Tarceva, does it cure or just control

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Tarceva, does it cure or just control

by nevah on Sat Feb 07, 2009 12:00 AM

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Does anyone know if tests, maybe blood tests, can show if there is no more cancer in the body, that Stage IV lung cancer can be in remission.   I'm hearing that one must keep taking the Tarceva until it might not work on some of the cells and they start another tumor or something.   Is there a blood test that would show no cancer cells left and we could go off the Tarceva.    It does have side effects and a person doesn't want to harm their body if it is not necessary.

RE: Tarceva, does it cure or just control

by Chessie on Sat Feb 07, 2009 12:00 AM

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On 2/7/2009 nevah wrote:

Does anyone know if tests, maybe blood tests, can show if there is no more cancer in the body, that Stage IV lung cancer can be in remission.   I'm hearing that one must keep taking the Tarceva until it might not work on some of the cells and they start another tumor or something.   Is there a blood test that would show no cancer cells left and we could go off the Tarceva.    It does have side effects and a person doesn't want to harm their body if it is not necessary.

Hi Nevah,

I understand exactly what you are asking and why.  I have been on tarceva for 2 years.  Tarceva does attack the cancer cells and all of my tumors are either inactive or gone as a result of taking it.  However, my oncologist is keeping me on the drug because there can always be radical cells just starting and may not show up yet on the scans. 

The blood test you are referring to I believe is the CEA.  But that is only an indicator if the cancer is active or how active.  It is not a 100% reliable test but used as a guideline for the oncologist.  The PET scan will show if there is any activity going on in your body.   And even they are not 100% accurate as they can also show inflammation due to other causes.

Yes the drug has side effects.  But the flip side is if  you take the chance on stopping it, the cancer can get another foot hold if you have radical cells floating somewhere.  I chose not to take that chance and continue on with the tarceva.  The side effects are the lesser evil of the two.  But it is a personal choice. 

Talk it over with your oncologist.  And good luck with whatever you decide.

God Bless

 

RE: Tarceva, does it cure or just control

by annb64 on Sun Feb 08, 2009 12:00 AM

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I agree with your concern.  I do not like to take medications and haven't for most of my life.  However, after being a non smoker for my whole life and not being exposed to 2nd hand smoke from a spouse, parents, or roommates, and then being diagnosed with stage IV lung cancer - I agreed to take the Tarceva.  As my oncologist explained it to me, it works based on the principle of attacking the proteins in the cancer cells, not allowing them to grow and spread.  He indicated that I would be on the drug for life.  At this point, the drug hasn't been on the market all that long - just seven years, so scientists don't know all the effects or potentials of this drug (even though it was in clinical trials for years prior to FDA approval for use).  It is my understanding that the goal here is to control the cells, if not eradicating them.  The beauty of this drug is that it is targeted to these particular cancer cells, not taking chemo that attacks all the cells of your body (good and bad).  All drugs have side effects, but I'm choosing to live them.  My scans show that the drug is working.  While it may not be a cure, it certainly does improve my survival chances and isn't that what it's all about? 

Best wishes for your recovery. 

RE: Tarceva, does it cure or just control

by nevah on Sun Feb 08, 2009 12:00 AM

Quote | Reply

 

On 2/8/2009 annb64 wrote:

I agree with your concern.  I do not like to take medications and haven't for most of my life.  However, after being a non smoker for my whole life and not being exposed to 2nd hand smoke from a spouse, parents, or roommates, and then being diagnosed with stage IV lung cancer - I agreed to take the Tarceva.  As my oncologist explained it to me, it works based on the principle of attacking the proteins in the cancer cells, not allowing them to grow and spread.  He indicated that I would be on the drug for life.  At this point, the drug hasn't been on the market all that long - just seven years, so scientists don't know all the effects or potentials of this drug (even though it was in clinical trials for years prior to FDA approval for use).  It is my understanding that the goal here is to control the cells, if not eradicating them.  The beauty of this drug is that it is targeted to these particular cancer cells, not taking chemo that attacks all the cells of your body (good and bad).  All drugs have side effects, but I'm choosing to live them.  My scans show that the drug is working.  While it may not be a cure, it certainly does improve my survival chances and isn't that what it's all about? 

Best wishes for your recovery. 


Isn't it something that non-smokers and those not even affected by 2nd-hand smoke are still getting this lung cancer.   At Lung Cancer Alliance, they say that 65% of new diagnoses are nonsmokers or those who have quit.   It's attacking for other reasons also.   Lung Cancer Alliance is a group advocating for lung cancer, trying to get some of the research dollars and work on early detection.   If lung cancer can be detected at Stage 1, there can be 92% survival for 10 years, instead of at Stage 4 with 15% survival at 5 years.   Amazing.    About the side effects for Tarceva, we have heard that it targets fast growing cells, not just the proteins in cancer cells, and that is why we get some of the side effects we do.    I wonder if it targets the skin, liver, stomach, or what.  You say your oncologist explained that it targets just the cancer cells.    We do not understand exactly what else it hits and don't want to continue it any longer than we have to if the cancer is gone.   They say it is never "gone," that a cell may always be lurking about, there is no blood test to show, and we must continue Tarceva as long as it is controlling.    Like you, we have never believed in taking unnecessary stuff because it usually causes some harm in the healing.    Meanwhile, we're very happy with the success of Tarceva on the cancer and the quality of life it gives during treatment!   In 4 months, the cancer doesn't show on the tests.   I did not smoke, but did live with some 2nd-hand smoke til 18.  

