Bowel cancer treatment and side effects

Sean

1st line chemo done 😐 now onto Capox with Avastin NHS top up. At a cost.

Hi everyone.

Been a while since I checked back in properly. But here I am (still πŸ‘.. somewhat) and I'm wanting to know if anyone does NHS top up chemo?

My latest scan has shown (as long expected) that my first line of fol-fori+cetuximab has fully run its course.

Back in Dec 18 I made it clear to my team that if there was a drug that could help (NHS or not) I want to be on it, as I'm aware of how strangled the NHS is financially.

Was told that drug would be Avastin, tho it isn't currently recommended by the NHS 😬 I was always under the impression cetuximab was my blocker.

After getting my latest results (multiple mets, biggest at 44mm) they ring and advise me to go sort Avastin on private Ward. The sainsbury wing. I was told 1000-1500 numerous times. I pay 1500 and am kinda excited to get going given the sad drug addled twat I've become πŸ™ƒ
I was sent up there blind with no info.

Then I get a call saying it's actually Β£2300 and I HAVE to move upstairs to the private Ward to do the
avastin. This means going through the tunnel at Hammersmith which proved to be quite tricky as the cold caught my throat and seized it up instantly.
I got this phonecall whilst on my normal chemo ward getting myself set up for restarting chemo AGAIN. I'm told it's 300quid for the chair and 400 to my oncologist!! My oncologist is charging me!! I didn't even know this was possible. So I was kinda pias you can imagine but also desperate to start.

I'm a broke NHS patient with no insurance.

It feels incredibly unfair to me as I've already come across a few others, doing the same treatment without the extra cost 😐

So, anyone else?

determinedjoan

Hi Sean,
Saddened to read ur post; can hear ur frustration & distress & completely understand .
I am currently half way through 6 doses of Folfoxiri; can’t hv Cetuximab cos K Ras mutant.
Hv also discussed privately funding Avastin in the future with my wonderful NHS Oncologist. She has explained to me that NHS currently don’t fund it & IF I wish to self- fund, would hv to pay for a private Oncologist & tests privately, as well as Avastin itself. It does feel unfair that it is not available to everyone who might possibly benefit from it based on need rather than ability to pay.
I truly hope that whatever treatment u try next will help u to keep well. Pls keep us posted.
All good wishes, love πŸ’— & hugs πŸ€— :x:

Lexi

@Sean Hi Sean sending you a huge hug, you are right it is damn unfair and there are many on this site that totally agree, have you thought about crowd funding??? Love and best wishes :x::x:

annie50C

Hi @Sean just seen your just giving page.. that's fab just doing it now. So absolutely awful that this isn't funded by NHS. Does anyone know why ? Xxx Annie :x::x::x:

Lawsey

Hi @Sean you would think it logical that usual provision e.g blood tests scans oncologist appts continue on NHS whilst the Avastin be paid privately. I would take it up on a political level e.g at 1to1 surgery with your member of parliament
I would see if a charity would advocate on your behalf and also check the position legally e.g what should NHS provide to patients. If all else failed I would go to the media. My Mum died at 40 and you know in many ways it was better then - there were services and compassion - there was straight talking
You are a young man. They should be fighting for your life not using the opportunity to take your money.
I wish I had the knowledge and skills to fight for you. Fight you must

Sean

Please PM if you want details of my Justgiving page.

I've already done two of the Avastin.
@annie50C ridiculous it isn't offered. First line in most countries. It can be got for some Cancer types, just not mine πŸ˜‘ funding for it was pulled in 2010. Is that right? Anyone

Lawsey

@Sean - shared on facebook and all contacts. Very well written
Good on you - keep going

Bear G

Hi @Sean
I’ve akways admired your approach to dealing with the cancer and this continues with your current situation.

Like you, I’m surprised at the way you’re being treated regarding on costs for adding Avastin as a top up with the nhs.

This is a relatively new option and clearlybthe hospital is trying to work out how to manage it.

Could I suggest calling Macmillan to discuss this as they have a team that specialises in financial matters?

I hope Avastin works wonders for you.
Big hugs
Bear
:x::x:

Lawsey

Dear @Sean you must call Macmillan. Surprised there has not been more response. Like @determinedjoan I may be finding myself in your position soon enough
But lets get behind you and support you in all you have been through and your efforts t survive this disease
:x::x:

lilmil

I have shared via FB. Good luck @Sean. XxπŸ’–πŸ’—πŸ€žπŸ™

GD62

Hi @Sean sorry to read your news good luck :x:

Ange1974

@campaignkate on twitter campaigns for drug funding and advocates with some success . May be worth getting in touch :x:

Sean

thank you all for the replies! Ive had a pretty rough 24hrs. Will get back to you all when I clear some headspace.

Sean.:x:

determinedjoan

Oh Sean, sooo soz to hear that.
Really hope u feel much better soon.
Thinking of u n sending love πŸ’•, hugs πŸ€— & healing vibes :x: