Typical patient NSCLC EGFR - 1259877

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milotom
Typical patient NSCLC EGFR - 1259877

My husband and I are at the start of the cancer journey. He has been diagnosed with NSLC, is EGFR positive and (not sure how to write this) but the type is exon 19. He started tarceva today. Any tips to assist with, or help prevent, a rash would be welcome. Also, does anyone know the typical profile of this type of patient? He is 46, non-smoker, very fit. Is this unusual?

JimC
Reply To: Typical patient NSLC EGFR

Hello milotom,

Welcome to GRACE. I'm sorry to hear of your husband's diagnosis. It's good that he has an exon 19 EGFR mutation; it indicates a likelihood that he will respond well to tarceva.

The number one recommendation to help avoid tarceva skin issues is to keep his skin moisturized with a product that does not contain alcohol. The leading expert on such issues, Dr. Mario Lacouture of Memorial Sloan Kettering in New York, provided a very thorough discussion here: http://cancergrace.org/cancer-treatments/2011/09/08/dr-mario-lacouture-o... (he was my wife's dermatologist until he moved from Chicago to New York...a great guy with plenty of novel ideas on preventing and dealing with such rashes. If you're anywhere near New York I'd recommend seeing him).

Although the median age for a lung cancer diagnosis is much older, the disease does affect younger patients such as your husband. The fact that he is younger and otherwise in good health certainly can help, both in tolerating and responding to treatment.

I hope tarceva is effective for him and that he can keep the skin issues under control.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

marisa93
Reply To: Typical patient NSLC EGFR

I am sorry you have reason to be here but welcome to GRACE. This place helped me so much during my husband's journey. Wishing you both all the best.

Lisa

sherrys
Reply To: Typical patient NSLC EGFR

Miltom, I'm sorry that you have to start this journey, but I'm glad you found GRACE. I was diagnosed at the age of 49 and am also a non-smoker.

I have been on Tarceva for a little over a year. I have had many, many skin issues and have had my dosage reduced to 25 mg. The one thing that I have found to be the most helpful is exactly what Jim said - keep your skin moisturized. I use Eucerin Face Cream. It is the only thing I have found to help me. At this point, I get a rash on my face most every day, but it looks more like slight acne and the severity changes day by day. If I miss a day or two with the cream, it gets worse. I only use Ivory soap to wash my face. I also get the rash on my back - usually pretty severe - but I don't tend to treat it or worry about it. One thing that I have found is that if you have anything that breaks open, the rash will spread and get worse. Sometimes it is itchy and I will scratch without thinking and it will bleed. When that happens, I always get more.

One thing you didn't mention but I find that most of us on Tarceva suffer from, is the diarrhea. In the beginning, it was much worse. I think you may want to have Imodium or something similar on hand. I have found that it will hit without warning.

I personally take my Tarceva before bed because in the beginning it made me very nauseous. That turned out to be a good move for me since you are supposed to take it on an empty stomach. Now I no longer eat at night. :)

Good luck!

funnymom
Reply To: Typical patient NSLC EGFR

Google tarceva side effects busters and you should get suggestions. I personally like some of the non-alcohol Kiehls products plus doxycyclne helped me a lot with rashes.

I believe that egfr exon 19 deletion positive is more commonly seen in non-smokers. My medical emergency that led to diagnosis was ten days after I turned 50.

Good luck with tarceva.

Dr West
Reply To: Typical patient NSLC EGFR

I don't have anything to add to the great advice already offered here. Though activating mutations in EGFR are seen in many people with lung cancer, they are disproportionately seen in younger never-smokers.

As you can read in many places on the website, there is good reason to be hopeful that Tarceva will be very helpful for him. Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

milotom
Reply To: Typical patient NSLC EGFR

Thankyou everyone for replying with such helpful advice, the link to the dermatologist was particularly useful. Sitting here on the other side of the world to the US it is an invaluable resource to learn from your collective experiences.