Tykerb xeloda stopped working
 

Hi,
I started the EAP program in California long beach on Sept 27th and there was some improvement in the scans 12weeks later. I was travelling every 6 wks from Singapore to California although it was tiring. After the december scans the markers ggradually rose but the last 2 wekks it shot up like crazy. I had my review with scans last week and there seems to be a clear progression in the lungs and shoulder bones. The EAP program has just come into singapore and was thrilled that traveling to US would not be necessary. Here the Doc has closed my EAP file. I have just such bad luck. I try and try to be up against this wretched diseaase but it always comes back and give me a slap in the face again and again saying deal with me now girl.
I am a heavily treated patient who has been in some form of chemo since 2000 Oct and have not got a days remission. Every drug works for a couple of months and then I have to swich to something else. I have taken all the chemos available her and also recycled some of them. I am at my wits end and feel like giving up but feel that it will be a terible thing to do to my daughters. Why am I doomed for this sort of suffering, my body is aching and crying out for some rest from this disease. I am praying so hard and trying so hard why are'nt my prayers being heard. I have been wishing for something new to come up and when it does that too is shortlived. I am loosing Zest for life, although OK with company there is a deep inward sadness. It is not that I am tahnkless to God, I would like to have a better quality of life. There is a fair amount of pain everyday, I have lost part of my voice and people cannot here in public places like markets etc, I get tired easily and feel very useless. The future also looks bleak cause the doc has to go on taxotere and herceptin.
I have taken taxol 5yrs ago and remember the body aches etc. He is proposing a weekly regimen 2weeks on and a week off. What do you say to people who say take it one day at a time. My today is bad and the coming months are going to be very bad so how can I be at peace with myself and get rid of the feeling of being useless and passing one day to another.
I know I am very low at the moment, just looking for some words from people who know how and what it is. Thanks in advance for any reply. Hugs
Ragini

So sorry to hear your distress Ragini. This disease can really test our will sometimes. You sound as if you have been extremely brave and upbeat to date. I can understand that it gets you down, that's the other side of course, the down side when we feel like its all been no use. But it is all part of the process I believe and you HAVE got this far. As you say you are usually pretty good. I say pat yourself on the back for your efforts and try not to expect too much from yourself. Sorry I can't be of any real help, but thinking of you. You are not alone in this. All the best.

Ragini,

As best as I can, I understand how helpless you feel. For me, who worries so much about losing his loved wife and mother of his children, I try and remember that there is a good possibility that tomorrow will bring a great new drug. While I struggle with that, it also helps to remember that we are never alone while we are communicating on this site. Here, there is a WEALTH of knowledge, consideration and love at your fingertips!

My thoughts and prayers are with you.

Hugs,
Eric

Ragini,
I have not had to endure this disease as long as you have, but I do know that it tests your very core of a being. You sound like you have done everything possible and are being given another chance to carry on. Tomorrow could possibly bring that one element that may change this course. You are not alone, we are always hear to listen, these folks are so caring and knowledgeable, and we will help in any way possible.
I always feel better after I have a good cry. Don't know why, put somehow it takes some of the sadness away.
My thoughts, prayers, and good wishes are with you,
Emelie

Ragini,

May God bless you and give you the strenght to stay strong. My Mother tells me everyday..."God will not put more on you than you can handle" You are still here sor a reason and that reason could be for your courage to fight and help others like you...

"Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine." ISAIAH 43:1

I too get down sometimes but I know that my family keeps me going...

God Bless and hang in there!

((((((((HUGS)))))))) Betty

Dear Ragini, I don't know what to say to comfort and inspire you, but please know that I feel your sadness and you are in my thoughts and prayers.
Peace and Blessings,

Ragini you do show one sign of hope...
 

Ragini: I am like you, except that I've never responded to any chemo or experimental drug at all, let alone for a couple of months. The only one was the EAP trial and I got about 5 weeks of response out of that before the Xeloda killed off a foot of my intestine and nearly killed me, and then the drugs stopped working since I had to go off them for a month. I have not experienced stability, let alone remission, in the 3.5 years since diagnosis. I am 41, with a 3-yr-old daughter.

The reason I say you have a sign of hope is because you DID respond to your various treatments, even if only for a short time. That is a good sign, it makes your chances of responding again that much higher. I'm terribly sorry for your pain, that is so wearying, and I understand your hopelessness because most of the time that is how i feel. I just started a new phase-II trial (Wyeth's drug HKI-272) that requires I fly 6 hours from Hawaii to Seattle every week for a while, then every other week. It is so fatiguing but I feel I have to keep trying. My mets are in my lungs, extensively throughout my lymph system, abdomen and skin.

By the way my hubby is from Singpore, and I used to live there. Are you treated at Queen E?

Theresa

Yes R, like Theresa and my onc nurses say, the people that fare the best are the ones who respond positively to most treatments. I know the process isn't pleasant, but once the side effects wear off, you're going to have a whole new attitude. Try starting Vit B6 now to ward off body aches from taxol. Ask the ons nurses, they know all.

I think it might be worthwhile getting back to the US to continue EAP, I'm assuming Tykerb.

Hang in there. We all truly care and know how hard this is. I adopted the one day at a time policy but I don't know how I would feel if someone else adopted it for me.

Take a vacation at the Useless Spa. You deserve it. Try to make it useful somehow,watching educational videos, smelling the flowers, but if it's not, so what? I hope you can find peace to continue fighting your disease.

Talk to people. It helps to spread the burden around. My best wishes to you. Bev.