New to Tarceva

naomipaints
  • By naomipaints · April 5, 2012 at 8:01 pm · 17 replies
  • In Non-small cell lung cancer - Stage III
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I was first diagnosed with Stage 3-B Non-Small Cell Lung Cancer in Aug of 2008. So I have been lucky to have made it for over 3 1/2 years so far!

But the clinical trial that was so good for 1 1/2 years finally stopped working, & my Dr. at Johns Hopkins gave me a 9-month break. So, I took my 2 sons to Europe for 2 weeks & then had my right knee replaced!

Then my Dr. put me on Gemcitabine, which made me unable to breathe.....pretty awful! Last week, since my tumors all grew a lot the previous couple of months, he put me on Tarceva. (I don't know if I have any mutations or not yet.) I have to put 2 creams on my face & stomach twice a day to keep the bad rash away. I haven't had too much nausea or diarrhea so far.

My question is: How long does Tarceva work if you don't have the right mutation for it? And, how long does it work if you do have the right mutation?

Thanks very much,

Naomi

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17 replies   

moorland

hello

my husband is new to tarceva he hasnt had the mutation test either we are in the uk

from what we have been told the oncologist wants to keep him on it for about 3 months

im sorry i cant answer your questions as to the effectiveness of it but we see oncologist next week if we are told anything that i think may help you i will post it

what we have been told is that if it doesnt work he will be tested for the mutation for something called criznotib as a clinical trial

i wish you well on the tarceva journey and i pray it works for you take care xxx irene

tampamurray

I know people that have had success with Tarceva for several years. I've heard that if you have the rash, then it's probably working for you. I started on Tarceva 2 months ago and haven't had any rash or other side effects. Coupled with the fact that my tumor markers are rising, we're assuming it's not working for me, even though I did test positive for the mutant gene. Go figure. In any event, it sounds like it's working for you and, as I said, so many people have great success with Tarceva, so stay positive and good luck!

naomipaints

Thank you both for your fast replies and good wishes.

Irene, I hope the Tarceva works for your husband.

"tampamurray" : I'm sorry that Tarceva isn't working for you. By the way, what do you mean by "tumor markers"? My doctor never mentioned anything like that.

I'm trying to stay positive, although my younger son is visiting me & he says that I have too many negative thoughts in my head! I just don't know how to get rid of what's in my head!! Maybe I should try meditation!

enricoforex

Hi Naomi,

I started Tarceva 10 days ago and got the 1st sign of a rash on day 2. I now have grade 2 rash (scale of 4) all over body but lucky not itchy or painful at this stage, just very annoying during business meetings and the explanation required.

As for a couple of your questions,
For non mutation positive, I haven't heard of a long run with Tarceva as it typically shows no success after a couple of months. As for those with a positive egfr mutation, the "typical" person gets to about 8 months - 1 year before it stops working. However, I know a host of people who are surviving (and cancer free) from 2-7 years now. I also know one guy at 11 years now! There is hope for all of us so keep the faith.

Irene, the Crizotinib Pill is given to the small percent of lung cancer patients who test positive for the ALK mutation. I have a friend who is now over 6 years on this targeted therapy and still cancer free after stage 4 nsclc.

God Bless,
Enrico

moorland

hello enrico

thankyou for your reply and the info re the criznotib just not sure if the tarceva is working for my husband yet having awful issues with him not eating at the moment ive posted about this

take care irene xx

moorland

hello naomi

thankyou for your good wishes xxxx hugs i pray for good results for you with the tarceva

irene xx

moorland

hello tampamurray

im sorry the tarceva isnt working for you hugs xxxx I hope you are given a treatment that has a positve outcome i wish you well

irene xx

naomipaints

Hello Everyone,

Thanks Enrico for the info about how long people can last on Tarcevo. I hope your rash gets better soon.

My rash is more of a pain in the neck than anything else: I put on 1 cream & then an hour later I put on another.

What is really bothering me is this: my eyes are burning, dripping, swollen & I can't see very well. I went to my eye Dr. & she gave me drops & a med to put on my eyelids, but unfortunately, nothing is working. Has anyone else on Tarceva had problems with sore, dripping, swollen eyes? If so, how did you solve the problem?

Good luck to everyone out there,

Naomi

AussieLinda

Having the rash does not mean it is working - people have had the rash and it hasnt worked at all.

If you are on Tarceva as a first line treatment then you probably have the EFGR gene mutation. If it is a second or third line treatment then they try it whether u hab=ve the mutation or not. Im on my fourth line of treatment with Tarceva.

naomipaints

Thanks, AussieLinda. How is Tarceva working for you? Today I woke up & discovered that the rash is now all over my chest, as well as my face. My tongue also has a spot that hurts, & my eyes are sore! Otherwise, I'm fine!

