Tarceva

Hi, You said you have stage four lung cancer, when were you diagnosed?  my mom is at stage four and has tried three different chemos and is not responding.  the doctor wants her to finish up this last chemo and then try tarceva.  did anyone give you a time frame of life expectancy at stage four?  we are so scared that she will not respond, but I have a good feeling about Tarceva.  thank you and wish you well, anxious to here from you   Janice

 

On 5/7/2005 Daywoo wrote:

I have gone through the break out stage, and then the ends of my fingers began to split. It has been 4 months and I feel fine. However, a couple of weeks ago, my hair began to break off and fall out. It is now very thin, normally I have extremely thick hair. I have been on 150mg and last week the doctor said I could now go down to 100mg to see if the hair shedding would stop. I will not have a CT Scan until June 2nd, I will let everyone know how it goes. I have stage IV Lung Cancer and have been beating the odds for 4 years. My radiation doctor says the latest spot could be radiated, so if the Tarceva does not get rid of it or shrink it dramatically. I will have more radiation. I originally had 6 months of chemo and then 37 radiation treatments, it was gone for about a year, then 6 more months of chemo and it was gone again. Good Luck to All

I am so happy to read that you've been beating the odds for years. My mom is currently taking Tarceva for lung cancer. She never was a smoker. Please keep my mom in your prayers and I will say a prayer for you. Thanks for posting, This board gives us hope.

 

Maria

 

 

On 9/7/2005 Lynns Mom wrote:

My 84 yr. old Mom also has stage IIIB NSCLC-this is her 3rd year of chemo. She was started on Tarceva recently for her lung and liver met. I am interested to hear that your Mom has had good results from the med. My Mom had to cut back to 100 mg every other day because of bad diarrhea and rash on face, neck and scalp which was painful. The rash has improved with a steroid cream. The diarrhea is not pleasant. She's having bad abdominal cramps right now. She's taking lomotil which helps. Does anyone have info on how long the diarrhea lasts and any food suggestions to diminish it? Thanks. This is the best web site I have found so far. I am an RN and care for pts. where side effects of meds differ. All the drug sites in the world give you some info but it's only statistics and not real stories. Every person reacts to medication differently. I look forward to learning from all of you.

 

I know your posting was some time ago. My 78 year old mother has been on Tarceva for over a year. The side effects were managable until recently. The abdominal cramps and severity of diarrhea are intense.  How did you manage these side effects for your mom?

My 66 yr old mother was diagnosed a year ago with stage 4 lung cancer and colon cancer. She has had two types of chemo and now has been put on Tarceva a month ago. She has not had any rash, but has had bad diarrhea. Does anyone know how long this will last? She eats very little because she never knows what will start the diarrhea again. Otherwise she feels fine. Any info on this would be helpful. Thanks!!

I've been taking Tarceva for for nearly five months, and have come up with some things to deal with the side effects I've had.

For the rash: I take a daily low-dosage antibiotic (in my case, doxycycline hyclate), and no longer need to use steroid creams on my face.

For the diarrhea: I've greatly increased my intake of dietary fiber (in my case, raisin bran, bananas, apples, and whole-grain breads) and cheese. Be sure to check with your doctor -- bananas interact with some diuretics, and cheese interacts with some heart medications. Behaviorally, I've learned to take frequent bathroom breaks whether or not I feel any need. I've also learned to pack my briefcase with a spare roll of toilet paper, a jar of wet-wipe pads (witch-hazel for me), and two changes of underwear.

For the gas: I've tried to develop a sense of humor, and my family has learned to either just carry on if I'm embarrassed, or lovingly tease me if they think I'm up for it. For work, or other long periods in public, I take activated charcoal. (But check with your doctor, as it can interfere with absorption of some kinds of medication.)

 

On 3/30/2008 PaulC2 wrote:

I've been taking Tarceva for for nearly five months, and have come up with some things to deal with the side effects I've had.

For the rash: I take a daily low-dosage antibiotic (in my case, doxycycline hyclate), and no longer need to use steroid creams on my face.

For the diarrhea: I've greatly increased my intake of dietary fiber (in my case, raisin bran, bananas, apples, and whole-grain breads) and cheese. Be sure to check with your doctor -- bananas interact with some diuretics, and cheese interacts with some heart medications. Behaviorally, I've learned to take frequent bathroom breaks whether or not I feel any need. I've also learned to pack my briefcase with a spare roll of toilet paper, a jar of wet-wipe pads (witch-hazel for me), and two changes of underwear.

For the gas: I've tried to develop a sense of humor, and my family has learned to either just carry on if I'm embarrassed, or lovingly tease me if they think I'm up for it. For work, or other long periods in public, I take activated charcoal. (But check with your doctor, as it can interfere with absorption of some kinds of medication.)

 

Thanks for the advice. We now have a prescription for something to help with the diarrhea and she is starting to actually try some solid food again. One thing I am concerned about is Mom does not have a rash. I have heard this is a sign that the tarceva is working. She goes April 10 for her next scan. I hope we get a good report. Thanks again.

My 59 year old sister has just been diagnosed with lung cancer that has metastasized to her brain and spinal cord (and possibly to other areas of her body).  The doctors say she cannot beat it because the cancer is too advanced.  They are calling it adenocarcinoma.  She suffers from severe headaches because the spinal fluid puts pressure on her optic nerve.  They are considering putting a shunt in to reduce the build up of fluid.  She is getting radiation treatments to the brain and taking Tarceva daily.  Has anyone else experienced these symptoms?  I am concerned that the surgery to put in the shunt will advance the growth of the cancer.  If any of you know anything about this, please advise me.  Also, how long can I expect it to take before she begins to experience the side affects of the drug Tarceva?  I have been reading about some of your successes with this drug and am praying my sister still has a chance at life.

