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HI GRANDMA2, Yes 5 is the standard dose but I can barely tolerate 3, so I am my own Dr. I have gone from 2 to 3 and on the 6th and 7th day of 3, I can hardly get out of bed. I have never taken systemic chemo since my first diagnosis in 2001 when I had 2 lumpectomies and did 35 radiations and 5f4u and cytoxin or something like that. I did not take adriamycin, again being my own DR.
My metastasis began in 2004 with liver, lungs, and bones, very dire diagnosis, but took femara for 6 months, which again was all I could stand and changed my diet totally to Macrobiotics (which is a treatment in itself, that many people would prefer to take chemo) Anyway, when I began having the brain tumors we found I was no longer stable in the mets, so I started on Herceptin. I tried xeloda but absolutely could not have quality of life with it, so now I am on Tykerb alone. I don't know if it is helping me or not, but I prefer quality over treatment. I also do diet and hypnosis and massage. I won't have another PET for 3 months but my MRI is due this month for the brain tumor follow up. I am on Tykerb aminly to stop the brain tumors since it has proven to go accross the blood brain barrier. I juice green vegtables every day and drink Green magma and take 3 Tykerbs. Have not had diarhea, but have real fatigue. I am almost 70 and extremely active so I tire out in about 4 hours. Still doing fun stuff FIRST,but do take naps every day.I do take them at night an hour or more after I eat. When I get sick on the 6th or 7th day, I go back to 2. I have been proactive with the disease for 7 years, and I now get Zometa evry 4 weeks as before I got it every 3 weeks. I do believe it has helped in the bone progression. Ibelieve I am cancer free everyday and tell everyone I know to pray for my health and that I feel GREAT!!! I don't want anyone to think of me as being sick or having the big C.
I hope you the best. I do have brain confusion and find it worse when I get tired. sometimes my mind is totally blank. I take ativan for my anxiety and it helps keep me calm. I believe th more stress free we can live the better. I am in the middle of a move, and my mantra almost every minute is : I'm cool, calm, collected, relaxed and easy going." Many people have NO side effects with Tykerb. I am rambling, but I did remember that I do have a slight rash on my face and the finger nails and toe nails are paper thin and the ends of my fingers are very tender. I think that if that is all there is, then I can stand that. I just can't stand not being able to get out of bed every morning.
LOTs of love to you. Write me back or call me 904 881 8428. This is a great site, I have just not been able to get on it recently because I am moving. Love, Mary Jeanne
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