Any STag 3 taking Tykerb monotherapy as preventive treatment

[Rupali]

Hi all,
I am trying to find if there is any other stage 3 on the site who is taking TYKERB as a monotherapy on preventive basis.
If yes, then how long they are planning to take?
Did they get insurance to pay for it? If not then how did they manage.
Are you taking it togethre with Herceptin?

Regards,
Rupali

[Mary Jeanne Phillips]

Hi , I am taking Tykerb by itself as could not tolerate xeloda. Mine is actually stage 4 mets to liver, lungs, bones and brain. All I have taken in the past is Femara for 6 months and now herceptin for almost 2 years. I am counting on it to work. We believe it will interfere with the progression and especially going accross the blood brain barrier. If it doesn't cause you any side effects why not try it. ? MJ

[doh2pa]

Mary Jeanne,

I understand you were unable to tolerate Xeloda. It can really be hard. However, are you and your onc thinking of replacing it with another chemo? I am on Tykerb with Gemzar and Avastin for stubborn liver mets. So it really can be combined with other things besides Xeloda.

Just a thought.

[grandma2]

herceptin and tykerb are both targeted therapies for her2+ however the work differently. herceptin targets the receptors on the outside of the cancer cells while tykerb enters the cell and tries to destroy it from there. very simplistic explanation.
i am curious though. i'm supposed to be on xeloda and tykerb. stopped xeloda after 1 week temporarily i think. i thought with stage IV these were given (especially tykerb) indefinitely until it stopped working. that's what was done with herceptin. i got mets and then continued to progress on herceptin so it was stopped. i've read posts from some ladies saying they were on one or the other for short periods of time. was that because of tolerance problems or effectiveness. i thought once i stage IV i would be on something until the end. i'm getting more and more confused but of course since i started these drugs my brain is shot ...and i was feeling so well before mets or no mets.

[Mary Jeanne Phillips]

Hi grandma2, does that mean you have 2 grands or you have been a grandma 2 times???
I have 4 grands, 2 are 15 and 16 and the little ones are 5 and 6. I have been lucky to have babies for 10 years. The 7 year year old New years eve was born on the last day of my chemo in 2001. The 5 year old came when I was diagnosed with mets to liver bones, and lungs. I got over that, but now it has met to the brain. that is the reason I want to take Tykerb successfully.
It is no wonder you are confused with who is taking what. I kind of tell the Dr. what I will tolerate and take and what I won't I base it totally on my quality of life. If I can't get up in the morning and have a decent or half decent day, then it is not worth living. (that is NOT living as far as I am concerned) When I was getting chemo and radiation in 2001, I said that was as close to hell as I ever wanted to get.
I had my zometa yesterday and told my onc I was tolerating 2 well but 3 after 6 days I could not get out of bed I hurt so badly and I would take 2 and then 3 every other week. I will have a PET in Oct. just to see if things have changed. I have an MRI for my brain to see if the brain tumors have gone completely and no ones formed. I pray that is what they will find. I had craniotomy 2 years ago and Gamma knife twice for 2 tumor each. 60 days ago was my last Gamma.
I HAVE NEVER HAD ANY SYMPTOMS FROM ANY OF THE METS. If I had not been going to the Dr. for my check ups I would have never found any of them until it was too late. Myblood tests always showed me cancer free when I was in the middle of mets. I started Herceptin in Dec. after my brain mets. It will 2 years in Dec. We have stopped that but now with the new studies out and verified, if there is no change, we may do both Tykerb and Herceptin.
I feel fairly good. My energy level only goes so far but on 2 tablets and rest it is not so bad.
I tried to explain the the Dr. yesterday about the confusion. He asked it it was like a brain freeze? I said if that meant your brain just locked up and you forgot what you were doing or why you were looking at somethingor for something, then YES!!!
All I can say my friend, is we are all so different. I am almost 70. I have done everything healthy and holistiic, massage, juicing, macrobiotic, hypnosis, prayer, hands on healing, positive affirmations and visualizations. I don't think it matters. I believe we must stay positive and not STRESSED,. I say I am cool calm collected, relaxed and easy going a hundred times a day and I am healthy and well with LOTS of energy. I believe if our sub conscious hears that and believes it. When I get depressed I think of something funny my grands have said or remember their smiles and hugs of love when they are around me. When I hurt and can't get out of bed, I get really depressed, so that is the main reason I won't take systemic chemos, but then as my children remind me, most people would rather do that than eat macrobiotically. So we are all different.
You are a magnificent child of God and He has a plan for you and ME, so we must seek to do our best to love others and ourselves and make a difference in someones lives. Live like today is the only day we have, and make sure the drawers are cleaned out and the family knows our wishes.
Much love, Mary Jeanne

[grandma2]

i have 2 little boys who are the light of my life. the little guy is 3 and the big guy is 5. i've got 3 kids but only one is married and a dad. these boys have gotten me thru so much. i adore my kids but my grandsons are my joy (one of the last ones in my life i might add). you mentioned that you may be doing herceptin and tykerb. when i recently asked my onc about that she dismissed it quickly. i'm beginning to think she is too rigid and narrow minded and will not stray from the accepted protocols. being strongly her2+ i know i have to do what i must to live. since i had progression the last few months on herceptin, it's out of the question now as far as she's concerned. some big decisions for me soon i fear. i'm in south jersey and no big cancer centers with my driving ability so it's a tough decision. oh i'm also er/pr- so i'm somewhat limited in what i can take. my mets so far are confined to the nodal system in abdomen area, nothing in lungs, bones, liver, etc. yet she still is pessimistic with me. very frustrated. i pray each night for the wisdom to make the right choices. God bless, gm