Al, How did Linda tolerate the xeloda?

[lu ann]

Al and Linda, I'm so glad to hear that things are headed in the right direction for you. I've been following your case since spring 04 when I first found this sight. I have mets to spine, pelvis, mediastynem, and pleural effusion. I've been on herceptin, taxol, and carboplatin for six months; herceptin and navelbine for 2 months; herceptin and gemsar 2 months; a 3 month break; then back on herceptin and gemsar since August; and zometa monthly. My CA15-3 was at it's peak at 345 before rad. tx. and chemo. After 6 months on the her., tax., carb., they were down to 21. After going on navelbine they started to climb and are currently in the 90's. I will be seeing my doc. next Fri. and have a feeling I might be going on something new if my counts haven't come down. I think xeloda was the next option. What kind of effects did Linda have from the xeloda. And how has she gotten this far emotionally. I am starting to get depressed again and not wanting to continue tx. I really don't want to take any more drugs but I might need to take an antidepressant. What kind of diet does she eat and what supplements do you recommend? Thanks and God Bless You and your family. Lu Ann.

[al from Canada]

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

[Sandy H]

Linda it was so good to hear from you not that we don't enjoy Al because we all do!! I can relate to so many things you mentioned in your post. This really does turn your life upside down. After going through the first year of thinking I was going to die any day I finally came to realize I probably wasn't going to die tomorrow. Just when I started moving on and accepting my illness, being unemployed, giving up some of my independance and making new friends then my husband starting having medical problems one after the other. When I was doing well he wasn't and when he was doing well then I wasn't such a roller coaster for another year. We were relying on friends for rides, meals, house cleaning. I was too tired to do much and he was having surgeries. There were times when a friend would come to pick me up for an appointment and their spouse would pick up my husband for his appointment. Some of his surgeries I was too tired and wiped to be at the hospital none of our friends offered to stay with either one of us!! I don't think they realized never been there or done it. I think if we both had been younger or only married for a short that our marriage would not have survived. It has been a struggle for both of us and I had to keep telling my husband wouldn't you rather be able to do some things then nothing? He thought he had to be able to do everything and still thinks that at times. I have 2 cleaning ladies that come in every two weeks because neither of us can vaccum wash floors etc. It is a full time job for me keeping up with doctor appointments ( I hate them too ). I do talk to lots of people and the nurses call me the social butterfly in oncology. Most like to talk a few don't and I can respect that. As soon as my IV is going I am up and walking about the place I hate to set, don't like TV much. I am involved in 3 support groups, do phone support to other BC patients, do and monthly newsletter at church and take art classes. I am going to do just as much as I can as long as it keeps me from getting ill. People ask me when I am going back to work! I do lots of things but they are at my convenience. Some days I don't do anything. We are all different and have to do what we have to do. The treatments take a toll on us and so have to work around them. Some people just don't get it. Like you said it takes time to keep up with supplements, eat well, exercise, do these darn appointments. I have rambled on long enough. We all know what it is like on this journey. I am thankful I do have a spouse. I just don't know how a single person does it on their own!!! Looking forward to meeting you soon. I am sure we will have lots to share. hugs, Sandy

[Gina]

Of course, we all love to hear from Al, but hearing your side of the story tonight just really inspired me. I am one of those single mothers with her-2 mets that Sandy mentioned and I am too poor to have any house cleaning help and have no one to drive me to treatments so I have to walk to and from, but at least it is only 2 miles both ways...sighhh.. I was on Social Security disability for a while when I had the 12 tumors in my liver, but "earned too much money" about $250 dollars over the limit in the U.S. that year which was $8,000.00 so the social security fined me $33,000, and I had to go back to work almost full time and try to pay it back while trying to work in my daily supplements and diet and walk regimen, herceptin, blood tests, research, scans, appointments blah blah blah. It did not matter to my government that I had mets to the liver, pelvis and bone...sigh... and that I was a single mother with no other income. The sad truth of my daily reality which is running non- stop from 7:21 am until around 2:21 am each day (except Saturday), is that my daily life is so hard --no joke--that now, I actually look forward to my herceptin infusions as that is the only time I get to have a break...sad but true. I usually take the day after treatment off work too which is a real treat. My son has been very damaged by my cancer experience as he was only 6 when it started and has suffered through things no child should ever face. There was a time when we literally had only Ramen noodle soup to eat....

Before Breast Cancer, I had a wonderful life. A dream career in database marketing and artwork coordination at the Smithsonian Institution and on the side, I owned my own multi-million dollar company with a partner. I got sick, then my partner died two years later of a cancer very similar to mine and I nearly lost everything and was left in tremendous debt--business and personal, but I am still here. Her-2 mediated Breast Cancer has taken away from me so many things I wanted in my life and has given me a life I would rather not have, but at least I continue to live for my son. He is 14 now and doing better. I am doing better too, despite being told a number of times as you were, that I didn't have long to live. (DX in 1997, mets since 1999 have used herceptin alone off and on since then.) I too have struggled with liver mets again and again, but found them not so painful as the one bone met I have now in my sternum as when it gets out of control, the pain makes it hard to drive or even dress myself. As I rely on my hands and arms to earn my living (I now own my own database/bookkeeping company), my biggest fear is what will happen to me if the cancer gets so bad, I can no longer use them.

