Hi chums
Have been on the Tykerb trial in Essex since Jan 2007…I take it in combination with Xaloda. I have had a slight decrease in the chest wall tumor,which ahs been part of my life for the last five years…this drug combination seems to be working.
After the news of some shrinkage, I can’t help feel abit down. I have tried a plethera of drugs over the last few years, they work for about nine months and then it begins to grow again…I am grateful for the extra time this has given me…but continue to play the waiting game. I can’t seem to shift this mind set.
Love to all who sit and wait. Keep well
Love Onetit
hi onetit , keep positive as you are lucky to be able to get on i am still waiting , so keep on fighting ! it may work for ever one of these drugs have too give us all hope . sophie xxx
how has it been ?
Hi Sophie
Thankyou for your post
I must have been having a down day…my post sounds quite doomy…as I have just re-read it.
To answer your question…I have been lucky so far as I have had very few problems…abit of sickness early on…wind which is ok for me …but maybe not for others. My feet and hands have been the main bugbear. They are very dry and split and bleed… I have tired endless creams…Bipropane is the one that is most soothing…it seems to have become worse as time goes on.
How long have you been waiting Sophie? What help are you getting at the moment…what regime are you on at the moment?
Keep well an take care
Onetit x x x xx x
hi onetit,
You have every right to feel like this , with what we all go through we come on here to air our feelings so dont every be sorry as this helps us all in some way
.I am now on herceptin 3 weekly and FASLODEX 4 weekly , so will see if this stops it! but still awaiting to try tykerb. the specialist stated they would not prepared to try tykerb until the cancer spread further , i would prefer prevention and stop it now but this is not the case ! i have the cancer now dotted down my spine from t1/3, 6/7/8 and now 10/11 so even though it has spread it has only stayed within the spine area and also in hard tissues not the soft tissue ! they also don’t have statistics on tykerb used just on bone so they don’t know if this we help and also said they don’t want to use up any options in which i might need later on with this disease, so you see where i am coming from. if have answers let me know. i am sorry that tykerb has effected your hands and feet is their anything the docs can do or have you been on everything?
its been great to hear from you . keep me informed.
sophie
Hi onetit
hope you dont mind me asking you a few questions…
I am also on the Tykerb/Xeloda trial…started it 3 weeks ago…
so far I have not suffered with my hands/feet - been using the ‘not just for cows udderly smooth’ cream each day, but i have suffered with fatigue and a lot of mouth ulcers… have you suffered with these?
my onc is going to reduce the dose of xeloda as he says its too strong and causing the extreme fatigue and mouth ulcers… have they mentioned reducing your dose to ease the hand/foot??
I am really pleased that the combo is giving you good results by the way… its very encouraging to read…
Sophie - hope you can get the tykerb soon…
Love Jakki
x