Fantastic news Penny, long may it continue and have a really great summer if you’re not on here before the nights close in 
Nicky x
Penny that’s great news, how many Taxol are they planning, I was initially going to have 18 with Avastin but it was then decided that if I was getting benefit from it to do 2 more cycles which I have now had and now my oncologist wants me to have another cycle which will take me up to 27! He is also going to start me on Zometa which I think will be every 3 weeks. I have to say that I’m now finding the Taxol hard going with the tiredness and digestive problems so I won’t be sorry to stop it.
He wants me to have a chemo break so that my body can recover and go on to another hormonal. In the past they have never held it for long and I would like to continue with Avastin if BUPA will agree. Is it suggested that you will stay on Avastin once you have finished Taxol?
love Kathryn
I had Avastin with separate organisation that came into my home in parallel with hospital treatment as (private) hospital charged extortionate amount for it and insurance wouldn’t pay for maintenance avastin. Cost me about £1000 a month which is a bit less than suggested above.
I had it first combined with 8 treatments of taxotere which went well, but once I was having it on a maintenance basis my blood pressure zoomed up after three months and Avastin had to be stopped.
Had months of misery with constant headache due to blood pressure, felt like head was going to explode, could barely put it on the pillow to sleep.
I am interested in what is said above about it stimulating cancer progression once it is stopped as that is exactly what seems to happened with me and three months after stopping it I have had to go onto Xeloda.
Very disappointed that after paying all that much that the avastin/taxotere combination gave me so little time before progression as I was hoping for longer after all the hype with this drug.
Also blood pressure still isn’t back to normal five months after stopping Avastin and have to take tablets still.
So it isn’t all good news with this drug like one hears.
hugs to you all, Ariadne
Hi Ariadne
I’m really sorry you had such a hard time on avastin. I so think it is crucial that stories like yours are heard. There has indeed been so much hype about avastin…hype which objective trial evidence simply does not support.
best wishes
Jane
Hi Debsincornwall, Nicky08 and KatieP,
Thanks for your comments.
I would say that I have probably now had 27 doses of Taxol, and about the same of Avastin over the last year.
My onc just says continue as is for now. It is frustrating not knowing what will be, but since this is certainly better than what was, I just have to accept it.
She has just been at the big oncology conference in Florida last week, so maybe there will be some changes.
Now that I only have the Taxol once a month, my side effects are much more manageable, and it gives me the strength to continue.
Sorry to be so vague.
Penny
Hi Penny,
I see my onc next week he too has been to Florida on the conference, lets hope they come back with some good ideas and treatments.
I am no fool and I fully understand not all treatments work for us all, but as long as we have a chance to try the drugs that are out there we are in with a chance.
Love Debsxxx
I had a little chat with my onc yesterday about Avastin trials (he is just back from ASCO too) and he said that while not all results are in yet, it does seem to work for some people, but evidence does still suggest that it does not increase survival times overall. Great that it works for some.
Hi Jane, thanks for your sympathetic response. I do not contribute very often to this site, but I am an avid reader.
I feel that knowledge is so important in our position and NHS trained staff do not seem to be trained to impart it - get one out the door and the next one in as fast as possible seems to be the objective.
I am so grateful to all of you out there who tell us your stories and would encourage many more, the stuff I have learnt off this site has been of inestimable help.
love to you all, Ariadne xx
PS for the three months I was on maintenance avastin (and femara) until blood pressure problem it did seem to control my little ccs. Not entirely sure I will not be back on it at some stage together with heavy duty blood pressure pills. (oh joy! what we do to survive)
For anyone considering whether to pay for avastin themselves from a homecare provider, Roche currently capping drug cost at £30,000 in any calendar year, so having had it paid by insurer with the Taxotere, I actually only had to pay for 2 maintenance treatments or so. Infuriatingly the time I had to give it up I could have had it for another 3 months for free.
Hi Ariadne,
I like you have high blood pressure with avastin, the runny nose I could cope with but this bp problem is a whole new ball game. Have you managed to get is sorted?
