Hi and prayers to all of you who are battling this horrible disease. I need some input. My dad was dignosed with NSCLC Stage 4, Squamous Cell in May 2009. His cancer is in both lungs and there was "some" lymph node involvement. He had mets to spine that was "zapped" with radiation and that seems to have worked. He took 4 rounds of of chemo (Carbo/Taxol)...with modest results...some minimal decrease/some minimal increase. He has no symptoms at all, other than side effect from chemo-his blood count is down right now (11.4), so he is tired. The ONC told us today that he can take a break for a few months or they can start second line next week. He mentioned 2 chemo drugs (nub?? or gemzar (sp??). Dad has chosen to take a break. I'm not sure how I feel-but dad feels confident in his decision. I do worry about his blood count if he immediately began chemo again. They gave him nulastin (sp??) shots for the blood count-and it worked well until right after the 4th treatment. What worries me is the ONC acting like the chemo options for squamous cell are limited? Any input from anyone would be most appreciated. Looks like we have a few months to research options.
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Stage 4 Second Line Treatment Options?
- By pnut
- Posted October 20, 2009 at 7:12 pm · 8 replies
- In Family members and caregivers
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- By cards7up
- Posted October 20, 2009 at 7:24 pm
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I would go to http://cancergrace.org/ and ask any medical questions of the specialists there. They are excellent at responding. A break might be just what he needs for now. Take care, JC
- By HUSBANDGARY
- Posted October 20, 2009 at 10:00 pm
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Hi pnut--
My husband has the same horrible disease as your dad -- NSCLC Stage IV - Squamous Cell and he was diagnosed on April 29, 2009 (we will never forget that date). My husband has a tumor in the upper part of the left lung and lymph node (left side only). His first line of chemo was Carbo/Taxol and it help to decrease the size of the tumor and the lymph node. Gary had a 3 week break and than he was started on the 2nd line of chemo -- Gemzar. Gary feels that this chemo is helping and the doctor agrees that this is really helping him with the disease. His blood work is great. The only thing he is having trouble with his feet. The Taxol will make your nerves in your feet and fingers to feel pins and needles / tingling. This can take up to 6 months to a year for this (hopefully) will go away. Does your dad have any problems with his feet? I would talk to the ONC again and not to wait too long for the next treatment. Gary's ONC would not go no longer than 3 weeks and Gemzar I was told is a good chemo. My prayers are with you and your dad.
Take care and let me know how things go.
Denise
- By miracle_b
- Posted October 20, 2009 at 10:17 pm
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hi pnut
i had the same first line treatment when i did my pet it showed very lil sign of disease left and lymphnodes seemed to look normal again my doc put me on tarceva its a once a day pill ive been on it 8months i feel pretty good not to many major side effects i was put on this because since i have lesions on my lungs and she dnt want the cancer back, grow or spread while being off the iv chemos my first pet after being on the pill 3 months showed it was wrking and shrinking stuff i have my next pet late nov so we'll see if im still good on this pill or if i have to try something new im hoping not but we'll see! my cancers at a different stage so not to sure if this wud wrk for ur dad but im sure wont hurt to ask his onc about it!
- By sunshine2gal
- Posted October 20, 2009 at 11:21 pm
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My mom also have squamous stage IV. She was diagnosed in April 2009. Her first line was gemzar and carbo. She tolerated it pretty well with some mild to bad nausea, but not too severe to really get her down. She is 67 but is frail due to some other health issues, so I think if she can handle it, your dad has a good chance too. She had good shrinkage of her primary tumor with 50 percent reduction, but then the doc said she had some cell spread to the fluid around her lungs, so we stopped that treatment.
Right now she is taking Tarceva. She is also tolerating that very well, and has a good quality of life so far on it. Her first scan showed some slight shrinkage, but no spread, so the doctor was pleased. This apparently is an acceptable response with Tarceva, since it's not really intended for squamous cell. I have a question in my profile to Dr. West about it, if you want to read more about Tarceva and squamous cell. It has less shrinkage rate than other lung cancers, but almost equal longevity rates in terms of life.
Good luck! Feel free to add me if you have questions or just want to vent.
