Shelley (MLC) Posted February 16, 2007 Share Posted February 16, 2007 Hi, my wonderful 67 year old mother was recently diagnosed with stage IV squamous cell cancer. Chest CT and PET shows 2 large masses in the right lung and 2 nodes in the left lung. NED elsewhere. We are all very worried about her and a bit overwhelmed. As the oldest of her children, everyone, including mom is looking to me for the answers. I made sure she was evaluated at a University Thoracic Oncology Center. They have told us that surgery and radiation are not options at this time and that chemo (palliative) was what they would recommend. She is starting carbo/gemzar on Monday. I asked about other agents such as Tarceva and Avastin, but they didn't recommend them for mom as she was a smoker for about 40 years (she quit about 7 years ago) Anyway, I wnat to see if there's anything else I should be doing now. Is Carbo/Gemzar a usualy first line treatment? I have read quite a bit on this site and elsewhere on the internet, so I think I have a pretty realistic idea of what is ahead. Mom has a great faith in God and she doesn't want to know her "prognosis" at this time. I am very thankful for your site. Shelley Quote Link to comment Share on other sites More sharing options...
wendyr Posted February 16, 2007 Share Posted February 16, 2007 Hi Shelley: welcome to the boards. There are some wonderful people here to offer advice and support. The only thing I would add is that if you are not comfortable with the diagnosis (staging) or treatment plan then you should get a second opinion. 67 years of age is not old these days - my husband was diagnosed last year at age 69 and was a life time smoker. We did not care for the first onc we saw and sought a second opinion at a major cancer center. Please read the profile below. IF there is a major comprehensive cancer center near you I strongly suggest you make an appointment with them. Please be sure to keep us posted. Good luck and God Bless wendy Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted February 16, 2007 Share Posted February 16, 2007 Hi Shelley welcome and glad you found us. I'm a firm believer of being pro-active and second, third opinions. I started out with Carbo/Gemzar combo, it did not work for me but many here have had good results with it so keep the faith. Research, ask questions and don't take no for an answer Stay with us, lots of hope here. Prayers for the best. Rich Quote Link to comment Share on other sites More sharing options...
ernrol Posted February 16, 2007 Share Posted February 16, 2007 You do not have to accept the prognosis. I was a previous smoker. I had quit about 30 years ago. I am a male and I am not Asian. A non smoking Asian woman, that is whom they say are the best candidate for Tarceva. I would not be a good candidate for Tarceva. I was given Tarceva along with Carboplatin and Taxol from the beginning. In 4 months I was cancer free. I was told that if I came in today they would probably give me Avastin. They really do not know if these drugs will work till they try them. There is no reason your mom cannot have good results with her chemo. You need an oncologist that thinks he can treat mom with success, not one that talks about palliative care. I would get a second opinion. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
marym Posted February 16, 2007 Share Posted February 16, 2007 Hi, My first line chemo was carbo/gemzar. It worked well. I had some problems with my blood counts, but no other significant side effects. I was on it for 11 cycles and would have stayed on it except for the blood counts. Radiation and surgery are also not options for me. Best wishes for your Mom. Mary Quote Link to comment Share on other sites More sharing options...
hockeyma Posted February 16, 2007 Share Posted February 16, 2007 Ernie hit the nail on the head - do find an oncologist who looks for success and future - not palliative and not one that is negative from the get go. My husband did Gemzar/Carbo and it worked ok for the 1st 3 cycles. Make sure you get scans done after the 2nd or 3rd cycle so you can ensure that there is progress. By the 4th cycle it did not work anymore. He was just prescribed Tarceva as a second line treatment yesterday (in Canada Tarveca is only covered as a 3rd line treatment). Mind you there isn't alot of "hope" for him either and he is "palliative" but you have to try whatever you can. He only quit smoking a month ago. Because he has lost so much weight the doctors feel that it is the most tolerable option for him. Best of luck. Heather Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted February 17, 2007 Author Share Posted February 17, 2007 Thanks to all of you for the info and support. My mom lives in Upstate NY near most of my family. I live in Nevada. I flew in for a few weeks to accompany her to the MRI, PET and two Oncology appointments. Part of me would just like to bring her out here where I have "connections" in the medical world. I don't think that would be a fair option for Mom though. Most of our family and all of her friends are in NY and I know she will need so much support while she is receiving treatment. I have shown her PET/CT to Physicians out here and will be speaking to an Oncologist also. I felt like treatment had been delayed so much already. (she had her Chest CT on december 20, which showed the masses....it seems like there was a week or so between everything else she needed to have done before we could see the Oncologist). Anyway, I will look into having them add the tarceva to her chemo. Thanks again for the good thoughts and helpful info. Shelley Quote Link to comment Share on other sites More sharing options...
