bone pain increasing from Tarceva?

Hello..my mom was diagnosed with NSCLC in Jan. 09..it had already metastisized to her spine and ribs at the time of diagnosis.  She had 4 rounds of Taxol/Carboplatin...4 rounds of Zometa...3 rounds of Evastin.  She seemed to tolerate the IV chemo treatments great...maintained her weight and appetite, was able to reduce her morphine to once a day, and seemed to be doing really well--.  She had a CT about 5 weeks ago and the primary tumor had shrunk almost 90% and one of the tumors in her spine is gone.  Her doctor started her on 150mg Tarceva and after about 2 weeks, everything seemed to go downhill fast.  Bone pain in her back became constant and more severe; her appetite is almost completely gone; she has a constant horrible taste in her mouth...she is really suffering.  She had verteplasty done 2 weeks ago for the bone pain in her back, and it did nothing.  Her doctor does not want to take her off Tarceva...she is back on large doses of morphine to help with the pain, which doesn't seem to be working well anymore.  Any help, suggestions..on the bone pain and the appetite would be so great.  She says everything tastes like poison.  This is such an awful disease and any help would be very much appreciated.

 

On 5/27/2009 suzandnut wrote:

Hello..my mom was diagnosed with NSCLC in Jan. 09..it had already metastisized to her spine and ribs at the time of diagnosis.  She had 4 rounds of Taxol/Carboplatin...4 rounds of Zometa...3 rounds of Evastin.  She seemed to tolerate the IV chemo treatments great...maintained her weight and appetite, was able to reduce her morphine to once a day, and seemed to be doing really well--.  She had a CT about 5 weeks ago and the primary tumor had shrunk almost 90% and one of the tumors in her spine is gone.  Her doctor started her on 150mg Tarceva and after about 2 weeks, everything seemed to go downhill fast.  Bone pain in her back became constant and more severe; her appetite is almost completely gone; she has a constant horrible taste in her mouth...she is really suffering.  She had verteplasty done 2 weeks ago for the bone pain in her back, and it did nothing.  Her doctor does not want to take her off Tarceva...she is back on large doses of morphine to help with the pain, which doesn't seem to be working well anymore.  Any help, suggestions..on the bone pain and the appetite would be so great.  She says everything tastes like poison.  This is such an awful disease and any help would be very much appreciated.

Isn't fighting this disease a major battle though.  Sorry to hear your Mom is feeling this way and glad her first treatments worked to knock back those tumors.    Mine were reduced to almost nonexistent by the Tarceva and the bone grew back..    About Tarceva, It is usually known to do less damage to the body than other treatments..   Did your encologist say why he wanted to switch your Mom to Tarceva?    I don't understand how the different med would affect the bone pain that fast.   Have not heard that horrible taste is result of Tarceva.   Maybe that's from the morphine.   Maybe she still had some weak bones and a piece broke off or something?   Really sorry to hear all this.      That Zometa should help increase the strength of those bones.     Maybe someone else will have something more definite and specific to add to this.   I'm no medical expert, just a  patient who has taken Zometa and Tarceva and it worked.   My encologist said it is always just fine to seek 2nd opinions.   You might get something better, or you might get the same and feel confident that you're getting the best treatment possible.   Insurances, even Group Health, will often pay for those 2nd opinions. 

My suggestion is to get second opinion or ask oncologist opinion to reduce it to lower dosage .

The normal side effect shud be rash , hv not heard about bone pain for tarceva .

Anyway, everyone may have different side effect and different respond to the drug.

There's many in the message board confirm they are doing very well with Tarceva . But, for me , it is not working for after 2 1/2 months, so , my oncologist suggest to stop.

Two months ago, I meet one patient in cancer treatment centre. He hv great side effect with tarceva and end up in and out hospital due to his body can not tolerate with the drug .

At times, we shud make decision for ourself for kind of treatment and what we want is quality of life, beside of treatmemt for recovery .

Get some other opinion will help us to make good decision . 

 

On 5/27/2009 suzandnut wrote:

Hello..my mom was diagnosed with NSCLC in Jan. 09..it had already metastisized to her spine and ribs at the time of diagnosis.  She had 4 rounds of Taxol/Carboplatin...4 rounds of Zometa...3 rounds of Evastin.  She seemed to tolerate the IV chemo treatments great...maintained her weight and appetite, was able to reduce her morphine to once a day, and seemed to be doing really well--.  She had a CT about 5 weeks ago and the primary tumor had shrunk almost 90% and one of the tumors in her spine is gone.  Her doctor started her on 150mg Tarceva and after about 2 weeks, everything seemed to go downhill fast.  Bone pain in her back became constant and more severe; her appetite is almost completely gone; she has a constant horrible taste in her mouth...she is really suffering.  She had verteplasty done 2 weeks ago for the bone pain in her back, and it did nothing.  Her doctor does not want to take her off Tarceva...she is back on large doses of morphine to help with the pain, which doesn't seem to be working well anymore.  Any help, suggestions..on the bone pain and the appetite would be so great.  She says everything tastes like poison.  This is such an awful disease and any help would be very much appreciated.

Hello,

It sounds like the cancer has cracked her bones/ribs (easy to verify by the Ctscan or MRI).  Only radiation along with zometa would help.  My mom went thru the same thing.  Pls do not try to abuse the morphine.  My Dad had it and it had weaken his heart and gradually he sinked to Coma.  For my mom now we has requested to remove the morphine out of her med chart permanent after 4 times in the lingering border line of coma!  BTW, she has been using morphine since OCT 08...   We also removed her Fentanyl patches too.  

Pls request radiation on target the trouble area FAST. It helps my mom on her spine/ribs since April.

For Tarceva, did ur mom experience any rash reaction yet?  Her oncologist can always go to a lower DOSE.

Appetizer can be improved with another engergy med.  Or give her some ginger slices in Tea or with cooking foods.

V

 

Thank you for the feedback...things spiraled out of control shortly after my post..the Tarceva hadn't been working and all of the tumors were back a very large..my mom had to be airlifted to Stanford for a major back surgery due to the compressed T-9 vert. and the large tumor around it...she was released a week later, sent home with us, and then contracted pneumonia..things got horribly worse by the day...she was hospitalized about 3 1/2 weeks ago...all the while unable to receive chemo or radiation due to the surgery...no one was unable to get on top of the pneumonia and she was in agonizing pain from the bone cancer...she passed away last Tuesday.  This disease is so horrible...I have never seen anyone go through so much pain and agony...we miss her terribly.  But at least she can finally rest.