RE: Tarceva, does it cure or just control

by nevah on Sun Feb 08, 2009 12:00 AM

Quote | Reply

 

On 2/7/2009 Chessie wrote:

 

On 2/7/2009 nevah wrote:

Does anyone know if tests, maybe blood tests, can show if there is no more cancer in the body, that Stage IV lung cancer can be in remission.   I'm hearing that one must keep taking the Tarceva until it might not work on some of the cells and they start another tumor or something.   Is there a blood test that would show no cancer cells left and we could go off the Tarceva.    It does have side effects and a person doesn't want to harm their body if it is not necessary.

Hi Nevah,

I understand exactly what you are asking and why.  I have been on tarceva for 2 years.  Tarceva does attack the cancer cells and all of my tumors are either inactive or gone as a result of taking it.  However, my oncologist is keeping me on the drug because there can always be radical cells just starting and may not show up yet on the scans. 

The blood test you are referring to I believe is the CEA.  But that is only an indicator if the cancer is active or how active.  It is not a 100% reliable test but used as a guideline for the oncologist.  The PET scan will show if there is any activity going on in your body.   And even they are not 100% accurate as they can also show inflammation due to other causes.

Yes the drug has side effects.  But the flip side is if  you take the chance on stopping it, the cancer can get another foot hold if you have radical cells floating somewhere.  I chose not to take that chance and continue on with the tarceva.  The side effects are the lesser evil of the two.  But it is a personal choice. 

Talk it over with your oncologist.  And good luck with whatever you decide.

God Bless

 

Thank you so much for our answer.    It appears it is chance of cancer growing again, coming back, vs. chance of damage by the drug.   Of course, the cancer danger is the rattlesnake and must be fought.   Maybe we'll learn more as the years go on.   Maybe they'll know if the cancer is gone.

Does "radical" mean it is one of those cells that has mutated and Tarceva can no longer kill it?   Or is it a cancer cell that Tarceva has not killed yet but we do not know that for sure so we should stay on the drug.   Do we just stay on Tarceva until (or not) the cancer starts growing again, and then we have to switch to something else.    That is what I've been hearing.

 I'm still a bit confused but trying to pursue lines of thought.   Controversy is not my strong point, but they say a cancer patient must learn to advocate, seek answers.  I'm trying.   Hope this helps others also.

 

RE: Tarceva, does it cure or just control

by Chessie on Sun Feb 08, 2009 12:00 AM

Quote | Reply

 

On 2/8/2009 nevah wrote:

 

On 2/7/2009 Chessie wrote:

 

On 2/7/2009 nevah wrote:

Does anyone know if tests, maybe blood tests, can show if there is no more cancer in the body, that Stage IV lung cancer can be in remission.   I'm hearing that one must keep taking the Tarceva until it might not work on some of the cells and they start another tumor or something.   Is there a blood test that would show no cancer cells left and we could go off the Tarceva.    It does have side effects and a person doesn't want to harm their body if it is not necessary.

Hi Nevah,

I understand exactly what you are asking and why.  I have been on tarceva for 2 years.  Tarceva does attack the cancer cells and all of my tumors are either inactive or gone as a result of taking it.  However, my oncologist is keeping me on the drug because there can always be radical cells just starting and may not show up yet on the scans. 

The blood test you are referring to I believe is the CEA.  But that is only an indicator if the cancer is active or how active.  It is not a 100% reliable test but used as a guideline for the oncologist.  The PET scan will show if there is any activity going on in your body.   And even they are not 100% accurate as they can also show inflammation due to other causes.

Yes the drug has side effects.  But the flip side is if  you take the chance on stopping it, the cancer can get another foot hold if you have radical cells floating somewhere.  I chose not to take that chance and continue on with the tarceva.  The side effects are the lesser evil of the two.  But it is a personal choice. 

Talk it over with your oncologist.  And good luck with whatever you decide.

God Bless

 

Thank you so much for our answer.    It appears it is chance of cancer growing again, coming back, vs. chance of damage by the drug.   Of course, the cancer danger is the rattlesnake and must be fought.   Maybe we'll learn more as the years go on.   Maybe they'll know if the cancer is gone.

Does "radical" mean it is one of those cells that has mutated and Tarceva can no longer kill it?   Or is it a cancer cell that Tarceva has not killed yet but we do not know that for sure so we should stay on the drug.   Do we just stay on Tarceva until (or not) the cancer starts growing again, and then we have to switch to something else.    That is what I've been hearing.

