out of the trial?

Hi,

Just read your post, really feel foe you, I am in a similar situation as yourself but a different drug, mine is surafenib for kidney cancer.

The side effects are almost unbearable, doesnt help that i am bringing up 3 children on my own so not great when you dont even want to get out of bed each day, but I thank god for each day as when you have had cancer I think it gives you a reality check & you realise that every day is precious, I use the fact that I am still here to bring my children up & they need me to be positive but ut is so hard when I can barely walk due to hand & foot syndrome, fatigue which is terrible, hair loss etc.

I could stop the treatment & then its just active survellience but like you said by taking the drug I feel like I am doing something to stop the cancer coming back & I guess it's sheer fear that makes me carry on fear that if I stop the drug the cancer will return, but my quality of life is drastically affected at present so do not know what to do...........it's a horrible dilema to be in.

Hope all works out for you.

Sarah x

My Brave Ladygooner,

What can I say what can anybody say, I feel so angry that this is happening to you. After all you have been through this is the out come.

The only thing that makes me try to know,that you some how will overcome this is your strenght of mind and your will to get on with life.

Your sense of humor is the other strong point that you have. All day I was waiting to hear from you hoping the news would be good,but we never seem to get what we want.

Try and get some sleep!!

Take care and be safe.

Love ED.xx

Ladygooner, the posts above say it all.  All I can add is good luck and hope they can offer you an alternative.  Just remember that what's happening to you on this trial may well be happening to others too, so whatever the outcome, YOU MADE A DIFFERENCE.

Cold comfort right now I know.

All the best,

Debs xx

It is my experience that if one drug or combo of drugs is not working for you, they switch you over to something else.  They also have to monitor your labs so as not to deplete any 'stores' for subsequent chemo (like your platelets...they like them to be up to a certain point or risk a possible bone marrow problem in the future).  So you are not at a loss for drugs...just that one, perhaps.  Make sure your care team knows all of what you are going through, in your head as well.  There are lots of folks there to help you and your children.  That has been my experience.  xx