Last year when I was at Westminster I was sat by pure cahance next to one of the guys from Roche I was telling my story about the drug I was fighting for, when I sat down he asked which drug. We both laughed when I said avastin. He was the one that told me they had capped the price.
We have spoken on the phone since he struck me as being an o.k. bloke.
What treatment are you on now? I hope yo will keep updating us I feel it so important we share the info our our drug regime.
Take care.
Love Debsxxx
Hi Debs, so sorry you have this high blood pressure problem.
As long as BP stays under 150/? Avastin can be given.
Guidelines are that for BP up to 200/? Avastin should be stopped until blood pressure under control then Avastin can be restarted with BP controlled with heavy duty BP pills. If BP goes over 200/? it has to be stopped altogether.
My BP was around 185/105 and so onc stopped Avastin and I got BP pills from GP. I thought intention was to restart it for me as it was working and it seems that GP can supply really heavy duty BP pills to go along with it. But in intervening three months cancer marker soared from 60 to 141 and so I am now on Xeloda. Hoping to persuade onc to let me stay on Xeloda long term as it is very tolerable. However my neut count is rock bottom as usual so do not know what will happen.
But if it is a choice between dying and taking Avastin again combined with BP pills I suppose I will have to go for it despite cost and questionable trial results.
Good luck and lots of hugs to you, Ariadne
Hi,
I was on xelaoda for 2 years and had good shrinkage for 18 mths. By far the easiest chemo I have done. I do know one woman who was on avastin and xeloda, at the moment she is doing o.k. and is ned.
Clinic for me tomorrow so fingers crossed!
Take care.
Love Debsxxx
Hi Debs,
Just been reading through this thread so much information! I’m now coming up for 12th Taxol session tomorrow … all in all not going to bad, but now thinking what comes next?! Anyway what I really wanted to say was good luck for the clinic tomorrow you deserve good news, I havent been on the site much lately but hope you are keeping ok and building yourself up after Taxol.
Take care fingers crossed for you.
Love DebsHx
Hi Debs
Just wanted to wish you luck with your appointment tomorrow, as you wished me luck with my recent scan and that showed no change, which is good, so I hope you have good news tomorrow too.
Love
Linda
Hi Debs, Good luck with your scans today xx
Good Luck from me as well
Nicky x
Well I have just got back from clinic I wasn’t having a scan it was just a normal appointment but guess what? I had a scan! My voice is a bit weak and I am getting breathless and avastin can cause a blood clotting problem so it bungs up the holes in the lungs. My onc is so on the ball he sent me for an urgent scan and I am pleased to report my lungs are fine and my bloods are all good.
Now, not sure which one of you said I was having a scan and that started all the good wishes off but if you could prdict the lottery number for me I would be very grateful!
Thank you all for your good wishes they worked.
Love Debsxxx
Really pleased Debs
My onc thinks my left lower lobe has collapsed because of nodal disease…ie. cancer in nodes pressing on bottom of lung. He emphasised this is not lung mets…but could be reason for my own breathlessness. Wondering if it could be for you?
Have a glass of champagne on me…and the lottery numbers are 2,3, 10,15,46 and 49.
Jane x
Oh thanks Jane,
I asked my onc ‘Brian’(ie Life of Brian)if they had picked up any magic drugs and he said there are a few coming through for triple neg with favourable results and not the nasty side effects that we are used to.
So with any luck this will be good for triple neg he said it was about time as they had been falling behind.
Re scan I am back on Friday for pamidronate /avastin so he is going to have another look at me then. I had the bigger canular as they feed the dye through at a higher speed for the lungs. He is going to get his measure thingy out and have a good luck so maybe he will be able to tell me more.
I saw your post on bcpals re nodes and did think we sounded the same!
Thanks for the numbers if I dont post after Staurday you will know I have gone on a world cruise!
Love Debsxxx
HI Debs
Realist and glass half empty person that I am…there’s a lot of hype right now about Phase 1 trials of PARP inhibitors…various trials showing modest improvement in progression but nothing outstanding or revolutionary…
I hope I get an invite to the cruise.
Jane x
Of course plus R
Love Debsxxx