Avastin

[Friscok12]

My oncologist said if I go on to this it will be a injection did i pick her up wrong what chemo is giving in a injection never heard anybody talk about this xxx

[Katmal-UK]

Unless theyve changed it I thought it was via a drip over a couple of hours, mine was when I was on the trial nearly 10 years ago. Kathy xx

[Friscok12 in reply to Katmal-UK]

I thought it was a drip I must have picked her up wrong she did say so much about diffrent chemo and one was an injection xx

[Katmal-UK in reply to Friscok12]

Sometimes its hard to take in all the information they give out xx

[Lyndy]

I had it over 30 mins via cannula every 21 days...18 overall xx

[Purple-iris]

Hi

As far as I know Avastin is only given as an IV treatment. Starts as an hour and half and then goes down to an hour and then reduces to half hour IV as long as no reactions . Normally ever 3 weeks for 18 treatments . It's not techically chemo it is a targeted therapy ( monoclonal antibodies that work by targeting specific proteins on the surface of cancer cells . Bevacizumab (avastin) targets a protein called vascular endothelial growth factor that helps cancer cells develop a new blood supply . Hope this helps . Have taken this from the Macmillan web site and was given it when I started my treatment . Has a lot more info about side effects etc

Love Kim x

[Sonshine1 in reply to Purple-iris]

How do I find that web site. Is it just Macmillan .com

[Purple-iris in reply to Sonshine1]

Sorry sent in wrong place !

Kim x

macmillan.org.uk/cancerinfo...

[Leianne7]

Hey Hun I have a fact sheet thing on avastin that I got given when they was trying to get it for me if u want itxxx

[Hidden]

Avastin is usually given on a drip over an hour and gradually goes through faster and only take a half hour. It has worked well for me so I would be in favour of it. You onc or nurse should give you an information leaflet and answer any questions you may have

[Paulmck]

Like Purple-Iris we had 18 treatments at 3 weekly intervals. Not technically chemotherapy but administered in the same way.

[thesilent1]

Avastin is not chemotherapy as far as I'm aware! Plus my brother in law had his first chemo for stage 4 follicular lymphoma 3 weeks ago and it was given by syringe over a half hour period. Ann xx

[Sonshine1 in reply to thesilent1]

Wow........interesting

[Emsymits]

Is Avastin funded by the NHS in the UK? After watching Nicky's tv prog about raising funds for olaparib I wondered if Avastin has similar restrictions? I.e. Can you have it after first lot of chemo or do you have to wait for OC to recur and have 2nd lot of chemo before you become eligible?

X

[couls in reply to Emsymits]

Hi, I'm self funding avastin as after second line chemo it isn't funded by the NHS. I believe to get it after first line you have to be stage 4 or a certain amount of cancer couldn't be removed during surgery or if you are inoperable. This is costing me £3200 every 3 weeks. We are constantly fund raising to pay for this treatment. It's bad enough being ill without the stress of trying to raise money to pay for avastin. X

[thesilent1 in reply to couls]

Its only funded by the NHS via the cancer drugs fund or equivalent in Scotland and Wales. It was never developed for Ovarian Cancer hence Nice refusing to approve it for use the way they have done for the like of Paclitaxol or Carboplatin etc. We do not get it in NI. The only way I could get it here would be to self fund. Is it expensive to do this and how do you tho about arranging it? Thanks. Ann xx

[Emsymits in reply to couls]

Blimey. I wasnt expecting to hear that it was so restricted or expensive. That's ridiculous. I agree it just increases stress which we are supposed to avoid! I wish you every success in raising funds.

How long are you supposed to take it for? Is it a set number of weeks/doses or is it forever? I'm beginning to think I need to start planning for the worst case scenario...

X

[Friscok12]

So can you get it second line xx

[Purple-iris in reply to Friscok12]

As far as I am aware the NICE guidelines changed . It used to be available for stage 4 recurrence and you could be on it longer than a year (18 / 3 weekly infusions ) I have met someone who is with the same NHS oncology team who was on it 2 1/2 years . ( stopped when her CA 125 started to raise ) Now only funded as part of first line treatment . Prof Jayson at Christie spoke about his research at the Ovacome Day and is trying to get enough trial info to get this changed . Has also developed a test that is in trial to tell which cancers it works on. ( think link is still on Ovacome site )

I am stage 4 so started it with my 6 th chemo ( first line) in January 2017 but can only have funding for 12 months ( 18 infusions ) so if I want to continue will have to self fund . I was also NED and my oncologist said that if the funding hadn't changed she would have saved it and used if I had a recurrence . But now was too much of a risk not to have it as part of first line as she would no longer be able to offer it if I had a recurrance . Seems wrong that the oncologists can not use the treatments for the patients they want when they want them and obviously all comes down to money . Although must be cheaper overall for us to be maintained in remission rather than on chemo with all the costs and added complications involved Problem is as they said last night on the Hospital program featuring Nicky . the more of us they keep alive , for longer the more it costs . Sorry if this sounds negative but the program last night just brought it home that even if there are new treatments and breakthroughs it's unlikely that they are going to be available without a fight and a lot of money ! As the Uk seem to lag behind many other countries on approval .

