al from Canada vbmenu_register("postmenu_77794", true);
Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 465
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Hi Lu ann,
I'm a very strong believer that when the Xeloda dosage was set in the phase 1 trials, it was set at least 30% too high. Linda started off with 3500 mg, 1750 twice daily for 14 days. She had symptoms of the hand-foot syndrome but what was really dose limiting was the neuropathy in her hands and the low blood counts, which were so low they were difficult to bring back up. We dropped the dosage to 3000 mg; 1500 2 x day for 14 days, and that resolved the neuropathy and hand-foot symdrome but there was still the blood count problem; albeit not as bad. We then changed the dosing schedule to 10 days and although her blood counts are still low by the end of the dosing schedule, we have time to bring them up with 5 shots of neupogen on days 12 through 16. This seems to work. All the research has shown that reducing the dosage (as much as 50%) doesn't effect the anti-tumor activity. As well, there are a multitude of clinical trials out there on herceptin + xeloda + another drug....that may be worth looking into. Linda will answer part 2 of your question.
Dear Lu Ann,
I was quite surprised to have received so many responses related to Al's posting about the PET scan results. I appreciate all of the positive remarks and good wishes. I can understand your comment that you feel depressed and feel like stopping some treatment. No one ever said that this journey would be brief or smooth. It certainly isn't. I too feel depressed. Even though I go to the hospital once every three weeks, I hate going and now comment that I don't want to go. When I arrive at the hospital, I am cordial, but never happy to be there and I rarely talk to other people. I take a book and just put in the time. I, too, feel depressed about the never-ending piles of suppliments and pills, the changes made to our lifestyle and the awareness that I will most likely be "sick" for years to come. The trips to the hospital have become a vital part of my monthly schedule and will continue to do so for some time. As a result, I do take Celexa, low dose, to take the edge off the situation.
In terms of my diet I have made few changes. We rarely eat out. We eat more fruits and vegetable. I minimize white foods i.e. rice, white bread. I feel that now I need to do more homework in this area. I have not met with a nutritionist since becoming ill. This week I am attending a workshop that is related to diet and cancer. I intend to make changes after the workshop.
Since becoming ill, I have been forced to change my daily life. I no longer teach. I see only family or close friends. I have no time or patience to deal with negative or thoughtless people. I have met many of them, and don't miss them at all. I have taken up yoga to help imporove my coordination and balance. I read voraciously, mostly fiction. I am a mother of 5 fine daughters and sons. Three of them still live with us, while the other two work and attend school elsewhere. It has been a struggle reorganizing my new life so that my sickness won't dominate everything. I have a cleaning lady who comes once every two weeks. I don't feel comfortable pushing more of the household chores on Al and the children as they have made so many adjustments already. I now go to the spa for facials and am sure to wear clothes that fit me, rather than the nice ones that I have that are now 20 pounds too large.
In closing, every day I struggle to minimize the number of thoughts related to my sickness. I don't dwell on the statistics related to the disease. I am not the kind of person who wants to know everything about my illness. I know that Al does his homework and we discuss options often. Even though doctors have suggested that the end was only weeks away, twice, I never accepted their comments. I keep thinking about what book I'd like to read or what I would like to do. My family is my support. I need to be strong because they have been strong.
Know that you are only minutes away from support by your friend on the site should you need them. You are welcome to send messages to me, so that I know how you are progressing. It is quite a journey, and I most certainly don't envy those who join our journey. But I believe that I will get better. If my life continues along the way that it is now, I know that I am loved and blessed. I hope you realize just how much you are too. Your new friend, Linda
I thought you would like to read a post that Linda sent last October. She was such an inspiration for me to not give up. Linda was weeks away from death when I first came on board two years ago. She defied all the statistics and fought a grueling fight with Al and her family by her side. Linda may have lost her battle with breast cancer, but she has won her reward with everlasting life in Heaven. She and Al are true heros.
Love and Blessings
Lu Ann
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