Just thought I would start a new thread to see how many other ladies are out there having avastin as a maintenance regime? Are you having it three weekly, how are you coping, any tricks and how long have you been on it? Look forward to hearing from you.
Geraldine
OK - guess there aren’t many out there on avastin! I know AnneS and debsincornwall are (and a couple of ladies on the other site) I know it’s only private and trial patients who are getting avastin but I am surprised no-one else has had this drug. Hopefully the results will show it’s as good as herceptin for her- ladies.
G
I’m on Avastin, just didn’t see this thread previously as I only generally look at Secondary breast cancer.
I’ve only had three cycles so far and am having a break at the moment because I have been undergoing laser surgery to my liver which can be dangerous if you are on Avastin as it can cause massive bleeds.
I seem okay on the Avastin although have noticed my nose gets very congested but have hopefully solved that with a saline nasal spray which helps keep it from drying out.
I’m not in any trial or receiving it privately but have been allowed funding by my PCT which I am very grateful for. I will continue with the Avastin from September when the liver surgery is finished and hopefully my liver is in remission. Then it will be a waiting game to see how effective Avastin is in stopping any more spread.
Best wishes.
Spike
I’m on Avastin - part of a trial at the Marsden. Had it jointly with chemo for 6 cycles, and now on very early days of the maintenance programme, so too early to say whether it is keeping things at bay. What I would say is I feel good on it, no real side affects apart from the occasional bloody nose. Obviously incredibly grateful to be on the trial and hoping it will do the trick for me. Will keep you posted on how things progress.
KS
Hi to all
just found this thread!
started avastin with taxol 828 had 12xtax 8xavastin
now on avastin & pamidronate every 3 weeks so had 4 maintenance treatments
I will be going back on chemo as and when needed with luck I can have a few more months fingers crossed without it.
Love Debsxxx
Thanks ladies - I’ve been on holiday (in Cornwall Debs!). It’s good to know there are some other out there - at least I know that I can ask people in a similar position advice if I need to.
Geraldine
Hi Geraldine,
AnneS has left a message on secs forum hope you catch it.
On behalf of myself I sincerely apologize for the very unprodictable weather in Cornwall. Localsthink I have brought the bad weather from Manchester!
Love Debsxxx
I watched Panorama last night about postcode lottery and they were taling about avastin as a treatment for an eye condition.The cost was £2.50 a day and I dont understand why[even allowing for different amounts]it is so prohibitively expensive as a treatment for bc.Any one else know?
No idea Horace - perhaps Debs could ask her Roche contact?
Hi to all,
it is the amount used, my understanding is you only have to have a couple of injections.
Next time I am in touch I will ask. My eye sight has gone really bad since first chemo maybe I will get them to put some in my eyes, they always leave a little drop in the bag I complain all the time!
Love Debsxxx
Oh Debs - I am glad to find another Avastin bag watcher! I heard that each bag of Avastin is worth about six thousand pounds, so when there is a little bit left at the end I get quite upset!
I think most of us ladies on maintenance Avastin are at a similar point. I started my treatment in Feb, had six Avastin/Tax, finished this in June and then moved onto maintenance Avastin with Zometa every three weeeks. I have had three maintenance treatments so far.
I don’t think the Avastin is causing any real side effects. My bones ache, but I don’t think the Avastin is causing it. And I currently have a runny nose and a bit of tightness in my chest which I think may be hayfever - apparently there is a lot of nettle pollen around at the moment and since we live on the edge of a common I am putting it down to that.
Hoping we all have a good long run on Avastin. Has anybody else been told that, if/when the Avastin starts to fail, they will probably be switched to another trial drug that works in a similar way to Avastin? I think there is another one coming through the pipeline but I can’t remember the name of it right now. Will have to find my paperwork to look it up.
Deirdre
Deirdre - I have the same symptons as you - tight chest aching bones (especially legs) and a runny nose - I think they are symptons of avastin! Though it may be zometa.
Geraldine
Deirdre and Geraldine - I am on pamidronate so I think it is the avastin! but I wont mention it to onc in case he has to fill a form in for the people up stairs.
Love Debsxxx
What joy- add to this my blood pressure pills - which are making me dizzy it’s great fun isn’t it 
Oh and the zoladex and femara that I started earlier this week…their side effects haven’t started yet.
At least the taxotere effects are wearing off - I’ve finally stopped taking laxatives YIPPEE!
Geraldine
Does anybody get indigestion on avastin? I seem to get it at night time just before bed. I keep meaning to take Lanzaprozole every morning, but of course the indigestion is gone then so I don’t remember. Would be interested to know whether this is a side effect of avastin???
Deirdre
Deirdre - my mac nurse told me that my omeprazole should really be taken at night. Cos when you are lying down any reflux problems are most likely to be at their worst. Don’t know if this generally goes for any gastric disturbance from the avastin.
Dawn
When I started on avastin I suffered a lot with gastro problems (really uncomfortable), but I was I was having it jointly with taxotere so I assumed it was the chemo. Then a couple of cycles in I was prescribed Lanzaprozole at the hospital (which apparently was an oversight and I should have been on from the beginning with avastin) and I have had no stomach problems whatsoever since. Interestingly though I have been told to take this drug first thing in the morning before breakfast.
I have been told it is important on avastin to take Lanzaprozole to help prevent ulceration of the stomach / perferation of the bowel, which can be a problem if you are on it long term.
K
That’s interesting, K. I was prescribed Lanzaprazole while on tax and avastin together, but didn’t think it was necessary while on Avastin alone and the doctor at the Marsden doesn’t routinely prescribe it now - it doesn’t arrive automatically anymore in the “going home” bag. Knowing though that Avastin can cause gastric problems I guess should have alerted me to keep going on Lanzaprazole. I think I will start taking it again (can it do any harm?) and talk it through with the doctor when next at the Marsden. Thanks for comments.
Deirdre
Deirdre you post is interesting - I had the lanzaprazole when I was on tax/avastin for a couple of cycles. Don’t have it now - I do get indigestion (mostly at night when I lie down0. At the moment I am managing this with Gaviscon. I am back at the Marsden 09/09 and will ask - if you are there before me will you post what is said - thanks.
Geraldine
Just a quickie - I have started hormone treament but wnated to know whether Avastin causes any other ladies to have hotflushes? I though the chemo had turned off my ovaries but the zoladex is giving very hot flushes!
Geraldine