- By cuddles53
- Posted October 21, 2009 at 12:08 am
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Don't let them scare you with limited this, and that BS. I swear they love watching us cringe in our seats, you know I often wonder if they chose this field to play God? I am sorry but this makes me angry again to feel this person, your dad, sitting in a chair and listening to this crock of BS! I am that person when I hear it, I see myself in that chair, looking over at this doctor, and I am that child in the chaer who they say you will die. I look up meekly at this doctor and cry. I feel this pain when people tell me these stories of these kind of uncaring doctors giving little or no hope,. For Gods sake.....Tell dad, don't even listen to them!
Now... with a calmer attitude, I took a deep breath.....
You go ahead and vent all you like you deserve it. I just did. it sure does make me feel better when I do that., some doctors will tell you, if you read these posts, it pops up now and then of all different treatments people are actually on. Some are in clinical trials, some are on the standard gold, gemzar, carbo, taxol, alimta, avastin if you have no bleeding disorders, Tarceva some say now maybe sutent? So How many is that? A life times worth is what that is. So what about no options? Or not many? This sounds like more than just a few too me. We don't even know how many clinical trials are going on. so tell your dad to not give up hope,, give up on him, the doctor!! . I would get another opinion, someone who says all of the things they do have to offer not all of the unlimited drugs to try. If you, and dad choose to stay with this doctor, just know that you may trust this doctors judgement in other ways, and that is okay, but don't look to him for the support you need, he may not be able to give it. You may need to look to others for this, and only leave the medical knowledge to him. some doctors just do not have good bedside manners but are very good and smart doctors in other ways. These are good to have on our side also, But we do need hope and faith, it is a biggie in our overall improvement.. Come back, and join us from time to time, and vent all you want too. We get the same things from our own docs too.
God bless Sandy
- By AliceL
- Posted October 21, 2009 at 12:11 pm
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I have squamous cell also, and I've been hearing the same thing from doctors since I was first dx in 1998. First thing my surgeon told me then was that it was a good thing I could have surgery because chemo and radiation didn't work very well for the type of cancer I had. Last year when I was dx again with squamous cell, heard basically the same thing from my pulmonologist. The truth is, according to my current onc., that although some drugs are considered more effective for a certain group of patients (particularly nonsmoking, adenocarcinomas or people with certain mutations), this does NOT mean that many of the drugs did not or would not work for squamous cell. In fact Dr. West at cancer grace did a post not long ago on this topic. I agree with Sandy. Even if a doctor is a knowledgeable and smart, if he is going to make me feel hopeless and depressed, I am sure going to be looking for someone with a more positive attitude who will help me fight if that is what I want to do. God Bless and good luck.
- By pnut
- Posted October 21, 2009 at 9:31 pm
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Thank you, thank you for taking time to respond to me. It helps so much. I will follow up with all your recommendations for sure. Everything we can learn is to our benefit. Sometimes my emotions just get the best of me and I can't think straight. Thanks again.
- By Pat-M
- Posted October 22, 2009 at 10:46 am
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Hi, Since your dad is taking a break for a while from chemo, it will be so important that when he starts again he has confidence that whatever they put in to him will have the best chance of working with the least toxic side effects.
He can increase his odds by having a chemosensitivity or "assay" test. His tumor can be tested outside of his body against all the various FDA approved drugs to see which ones will actually kill the most cancer cells.
Most doctors prescribe chemo based on "statistical standard protocols", but we are individuals, not statistics. And what works for groups of people doesn't always work for each individual. Although this seems so obvious to most patients, If you ask your oncologist about this he will most likely dismiss any kind of testing, because there are no major clinical trial yet to prove that they are beneficial. But, if you are a patient who has not responded well to chemo so far and want a "personalized" approach, this may be for you (or your dad).
To find out more, please check out the following links:
http://www.rationaltherapeutics.com/patients/default.aspx
(Rational Therapeutics is one lab that performs these tests - call Shari at 562/ 989-6455 for any questions. She is very helpful. Another lab is Weisenthal Cancer Center)
http://www.lbmmcf.org/mercury_pdf/mercury_XLXIII_1.pdf
(scroll down to p. 10 - the article on "Personalzied Cancer Care. Lonb Beach Memorial Medical Center is one of the largest medical centers on the west coast)
All my best to you and your dad! Pat
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