Linking you to resources and support in the lung cancer community!
My husband has been taking Tarceva for 7 years. He was diagnosed with NSCLC 3B/4 and was placed on Tarceva concurrently with chemo. This was an off-label use and just 2 months after Tarceva received FDA approval. He was treated at Columbia Presbyterian in NYC. He is a nonsmoker. He has one of the EGFR mutations - I believe mutation 19.
My husband's cancer was inoperable and too broadly populated to use radiation - present in nodes throughout his chest, mediastinum and even chaining down one arm . Within days of starting Tarceva (150 mg per day), a lump in his clavicle was very noticiably smaller. The cancer receded and all the lymph nodes went back to normal size over several months. The lesion in his lung is smaller (it was never very large), and it may well now consist of only scar tissue. This is unknown. There is no evidence of any disease and has not been for probably over 6 years. Tarceva dosage was gradually reduced from 150mg to 125 mg to 100 mg over a long period of time. CT scans were reduced in frequency and now are once a year.
As for side effects, there was a terrible skin outbreak at the beginning. Clindomycin was prescribed first topically and then orally. This helped. My husband has had problems with his fingers (they have episodes of splits) and toenails (his large toe nails have had to be removed twice). His skin is very dry and his hair is brittle. However, the side effects, as they have evolved, have never been really bad (except at the very beginning), he feels well and his quality of life is terrific. He works out in the gym several times a week and is physically stronger than he has been in decades - he is 69.
I know this is kind of unusual, but it is a real case. He has been written up as a success story by Genentech internally for its employees and also by his oncologist's hospital. I write this to give others hope because good things can happen.
Inspire.com has a recent thread on cases like this and one of the posters has added up some successful cases of Tarceva use of lenghty periods of time.
Hello! I have been on Tarceva over a year now. I started out taking 150mg. and had so many side effects my oncologist downed it to 25mg. I have been NED now a little over a year. I do have the EGFR gene. I was not a smoker. I was diagnosed in June of 2010 of stage 3b adenocarcinoma. My side effects when I was at the high dose was nausea, breaking out. So far the 25mg. is doing great. Are you on Tarceva? Take care, Debbie
I am so glad to hear all these success stories. I also take Tarceva almost a year and a half now and I had stage IV lung cancer. It looked like a mist over my lungs. I was drowning in this fluid and I had a horrific cough. It took the doctor's 7 months to diagnose me. All the tests I had kept coming back negative. I had a biopsy, they open my chest to get a small piece of my lung tissue. It's short name is BAC. The first Tarceva pill I took dryed my lungs and I did not cough again. I started at 100 mg and the reaction was pretty bad but my doctor at MD Anderson kept lowering and shortly I was at 50 mg and have been doing great. I am 51 years young female and my doctor had told me that this was a miracle drug. I don't get as worried as I used to. I did loose most of my hair which is unusual, but it grew back very slowly and it is coarse. The only problem I have is insomnia, I take Ambien. I can tell you guys that this was the scariest thing I have ever gone through but lots of prayers kept me going. I am so happy that I read your comments..
Thanks soooo much for starting this thread & for those who posted. It has given us hope when only a couple days ago my sister was told there's nothing left to do & gave her 2-4 weeks. She got a 2nd opinion today & we talked about this drug thanks to the wonderful board members here! She is hospitalized as of yesterday & we are in a huge danger zone but have hope thanks to people here...thankyou so much!!!
Due to this forum, I asked about Tarceva (thanks to Amy & someone else who posted a whole thread on this). The doc said my sister has to get her platelets up to 70 or 80 before they could try it. They just sent tissue from the original biopsy to the lab 2.5 weeks ago to check for the EGFR mutation. I mentioned some on the board don't have the mutation but this med still helped them & she said she could try it either way if the blood count gets up but there's higher success rate with it if you have the mutation. She said about 25% of people without the mutation will get help from it.
New Update - had my CT Scans results this past friday and my lungs are doing great but I have 3 lymphnodes in my abdomen that are swollen. These lymphones were tested in 2010 and it did not show I had lymphoma. My doctor advice not to do biopsi and just go straight to chemo along with the Tarceva. The chemo is called "Pemetrexed". Has anyone experienced swollen lymphones?
I have been on Tarceva since July 2010. What a roller coaster.
My mom was diagnosed in 2007 with stage IV NSCLC and never smoked. She had Taxol and Avastin for about 7 months. It was killing her so they started her on Tarceva. She is doing well, very active, and the cancer has shrunk. She does have some terrible rashes at times, as well as diarrhea and has trouble keeping weight on. Overall, she is an amazingly active 80 year old who deals with these side effects with grace. We are trying to learn more about side effects to better deal with them. Jeannie
I have been taking Tarceva for over 2 and a half years or so. I take 50 mg daily because the side effects of the rash and acne was really bad. I even lost my hair with it. The good news is that my cancer has been in remission since then so Tarceva has been a life saving med for me. I still get a little rash and I handle the diarrhea with Lomotil I also watch not to eat mayonnaise which it brings on the diarrhea and also fried foods. My skin is very dry so I use lots of lotions. I used to get the rash in my nose let me know if that's a problem for her. Doctor had sent me something really good for that. Keep hydrated helps.
I also now do Alimpta IV chemo because my lymphnodes in the abdomen got swollen, I have been doing a maintenance once a month for a year now and all is well.
Take care and let me know if I can be of any help.
Last days of data collection for a a nursing research study that explores the symptom experience of patients who take EGFRIs as part of their cancer treatment?
EGFRIs include drugs such as cetuximab (Erbitux), panitumumab (Vectibix), erlotinib (Tarceva), gefitinib (Iressa), afatinib (Gilotrif®), or lapatinib (Tykerb).
This study will explore the impact of these symptoms on patient well-being and quality of life. To participate in the study, you will complete an anonymous survey. The survey will take about 15-20 minutes to complete.
For direct access to the survey, go to www.symptomclusters.com and click on STUDY PARTICIPATION and look for the SURVEY LINK, or you can click https://qtrial.qualtrics.com/SE/?SID=SV_0UmMd3GGBmR1xDm
Thanks to those who have already participated, and if you have not, but are interested, please click on the link to see if you are eligible. The study will close at the end of December.