Tykerb

hannah · 09-01-2006, 09:33 AM

Hi Joe
just to thank you for all your info re Tkerb trials in UK, they are being run by us in Christies Hosp Manchester, we got results of brain scan fr my sister which showed after 7 months on Capcetabine the brain mets had actually shrunk! this is great news. We are now waiting abdo scan as she is still having sporadic episodes of vomting ? cause. All bloods ok so back to waiting but again thanks to you all for help
Hannah

tousled1 · 09-01-2006, 02:52 PM

Hannah, I hope that the mets continue to shrink. I will keep you in my prayers.

pattyz · 09-02-2006, 06:52 AM

Hi Hannah!

This is such good news to hear! Is your sister on the Xeloda alone? or in combination with anything else?

I ask specifically because I am currently being refused the Temodar I was taking in combination with Xeloda. I had such good response to this combo. But perhaps it was enough to take the Xeloda alone? I would be happy to feel that was the case...

More good thoughts to you both,
xoxoxpattyz

hannah · 09-03-2006, 08:32 AM

Hi Patty

no only capcetabine. I know you were on combo as I took your info with us last yr when brain mets had started growing again you gave me some info and took it to onc who wanted to try this alone first. My sister has had no problems but began to have episodes of vomiting so she had brain scan which showed the mets had shrunk which is great still having the nausea and vomiting so having abdo scan although all bloods ok. Hope this helps
hannah

pattyz · 09-03-2006, 09:04 AM

Hannah,

Yes! This if very helpful...thank you so much. I was feeling pretty low after being denied the Temodar to combine with the Xeloda... Since my response had been so good with them both.

This week, I will think of your sis when I do my Xeloda alone schedule! Keeping good thoughts, as in: "shrinking and stable".

I surly hope the nausea and vomiting can be resolved, without undo stress or more problems.

Wishing for the best outcome for your sister,
with hugs,
patty

hannah · 09-14-2006, 01:07 AM

Hi PattyZ
just to update you all my sister had abdo scans and we had great results, the liver and lung mets have shrunk significantly. The lung mets can barely be seen on CT and liver looks clear so Onc wants to keep her on capcetibine which we are happy with as the results of it have been great. Unfortunately she continues to be sick but they think this is due to withdrawal of steroids which she has been on for a long time so they have upped steroids to see what happens but 4yrs down the road from lung liver diagnosis and 2 yrs on from brain mets diagnosis this has been the best news we have had mets shrinking in brain, lungs, liver hope this gives you some positive thoughts Patty.
take care
Hannah

pattyz · 09-14-2006, 08:23 AM

Thank you, Hannah!

Hope for continued good response to your sis...
thoughts and prayers to you both,
xoxopattyz

Lani · 09-14-2006, 09:21 AM

in the her2group. It has to do with a patient in the UK (I don't know where you are) whose NHS trust refused to fund his temozolomide I reprint it here. If more stories like this get aired/published perhaps we can shame them into funding more drugs!
Last Updated: Tuesday, 12 September 2006, 19:21 GMT 20:21 UK

Friends strike medicine fund deal

David Hitchen was diagnosed with a brain tumour
A man is buying medication that could prolong his friend's life on the promise of repayment after his death.
Brain tumour sufferer David Hitchen, from Stocksfield in Northumberland, has pinned his hopes on Temozolomide.

However, as it has not been approved by the National Institute of Clinical Excellence (Nice) his health trust will not fund it.

So David Boon is paying for the £1,000 a month treatment and will be refunded from Mr Hitchen's life insurance.

Temozolomide is widely used in Europe and America to treat primary brain tumours and is believed to improve survival chances.

David Boon did not think twice about agreeing to the deal

However, in the UK the decision rests with individual health trusts, and the trust treating Mr Hitchens will not fund the treatment.

Northumberland Care Trust said in a statement: "Decisions about drug usage are taken by a group made up of cancer experts, pharmacists, other medical specialists and managers who represent all of the NHS trusts in the area.

"This means that clinicians are involved in making the decisions and a consistent approach is taken across the North East and Cumbria."

Following the funding refusal, Mr Hitchen asked Mr Boon to help him out, on the understanding he would be paid back from the life insurance once he had died.

Mr Hitchen said: "The guy's a great friend, and he just said right, OK."

Mr Boon confirmed it was a request he could not refuse.

hannah · 09-14-2006, 12:58 PM

Its absolutely disgraceful somebody in UK will eventually sue the National Institute for clinical excellence they do not give excellent treatment they reccomend economical treatment. If these so called experts wieghed up how much treatment costs eg 2 yrs worth of herceptin for primary breast cancer or herceptin plus chemo, radium, gamma knife treatment for secondary breast cancer they would realise it does pay to treat early disease. We are lucky in UK as regards NHS but if I hadnt read posts here and encouraged my sister to argue for treatments I dont think she would be here. I have written to Tony Blair twice and not a nice letter! but we are way behind USA I am a nurse and I get so frustrated but at moment my energy channelled into my sister. Thats my moan for the week
take care
hannah