I've been a lung cancer survivor diagnosed in 2000. I've had 1 wedgeectomy, two lobectomies (one in each lung), been aggressively treated with chemotherapy, and all scans proved negative. Then, in Jan, 2004, I experienced a seizure, was rushed to the hospital, and found out it metastisized to my brain. Fortunately, it was in an easily accessible part of my brain and it was removed. I was again put on chemo and had brain radiation. That was all completed by mid-April 2004. Then my oncologist pronounced me "clean", but put me on Tarceva ("to kill any stray cells")
For 2 years I have been on the drug. I want to know if there is a maximum time you should take this medication. The side effects are horrible. My skin is so dry, it gets worse and worse, that it feels like an alligator. The radiation to the brain left me with total hair loss, and it hasn't come back, except in certain areas, but doesn't get any longer than less than an inch.
The "trots" are a part of my life - I have to schedule all my activities around the availability/sanitation of bathrooms.
I'd like to know if anyone has had a similar experience with Tarceva - I'm desperate. Thank you. Surviver 2000
You have been on Tarceva longer than I have. I have been on Tarceva for about a year. I started taking Tarceva at the same time I started my chemo. I had no bad side effects from either. I was stage IV and now in remission. I tried to drink an 8oz glass of water for every hour that I was awake. I also exercised 6 days a week. These two things I think helped me a lot. AHCC, Melatonin and CoQ10 are the three supplements that I think did me the most good. I realize not everyone will be able to exercise to the extent that I did, but what ever you can do I believe helps. If you would like to read my complete story on the Lance Armstrong’s web site, paste the address below in your browser. After reading my story you will be able to email me, maybe there are some other things I do that may help. Keep in touch. Ernie (Harold).
http://shareyourstory.livestrong.org/siteapps/personalpage/ShowPage.aspx?c=ijIVI2PFKoG&b=738859&sid=9iIKL0NFLbIUIaMGLmE
Thanks Ernie. I have taken the supplements, but they are not helping.
Here is a complete list of what I take now. It does not print out too well in the posting. The posting takes out all the spaces, but each item I take is followed by what the purported use is. I take a total of 8 Citrucel this helps me from the trots, 4 with breakfast and 4 with dinner. They have not told me when I would stop the Tarceva. They don't know. They said as long as I have no bad side effects, why not take it?
Daily Supplements and Meds
Supplement/ Med PURPORTED USES
One hour before Breakfast
Tarceva 100mg Cancer Rx medication
AHCC 2 grams Cancer prevention and treatment *
Chemotherapy side effects *
Breakfast
Citrucel 4 Regularity
Centrum Silver 1 Multi Vitamin
Calcium Citrate 250mg Cancer prevention *
Cardio-Edge 2 Cholesterol control
Policosanol 1 Cholesterol control
CoQ10 100mg Cancer prevention and Chemo side effects *
Garlic 320mg Cancer prevention and Cancer treatment *
Zinc 50mg Cancer prevention *
Green Tea Extract 500mg Cancer prevention and Cancer treatment *
Grape Seed Extract ActVin 100mg Cancer prevention *
Calcium Citrate 500mg Cancer prevention *
L-Glutamine 500mg Cancer-related cachexia *
Vitamin B-6 500mg Immunostimulation *
Between Meals
AHCC 2 grams Cancer prevention and treatment *
Astragalus Supreme 2 caps Chemotherapy side effects, Immunostimulation *
Lunch
None
Between Meals
AHCC 2 grams Cancer prevention and treatment *
Astragalus Supreme 2 caps Chemotherapy side effects, Immunostimulation *
Dinner
Citrucel 4 Regularity
Calcium Citrate 250mg Cancer prevention *
Cardio-Edge 2 Cholesterol control
Policosanol 1 Cholesterol control
CoQ10 100mg Cancer prevention and Chemo side effects *
30 min Prior to Bed
Melatonin 20mg Cancer treatment, Chemotherapy side effects *
• Taken from Sloan Kettering’s Herb web site:
• http://www.mskcc.org/mskcc/html/11571.cfm?tab=HC#A
Ernie - I cannot believe all the supplements you are taking. I'm going to check with my internist, because I am so allergic to many drugs, that he'll have to figure out with me which ones don't contain any allergents. I thank you very much. Keep fighting.
