’s suitable for me and Avastin not funded for recurrence by NHS.

I asked to pay and if I could have IV on the oncology ward, apparently my hospitals trust will not allow on day ward though other trust in England will!! If they would allow my consultant would have looked after my treatment for a reasonable cost plus about £500 for Avastin per cycle. I’ve telephoned my local Spire hospital but the don’t have this service. Lloyds private clinics do this service but believe very expensive yet to investigate

Any lovely ladies out there will any ideas please . xx

[Cheadle]

I recently looked into this. The price varies across the country and it depends on a few things. There is a baseline cost for the drug itself. It can be anything from the hundreds to £2000 per treatment. The consultant who prescribes it may add a fee (@£450) and blood tests add a few hundred more if you are going completely private. When you are primarily an NHS patient, the consultant may waive or reduce their fee (I have seen this said on some forums) and bloods/scans should be kept as part of your NHS treatment. First step is to arrange for a quote from whoever is going to be providing the drug.

[Cheadle]

The other thing is that if you are self funding the avastin you cannot usually have it in the NHS environment. It can be done at home or if the hospital has a private wing you go there for the avastin.

[Towergirl in reply to Cheadle]

Tried our local private hospital Spires used by the nhs trust but they don’t do this service. ☹️

[Cheadle in reply to Towergirl]

Did you check out whether a home service is available? I have seen this mentioned a few times. Think Lloyds Pharmacy might offer it. Your consultant will still need to prescribe.

[Laz66]

My recent second opinion prof mentioned this. If it was to come from him £50 k and would give me maybe another 3 months. My own onc said not really “ worth “ it. I think there are variations in cost across this country now. I am about to start single arm treatment on Jewel trial and notice in the info that they mention trialling this alongside Avastin. I asked if I could get onto this bit of the trial but unfortunately not. I cant see it being trialled in UK with Avastin but maybe in pipeline?? X

[Alfiepop]

Hello. I researched the possibility of continuing on Avastin through self funding after the initial 15 months of treatment via the NHS…I would have gone through my meagre savings in no time. I felt so worried and perplexed that a treatment which had been holding any progression at bay (in conjunction with Olaparib)would just stop. My consultant searched for studies about the efficacy of extended treatment…Only 1 found which deemed that taking Avastin for a total of 30 months had very little benefit.

This, together with my oncologist explaining that it is the Olaparib doing the ‘really heavy work’ brought me some reassurance and acceptance of the situation.

Hope this may help you

Lisa

[Cheadle]

The benefit for self funders is at the point when we become platinum resistant. There is research evidence to support this (Avastin with and following weekly Taxol, extended time to next progression of on average 3 months). However, NICE did not feel the benefit was cost effective.

[Towergirl in reply to Cheadle]

NICE will not fund passed 1st line treatment even if not had before and are stage 4 on recurrence. My local trust wouldn’t allow their oncology wards to be used (with payment for Avastin) though oncologist would be willing . ☹️

[Lizchips in reply to Towergirl]

I don't know to much about treatment where you are, but if can come to the US, city of hope in duarte, CA. Is doing remarkable things in the treatment of cancer. My Dr is Dr Amy Hakim. Best wishes and prayers for your treatment. 💜 Liz

[testarossa71]

Hi, funnily enough, we’re just looking into self-funding for Avastin now.

I had a course of 18 Avastin treatments over the course of 15months in 2021-22. The first couple of cycles were co-treated with my initial (post-debulking surgery) chemo (Carbo/taxol). Then, as I was transferred onto Olaparib, those cycles continued until the NHS-funded time limit expired. I continued with the Olaparib on its own after but that failed at the 16 month mark so we had to abandon that.

I’ve never been NED, and recurrences have been pretty quick to make themselves known when a regime is failing. I’ve just started my third different chemo regime of this year and it’s only just March!

I am rapidly running out of chemo options (maybe two left in the barrel for me and neither looks particularly promising) so approached my consultant regarding the possibility another course of Avastin. He’s confirmed that there may be some benefit (in line with some studies I’ve researched) but that it would have to be self-funded.

Hospital has confirmed that they’ll charge c. £2400 for the medication and hospital admin fees per cycle. Consultant’s fees are on top of that and not listed(!). While I’d rather keep my care under the remit of one consultant and place of treatment, that’s bloody expensive and I know other Trusts can change much less.

I’m seeking options from private oncology healthcare providers locally and hope to have some figures to compare this to soon.

We’re not insured for this but could potentially fund it if we really tightened our belts. The guilt I feel is huge though; the impact on my partner will be significant.

But sure if this is helpful, but wishing you luck in your quest.

Annie

[Emmacrispins]

thank you all so much for taking the time to reply. It’s interesting, and a bit worrying that individual experiences are so different.

I’m waiting for some information from my nhs trust and a few other places, I will let you know if I find anything that might be useful xx