AussieLinda

Hi Naomi I am now on day forty something. I still haves bright red rough peeling face. It's a little itchy and I just slather it with a product called Bio Oil. I have very dry skin on my body but not many spots. I take Doxycycline100 once a day and it's keeping the rash under control. I don't have any other symptoms at present and certainly no fatigue. I am out most days either working or enjoying my life - not going to stay home and mope anymore. Hope things are good for you.

naomipaints

Hi everyone! I'm sorry I forgot to post what happened to me with my Tarceva. Unfortunately, even thought I had very bad side effects (rash all over, painful peeling neck, infections in eyes & mouth, etc), I am sorry to report that my tumors continued to grow & my Dr. at Johns Hopkins took me off of Tarceva as soon as he saw my CT scan.

After that I went back to Georgetown U (where I began my cancer treatment almost 4 yrs ago), & I was shocked when my Dr. told me there was nothing left for me to do & I should just go to Hospice! I asked him if I looked like I was about to drop dead, & he said no, but I could die at any time! Needless to say, I got very depressed from what he told me.

After that, I went to NIH/NCI & they told me I wasn't about to die, that they would do another biopsy to see if I had any mutations, & that they would definitely have something for me even if I didn't have mutations.

But last week NCI told me that I have no mutations & that since I have already had 4 cancer treatments, I am not eligible for any of their clinical trials. They also said they do not know what any other hospital might have, & that I have to look myself to see if anyone has anything that might work for me.

I'm afraid that I am losing hope that there is anything out there for me. I really don't want to die because I have 3 children who desperately want me to stay alive!!!

Does anyone know of a way to find out which hospital in other cities might have something that might help?

Thank you so much,
Naomi

TikitimeGal

Hi Naomi,

I'm sorry to hear that the Tarceva is not working for you. I have stage IV NSC Lung cancer and started on Tarceva 9 days ago. Prior to starting the Tarceva I sought out alternative cancer treatments and went to a clinic in Mexico where they treated me with intravenous high doses of vitamins and put me on a whole foods organic quasi vegetarian diet and numerous supplements. I was there for 2 weeks and continued the diet and supplements after I got back. I recently went to a new onc here in the US and he did another scan and my tumor had shrunk. Although I had made progress in Mexico the natural way I decided to stay home and try the Tarceva. So far side effects have been mild and my cough has gone away. There are many alternative cancer treatment centers that offer hope when all else has failed. The only problem is some are not covered by insurance and can be very costly. Try this website: www.alternativecancerclinicsusa.com. Keep the faith and you can fight this horrible disease. I wish you the best.
Linda

RAZRBK

Naomi,
When I started Tarceva it did the same thing to me. I talked to my oncologist about taking doxycycline (100 mg cap) daily. It works but it has to be taken with food.

naomipaints

Thanks for the info. I had a terrible reaction to doxycycline (swelling of face, mouth, tongue, etc, after just 1 pill!)

I am going next week to a local oncologist who might be able to find me a clinical trial. Also, they told me at Penn (in Philadelphia), that the Dr there might also be able to find me something. So, I'm trying not to give up hope.

Naomi

Rustieglo

My husband has been on Tarceva for 3 months with almost no rash, very little diarreha and a lot of fatigue. I spent most of those 3 months trying to find alternatives because everyone had said that without a rash, the Tarceva must not be working. On July 16th, the onc announced that my husband's primary tumor had reduced by almost 50% and the other tumor and lymph node were close to that reduction. His spinal mets appeared to have been treated and new bone growth was noted. So I wouldn't assume any particular side effect would indicate success or failure.
Given the amount of treatments you have received, have you considered a Functional Profiling Assay? There is an excellent discussion about this under Lung Cancer Stage IV entitiled "Is rational therapeutics a scam????" It is a discussion about testing your biopsy with different treatments to see what would work. I'd certainly give it a read.
Have you contacted MD Anderson for a second opinion?
http://cancergrace.org/lung/2012/04/03/radiation-to-address-cells-with-resi stance-to-targeted-therapies/
This is a link to an article about radition for cancers resistant to targeted therapies.
I highly recommend Cancer Grace for the wealth of information they provide.
Given that my husband has only been fighting for several months, I am very encouraged with your 3 1/2 years, and I hope and pray you have a LOT more years ahead of you.
Best wishes and lots of hope!
Rustieglo

naomipaints

Thank you so much, Rustieglo. It's wonderful that your husband is having such good results! (I've now been alive for 4 years since diagnosis, but would love to live a lot longer!)

I will definitely look into a Functional Profiling Assay (I had never heard of it). I also want to contact MD Anderson, too.

Thanks again for your help,
Naomi

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