Tarceva

I have read all previous messages & thank you all for the good information and detailed descriptions.  Details are good & we often don't get them from our Dr.

Tarceva has been suggested as a possibility for my wife but has not been prescribed yet. Her lung cancer has met. to her brain.

Have you heard of the "blood / brain barrior"?  We have been told that some chemo. therapies will not pass the blood / brain barrior & will therefore do no good for the brain tumor.

Does anyone know if Tarceva will pass the barrior?  Our Dr.'s reply to this question was vague and amounted to "I'm not sure if it will or not." , which I figured was her way of saying that it will not.

Thanks for whatever info. you may have.

Captain

On 5/24/2008 Captian wrote:

I have read all previous messages & thank you all for the good information and detailed descriptions.  Details are good & we often don't get them from our Dr.

Tarceva has been suggested as a possibility for my wife but has not been prescribed yet. Her lung cancer has met. to her brain.

Have you heard of the "blood / brain barrior"?  We have been told that some chemo. therapies will not pass the blood / brain barrior & will therefore do no good for the brain tumor.

Does anyone know if Tarceva will pass the barrior?  Our Dr.'s reply to this question was vague and amounted to "I'm not sure if it will or not." , which I figured was her way of saying that it will not.

Thanks for whatever info. you may have.

Captain

Hi Captain,

Rest easy.  If they put your wife on Tarceva consider it a blessing.  My oncologist told me that Tarceva is one of the few new targeted drugs that DOES cross the blood brain barrier.  None of the older chemos do.

I refused all standard chemo/radiation from the beginning and he started me on Tarceva and that is all I have ever taken.  As a result, I have never had any mets anywhere, including the brain. 

I have been on it for 21 months now.  Still working full time and doing everything I always did.  I wanted quality time, not just to exist and not be able to do the things I wanted to do.  And it has worked.  My last PET results a week ago (full body) came back with everything gone except one little 9mm spot in the right lung.  Tumors in the other lung are gone completely and all the others in the right lung are also gone but this one.

Ask what your wife's EGFR count is.  That's the key.  The higher the number the more likely tarceva will work for her.  And she must have had the test or her doctor wouldn't have recommended it probably.  Anything over 60 is good.  Mine runs between 85-98.  My CEA was 2.3 and my SUV was 1.5.  Doesn't get much better than that.

I've had a lot of prayers answered.  I've done a lot of research in that time.  Believe me the side effects from tarceva are nothing compared to what I have read about the standard chemo treatments.

I wish you luck and may God Bless you and your wife on this journey. Please let us know what you decide to do.

Chessie:

Thank you so much for your reply, it is most incouraging!!

I don't know what EGFR is, nor CEA, nor SUV.  (I thought SUV was what my neighbor drives.)

Are these results of blood tests?

Our best wishes go out to you for your continued recovery.

Thanks again.

On 5/24/2008 Captian wrote:

Chessie:

Thank you so much for your reply, it is most incouraging!!

I don't know what EGFR is, nor CEA, nor SUV.  (I thought SUV was what my neighbor drives.)

Are these results of blood tests?

Our best wishes go out to you for your continued recovery.

Thanks again.

Hi Captain,

My apologies for not providing further explanations.   The EGFR and CEA are blood tests.  The other is a result of the PET scan.  I have the blood work done every month. 

EGFR is epidermal growth factor receptor.  You can get a very technical explanation if you go to the www.tarceva.com web site. 

CEA is a tumor marker.  Results of 1-2.5 are normal for non-smokers and 2.6 - 5.0 are normal for smokers.

The SUV (not your neighbor's vehicle) stands for standard update value.  This is a means they use to determine progression of the tumor and to tell whether or not the chemo treatments are working.  1.5 is the baseline; the higher the number the more progression.  If the chemo regimen is working, the number should be going down.  I have  PET every 3 months.

Bear in mind that I am by no means a medical professional.  What I have learned is from personal experience through my oncologist and research.   Believe me, when I started,like you, I thought these were all just a bunch of letters and they didn't mean a thing to me.  Now they mean everything and I watch them like a hawk. 

Word of advice since you are just beginning this journey, be sure to get copies of ALL of your wife's test results, be it for blood work, CT, chest x-rays, or MRI.  Then keep a folder and compare them each time.  And if you ever need a second opinion or you are not happy with the response you are getting, you have everything ready to take elsewhere without having to repeat everything. 

And don't pay any attention to the stats you come across on the net.  They are so old and outdated it's funny.  They don't take into account any of the new modern treatments. 

