To Dr.West or Survivors: NCSLC Squamous Treatment Ideas?

• By cuddles53
• Posted April 24, 2009 at 11:41 pm
• Report post

I also am a stage lV, just wanted you to know I am one with you in question to the doctor. I guess we are just getting nervous again. I too am looking for that 2nd line in case mine that is in a remission comes back. I am in remission 3 years, 4 months and was told tonight by my grand daughter that a friend of hers grandma has lung cancer too, she was in a remission for 5 years and it has just come back, so scary when things are going so well, and then again we have to start the journey all over again. Let us hope we can get some good answers on this one. Tarceva was sounding good to me??
From Sandy

• Reply

• By sunshine2gal
• Posted April 24, 2009 at 11:57 pm
• Report post

Cuddles,

What type of cancer do you have? Is it squamous as well? Tarceva was something I thought sounded good, but I was told it (and some of the newer meds) are not as effective with squamous cell. I don't know how accurate that is though, so I thought I would ask Dr. West for some ideas. Never hurts to throw a question out there!

It sounds like you are doing very well though!! I know you are scared and it's worrisome when you hear stories about cancer coming back, but remember, everyone is different, so yours may stay away!!

My mom was recently diagnosed, and I know it's hard not to think about it constantly like a bit wet blanket laying over you. When I feel I am letting it weight me down too much, I try to remember that for TODAY she is here, so life is good, and I should enjoy those moments...not let the "What if's" rob me of the healthy and better days I should be celebrating. I know...easier said than done, but I wish you as much peace of mind as possible. I will let you know if I hear anything interesting!

• Reply

• By cuddles53
• Posted April 25, 2009 at 12:23 am
• Report post

Hi Sunshine,
What a lovely name you have. I love Sunshine. We can use more sunshine here where I live in new York upstate.
I am glad you posted this for the doctor, I am always worrying about it coming back, it sounds like you are also for your mom and my heart goes out to you, all I can say is I am glad it is me and not my mother, I don't know how to cope if my mother had cancer, I feel so much also for my only child she is 36 but she worries so much about me, she doesn't always tell me, but I know she is right on top of things when I am not doing well, a great daughter I have, so compassionate, she is still grieving the loss of her dad some 3 years ago and now me, too much to bear for her.
so I hear about you with your mom, my heart really goes out to you, any time you want to chat in private, just send along an e-mail.
You know you would think I would have alot more answers to some of these things being in the medical field myself for so many years, but when it is you that gets the illness everything stops! I don't remember what the docs tell me, I block it out, I can't listen sometimes knowing this is growing in my body, thinking about it blocking my airway is just horrific! So many things I am left in the dark with, some people tell me I should ask questions, get all the answers, be up front, but how much do I want to know or am I going to allow myself to know? It does sound like I am doing very well, but in truth, I have many bad days, I go on with life every day but always with this hanging over my head, constant reminders of things I can't do anymore, my big problem is breathing, and unfortunately that is a big part of living! Right? Well even to go to a hot tub, one of my favorite things to do, had me in tears, I couldn't breathe with all of the humidity and had to get out of that room at this hotel, and go back to my room, teary eyed and choking because I couldn't catch my breath. Or things like today, going to a college town for an ice cream and watching all of the students outside playing ball, taking walks, talking to my young grand daughter who is 18 about going on her trips for spring break, realizing these things I can never do again, ever.. very scary, very depressing and I try not to dwell on it, although tonight I am.
Anyway to answer your question on my type of cancer, I was told it was a stage 3B at first, then all of a sudden read in the chart a stagelV, who knows why it changed, when I asked about this, they blew me off, also it says adenocarcinoma and also says squamous cell, I asked a young intern about that and he said he didn't know why, answers I get are always evasive. As I told you I am kind of afraid to ever ask too much so God only knows what I have got going on inside my body. good luck to you with your mom, and lets hope we get some news from the doctor. I did see that they still give the Tarceva even if it is squamous cell, my oncologist told me he would try that on me if I ever needed it.
Good luck. From Sandy