But, if it is any consolation to you, I really think we will solve the her-2 part of the puzzle very soon. Your husband is a very bright guy and brings REAL knowlege, help and hope to many on this board and you are really blessed to have him on your side. Because of his great love for you, he has taught us all a lot. You are a very special lady.

Stay strong, you are a positive and gracious role model for us all,

Gina

[lu ann]

Thankyou so much for your lovely letter. Just when I was feeling that I can't do this any more, I'm sent people who inspire me to go on. You have given me some great tools that I will use. I really try not to dwell on the negative side of my life. When the thoughts of future treatments come to mind, I am able to think of other things that bring me joy. I watch silly shows such as "Everybody Loves Raymond" and "That 70's Show". I also listen or watch television evangelists who have uplifting messages of hope. My favorites are Joel Osteen and Joyce Meyer. Thankyou, Linda, for writing to me. It is a privilege to finally meet the woman behind our friend Al. He truly loves you and cares about all of us fighting this battle.
God Bless All of You. Your Friend, Lu Ann.

[Lyn]

Hi all, and of course my 2 cents worth, it is truly amazing finding out what all you lovely ladies endure, just when I think I have had it, I am not doing this anymore, why should I torture myself physically and emotionally and consider that the here after is looking pretty good, I come back to reality and keep plodding on. I have been doing this non stop since 1998 and not only do I need an anti-depressant for depression I found out early in the piece that it is documented that chemo works better with an anti-depressant, I had to show the info to my GP and me being me let her keep it, some how by relaxing the body the treatments work better, a bit like artificial yoga, but also the one I am on is one of the older ones Prothieden and is used in the pain management of Fibromyalgia and it is not addictive like some others. Just recently I was feeling really depressed and suggested changing it and she reminded me that I needed it for my Fibromyalgia, in a dumb moment I had forgotten this but she hadn't so I just increased the dose from 25mg to 50mg and I brightend up a bit, I am not jumping hoops yet. Like so many other patients, pain always puts a different slant on things and when it is relieved we then look at things differently. After all of these years I get a bit tired of hearing "you have to stay positive you must fight on", and I just think why am I torturing myself , and I look into the eyes of who is telling me this and I then know why, you do it for unconditional love, so I have my own little pity party for a while and get back with the program ready to fight another day. I arrived at my brother's 60th birthday party tonight late, and I just burst out and said well I know I am late but you can expect me to be at least 40 years late for my own funeral so I am in training. God bless you all.

Love & Hugs Lyn

[sarah]

Wow! Isn't this site fantastic! Not only do you learn so much practical and helpful information but you hear from people who suffer and understand what you're going through.
You are all so brave, strong and inspiring.
Also I now know other people have had the same problems - insensitive friends, loss of the ability to do your old job, trapped by tri-weekly injections, husbands with severe medical problems, weird side effects, depression, etc. etc.
I think seeing and interacting with other people is important - my true friends have been amazing and a great support group as well of course as my husband and those of us with husbands or families are lucky - i can't imagine what is like to be alone with this.
Perhaps because I'm so afraid of the day they will tell me they won't pay for my Herceptin anymore, I look forward to and am so thankful to be getting it that I thank every nurse at the hospital every time I go and tell them how appreciative I am! I also take them chocolate and cookies every so often because I know the stress they suffer.
I've made some friends in the chemo ward and now go with a cancer buddy with HER2 to chemo - she lives in the next village to mine and her husband very sadly died recently. She also had to give up her career because of her illness.
My heart goes out to those of you who are suffering and struggling.
My husband looks at problems as tests - how we go through them, sort of "what doesn't kill you, makes you stronger" philosophy. Well, all of you out there, help make me stronger and I hope I can return the favor.
A big hug to all of you
stay well, be happy
Sarah

[kristen]

I am not in the same boat as you ladies are, but I just wanted to say, that I admire you all so much. You are so strong and have such healthy attitudes. You bring so much to this board, compassion, love, understanding, comaraderie, insight, you make this board what it is and I for one want to thank you for you. This board has answerd some of my dumbest questions, has empowered me to be my own best advocate and gave me hope.

You are ALL my heros. Thank you.

[lu ann]

The only dumb questions are the ones we don't ask!

[mamacze]

Dear Linda,
We all love Al, but how nice to have you post for us gals as well. It seems like you too have been through hell; but have surfaced to warm in the love of your husband and five beautiful children. Thank you for sharing your story with us. And thank you to Al for all the wonderful advise and counsel he has shared as well.
Love Kim From CT