Overwhelmed By Statistics - Looking For Hope

My mom has been battling stage IV NSCLC for about 18 months now. We went through a year of chemo with no success (but luckily minimal side effects) and then 8 weeks of tough radiation. The radiation shrunk the primary tumors (in her lungs, nodes and spine) but in the meantime, new tumors appeared in her lungs and the adrenal gland in her kidney.

We've been very hopeful through all of this. She's only 57, and perfectly healthy otherwise. She's also a non-smoker (only smoked a few in her ealry 20s). The frustrating thing is that she's been handling treatment so well - but it just hasn't been doing the trick. Even our doctor is frustrated.

Luckily we live in a good area (outside Wash DC) and we have access to great care. They just put my mom on Tarceva - and supposedly she's a good candidate for it. We'll see how that's working in about 2 months. She is showing side effects - which I hear is a good sign with that drug.

For the last year or so, the whole family has been approaching this like it's a winable battle - only to keep getting our hopes smacked down every time there is a new consult with the doctor. My mom was devestated to hear about the new growth, and asked the doctor - how do I compare with most patients that are in my same situation? He calmly responded "most patients that I see at this stage, have not survived as long as you have." That knocked the wind out of all of us.

All of the stats give her very limited time. But she seems to be handling everything so well even though the cancer is continuing to spread. Her body has slowed down a bit from all of the treatment - but she is still working full time and running a household.

I'm scared because I'm trying to balance statistics with what I see with her on a day-to-day basis. When I see her I think "she's fine" but when I read about her situation, I am worried that she could suddenly go down hill at any time. It's plaguing me every day. And I have no idea, not even a sense of an idea of how long I have with her.

I am interested to hear stories about people or caregivers in a similar situation. I feel like we're walking a tightrope of living with hope every day and being scared that things could go downhill very quickly. I truly don't know what to expect. Could she survive like this for years? Or should I really be helping her plan right away for "worst-case scenario."

I'm an only child, and she's a single mom. We're really in this together and I have no experience to know how I should be approaching it. But lately I can't think of anything else. I would love to hear your thoughts. I have been reading your posts and am inspired by your lives - and I guess I could use a little bit of that right now to help me find a sense of normalcy.

Take care,

Nicole

I also have stage IV NSCLC.  I was first diagnosed over 6 years ago, when a routine x-ray revealed a small spot on my left lung.  After performing surgery to biopsy the tumor, it was determined that it was cancer so they removed the upper lobe of my left lung.  I was cancer free for over four years, and thought I might be so forever.  Unfortunately, at a routine exam in January 2005 my doc found new spots on my CT scan.  My cancer had returned, this time in the lining of my chest wall and in several lymph nodes, but not in my lungs.  I underwent 4.5 months of chemo, but it had no affect -- some of the tumors even grew a bit.  After a 3-month break to recover from the chemo, my oncologist put me on 150 mg of Tarceva each day.  I have been on the Tarceva for over a year now, and my cancer is stable.  Some of the larger tumors have shrunk a bit, and no new ones have appeared.  The side effects have been manageable, mostly zits on my face, chest, and back.  My hope is that the Tarceva will keep my cancer in check until a better treatment comes along.  I'm fairly healthy overall, other than some lingering effects from the chemo.  The only cancer-related problem has been the buildup of fluid in my chest.  I get a tap every 4 months or so to remove a liter or two, which hurts like heck but takes the pressure off my insides and makes me feel much better after a day or two.  By the way, I'm a non-smoker with no history of lung cancer in my family.

Tell your mother to hang in there and stay strong.  Lung cancer is a terrible disease, but I believe it can be beaten.  I plan to be here for a long, long time.

Jeff 

Jeff - thank you for your story! It fills me with hope. I just feel like I'm living in a bubble without much information about what this diagnosis really means for my mom. On the surface, and from what I see, I feel like she can manage this thing for a long time - just as you say. I've heard many people say that we can start talking about lung cancer more like a chronic disease. On the other hand, as you well know, the statistics are scary. I am living right now with the expecation that my mom will continue to beat this thing - just as your are.

In two months we'll find out how she is doing on tarceva. I hope that it works wonders like it seems to be doing with many folks I read about here on the boards.

A lot of this comes down to a healthy mind and body. And it sounds like both you and my mother have that!! I believe that with enough work, this thing can be beaten!

Thanks again,

Nicole

On 2/23/2007 Nikiole wrote:

My mom has been battling stage IV NSCLC for about 18 months now. We went through a year of chemo with no success (but luckily minimal side effects) and then 8 weeks of tough radiation. The radiation shrunk the primary tumors (in her lungs, nodes and spine) but in the meantime, new tumors appeared in her lungs and the adrenal gland in her kidney.

We've been very hopeful through all of this. She's only 57, and perfectly healthy otherwise. She's also a non-smoker (only smoked a few in her ealry 20s). The frustrating thing is that she's been handling treatment so well - but it just hasn't been doing the trick. Even our doctor is frustrated.

