Has Anyone Tried Tarceva?

My Father was diagnosed with Stage IV NSCLC in October 2004. He has had 7 weeks radiation and chemo and is now on Tarceva. He had two small Brain Met that were taken care of with Cyberknife Radio Surgery. You had mentioned that you had surgery. Did they remove your primary lung tumor? Back in October we had talked to Surgeon about removing the lung tumor. He was willing to do the operation but his oncologist didn't advise us to have surgery. He suggested 7 weeks chemo and radiation. After completion the tumor only shrunk 35%. Now his oncologist says maybe surgery, he wants to wait two more months to see how Tarceva is working. I have always felt uncomfortable waiting for surgery. I think my Dad would be better mentally with the tumor gone. Did you have any brain mets when they did surgery? If you had lung surgery how long did recovery take? How much of the lung was removed? My Dad is 69 years old but in pretty good health other than cancer. Thanks for answering my questions.

I am 56 years old. Surgery was the first option for me. I thought that if they could remove the tumor, it would be over. The surgery removed the upper lobe of my left lung. Unfortuneately, the tumor had spread to my heart so they were no able to remove it all. Recovery from the surgery was not bad, but I started chem approx. 6 weeks after the cehmo. Upon completion of the chemo, the cancer had disappeared, but returned later. The Tarceva allows me a pretty normal life. I am able to SCUBA, ski and be as physically active as I choose. I hope the drug continues to be effective on my cancers.

In reply to Peach255, It is difficult to say exactly how long it took for my mom to start feeling better from the Tarceva. She had a Pneumonia that I think must have been what is called an obstructive pneumonia caused by the tumor so she was put on antibiotics and Iressa which a month later was changed to Tarceva,(They are the same type of drug but Tarceva did better in clinical trials)anyway within a day she started feeling better as the pneumonia improved and just kept getting better and she soon noticed that her breathing was better then it had been for months and the CT done two months later supported this and showed dramatic improvement.Look for a rash that is like acne usually in 3-4 weeks after starting the Tarceva as in clinical trials they noticed the rash was a clinical indicator that the drug is working. Is your mom still coughing as much since the Thoracentesis? Pleural effusions usually make the person cough alot and when my mom would get one she would cough alot at night and not be able to sleep.As for the pleurodesis my mom had one with her 3rd effusion and it worked so she has had no more.There are two ways to do it my mom had it done in her room as she was in the hospital she had a tube thoracostomy where they place a chest tube into the chest and fill the pleural space up with Doxycycline which causes scarring that closes off the pleural space. I do not think the chest tube was too bad but the drug caused a burning in her chest for a few hours and I saw her about 1/2 hr after the procedure and she looked terrible as I have never seen her in so much pain. She said she would rather give birth to 4 kids again then have another pleurodesis. They can also do a surgical procedure called a VATS ( video-assisted thoracoscopy) where they use Talc as the agent instead of doxycycline. If she is getting frequent pleural effusions I would go for the pleurodesis as the effusions can be miserable too and can cause alot of trouble.Sometimes you have to endure some discomfort to have proper medical care such as the X-rays following your mom's thoracentesis. Give the Tarceva a few weeks and if she does not start feeling better discuss it with her doctor but since the rash usually takes 3-4 weeks to show up my bet is it takes at least that long to start noticing a difference.Keep an eye out for low grade fevers and fatigue as there are alot of pneumonias at this time of year. Good luck and let me know what happens. JanMarie

Janmarie,
I would like to get some hope from you since your mother is doing so well. I am NOT going to give up hope no matter what. We brought my mom to the hospital last week b/c she was really weak and hasn't eaten or sleep for 2 days. She is still there right now, and at first, they said they are treating her for pneumonia. They are giving her antibiotics by IV. They said that x-rays showed a big mass all over, and that the cancer mass does not grow that big that fast. Today, the doctors said that they are not sure if she even have pneumonia (and yesterday, they said there is pneumonia!! ). Anyhow, she did have a low grade fever, so I think she did. The doctors also pretty much said they cannot do anything more for her ... no chemo b/c she is so weak, and also no Tarceva anymore b/c of the same reason. I don't really care what the doctor says b/c I believe there is always hope. I love and care about my mom too much. The thoracic surgeon also did a pleurodesis on her. They stick a tube in her chest, and put bleomycin in. The surgeon is pretty satisfied b/c he said that the x-rays showed the lungs is still up and that there is no fluid, and he plans to take the tube out tomorrow. However, I do notice that the container still have little fluid accumulating (about 50-100cc) for the past 2 days. I am thinking of asking the surgeon to maybe try to put another dose of bleomycin?? Although the surgeon is not worry about that little amount, I am scared that it may still accumulate overtime.
Please let me know your detail experience overtime. Thank you very much. I have learned a lot from your experience. If I didn't read about your mom having pleurodesis done and ask the oncologist about it, I'm not sure would he have recommend it to the surgeon.
Thanks!

