38 years old with stage 4 lung cancer soon to be satrting Tarceva,is there hope????

Hi, amanda v,

How is your mom now ? Is she still taking tarceva ? I have been taking it for 9 months. It was effective , however, two weeks ago, the new ct scan showed the tumor is larger. I want to know anybody who takes tarceva will show good improvedment each time taking c-t scan .

Thanks.

Yenyen

A

On Sep 17, 2010 5:48 PM cokers wrote:

Hi there,I am 38 year old female with stage 4 lung cancer (adenocarcinoma).I am devestated by this I have 6 year old twins and never been ill in my life until now.

I am on last chemo session (4th) and tumor not shrunk but has not progressed either.  Dr. wants me to go on Tarceva after 4th chemo treatment.I have heard alot of good about it.I have been so depressed lately as been having lots of lung cancer side effects,does anyone have any positive stories about a similar situation to mine?

I need to stay strong and have years to come with my young family and would appreciate any advice or stories my way. Hope to chat to you soon

Sharon

ps I live in the UK

Sharon

The "Standard of Care" everywhere as far as i know is CarboPlatin and Alimta Chemo for N Stage Lung Cancer. You should ask your doctor about that before jumping into Tarceva especially without having the Mutation test and knowing you are EGFR Positive. Tarceva is vary nasty and fairly ineffective if your not EGFR Positive. See the link below:

"Erlotinib only works with cancers that have an EGFR mutation":

http://en.wikipedia.org/wiki/Erlotinib

Read the Clinical Applications part.

I am a 4 time Lung Cancer Survivor Large Cell Adenocarcinoma same as you. I am back to all clear now for a fourth time.

All My Notes are Here:

http://www.liveforeverwithcancer.com/

http://www.facebook.com/pages/Live-Forever-with-Cancer/12995

John

I am 59, and I was diagnosed with 4th stage lung cancer by the specialista in Bangkok Hospital, last January. Seeing my condition, the doctors decided  not to operate my tumors. Instead I took 10 sessions of Radiation and then started taking TARCEVA 150 mg tablets orally since Feb, 2011.

The good news is - the tumor in my liver has almost vanished, and the tumor in my lung is shrinking gradlly. This is a miracle!!! Side effects are common - you  have to accept that. I had itching problem. I had rashes all over my body. But the greatest news  in my life is - I am feeli much better now and I take TARCEVA every alternate days now.I dont really know how long I have to continue to survive!!! This isa very expensive medication. I have retired last June and I long can I really continue to spend 100 dollars a day for my treatment?????

Wishing you best of luck!!! Keep on taking TARCEVA you will definitely see some good results - if this suits you.

Hello.  I have been on Tarceva for a few years now and it has really slowed down my stage 4 lung cancer.  Yes, there are some side effects, but for me, they are manageable and tolerable.  I've had surgery, chemo with cis-platin, radiation and now this, so we've had a similar road.  However, I'm 71 going on 72 this month, so you are in a much better position to fight this.  Also, it was at least a month before I started on Tarceva after my last radiation.  Stay in touch here and we can all help each other!

Sharon -

There are a couple of older women in my lung cancer support group that are NSC and are on Tarceva for about 2 years and seem to be doing well.   One of the side effects of Tarceva is rashes and itchiness.  The drug has bought them a lot of time.

One woman was diagnozed in 2006 and given 2 months to live.  That was 5 years ago.

I am in a clinical trial for ALK mutation call Crizotinib.diagno sed in 2007 NSC Stage 3 at that time - now stage 4.  I have been through a lot but right now I am stable and having the best summer ever.  You would never know that I am Stage 4 if you met me.  I have regained normalcy in my life.  You get there too.

Focus on HOPE; focus on what you CAN do; focus on love and beauty and believe that you can win.  Attitude is very important.  Enjoy every moment of your day with your twins.  Live in the present.

The longer we live, the more options we have for treatment.

Margot

Hello,

Sorry to hear about your diagnosis.  You are the first person that I have found that is younger than me.  I am 47 and was diagnosed 8 months ago w stage 4 nsclc w mets to the adrenal gland and brain. 

I tested EFGR positive and was stared on Tarceva within a couple of weeks.  After 3 months the met on my adrenal gland was gone, and the met on my brain shrank within 1 month and the tumor in my lung was shrinking.

After 6mo(6/11) the tumor in my lung was gone and was considered to be in remission, although I still had a small met on my brain, but I had no "active" cancer cells.

I just had another MRI of my brain last week, and that lesion is completely gone. 

I just had a Petscan today, I will know tomorrow if I am still in remission. 

Does this answer your question??  There is always hope as long as there is faith.  I had alot of people pulling and praying for me.  Hope and Faith got me through this, not to mention a miracle little pill called TARCEVA.

So, keep your head up and fight!!   You will hear postitive strories as well as Negative.  You just keep fighting and praying. 

Hope my story helps

Best of luck to you, and I will send postive vibes and prayers your way.

Lilia

Hi, Sharon - I am a 56 year old female who was diagnosed with Stage 4 non-small cell adenocarcinoma, with mets to brain, bones and liver in April, 2005. So from my point of view - YES!  There is definitely hope!  I have been through all of the chemos; embolizations; radiation and finally Tarceva.  Although I still have cancer, I've been stable since Aug., 2010 and have been off of all drugs and other treatments since then.  I'll be gettings more tests this month to see if I'm still stable.  I had some side-effects from Tarceva, but I think that it was worth it.

I'll be praying for you and your family - may all go well!

Laura

Sharon ,

I was diagnosed in mid 2008 for Stage 4 NSCLC ( adenocarcinoma ) and it is now more than 3 years.

Along this 3 years, I go thro' first chemo with Carboplatin + Taxol for 6 cycles , the result is stable with no changes to quantity and size of tumor.

Thereafter, onco recommend me to try Tarceva , I took Tarceva for 2 1/2 months with quite serious of rash over my body and face. After 2 1/2 months , CT scan show no changes again. ( note : As per my study into Tarceva in many lung cancer forum, it did works very well for many lung cancer patient . )

Thereafter, I took a rest for 1 1/2 months and start with Cisplatin + Alimta . The side effect is quite bad and I feel weak . After the 3rd cycle, CT scan show no changes, so, I decided to take a rest from treatment, in order to rebuild my body system, before further treatment.

I took 3 months rest and back to chemo treatment with only Alimta . After 3 cycles , CT scan again show no major changes. So, I decided to off treatment after discussion with onco . I took one year off from treatment.

After a year, my lung build up with fluid ( right lung collapse ) and proceed to drain out, then, proceed with Alimta . The side effect is quite bad, so, after the 2nd cycle, I took CT scan and it show condition back to stable. ( during the one year of off treatment, the largest tumor grow from abt 4 cm to 8 cm ) .

Since it's stable, I decided to off treatment again and after 7 months ( in May 2011 ) CT scan show stable , no major changes to the tumor, but, CEA tumor marker is rather high.

Then, in August , I took another CT scan and tumor grow to 11 cm just in 3 months .

So, I decided to start my chemo again with Taxotere and next monday will be the 2nd cycle .

What I am sharing with you is that there is hope .

One important thing that we need to take note is that we can not afford to fall sick, so, it is important for us to stay healthy with proper diet and exercise , rest when tire .

Meantime, you may visit to Cancer Grace (www.cancergrace.org) , this site is very focus on lung cancer and there is onco there to share their opinion and it is very informative with all the chemo drug for lung cancer and what is latest reseach .

I wish my sharing is helpful for you and wish you have a good recovery .

God Bless

SK

Dear Sharon,

I am so very sorry to hear of your diagnosis...Any diagnosis with 'cancer' in it is hard to hear receive...

My mother who had turned 86 in May just passed with Adenocarcinoma..but, she was diagnosed a year and half ago..and had many, many other health problems, including congestive heart failure..and old age..just to name a few..

She took the tarceva when first diagnosed ( the only cancer drug she took)...which the oncologist said did not help her..but, I think it did..She did not lose her hair..but, did have problems with extreme dry skin..which is treatable..She did not suffer any nausea, etc..from the treatment..It seems to be one of the side effects they were afraid of...

Because of her advanced age...and other ailments..she was only expected to live a few  months when diagnosed..but, she did well until the end...a year and half...Since you are young..and have a lot to live for..I think you will have a good long life..if you are careful what other drugs they give you..

Under no circumstances let them give you the combinations of morphine and ativan...and fentanyl...which impair your breathing...even if you do not have breathing problems..I have had asthma for 40 yrs..and have had an excellent doctor who has always kept me abreast of medications to stay away from...that cause breathing problems for those of us who cannot tolerate them.

The combination of those drugs is like tying a plastic bag over your head...My family, who is woefully uneducated on these drugs refused to listen to me..and I saw my mother

gasping for air that she badly needed...It was heartbreaking for me that no one....not even the Nursing home doctor would pay attention...

You have done the right thing by seeking out information and keeping yourself educated...Look up drug interactions for lung patients...drugs to stay away from when you have lung ailments..etc...and you will do much better than you may think.....Do NOT be afraid to ask your doctor many, many questions..it keeps them on their toes..and once they realize how involved you are in your care...they take a lot more action..!!..

My prayers are with you.... Contact me any time you need someone to do research for you...We have an incredible amount of knowledge at our fingertips..

You always have a shoulder to lean on with me..

HearMe

Hi, I'm Sue. I was diagnosised with stage 4 lung cancer last fall at 56. I started out taking just the Tarceva. I was tested to see if I had the marker that Tarceva works on. I did. My tumors started to shrink and i was doing better until about march when the cancer went wild and spread to my hips and liver. The tarceva wasn't helping those spots but was still shrinking the lung tumors. I went on Chemo for the liver cancer and radiation for the hips. Now the hips have no cancer and the liver has continued to shrink. I am still on the Tarceva as my doctor believes it will still work for the lung cancer and I'm on a maintenance chemo every 3 weeks that is not as strong as what i was on. Its called Pemetrexed, you can grow hair with this and side effects are not as bad as other chemo. I'm now going back to work in 2 weeks so things are getting better.

Stay strong, its a battle that can be fought.

Sue