 I'm still a bit confused but trying to pursue lines of thought.   Controversy is not my strong point, but they say a cancer patient must learn to advocate, seek answers.  I'm trying.   Hope this helps others also.

 

By radical I meant a cell the cancer hasn't found and killed yet but is already in the body. 

As for controversy, I guess I've always been pretty good at that because I can;t/won't  take things at "face" value.  I have to know why.  When I learned I had cancer, I asked a million questions and was on the internet all the time, and still am when I come across something that I don't know about or am confused about.  That's how you get answers.  And the personal experiences from people on these boards also helps tremendously but you have to decide for yourself IF the treatments, etc. can be beneficial for you.  And only you can make that decision.

One thing I have learned about tarceva in the past six months is that used over long term it can cause myalgia.  Since the drug was so new when I started it, there were no long term patients so they didn't know about it.  But it is now coming to light.  Not everyone will get it but some do.

Keep fighting and asking your questions. 

Good luck and God Bless

 

RE: Tarceva, does it cure or just control

by dradhakrish on Tue Feb 05, 2019 08:27 PM

Quote | Reply

On Feb 08, 2009 12:00 AM annb64 wrote:

I agree with your concern.  I do not like to take medications and haven't for most of my life.  However, after being a non smoker for my whole life and not being exposed to 2nd hand smoke from a spouse, parents, or roommates, and then being diagnosed with stage IV lung cancer - I agreed to take the Tarceva.  As my oncologist explained it to me, it works based on the principle of attacking the proteins in the cancer cells, not allowing them to grow and spread.  He indicated that I would be on the drug for life.  At this point, the drug hasn't been on the market all that long - just seven years, so scientists don't know all the effects or potentials of this drug (even though it was in clinical trials for years prior to FDA approval for use).  It is my understanding that the goal here is to control the cells, if not eradicating them.  The beauty of this drug is that it is targeted to these particular cancer cells, not taking chemo that attacks all the cells of your body (good and bad).  All drugs have side effects, but I'm choosing to live them.  My scans show that the drug is working.  While it may not be a cure, it certainly does improve my survival chances and isn't that what it's all about? 

Best wishes for your recovery. 

Hi annb64, my Mom (aged 74) has been diagnoized with Stage IIIb with the EGFR mutation. She is on tarceva and after 2 month the tumour has shrunk to 1/3 of what it was before. I am hoping it works on her to completely get rid of of it and as you said it might be prudent to continue. Not to be intrusive, but it has been 9 years since you posted this and not sure if you are following this chain, but was wondering how you are doing with this medication so far.

Appreciate your feedback and if you dont want to reply would understand.

thanks
Dinesh 

RE: Tarceva, does it cure or just control

by s.njfi on Wed May 01, 2019 07:55 AM

Quote | Reply

On Feb 05, 2019 8:27 PM dradhakrish wrote:

On Feb 08, 2009 12:00 AM annb64 wrote:

I agree with your concern.  I do not like to take medications and haven't for most of my life.  However, after being a non smoker for my whole life and not being exposed to 2nd hand smoke from a spouse, parents, or roommates, and then being diagnosed with stage IV lung cancer - I agreed to take the Tarceva.  As my oncologist explained it to me, it works based on the principle of attacking the proteins in the cancer cells, not allowing them to grow and spread.  He indicated that I would be on the drug for life.  At this point, the drug hasn't been on the market all that long - just seven years, so scientists don't know all the effects or potentials of this drug (even though it was in clinical trials for years prior to FDA approval for use).  It is my understanding that the goal here is to control the cells, if not eradicating them.  The beauty of this drug is that it is targeted to these particular cancer cells, not taking chemo that attacks all the cells of your body (good and bad).  All drugs have side effects, but I'm choosing to live them.  My scans show that the drug is working.  While it may not be a cure, it certainly does improve my survival chances and isn't that what it's all about? 

Best wishes for your recovery. 

Hi annb64, my Mom (aged 74) has been diagnoized with Stage IIIb with the EGFR mutation. She is on tarceva and after 2 month the tumour has shrunk to 1/3 of what it was before. I am hoping it works on her to completely get rid of of it and as you said it might be prudent to continue. Not to be intrusive, but it has been 9 years since you posted this and not sure if you are following this chain, but was wondering how you are doing with this medication so far.

Appreciate your feedback and if you dont want to reply would understand.

thanks
Dinesh 

hi dear

sorry I want to know if your mum have pain in bone, muscles and joint and also nausea and lack of appetite.

If yes what do you do for her?

thank you for your answering.

RE: Tarceva, does it cure or just control

by dradhakrish on Wed May 01, 2019 09:53 AM

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she does not have pain but the tarceva is giving her a lot of rashes and continuous itching (not to mention loose motions once a day).

RE: Tarceva, does it cure or just control

by s.njfi on Wed May 01, 2019 09:57 AM

Quote | Reply

On May 01, 2019 9:53 AM dradhakrish wrote:

she does not have pain but the tarceva is giving her a lot of rashes and continuous itching (not to mention loose motions once a day).

thank you. what about nausea?

does she have nausea?

how many year does she take tarceva?

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