My mom has been on Tarceva for about 4 months, and has done well (My mom goes for another scan on Thursday we will know results the following Tuesday). Anyway she has physically been better as she figured out a cocktail of do's and don'ts I will share some with you.
1. Don't eat out! Restaurant food is good becaue they use butter. Eating bland foods = less "trots".
2. My mom had a terrible time with watch she called an "Itchy Scalp". She saw a dermitologist who diagnosed it as "Folliculitis". I will say this, the remedies the dermatologist prescribed for her itchy scalp worked wonders. My mom was prescribed the following:
A. Plux Foam (aka Clobetasol propinate)
B. Eboclin
C. Benzaclin (aka Clindamycin)
D. SLK Anti itch cream.
3. My Mom's oncologist was not very helpful when it came to her itchy scalp. It got so uncomfortable that my mom saw the Dermotologist and he cleared it up. So don't be afraid to do the same thing. The only thing I will caution you (as you should do with anything), is when you are prescribed anything, check in with your oncologist first. When My mom's doctor said that none of the remedies she chose would affect her treatment, my mom ended up feeling 100% better.
4. As for the Length you should take Tarceva, I have to say nobody will be able to answer that. Simply put, there is not enough data out there. Although the EGFR Mutation drugs have been out for about 5 years or so, Tarceva was only approved by the FDA in Nov. of 2004 (not even two years ago). My mom asked her doctor the same question, and the doctor responded, "Tarceva is your Drug" which basically means deal with it. In another visit he did throw out the prospect of 3 years, but I wonder if he said that because the drug has shown only 2 year survival.
4. With the hair, I am happy you have an inch, my mom can't seem to grow any hair, it may be that the radiation is still present (as it takes over a year to actually disappear) - My mom started Radiation mid April for four weeks, and they say it peaked in late May. This could explain the slowness in your hair growth. Then again, as my mom said my hair growth is the least of my worries.
Good Luck and G-d Bless
Thank you for your advice. I spoke with my oncologist today and he said basically, take it or die. He did some research and found a dermatologist who specializes in Tarceva effects, and other oncological issues. I couldn't get an appointment until the end of October. I really stay away from sauces (except spaghetti sauce). I usually start to trot about 1-2 hours after I take Tarceva, so I plan my life around it. Good Luck
I am still thinking about your problem with Tarceva. I wonder if the time of day makes any difference. I take mine in the morning one hour before breakfast. I then eat a pretty good breakfast. I am glad that I have no side effects, but I just wish I could help the others that have the bad effects. I think exercise to the point where I sweat helps with the skin irritation. I also sit in hot water spa for about 15 mins. This also causes me to sweat. I can feel a little itch on my legs at times. The exercise and hot soaking takes it away. The water is not real hot 102 degrees. Let me know if you get any relief. I also notice the people with a lot of trouble are taking 150mg of Tarceva and I only take 100mg.
Ernie
You should call the dermatologist directly, and push for an earlier appointment - for heaven sakes you have cancer. You shouldn't NOT have to wait 2 months!
Sometimes you have to push a little bit, as those who do the scheduling for the Doctors (sometimes the doctors themselves) are often oblivious.
Good Luck
I am excited to hear from you as a long term Tarceva user. It is encouraging to hear and I pray for your continued success with the drug.
My husband has been on Tarceva since May 2006. Tuesday we hear the results of his first scan. We pray that it good news!!
We found some great information on handling the skin rash and dry skin side effects directly related to Tarceva at Cancercare.org. (The direct connection to the archived site is http://cancercare.org/get_help/tew_archive/index.php)
I don't remember if it specifically addressed the "trots" because it is only an occasional side effect for my husband. Have you tried taking the drug at night to see if that helps?
The information we got from this teleconference solved the severe rash that my husband got after only 6 days on Tarceva the first time around. He came off for a few days then started again and his Dr. prescribed some steriod cream for his face. His face will almost clear up at which time he switches to a moisturizer so he can come off the steriod cream for a little bit. The rash will come back but he starts on the cream again and we go through the cycle again.
God Bless you!
Phyllis