Good Medicine...

I was one of the lucky ones...I was asymptomatic when the doctors told me that I had NSCLC (non small cell lung cancer) back in 2002 and again when it reappeared in 2005.

In March of 2002, I woke up one morning with not being able to see clearly out of my right eye. As the morning progressed, I got a terrible headache and could not see color or detail. My ex-husband who is a physician, told my daughter to take me to the hospital because maybe I was having a mini-stroke.

The ER doctor saved my life. For no apparent reason, other than that is what he does when people come through his rotation, he took a chest x-ray. The next morning I was called by my ex-husband to return to the hospital for another x-ray...he thought the techs had mislabeled the x-ray because he couldn't see any breast shadows and mostly because there was a shadow on the left lower lobe of my lung...and I wasn't a smoker. I retook the x-ray and sure enough, it was correct. I had lung cancer.

After a CT scan and then a PET scan...a pulmonary doctor suggested I bypass having a biopsy and just have surgery to remove the portion of my left lung that had the lesion in it. I did.

My oncologist told me that there wasn't a protocol set up for administering chemo or radiation when so much lung was removed and the margins were clean. So, I went on my merry way.

After about 3 1/2 years of having routine CT scans every 6 months, after having one in June of 2006 I received the awful news that I had 6-8 months to live if I did not receive treatments immediately. The lung cancer was not in my lungs but had metastisized to my trachea and collarbone...I was in stage IV.

My oncologist suggested I have an MRI of my brain and sure enough the cancer had spread to my left cerebellum. I had surgery in July to remove the tumor and soon after began an 18 week course of chemotherapy. In between treatments my neurosurgeon recommended that I undergo Cyberknife to give boosts of radiation to specific areas around the cerebellum...just to play safe.

Well, in December of 2005 I was pronounced to be in remission and began taking Tarceva every day...my skin became extremely dry and I broke out in a rash here and there...but, if it was going to keep me in remission, I didn't care what the side effects were going to be.

All was well until June of 2006...after some PET/CT scans (which came out clean), I had an MRI...bad news...the cancer spread throughout my cerebellum area and to the top of my brain. I had an ommaya reservoir inserted into my head (for intrathecal chemotherapy) and then began 10 treatments of whole-head radiation. Two weeks after that ended (Nov), I began the chemo for 4 treatments. (I had the ommaya reservoir removed in Sept.)

After an MRI, PET/CT scans were taken at the end of February...I am pleased to announce that I am in remission.

I must say that I did not feel ill until I began the radiation treatments. Not once did I feel unusually ill after the chemo back in 2005, but after the radiation in 2006...my body started to complain alot. Due to some brain swelling during the radiation treatments I was put on Decadron plus Advil...bad combination for me since I had a sensitive stomach to begin with...I began having stomach aches, acid reflux, not able to eat a regular meal as I used to. I now have to eat 1/2 the amount at one meal that I did before. Began Nexium and that has helped. This I can live with. I have also noticed my eye sight has changed.

I realize living with the threat of my cancer veering its ugly head again is a great possibility and that I need to manage my life and stay on top of this. I dread the weeks leading up to getting scans...the anxiety is awful, but if the lung cancer reemerges again...I'll just do what my doctor tells me to do, put my warrior face on and just get through it.

I tried to go to lung cancer support groups, but to my dismay I was usually there by myself or with men who had lung cancer from smoking...not NSCLC.

I am anxious to communicate with some women who have NSCLC and are in remission. I need to hear from survivors and unfortunately I haven't been able to meet any yet.

Are you out there?

Ricki

Wow..... what a past.  My mom was dx with NSCLC stage 4 Feb. 06 and she was asymptomatic.  They found a spot on a fluke chest x-ray because of a year long of shoulder pain.  I made sure they did PET/MRI and everything inbetween.  She had multiple leisions in both lungs, met to bone (obviously!) and brain.  She had whole head radiation and shoulder radiation and 4 sessions of chemo.  The chemo really hit her hard.  She went from 195 pounds to 135 in 4 months.  June 06 was her last chemo.  In Jan. 07, tumors started to grow again.  So she started on Tarceva and she is doing better.  Prayers and good thoughts to you.

Gretchen

I am female, mid 60's non-smoker.  I had some pain in my chest, and a chest x-ray was taken.  They found cancer in my right lung, non-small cell in the lower part and squamous cell at the top.  I had surgery to remove both, then chemo, and am now on Tarceva.  It will be 2 yrs in May 07 and I have been on Tarceva for 16 months, have 8 months to go. I did not go to any support groups, everything I read said to stay positive and not to dwell on the negative.  I stay busy with my grandchildren, husband, friends and family.  All my tests are negative. Enjoy each day, stay happy andkeep it in the very back of your mind. Stay away from people that are sad for you, make them laugh and be happy with you.  Each day is what we make it.I had my first haircut in 18 months, last week.  My hairdresser and I were laughing about the buzz cut he had to give me.  Stay positive and be happy.  You are in my prayers  Love Vette

Your history sounds similar to my wife, a 55 year old life-long non-smoker who was dx in 12/04. She did not have surgery as the lung cancer had spread to her lymph nodes, but 4 months of chemo turned that around and then it stopped being effective so since May, 2005 she has been on Tarceva. She has good energy and manages the side effects much better now. At first there were very severe rashes and lower bowel issues. During the chemo she lost her hair and then the Tarceva caused rashes on her scalp that left areas which did not recover. It slowly has gotten better, but she is frustrated that her hair is not growing back in as fast. Have you seen any increase in the hair growth the longer you are on Tarceva? She has tried rogaine, but have you any other suggestions?