Luckily we live in a good area (outside Wash DC) and we have access to great care. They just put my mom on Tarceva - and supposedly she's a good candidate for it. We'll see how that's working in about 2 months. She is showing side effects - which I hear is a good sign with that drug.

For the last year or so, the whole family has been approaching this like it's a winable battle - only to keep getting our hopes smacked down every time there is a new consult with the doctor. My mom was devestated to hear about the new growth, and asked the doctor - how do I compare with most patients that are in my same situation? He calmly responded "most patients that I see at this stage, have not survived as long as you have." That knocked the wind out of all of us.

All of the stats give her very limited time. But she seems to be handling everything so well even though the cancer is continuing to spread. Her body has slowed down a bit from all of the treatment - but she is still working full time and running a household.

I'm scared because I'm trying to balance statistics with what I see with her on a day-to-day basis. When I see her I think "she's fine" but when I read about her situation, I am worried that she could suddenly go down hill at any time. It's plaguing me every day. And I have no idea, not even a sense of an idea of how long I have with her.

I am interested to hear stories about people or caregivers in a similar situation. I feel like we're walking a tightrope of living with hope every day and being scared that things could go downhill very quickly. I truly don't know what to expect. Could she survive like this for years? Or should I really be helping her plan right away for "worst-case scenario."

I'm an only child, and she's a single mom. We're really in this together and I have no experience to know how I should be approaching it. But lately I can't think of anything else. I would love to hear your thoughts. I have been reading your posts and am inspired by your lives - and I guess I could use a little bit of that right now to help me find a sense of normalcy.

Take care,

Nicole

Hi Nicole,

Your mom is young and sounds strong. She is also a non-smoker.  I think this helps us to be different from all the bad statistics. 

I am also a female, non-smoker, otherwise healthy, stage 3B Wet(same as stage 4) lung cancer patient.  I found out I had lung cancer when I was 49, after fighting strep throat (my son had passed along) and a bad cold.

 I have had several series of chemo treatments and I was on Tarceva for a year. I don't know if the Tarceva worked or if the cancer stopped spreading for a year. I had to take chemo again for a few months.  I had a PET scan recently - which was finally clear.  I will have to start a milder series of chemo as a "preventative" starting again Wednesday.  I know the Lord has bless my family and I with good health again.  I know many think this is a miracle - I think it is - but I also feel if your mom stays strong in her faith for healing, she too will be blessed. Everyday is such a blessing.  Please let your mom know I am doing well after 2 1/2 years, and I plan on enjoying my good life for many more. None of us know when our time to be called is, so let's enjoy the time we all have here on earth!

God Bless You Both,

Kathy

I was diagnosis with Stage IV Lung Cancer in July 06.  I have had 6 mo. of Chemo and 15 Radiation treatments.  I recently was put on Traceva 150mg and developed pimples and a rash.  My doctor put me on BenzClin (a topical) and the zits left in a couple of days.  They haven't come back for over a month.  Give it a try.

 As for Nicol, tell your Mom that there are many of us fighting the same battle.  I thought you were describing me when you were telling us about how your Mom felt and acted.  I feel good and people tell me I look good, just a little weary from the Chemo and medications.

Tell your Mom, we're with her and if George Bush would stop cutting the funding for cancer research, we would have a better chance.

I'm not quitting and she shouldn't.  Every day is a good day, and one more thing.   We're not Cancer Victims, we're Cancer Survivors.

Do one thing for me....look all over her body and see if you can find an "Expiration Date".

Kelseyboy

Hi Nicole:

I am surviving stage 4 NSCLC for now over two years.  Early on the doctors gave me but a couple two to three months to live as the chemo was not working. Thankfullyt I was directed by close friends to contact http://www.rationaltherapeutics.com/ . Rational Therapeutics™, Inc. (RTI) is a free-standing research laboratory located in Long Beach, CA. Founded in 1993 by Dr. Robert Nagourney, a prominent hematologist/oncologist, RTI pioneers intelligent cancer therapies that are scientifically tailored for each individual patient. By analyzing tumor response in the laboratory, RTI is able to identify which chemotherapy drug or drug combination induces cell death (apoptosis). This will determine which treatment program is most effective for YOU!

I'm on Tarceva now and the cancer seems to be moving into remission after two surgeries, multiple rounds of chemo. I think a talk with them might offer you some alternatives that are leading edge alternatives.  In my case I was a gonner by all "official" standards.  Working with Dr. Nagourney and their staff has made all the difference.  One more thing. Miracles do happen every day... all the time. Prayer works too. There is hope; I am living proff of that.  Whether the cancer comes back and ultimately sends me home or not this time has been a tremendously growth building, character building time.  Don't give up.  Smile, give your mom days of hope and check out RT, I know they can help you.  If I can answer any questions more directly I am reachable at rcarrollone@verizon.net and I would be happy to do so.  You are not alone.  You are loved.  There is hope!!!!!, n don't you forget it :)