• Reply

• By cjtexas
• Posted April 25, 2009 at 8:30 am
• Report post

I have have the same kind of cancer and 3B, first line was cisplantin and etopside, with concurrent radiation, it did shrink the tumors, finished treatment 4/08, last scan in feb showed a couple spots 2mm, doc's said could be the alignment of ct scan will just have to wait and watch them, having ct in may, if their growing he said we will try Tarceva. The waiting is hard for sure, but I decided to take my rad drs suggestion to just enjoy life, what will be will be, what can we do worry ourselfs sick, did that, was not good stopped me from enjoying the day, so I just leave it in Gods hands and do whatever I want, eat, sleep, play and tell my loved ones I'm ok with this, it could be much worse cystic fibroses, MS, diseases that you linger on and on and become a vegetable, with this disease I have the time to correct mistakes I've made really show my friends, family how much I love them, and try to make it as easy a possible for them when the time comes. In a way its a gift we know how were going to die and have time to do what we need to do before we go. I'm not saying people aren't cured from cancer it happens, I'm just a realist. Good luck and have faith. Ps I feel great hairs back hated no hair worse than anything.

• Reply

• By jazzbo
• Posted April 25, 2009 at 10:35 am
• Report post

I think you'd have better luck reaching Dr. West at www.cancergrace.org. He comes on here frequently but his main site is this one. Good Luck all- John

• Reply

• By Marylou1
• Posted April 25, 2009 at 1:01 pm
• Report post

Hi Sunshine:

I know I did post to your last post about having squamous cell cancer and have been on Tarceva since January of 2008.

Yesterday, I had my visit with my Oncologist since I had my last NED scan on April 16th. He is very pleased with the scan, but we discussed the Tarceva again. As he told me before, Tarceva works on only 1 out of 10 people, and yet, he has used Tarceva on other kinds of cancer including pancreatic cancer.

Did you ever think about checking out the tarceva website? It is a great site loaded with all kinds of information. Easy to get to, Tarceva.com. It will tell you that Tarceva is used for advanced non small cell lung cancer, not a specific one. You can learn a lot from that site. Good Luck.
Marylou

• Reply

• By DrWest
• Posted April 26, 2009 at 12:13 pm
• Report post

The lung cancer community is certainly struggling to find new treatments that are good choices for patients with squamous NSCLC. The cornerstone of systemic treatment for advanced NSCLC is still platinum doublet chemo, and that's still appropriate for patients with a squamous tumor: typically carboplatin (or could be cisplatin) with either a taxane (taxol or taxotere) or gemcitabine, less commonly navelbine. All of these are perfectly fine and of comparable activity.

The treatments that don't appear to be good choices for squamous NSCLC include avastin, because we see excessive bleeding complications for patients with squamous NSCLC on avastin, or alimta, which doesn't seem to work in patients with squamous tumors. Here's my general approach to advanced NSCLC in patients not eligible for avastin, largely including patients with squamous tumors:

http://cancergrace.org/lung/2008/08/23/wird-bev-inelig-good-risk-fl-adv-nsc lc/

A class of agents called IGF-1R inhibitors is being tested now, though not yet commercially available, with a lot of hope that they could be particularly favorable for patients with squamous tumors. Here's a bit of information about IGF-1R inhibitors:

http://cancergrace.org/lung/2008/08/06/igf-1r-for-squam-nsclc/

Otherwise, it's important to point out that while some oncologists don't believe that EGFR inhibitors like tarceva work for patients with squamous tumors. More information on that here:

http://cancergrace.org/lung/2006/11/18/is-tarceva-only-useful-in-certain-pa tient-groups/

I hope that helps.

-Dr. West

• Reply

• By sunshine2gal
• Posted April 26, 2009 at 5:09 pm
• Report post

Thank you so much for your reply Dr. West. It does make me feel more hopeful. We are waiting to see if mom qualifies for a clinical trial at James Graham Brown Cancer Center in Louisville. If her brain MRI is clear, they said she would qualify, if not they said there might be one other trial she could do. I read all the links you sent, and I was happy to see that although Tarceva might not have the same greater results in squamous, it could possibly give her some longevity, so another thing to consider down the road. At the moment they told us she would start with the Taxol/Carbo, but I will mention the other drug you had in your link with the chance for lesser side effects. So much info to take in in so little time!! Thanks again for your help! Take care, Robin

• Reply

• By sunshine2gal
• Posted April 27, 2009 at 10:57 pm
• Report post

Thanks to everyone that helped give me info. It has been great to get all your comments and ideas, and I appreciate your willingness to help. Take care! xx Sunny

• Reply

Add to the discussion