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Not Great News-Officially off of Clinical Trial


ursol

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Last week Monday I had a PET scan that showed my adrenal gland tumor hotter and it looked as though there was uptake on a lymph node in the Vena Cava area. Still have not understood where that is but saw it today on a CT scan. Had the CT scan friday and the CT scan confirmed growth of the Adrenal gland tumor as well as this lymph node involvement. Therefore I'm off the trial as of today and start Tarceva tomorrow.

I tried really hard not to cry but I did anyhow...I feel once again overwhelmed with disappointment. The Doctor told me to expect a rash within the first couple weeks. I'm really nervous about having a rash all over my face. Would love to hear others experience. Also I am not a never smoker and do not have the EGFR mutation and am not asian. I only have gender going for me so would love to hear from others where Tarceva has worked yet you did not necessarily follow the mold of being the type of person it tends to work for.

Anyhow, here we go again, I'll know in 7 weeks or so if this works or not.

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Hi Lilly,

I'm sorry about the trial. Tarceva should have worked for me and didn't (had everything except not Asian - don't know about EGFR), so maybe you'll be the opposite. I don't think they know why it works sometimes and not others. I'll be praying for you to have an excellent scan in 7 weeks.

Raney

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Aw Lilly, I am not convinced there is a true mold to adhere to as far as Tarceva is concerned. It's woking for Jamie :lol: , but didn't for Tracy :( , a never smoker. I just HATE it every time you have to strap yourself back in and go whirling around this ride know as lung cancer :roll: . There IS tx for you, I know there is. In fact, for many, tx breakthrough is right around the corner. We must keep in the fight until that day arrives. And arrive it will.......mark my words, Lilly.

It's hard not to be scared and yes, even cry. I do. Then come here for all the support you need to do what you know you need to do. I am now a varsity cheerleader.....especially for all you young sweet gals (guys too).............I think many more are joining my team too.

Much love and hope to you, hon.

Kasey

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Hi Lily,

I'm a former smoker (quit the day I was diagnosed), non-Asian woman who has been doing wonderfully on Tarceva for 15 months. The rash is horrible when it first appears, but it can be quickly controlled with antibiotics. Feel free to PM me with any questions. I'm saying lots of prayers that Tarceva does the trick for you.

Trish

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Lillian,

Sorry to hear the trial didn't work out. Tarceva has been a miracle drug for me and I hope it works it's magic on you. It's been over 2 yrs now, I haven't ever been tested for the mutation and I was a former smoker.

PM me if I can help out in any way.

All the best,

Sharon

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This is from an article I found not too long ago Think Positive. We have had so many success with tarceva. Sayin a prayer. RandyW

Rash appears to improve cancer survival

PHILADELPHIA, July 3 (UPI) -- An acne-like rash that often occurs with use of the anti-cancer drug erlotinib --sold as Tarceva -- is linked to an improved chance of survival.

In a detailed analysis of the side effect of the agent that targets the epidermal growth factor receptor, doctors said Tuesday the rash appears to indicate the drug is working against the cancer.

"This rash, which often looks like acne, can be unpleasant enough for some people to consider discontinuing treatment, but it is important for physicians and patients to understand that this a positive event because it means there is likely to be a better clinical outcome," said Bret Wacker, director of biostatistics at OSI Pharmaceuticals in Melville, N.Y.

"Further studies are needed to both identify patients most likely to develop rash and to determine if dose escalation to induce rash can improve efficacy," he said in the current issue of Clinical Cancer Research, a journal of the American Association for Cancer Research.

Wacker and colleagues found that survival was about 2.5 times longer for patients with lung cancer when they developed the rash compared with patients who did not develop the side effect.

In fact, in the majority of cases, the more severe the rash, the longer a patient's cancer was held in check, researchers found.

"Some patients are stopping treatment because of the rash, yet those are the ones who are most likely to benefit," Wacker said. According to the researchers, these rashes can be controlled with mild steroids or antibiotics, and in most cases, they will improve with treatment.

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Lillian,

Oh -- hugs and love to you sweetie. I'm sorry that the trial didn't work out for you. Cry, punch a pillow, get rest and take heart that the next treatment may do wonders for you. Hell, even old caucasian men who smoked do well on Tarceva! (Not my old... though.) :roll:

Some people get a lot of rash and it works. Some people don't get much of a rash and it works too!

Welthy

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Lily,

At least you have gender going for you. I had none. I was pulled out of a clinical trial the day before I was to start. My oncologist then gave me aggressive Carboplatin, Taxol along with 100mg of Tarceva. I feel that I was much better off without the clinical trial. You are now getting a drug that has already done very well for a lot of people. Other than the supplements that I took during my first cycle, water and exercise I think help with the rash. I still try to drink an 8oz glass of water for every hour that I am awake. If you can’t exercise I think a hot soaking in a tub will cause you to sweat. I feel by doing these things that it helps keep my pores flushed out and may help prevent a rash.

I would consider it a good thing that you are going on Tarceva. I will be praying that it works a lot better than the trial would have.

Stay positive, :)

Ernie

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Lily,

I'm sorry to hear that the trial didn't work for you. Take heart and believe that Tarceva is going to work for you. Don't even question it. I'm am also on the verge of starting Tarceva. As many times as I can repeat it to myself during the day I say "Tarceva is working for me." Even though I haven't actually started it yet! I know two older gentlemen who have been on Iressa for over 2 1/2 years. Keep up the fight!

Take Care,

Rachel

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Lillian,

I am so sorry that you still have a battle in front of you. You have been fighting so hard. It would be impossible not to break down from time to time so don't beat yourself up over it. Life is definitely not fair. You have treatment options and will beat this. I am so proud of how strong you are.

Mendy

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Oh Lily,

My prayers and thoughts are with you...I know ALOT of people who do NOT fit the tarceva "mold" who have done extremely well with the drug....which is why I am so outraged for our friends across the sea in the UK who can't get it.....

Hang onto hope and know that this has been successful for others, and praying it is for you too!!

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Lily,

I just want to wish you the best. My mom started on Tarceva and had the rash within about 10 days. She had other side effects so it has been stopped for a bit and she will go on at a lower dosage, most likely. I've read many posts from members who have been on Tarceva and it's obvious that the "Tarceva mold" doesn't always apply. To find a lot of those posts you can click on Search and search Tarceva. My thoughts and prayers are with you.

God Bless,

Sue

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Lilly I remember that you started this battle right after I did and therefore I follow your posts very closely. You have many folks praying for you and I want you to Expect The Miracle. Sorry the trial did not work for you but I have a deep down feeling that this one will do the trick. Please stay positive and you have those wonderful kids in your corner cheering you on.

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