Hi Mills
Hope the little grey cells are behaving. Encouraging news re Avastin - I presume you have seen the post by Janiw on the trial for Omnitarg on the ‘Positive Stories really needed’ thread, if not it might be worth a look.
All the best in your fight and continue to keep us all informed
Blondie
All is not rosy on the Avastin front. It has appalling side effects, and is of limited use. I could post links to interesting reports but BCC is not allowing them.
Hi Diane
I wasn’t going to post until I had my first scan that’s not till 1st April so I will try to be of some use to you.
I started Taxol plus Avastin six weeks ago I also needed radiotherapy on my spine. I must have been pretty run down the treatment made me feel really rough
and I also suffered internal burns to my windpipe so I have been ill for the first time since I was diagnosed! The chemo and Avastin is bearable I have a bald
blistered head, not very attractive. No nasty side effects from the Avastin as of yet!
I was really lucky with my onc. he backed me all the way. I had to fight my PCT but was determined not to give in, my onc had told me he had seen liver tumours
melt before his eyes on his Avastin patient scans. This made me determined I just felt I had to try everything I could to get hold of the drug.
Each PCT is different but none like bad publicity just tell them you would like to try the treatment and let them know that you know the drug company has capped the price making it more affordable. Ask if you can go on a trial there is one for Avastin but I believe its only available if you have not been on lots of different chemos.
Good luck. If I can be of any help let me know.
Just to let everyone know, there is a documentary on Radio Five on Sunday 23rd March at 7.30pm. It is presented by Jane Tomlinson’s husband and it is about the drug licensing mess in the NHS. If you miss it you can listen again on the BBC website. Take care, Ian (Debs in Cornwall’s husband)
Hi to everyone
I had my first scan yesterday my onc has just phoned to give me the good news all the tumours in my liver are showing up to 50per cent shrinkage!
Ian and I are over the moon I start my next course of treatment on Friday so will keep you all posted. Thanks to all of you for the support and if you are in talks
with you PCT keep up the pressure I have only had four lots of avastin if it can work this well for me it will work for you.
Love Debsxxx
Fantastic news - you must be overjoyed. I am really pleased for you especially after all your campaigning. Keep going!!
Geraldine
Debs
I am so pleased to hear your good news. Keep going Love Colette
Hi Mills and Diane
thanks for all your good wishes glad to hear your treatment is a little easier Collette I am keeping up with your postings.
Diane I have had 6 taxol and 4 avastin I am due to have the same amount again my onc testerday said as long as it works I can have it so I will let you know after my next lot. Good luck with your next meeting with onc. With regard to co payment look up doctors for reform they may be able to help.
Love to all Debsxxx
Debs,
Thats absolutely great, I m really really pleased for you.
love
cathy
Flip that’s quite a result! Great news Debs. Keep us posted of your progress, and keep up the fight girls
love Jacquie
Hi Debs, that’s great news about your shrinkage. At my scan last week I learned that tax/avastin has shrunk my distant lymph node mets by up to 40%.
Are you having 4 more tax/avastin or 4 more avastin on its own? I was told that i will get 6 tax/avastin in total because the treatment is so harsh.
Then I think I stay on avastin for as long as it holds things stable.
Deirdre
Hi Deirdre
I am booked in for 6 more same as you.
Good luck
Debsxxx
HI Debs and Deirdre,
That’s great news about both your scans. Really encouraging to hear. I’ve had 4 taxol and 2 Avastin so far and will have another 4 and 2 before my first PET scan in May and then if there’s improvement will probably be having a further 8 taxol and 4 Avastin before the next scan. I am lucky to have BUPA through my husband’s work but feel very strongly that Avastin should be freely available to all and really hope all the campaigning pays off.
Take care both and keep in touch as to how things are going.
Anne x
Hi Anne
Are you getting Avastin on a trial or through private health insurance?
Maddison
Hi Maddison,
Am getting Avastin through private health insurance (BUPA)through my husband’s work. I do feel very lucky although obviously it’s still early days for Avastin here. BUPA have okayed it for 3 months initially but hoping to be able to be on it for longer if my PET scan on 9th May shows improvement.
Anne