Sorry it has taken me a few days to answer you but I have been out of town. I do hope that your mom is doing better and that the pneumonia has cleared. I am curious as to what part of the country you live in? Is your mom getting care at a community hospital or is it a teaching hospital? I can sense the pain and fear in your post as it is all too common to any of us that are going through lung cancer with our mother's. When it comes to X-rays I would take a radiologist's word over the other doctors. Often with pneumonia you get what is called a "white out" of the lung or area of the lung so it is difficult to really see what is there. With my mom's pneumonia her xray showed a white out so they were unsure if it was just pneumonia or if the tumor was responsible so did a Cat Scat a few days later to see exactly what was going on. Keep in mind medicine is not an exact science with all the correct answers. As for the bleomycin I think that is a drug that more is not better, less is better. Bleomycin is very toxic to the lungs and a good friend of mine that got it as part of her chemo cocktail for hodgkins lymphoma ended up with pulmonary fibrosis in her lungs from the bleomycin. My friend has to be careful about getting any supplemental Oxygen for the rest of her life but she got the bleomycin IV so I do not know if used as the agent in a pleurodesis if Oxygen then becomes a risk for your mom, but do ask the doctor about it. With luck your mom's pleurodesis took and she will have no more problems with pleural effusions. Having a pneumonia at the same time you have an effusion would be hard on me or you let alone our elderly mothers so hopefully she gets some strength back when she is no longer dealing with either issue. Hopefully she starts eating again as I did read a paper saying that malnutrition is responsible for the deaths of many cancer patients. Maybe she will get strong enough where she can go back on the tarceva? How is your mom dealing with all of this? There is one very important thing to keep in mind and that is that she should have the final say in her care. Sometimes what we want is not what the patient getting the care wants and it is important that we put their needs over our needs. I have not found the doctors to be very supportive or offer much hope and I know they are amazed that my little old mom is doing as well as she is but they do not know her. My dad has early dementia possibly alzheimers, they own a couple dogs and a cat so my mom has things she feels responsible for so I am sure that keeps her going. In my life time up until she got the cancer she has never really been sick except for the time she had the flu so bad she was unable to get out of bed and that is when I was little. She made a comment this past year that being the mother of 4 kids that she felt she never was allowed to be sick as there was always too much to do. So yes attitude does play a roll in illness and recovery. I wish I knew what to say to offer you more hope. When my mom had the pneumonia and urinary tract infection last Nov/Dec. She looked so bad that I never in a million years would have guessed that she would be doing so well 5/6 months later, but she is. So I hope and pray that your mom perks up after her hospital stay, starts eating and sleeping again so she can get some strength back. My mom gets a CT end of next week so when I know the results I will share them as these boards are the best way to learn about things. Let me know how your mom is doing as my heart does go out to you both. Janmarie

I was diagnosed with StageIV bronchioaveolar carcinoma (BAC) in Jan. 2005. I was walking 3 miles a day at lunch time with a friend for a few weeks when suddenly, in December, I felt like I wasn't able to get enough oxygen and was breathing kind of hard while walking. I figured I was getting flu, went to the Dr. who listened to my lungs and said I sounded fine and gave me anti-biotics in case I was getting flu.

Antibiotics did nothing and by Jan. 5 I was winded walking across the room and realised maybe this was something serious. I had no congestion and very slight cough. I was a smoker and thought little about a cough at flu season.

To make a long story short, I was admitted to hospital that day because my oxygen concentration was about 68% and a chest x-ray showed my lungs were full of spots. I was in the ICU on a ventilator for 11 days and don't remember anything after getting to the hospital!

Broncoscopy on the 3rd day showed the BAC. I was given a 5% chance of living because they just couldn't being my ocygen level up or take me off the ventilator. My poor husband was told to prepare for my death. (I turned 50 the next month, feel about 35 and it was a big shock to everyone!)

Anyway, the doctor told my husband they couldn't give me regular chemo because I was barely alive as it was. He had a bottle of Iressa a former patient's widow had donated and asked could he try giving it to me. Within two days my chest x-rays showed my lungs were hald clear, my oxygen level was coming up rapidly, my face was pink again! The doctors said they had never seen such a positive and rapid reaction to Iressa! I went home 14 days after being admitted!

The Iressa only gave me slight acne on my face and dry skin. I feel great, have been working part-time and doing sit-ups and yoga since February. Trying to have the healthiest body I can.

The cancer had already metastised to a couple of vertebrae, a rib, and a small area of my pelvis when diagnosed. But I only have a 3/4 inch tumor (the original) in my right lung and some slight "shadows" show up in the left lung.

I go back for a CT scan in a couple of weeks and will change to Tarceva at that time. My insurance won't pay for the Iressa because I haven't had 2 rounds of traditional chemo first. I've been lucky enough to get the Iressa free through donations so far, but the anxiety of not knowing month to month if I can get it again is a worry I don't need. I can get the Tarceva free through the manufacturer if the insurance turns us down for that, too. (Which they are expected to.)