[couls in reply to Purple-iris]

Hi, as I'm self funding avastin after my first recurrence and I'd seen prof Jayson's lecture, I asked my oncologist about the Tie 2 test he had spoke of. Apparently the blood test needs to be done as soon as you start avastin as a baseline, as I've just had my 14 th treatment the test is of no use as they have no baseline for me to go off. It's all a nightmare I feel I have to know everything so I can fight for what is out there. X

[Purple-iris in reply to couls]

Hi Couls

So sorry you are having to self fund Avastin and the test not useful . Didn't know that you needed a baseline prior to treatment.

Do you mind me asking if / what chemo you had for your reccurance and if you had Avastin for your first line ? How many Avastin treatments are you hoping to fund ? Was it easy to organise through your NHS oncology team .

Sorry for all the questions . I want to start talking to my NHS team about the possibility of continuing past 18 treatments if I can tolerate it . ( and afford it !) not sure how long it takes to organise .

As you say the whole issue of maintenance drugs and new treatments seems to be a total nightmare and we have to really fight our corner . The last thing we need on top of everything else . Stay well love Kim x

[couls in reply to Purple-iris]

Hi Kim, I had carboplatin and paclitaxol (not sure if that's how you spell it, lol ) for first line and second line. No , I didn't meet the criteria for avastin for first line. I only knew about it as I made friends with a lady in the chemo unit who was having it.

So when I had a recurrence I asked my oncologist about it and he told me it was no longer funded on the NHS. So I asked if I could pay for it privately, he did try to persuade me not to, saying it was a lot of money for

only 4 months progression free survival , as this is what the avastin trials showed. But I told him I wanted to give it a go, as why do they still give it on first line if it's no good ? He just filled a few forms out , I signed them, I got a letter that week from the private patients office saying I had to pay before I received treatment. So all pretty straight forward really. I'm hoping to be able to pay for 18 at least , as this is what the NHS fund for first line. If I manage to raise any more money I'll keep going. My family and friends are doing things all the time trying to get the money together , my daughter is organising walking the Yorkshire three peaks again on September 2nd , they did this last year which was the start of the fundraising. Last resort will be selling my home. It's all really a bloody nightmare.

Take care Val. X

[Purple-iris in reply to couls]

Thank you Val for all the information . So sorry that you are having to stress about fund raising with everything else going on. I do often feel we are the poor relations to breast cancer and when there were issues with breast cancer drug funding changes it made the headlines .

Not sure if it is your thing but have you thought about crowd funding or trying to get the local press support. I read somewhere that sometimes the drug companies fund drugs on compassionate grounds so maybe worth a letter . My husband is trying to access his pension early to have on standby if / when needed . You summed it up well a bloddy nightmare .

All the best with your treatment and fund raising . Love Kim x

[couls in reply to Friscok12]

No, that's why I'm self funding. X

[Sonshine1]

I'm still on Avastin as of now and I go in for a drip into my vein, takes about 2 hours. Maybe they have a new thing now. I do know that you can get Avastin via a pill but it is so expensive no one can get it.

Sandy

[Purple-iris in reply to Sonshine1]

Hi

This is the address at bottom of info page - hope it works as a link or gives you enough info ! Kim x

macmillan.org.uk/cancerinfo...

[Sonshine1]

Hi everyone..........I was living in Ecuador when I was diagnosed with stage 4 ovarian cancer and the medical care here was wonderful. Avastin is considered to be part of the normal line of care here for stage 3 and 4 ovarian cancer. I received it as part of my chemo treatment program from the beginning. Then after my 6 chemo treatments they started me on Avastin as a separate program. I did some research and Avastin is considered a biological/immunotherpy program and was described that way also by the Dr's. The problem is that they did not explain the joint pain that would be experienced, almost dibilitating for me but may not be the same for all. Based on what I'm hearing almost everyone does experience the overall joint inflamation. I had 10 infusions after chemo and with the 6 I had with the chemo I've had 16 treatments. My husband and I have discussed it thoroughly and have made the decision to stop at this point. I'm really only 2 shy of the recommended 18 so hope we are making the right decision......who knows but my number s are real good and just don't want to do the pain any longer. Of course this is always a personal decision for each person based on your circumstance. I do believe Avastin is probably one of those really good medical discoveries with great advantages for cancer patients. I have a friend in the US who had ovarian cancer same time as I did and she wasn't even offered the program....weird.

Love and Hugs to all who are struggling with the battle of cancer. Never give up.