I find that 1% hydrocortisone plus 12 moisturizing agents and aloe, an inexpensive, over the counter cream, applied once a day to the areas that get the rash, works quite well to control the rash. It's a generic equivalent of Cortizone 10 + 12 moisturizers and aloe, and it's about half the price of the brand name stuff. (Actually, it's the same price, but you get twice as much in the tube.) I'm having a huge problem with the diarrhea even though I take Imodium AD. Imodium AD either doesn't work at all, or it works so well that I get constipated and have abdominal cramps. I also get aches and pains which don't respond well to Tylenol, and I'm weak, tired, and sleepy all the time. I'm open to suggestion here.

 Henry

 

On 9/7/2005 Lynns Mom wrote:

My 84 yr. old Mom also has stage IIIB NSCLC-this is her 3rd year of chemo. She was started on Tarceva recently for her lung and liver met. I am interested to hear that your Mom has had good results from the med. My Mom had to cut back to 100 mg every other day because of bad diarrhea and rash on face, neck and scalp which was painful. The rash has improved with a steroid cream. The diarrhea is not pleasant. She's having bad abdominal cramps right now. She's taking lomotil which helps. Does anyone have info on how long the diarrhea lasts and any food suggestions to diminish it? Thanks. This is the best web site I have found so far. I am an RN and care for pts. where side effects of meds differ. All the drug sites in the world give you some info but it's only statistics and not real stories. Every person reacts to medication differently. I look forward to learning from all of you.

 

 

On 4/19/2005 Leslie wrote:

Sorry. I'm not responding directly, but I haven't figured out how to post a new message. My husband has been on Tarceva for four weeks. He is experiencing nausea and fatigue. We are trying to decide when he should get a scan to see if it is helping. Our thinking is to wait until he is on it for two months. Does anyone have specific information about this? Thanks.

 

Started onTraceva June 11, 2008 at noon stage 4 nscl  lung cancer this is day 4 and side efects our still lots of fatigue and coughing hard and i get some blood coming up sometime to.

Yes i can you tell about our Hematology/Oncology Center  at 301 N. San Jacinto st.Hemet Ca.my  Dr. Sehgal gave us a 2 months pre-mark

calender mark with a blood test at Lab the 19 of June and another July the 3rd then apointment at Dr. office July the 8rd to give the fineing if any at that time.  ather that more  blood test every 2 week for testing.and more office visit with Doctor to see if any changes.

a fallow up to his office to if their any improvement or shrinking or changes maybe  next a MRI test and ct scan to check . but said it will a long time maybe 2 to 3 months for some people

to see any improvement and will be on Traceva maybe a year or more.THANK YOU if you got any help for me... God Bless.... Anita

any reply will help me THANK again

RE:  HELP GETTING TARCEVA FOR FREE AND ASAP 

My mom has NSCLC IV diagnosed 13 months ago.  It has spread to bone, thyroid & liver.  She had carboplatin/taxotere chemo for 6 months, then gemzar for 4 months.  Gemzar did not work and so the doc put my mom on Tarceva.  We just got the meds delivered today.

 On May 23 she was given only 2 months to live, and the Tarceva was prescribed then.  We have had numerous hurdles in getting this drug.  If you need assistance paying for it, call Genentech and they will refer you to a charity that can help.  That means that the people from the charity will call you and send you an application packet that you fill out with insurance info, bank statement, etc.  We sent it back and rec'd a decision right away and were approved for $10K per year.  The charity name is Cancer Care. 

Here's the catch... don't try to get the drug through your local pharmacy.  We did and that's why it took so long.  The way Cancer Care pays for the drugs is the old-fashioned way: by check in the mail.  There are virtually NO local pharmacies (even national chains) that will accept this type of "third party billing."  The Cancer Care rep will ask you about the pharmacy you use, so just tell them to use whatever pharmacy they can process it through.  Apparently Walmart's mail order (called Walmart Specialty Pharmacy) is on board with this program.  Once they get the Rx faxed to them, they process it and overnight the drugs at no cost to you.  The charity picks up the entire tab.  The first month's supply would've cost my mom $2802.00 and the next dose will cost her $3500 because this drug put her in her "gap" with the AARP Prescription plan.  So we have gone 3 weeks trying to get this done.  So I really, really hope this helps someone else avoid the pitfalls of working to get these meds as fast as possible. 

Also, WM pharmacy called me about 15 mins after the drug arrived to confirm that it was rec'd and to go over my mom's medical history.  It was a nurse who called and she was quite knowledgeable and friendly.  If she didnt' know an answer to my question, she put me on hold while she consulted a pharmacist to get the answer.  I listed mom's conditions, medications, and answered lots of questions.  It took about 10 mins total.  Then about 30 mins later the nurse called me back and told me they'd identified a possible interaction problem with Tarceva and one of mom's other drugs (coumadin).  I was impressed and appreciated how this was handled.  I now have a call into the doc's office to see if that is really going to be a problem.   

I will post again on progress, etc.  Many people plan to post updates but then it just doesn't happen.  I have gotten so much from all the personal stories (and questions) that I will make my best effort to contribute in any way I can.

Thank you all for the useful info that is so hard to find!