The most important factor in beating this is a POSITIVE attitude.  You've got to believe and have faith that this is just temporary.  There will be days you just want to scream (and sometimes I do just that), but other days will be days you don't want to end because they are so good.  Keep your faith and may God guide you through this journey and help you find your way.  It is for sure a roller coaster ride.  But I have no complaints.  Once I got past the first couple months, I just made up my mind that I wasn't ready to go yet and I wanted my life to go on as it had.  And that's what I did.  Still work, go to flea markets, drive, argue with my husband, all those good things.  We've been married 36 years. 

So if I can be of help, let me know.  I'll be glad to share what I have learned.  

God Bless you both.

On 5/24/2008 Chessie wrote:

 

On 5/24/2008 Captian wrote:

Chessie:

Thank you so much for your reply, it is most incouraging!!

I don't know what EGFR is, nor CEA, nor SUV.  (I thought SUV was what my neighbor drives.)

Are these results of blood tests?

Our best wishes go out to you for your continued recovery.

Thanks again.

Hi Captain,

My apologies for not providing further explanations.   The EGFR and CEA are blood tests.  The other is a result of the PET scan.  I have the blood work done every month. 

EGFR is epidermal growth factor receptor.  You can get a very technical explanation if you go to the www.tarceva.com web site. 

CEA is a tumor marker.  Results of 1-2.5 are normal for non-smokers and 2.6 - 5.0 are normal for smokers.

The SUV (not your neighbor's vehicle) stands for standard update value.  This is a means they use to determine progression of the tumor and to tell whether or not the chemo treatments are working.  1.5 is the baseline; the higher the number the more progression.  If the chemo regimen is working, the number should be going down.  I have  PET every 3 months.

Bear in mind that I am by no means a medical professional.  What I have learned is from personal experience through my oncologist and research.   Believe me, when I started,like you, I thought these were all just a bunch of letters and they didn't mean a thing to me.  Now they mean everything and I watch them like a hawk. 

Word of advice since you are just beginning this journey, be sure to get copies of ALL of your wife's test results, be it for blood work, CT, chest x-rays, or MRI.  Then keep a folder and compare them each time.  And if you ever need a second opinion or you are not happy with the response you are getting, you have everything ready to take elsewhere without having to repeat everything. 

And don't pay any attention to the stats you come across on the net.  They are so old and outdated it's funny.  They don't take into account any of the new modern treatments. 

The most important factor in beating this is a POSITIVE attitude.  You've got to believe and have faith that this is just temporary.  There will be days you just want to scream (and sometimes I do just that), but other days will be days you don't want to end because they are so good.  Keep your faith and may God guide you through this journey and help you find your way.  It is for sure a roller coaster ride.  But I have no complaints.  Once I got past the first couple months, I just made up my mind that I wasn't ready to go yet and I wanted my life to go on as it had.  And that's what I did.  Still work, go to flea markets, drive, argue with my husband, all those good things.  We've been married 36 years. 

So if I can be of help, let me know.  I'll be glad to share what I have learned.  

God Bless you both.

Chessie,

Thanks for you posting. My Dad is also on Tarceva form the very begining. His doctor did not prescribe any chemo, he is 72. He is having a lots of side effects of the drug. Including weakness, rash rough skin etc. I am wondering how did you manage all these side effects.

Chessie:

Thank you so very much for your timely reply and excellent information and encouragement.

My wife started taking Tarceva on June 2.  So far,  she has had little side effect. 

I have one more question for the moment:  When taking some drugs, the Dr. will recommend drinking rather large quantities of water.  I have looked at the Tarceva site and the literature we got with the Tarceva but I see no such recommendation. 

Has your Dr. suggested drinking lots of water ?

Thanks again,

Captain

On 6/12/2008 Captian wrote:

Chessie:

Thank you so very much for your timely reply and excellent information and encouragement.

My wife started taking Tarceva on June 2.  So far,  she has had little side effect. 

I have one more question for the moment:  When taking some drugs, the Dr. will recommend drinking rather large quantities of water.  I have looked at the Tarceva site and the literature we got with the Tarceva but I see no such recommendation. 

Has your Dr. suggested drinking lots of water ?

 

Thanks again,

Captain

 

Hi Captain,

I don't recall reading anything about that either.  But my oncologist did advise me to drink a lot to avoid dehydration.  Personally I believe they tell all patients that because the standard chemo treatments will dehydrate you quickly.  I drink iced tea (about 2 gallons a day) and have never had to have any treatments for dehydration.  So I guess it makes sense.  

As for the side effects, they could take a couple of weeks before they appear.  She may also be one of the very fortunate few that doesn't get the side effects and the tarceva works anyway.  It's a wait and see kinda thing.  I'm still getting the rash off and on and it's been 21 months.  It's just not as bad now.

I'll do a little research on the water thing and if I find anything additional, I'll let you know.  In the meantime, I hope yoru wife is feeling better and may God Bless.