My Tarceva adventure - the sequel

[gilbert2001]

Hi to all.

My first attempt to take Tarceva lasted for 6 days.
I started with 150 mg every day, 2 hours after supper, no food afterward.
I got awful rash and acne, mouth sores, swollen lips, couldn't eat, couldn't shave, and couldn't brush my teeth.
Stopped Tarceva for a week. After about 4 days I was almost as good as new.
Meanwhile I had biopsy on 3 lumps and all were malignant.

In my second attempt I started 100 mg every other day.
After 2 weeks I increased the dose to 100/150 every other day.
Got chills and diarrhea.
During the next 2 weeks I increased the dose gradually to 100 mg every day. I also had diarrhea every day, sometimes twice a day.
I felt sick. Lost my appetite completely and my taste buds were dead.
Then I got bleeding from the rectum. Scary. About a spoon a few times a day.
Stopped Tarceva. Saw a gastro doc. He said it was hemorrhoid, nothing malignant.
Diarrhea went away in a day. Bleeding lasted 5 more days.
In the mean time I saw a cardiologist for my fluid around the heart, had a few echos, and it's not too serious.
All that time my wife used to drive me to the hospital and in just a few days without Tarceva I felt good enough to drive myself.

Third time Tarceva. 100 mg every other day, and this time I increased the dose to 100 every day within 2 weeks.
Some rash, some acne, some mouth sores, severe diarrhea.
2 more weeks and I don't think that I can increase the dose.
The lump in my skull is painful and I take painkillers. My onc suggests radiation.

Last week I had the first CT after starting Tarceva.
Today I have had a consultation meeting with the radiation doc.
That was the first time that someone went with me over my CT's, compared them and explained the differences.
He came to the conclusion that Tarceva was not for me. One percent of patients cannot tolerate it and I am that one.
As for the lump in my skull – he says that 4 radiation treatments will shrink it with very little side effect. I will lose some hair just around the lump and feel like having sunburn.

Mind you – I still don't have any symptom of lung cancer. No pain, no breathing difficulties, no nothing.
Since starting Tarceva my weight is down from 180 to 166.

Thanks for listening,
Gil

[jlenzmeier]

Hello and thank you for sharing that information. I have heard of Tarceva and wondered how a person qualifies for it. My mom was just diagnosed with Lung Cancer and is currently getting IV chemo and radiation for a couple of tumors in the brain. This is all very new to us as she was just diagnosed on Tuesday last week. Is Tarceva a new drug? Is it like a chemo pill?

Jill

[gilbert2001]

Hi Jill,

Tarceva was approved in 2005.
Most people tolerate it better than I did.
You can find a lot of info in their website at:
tarceva.com

It's a pill that you take once a day at home.

A month supply costs about $3000 (three thousands).
If your mom has no drug coverage the company suggests a few ways how and where to get it for a lower price.

All the best,
Gil

[kris114]

Originally Posted by jlenzmeier

Hello and thank you for sharing that information. I have heard of Tarceva and wondered how a person qualifies for it. My mom was just diagnosed with Lung Cancer and is currently getting IV chemo and radiation for a couple of tumors in the brain. This is all very new to us as she was just diagnosed on Tuesday last week. Is Tarceva a new drug? Is it like a chemo pill?

Jill

Jill, there have been a lot of posts on this message board regarding Tarceva. If you do a search on this topic, you should get a lot of helpful insight into the treatment. According to the scientific research, less than 10% of people with lung cancer respond favorably to Tarceva. My mother was one of the extremely blessed and lucky ones. Some of the characteristics that may be indicative of a favorable response include: female, non-smoker, Non-small Cell Lung Cancer (NSCLC), and moderately differentiated carcinoma. Some oncologists will prescribe this oral medication to their patients if they have these characteristics. In order to qualify for Tarceva, the patient must have had one unsuccessful chemotherapy treatment. Another way of determining responsiveness to Tarceva, is to have an in-depth gene sequencing procedure conducted from a biopsy of the cancer tissue. My mother had this test done, because she was asked to donate her tissue sample for the university research hospital which performed her operation to remove a very small tumor they found on her lung. I found out through this message board about Tarceva through JanMarie's mother's experience with the drug, and did further research on the genetic characteristics that my mother had, because I requested all her medical records and testing results. My mother's cancer quickly spread to the lining of her chest, and we went to an oncologist (her third-- the others wanted to continue with the chemo which practically killed her with one dosage and didn't help stop the cancer from growing). The third oncologist examined her biopsy results and found that she would be an excellent candidate for Tarceva based on a certain genetic mutation in the tumor. This is why she responded to the Tarceva better than most people. If you have more questions about Tarceva, check out the Sloan-Kettering web site, which has been a leader in this kind of treatment. Good luck and I will be praying for you. Kris

[Janmarie2]

Gilbert, Sorry the Tarceva was not for you but at least you gave it a shot.

Jill, My mom just died 2 weeks ago but thanks to the tarceva she died with no cancer in her lungs. She did not have any breathing trouble since starting the Tarceva and while it only held the liver mets stable for 7-8 months( then it was back to chemo). Tarceva gave her a great quality of life for over 1.5 yrs. She had her first pleural effusion in June 2004 which lead to finding the cancer which was stage IV NSCLC. I can not say enough good things about the drug and will be forever thankful of the time it gave her to spend with us. She tolerated it pretty well with just the rash which was like teenage acne for her and dried skin, dries cracked finger tips too but other then that nothing too bad. Evereyone responds differently to any drug so keep that in mind. We could tell within days it was working as at the time my mom had a bad pneumonia following her first line chemo and they put her on Irressa ( next month switched to the new released Tarceva) and antibiotics and with in a day she was feeling better and just kept getting better and better and soon was saying she was breathing better then she had in years and she was back to being her active old self so we figure it was working and her CT proved it.

I have met others that also started on Iressa and were later switched to Tarceva when Iressa was taken off the market and some of those people have been on it for 2-3 years and are currently N.E.D. ( No evidence of disease).When it works it can do great things so the bad thing is it only works in about 10% of the people.

Hope this helps if you heave any more questions feel free to ask as I feel like I am the Tarceva Rep! ( think they would pay me?) JanMarie