I have high hopes I will continue to do well on Tarceva, even though the acne may get worse for awhile. My hope is to keep trying these new meds as they are available since I respond well to them and they give me a normal life. Then maybe they'll be able to do gene therapy or something in a couple of years to make the cancer a chronic but not fatal illness. Can't hurt to hope! I've been lucky so far!

I realise my time is probably limited. But this cancer has given me a whole new perspective on life and I am actually enjoying life more and better able to receive love from others than I was before! So, even if I don't live another full year, I want to live that year to the fullest, love my husband and enjoy his love, and share the sunshine with my friends and pets as long as I can! It can't hurt to keep my spirits up and appreciate all the wonderful things there are to appreciate in life. Who knows -- maybe positive thinking can actually help.

This is my first time posting a message here. It really helps to read other people's experiences and I hope I can give support to others. We're all in this together!

Janmarie,
I live in the East Coast, and the hospital is a pretty good one around here. I never saw the x-ray or CT Scan, so I'm not sure how it looked like. Regardless, they gave her antibiotics by IV just in case it is pneumonia, they said. Right now, my mom is home from the hospital. However, she is really weak right now, and is having a hard time getting out of bed. First, she is probably really dizzy from laying down for awhile and also from all the meds they gave her. Yesterday, she tried to get out to go to the bathroom, but then she said her heart started to beat really fast and she felt really dizzy, so she had to hurry and lay back down. I'm not sure is it b/c she has not been up for awhile. Right now, we are helping her step by step by raising the bed up a little at a time so that she can catch her breath and the blood can slowly circulate around. I really hope this will help. The doctor said that she is "bedridden", but I believe that once she gain her strength back, she can get back up. She is also eating a little more each time. I know it is up to mom on her care, and she told me she really would like to see me graduate 2 years from now, and do all these wonderful things in life that we take for granted. But at times, she said she is in such discomfort thay she wants to give up at times, even though she really doesn't. It hurts me a lot to see her in discomfort. Anyhow, my mom has a lot of wonderful family and friends encouraging her and caring for her. We are taking it step by step now ... make sure she eats and gain her strength back and also help raise her up on the bed a little by little. Then she can maybe take Tarceva again. I also read that the med works best for Asian, non-smoker, and female. And my mom fits all of those categories.
Best wishes to your mom and you.

To Peach 255:
I am glad that your mom is back home and hope she is getting stronger. If she is still unable to get out of bed it is very important that you have her change postions alot, lay on her sides, sit her up and not just flat on her back, take lots of deep breaths and even do some coughing. If at all possible have her sit upright in a chair,a reclinger is good if you have one as then they do not have to sit straight up if it makes her dizzy. I say this because the human lungs need to be in an upright postion to help prevent pneumonia. We were designed to be in an upright position and as we move about we take deep breaths without thinking about it. When we spend time laying in bed for long periods it is very important to make ourselves take deep breaths to replace the ones we normally would be taking to keep our lungs expanded so we do not get a condition known as atelectasis which sets us up for pneumonia. I will keep my fingers crossed that your mom gets stronger so she can give the tarceva a shot, know she will be in my prayers. Keep me posted as to how she does. JanMarie

Your story is quite moving and I wish you the best of luck. I will say two parts of your story anger me .The fact that Iressa has helped you yet your insurance would not pay for it because you did not do the traditional chemo first really makes my blood boil. You pay for insurance yet when you need them the most they are not there for you. Have you tried to petition the insurance company about it using the fact that you are benefitting from the Iressa to see if they would change their mind? I think it is very cruel that they would make you go through the day to day worry about how to get the next months supply of a drug that is keeping you alive. There needs to be some huge insurance reforms made with all the changes occuring in cancer therapy. The second thing that angers me and I hope will become a take home lesson for anyone reading this is the fact you went to a doctor who gave you antibiotics not quite sure of what he was treating but the old "just in case" therapy. A good friend/coworker of mine had a cough for awhile and in Dec 2004 went to see her doctor who did the same thing " here are some antiobiotics just in case" she told me about it after she had finished them yet still had the cough. I told her go back and demand an xray and said that I would not even take an antibiotic unless the doctor had proof that I had something it could treat.( the over use of antibiotics has left us with too many dangerous resistant bugs) Well she did as I suggested and that Xray turned into a CT and she found out she had a huge lymphoma wrapped around her heart, lucky for her it is hodgkins lymphoma and after 12 weeks of chemo and several weeks of radiation she is hopefully looking at a cure. Anyway I think doctors are being rather negligent when they just hand out antibiotics like that. I wish you the best and pray that the inurance will cover the Tarceva. Janmarie

Have been on Tarceva since late Feb, 2005, for NSCLC. PET scans 2/8 and 5/10 show cancerous lymph nodes continue to grow. Am looking for other options.