Tykerb/Xeloda in England - Page 2

Daisypink · 08-07-2007, 06:00 AM

Thanks for the info on the magic mouth wash....

Ive just completed my 2nd cycle of xeloda/tykerb and i have had no mouth sores at all!! yippee!!! i hope i wont be needing to ask for this when i go on thursday for my 3rd prescription!!

I have had no side effects at all apart from being tired..

Just hope this stuff is working.... all will be revealed after the 14th august as i have my first CT scan.

Keeping my fingers and toes crossed!!!!!

Love jakki
xxxx

Daisypink · 08-27-2007, 12:52 PM

hi there

i just thought i would give you an update on me over here in england..

Ive just completed cycle 3.. but have developed the rash!!!

Ive just spotted a thread about this so i am going to join in there..

I have been using the udderly smooth cream on my hands and feet and they appear to be ok.. i have been advised to use it on the areas now where i have a rash along with piriton.

I have been told that i wont be scanned until 12 weeks as they said 6 weeks is too soon so that will be mid september.. will keep you posted..

I got away with out any mouth ulcers on cycle two but they are back on cycle 3 and i'm finding i'm extremely tired..

hope you ladies are all fairing up well..

lots of love jakki
xx

Muldoonmom · 08-29-2007, 10:01 AM

Hi Jakki,

Sorry I'm so late in getting the magic mouthwash formula to you.... I was away on vacation and am just getting organized again.

Here it is:

Nystatin Oral Suspension: 60 ml
Benadryl Elixir: 50 ml
Lidocaine: 10 ml

Swish and swallow 5 ml - 4 times daily

It works miracles for me!

Debbie

TerriLynne · 09-14-2007, 05:19 AM

Hi Jakki

I'm new to this website and forum but saw your post regarding taking Tykerb through the UK trial. I am also in the UK and hoping to get approval for the trial having just been told I have brain mets again (had whole brain radio last year and surgery in March). Did you have to wait long before being told that you were in? Does everyone get Tykerb - I did the HERA trial and due to radomising not everyone actually got Herceptin to start with.

The results on Tykerb look good and if I don't get into the trial I would be prepared to pursue it privately especially as otherwise my options are limited. Does anyone know if it is possible to have it prescribed via an oncologist in the US?

I am lucky to have had private health care throughout although under the same oncologist as would have had under NHS. As Jakki says the treatment was probably pretty much the same but everything happenned faster and the hospital was nicer - I didn't have to wait for hours each time I went for chemo which was a big plus.

Hope you are coping with the side effects Jakki - perhaps we can compare notes if I am accepted.

Best wishes & take care

Terri.

Daisypink · 09-20-2007, 02:54 AM

Update on my treatment here in England...

I have had the results following my scans to see if the tykerb/xeloda is working for my lung mets.. its bad news.. it isnt..

The mets have grown and i have new ones.. i'm devastated..

My oncologist has had to stop the trial.. i dont know where he will go from here.. he says my cancer is proving to resistant to all of the combos ive already tried..

Can anyone suggest anything else to try? I'm so desparate to live.. i dont want to die.. i'm very scared.. any one have any hope for me or encouraging stories..

I currently feel well, hardly breathless just very tired.. am i likely to able to live like this without any treatment for some time? i know no one really knows the answers to my questions but i just need some stories that may help me and bring me out of that darkness that i'm in right now..

Take care

Love jakki
xxx