 We hope the Tarceva will continue to hold he cancer in check. Her CT scans continue to be clear even the primary tumor in her lung. Our doctor tells us there are a whole bunch of next generation "Tarcevas" on the way with some already in people testing modes.

On 3/30/2007 Perry wrote:

Your history sounds similar to my wife, a 55 year old life-long non-smoker who was dx in 12/04. She did not have surgery as the lung cancer had spread to her lymph nodes, but 4 months of chemo turned that around and then it stopped being effective so since May, 2005 she has been on Tarceva. She has good energy and manages the side effects much better now. At first there were very severe rashes and lower bowel issues. During the chemo she lost her hair and then the Tarceva caused rashes on her scalp that left areas which did not recover. It slowly has gotten better, but she is frustrated that her hair is not growing back in as fast. Have you seen any increase in the hair growth the longer you are on Tarceva? She has tried rogaine, but have you any other suggestions?

 We hope the Tarceva will continue to hold he cancer in check. Her CT scans continue to be clear even the primary tumor in her lung. Our doctor tells us there are a whole bunch of next generation "Tarcevas" on the way with some already in people testing modes.

On 3/30/2007 Perry wrote:

Your history sounds similar to my wife, a 55 year old life-long non-smoker who was dx in 12/04. She did not have surgery as the lung cancer had spread to her lymph nodes, but 4 months of chemo turned that around and then it stopped being effective so since May, 2005 she has been on Tarceva. She has good energy and manages the side effects much better now. At first there were very severe rashes and lower bowel issues. During the chemo she lost her hair and then the Tarceva caused rashes on her scalp that left areas which did not recover. It slowly has gotten better, but she is frustrated that her hair is not growing back in as fast. Have you seen any increase in the hair growth the longer you are on Tarceva? She has tried rogaine, but have you any other suggestions?

 We hope the Tarceva will continue to hold he cancer in check. Her CT scans continue to be clear even the primary tumor in her lung. Our doctor tells us there are a whole bunch of next generation "Tarcevas" on the way with some already in people testing modes.

Hi  My hair growth slowed when I went on the Tarceva.  It is Very short on the top. Longer on the sides and back. I have become a hat person.  I have hats in all colors, baseball as well as visor hats.  I find that Walmart and Khol's have the best selection and they are under $10.00. People I do not know tell me they like my hat.  Little do they know there is not much under it!!! But it makes me feel good.  I am not sure about using Rogain, I would check with the Dr.  I take 2 lomotil before each meal and it helps. My finger nails are a mess, and split skin, so I go and have a pedicure. I have never had a manicure!  You have to do things for yourself. I was out with my husband, we stopped at a homemade candy shop.  I bought one choc "Turtle" candy. Yum Yum This may sound silly, but enjoy each day do something fun,  keep in touch Vette

Hi Rickie  I saw your message I also am a nonsmoker with NSCLC, I also had squamous cell in the same lobe, very unusual.  I consider myself a survivor.  It will be 2yrs on May 1st.  I am on Tarceva with a few side effects,I take Lomotil for the diarrhea and eat a rather bland diet, but that is OK.  I have my BIG checkup in a few weeks, and I know what you mean about being  nervous before it!!  I am feeling great, however, I was feeling good before I was diagnosed.  I am  in my mid 60's and enjoyng my grandchildren, the first of which was born when I had my surgery in 2005,  Now I have 4, what a joy.   Keep up your good spirits and remember the power of prayer and a good attitide.  Vette

I was diagnosed with nsclc in dec 04 had right lobectomy in jan05 was

cancer free till last month and then found in left lung I was taken off

the tarceva before but I feel it was really working I am just living every day to the fullest I am back on tarceva now and waiting foe my next ct to see

if its working

It has been a while since I checked the message board. I lost my hair when I had chemo in 2005, but as soon as chemo stopped my hair began to come back in. Tarceva did not affect my hair growth that much...maybe it came in a bit slower than if I were not on Tarceva. But, after having whole head radiation...due to my NSCLC metastasizing to my brain, my hair has taken a much longer time to start coming in. I ended radiation in November of 2006 and now that it is May 2007...it is growing in much slower and coming in very thinly. On the top of my head there is a patch where it coming in worse than the rest of the head.

 But...so what. It will do what it will do. At least the Tarceva is keeping my cancer dormant and I feel well.

Ricki