Avastin- your experiences??

Hi ladies
I have spoken to my onc a few times about giving avastin a try but keep getting a negative reposnse. We have private healthcare through my husbands work and they have said they will cover the cost if it is recommended.
I am triple neg and my treatment options are seriously limited. I know that avastin has some potentially serious side effects but if it could help, Im naturally willing to give it a go.
If any of you have tried avastin, can you give me some feedback about your experiences please (e.g. was it effective, how were the s/e’s, what chemo did you have it alongside etc?). Has any one out there who is triple neg tried avastin with any success?

Thanks in advance
Tina xx

Hi Tina

I just finished a year on Avastin this week. It’s hard to say whether I had any se’s as I started it half way through chemo, and also have Zometa. I do get quite a lot of stiffness, particularly in my knees, but that could be from other things. With Avastin kidney function and blood pressure can be a problem - I had a very slight rise in protein in the urine, but well within acceptable limits, and bp has been fine throughout. So it has been plain sailing all the way. I’ve had no progression at all during the year, and some healing of bone mets.

Good luck - I hope it works for you.

finty xx

Thanks for your reply finty :slight_smile: So glad your treatment has gone well. I am going to discuss the option of avastin with my onc + also when I go back to the marsden- hopefully in the next few wks x

anyone else with any feedback on avastin?

Tina x

I’m afraid I haven’t had Avastin so can’t give you the info your require. However, I would just like to say that if you are at the beginning of your metastatic journey, and have the insurance, I would urge you to grab it (although of course the decision is completely yours). I know NICE say it only adds a few weeks to a patients life etc - but that’s because they have looked at it as an end of life drug - when it isn’t really designed for that. The real value of Avastin is at the start of the metastatic journey, because (as I’m sure you know), it works by inhibiting a tumours ability to set up a vascular system.
Apart from Finty, the only other person I have heard of receiving Avastin in Britain is on the Macmillan forum (the person obtained it through the interim drugs fund). However, if you go onto the US forums there will be loads, and most of them are up in arms because apparently the insurance lobby in the states have been trying to get the regulators to impose restrictions on it’s use (due to the cost), and the regulators have duly obliged (leaving many patients worried that they will be cut adrift).
Good luck with whatever you decide.

Lesley I think there are far more that have been on/are on Avastin in the UK. On bcpals there have been at least 12, but as you say many given it as a last resort, end of life, treatment which is very sad because if they had been given it sooner who is to say what the outcome would have been.

Dawn
xx

Hi ladies,

I had Avastin with my taxol chemo. Couldn’t really tell whether it was the chemo or the Avastin causing the se or the effetiveness. But the theory was that they were both working. I’m not sure about this last resort option, because that combination was given after my dx and viewed by my onc as the first (=best?) option. I’m ER+ and PR+ by the way. The plan was after taxol, continue Avastin on its own for another 6 months, but was rejected by my insurance company. The reason given was that Avastin is not effective on its own. But I doubt that’s the case.

Hope that give you a bit more info and good luck if you decide to go for it.

xx

Hi Ladies – Glad to have found you! I have just been offered Avastin alongside ?Taxol for lung / bone mets. I am trying to decide whether to go down this route or the Triple Negative Trial route(Carboplatins v’s Taxol alone). In a bit of a dilemma. So, any more insights into people who have used it / have tried to get it etc etc I would fully appreciate it. I will look at the US forums and the bcpals / Macmillan forum to try and put more pieces of the jigsaw together. Thank you Sadie xx

There was a report in the Daily Telegraph yesterday, saying that NICE had finally refused to license Avastin for NHS use for breast cancer.The article said it was claimed to extend life by 6 weeks but not conclusive-I cant believe that’s true or private insurance wouldn’t fund it-its the money game isn’t it?

Valx

Hi Sadie - am I reading your comment right and the trial is either Carboplatins or Taxol, vs Avastin with Taxol? If so wouldn’t a chemo with a monoclonal antibody be better than a chemo alone? I had Avastin with Doxetaxol and Zometa.

This may be overly simplistic but I thought of Avastin as a way of holding the cancer at bay whilst chemo knocked it back. I think the earlier you have it the better - whilst other chemos are still an option for later.

finty xx