Kaffie Posted February 17, 2007 Share Posted February 17, 2007 Shelly, Welcome.... Please keep us informed of your Mother's progress Quote Link to comment Share on other sites More sharing options...
PamP Posted February 18, 2007 Share Posted February 18, 2007 Hello, If your mom has faith in God she has a lot going favor her! I too was a smoker for more than 30 yrs. I also had 4th stage lung cancer with mets to four other areas and tummors on my lungs! That was what I was told last June, 2006. I had two doctors who gave me four months and only wanted to do palative care. No way was I going to accept that and found other doctors who said if I was will to try they would do what they could. Just before Christmas of 2006 I was cancer free, thank God,in fact they couldn't even do radation because their was nothing to radiate. It is Feb of 2007 and I am cancer free today! Mytr eatment was carbo taxo and my faith in God and a lot of Prayers. Good luck but never never give up! God Bless and if I can do anything to help let me know. Love Pam Quote Link to comment Share on other sites More sharing options...
missyk Posted February 18, 2007 Share Posted February 18, 2007 Ewwwwwwwww at an oncologist who goes right to pallitive care!!! He saw "stage IV" and wrote her off, it would seem. Definately get a second opinion...and don't stop until you've found someone who's willing to fight WITH her. When Mom started her fight I had to explain it to my inlaws as this: You wouldn't want someone standing by your mom saying "Well, there's nothing I can do" if someone had a knife to her throat, would you? Heck no! You'd want someone there who's willing to do what can be done and then some to try to save her. THAT'S who we want helping Mom now!! Mom's 21 months since her stage IV diagnosis and still alive and kickin'. All my best to you, your Mom and your family... Quote Link to comment Share on other sites More sharing options...
Don M Posted February 23, 2007 Share Posted February 23, 2007 Hi Shelley: Your mom is still receiving a good treatment even if the oncologist referred to it as palliative. I think it may be a good idea for you to run your mom's situation by Dr. West. But, I would guess that the cancer is too massive to respond well to radiation at this time. It might be better to do chemo, look for some shrinkage so that the tumors are small enough to target, and then maybe do radiation. If radiation is a possibility in the future, maybe your mom should be doing carboplatin taxol instead of carboplatin gemzar so as to avoid any radiation recall. Here is Dr. West’s link: http://www.onctalk.com/forum/ Quote Link to comment Share on other sites More sharing options...
Beth R Posted February 24, 2007 Share Posted February 24, 2007 Welcome to the board. My mom just got diagnosed too. It is very scary. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 24, 2007 Share Posted February 24, 2007 Hi Shelley, Welcome to our family. I am so sorry for your moms diagnosis. Please know that even stage IV is not necessarily a death sentence. So get that out of your mind. There are so many treatments now of days compared to the past. Your mom has so much faith and you know the saying "faith can move mountains" and it has for so many people here. Once she starts her treatment plan you all will feel much better. I know how scarey this is. Hang strong and keep us posted on her progress. We are always here for you 24/7 for questions, support, prayers or if you just need to vent. Maryanne Quote Link to comment Share on other sites More sharing options...
Danielle30 Posted February 24, 2007 Share Posted February 24, 2007 Welcome Shelley, Sorry for your need to be here. I agree with many others here about the second opinion. Do lots of research and ask lots of questions. Keep asking till you are satisfied. My mom also chooses not to hear her prognosis, as she thinks it will give her negativity. I didnt agree at first, but i'm starting to "get it". We move at her pace, and it works for us, right now. One day at a time.... I will keep your mom in my prayers. Quote Link to comment Share on other sites More sharing options...
sharonjo Posted February 24, 2007 Share Posted February 24, 2007 Welcome Shelley, So sorry to hear your mom's diagnosis. I wholeheartedly agree with Ernie. You need a doc who is going to fight for your mom's life! I would absolutely get a second opinion. I have stage IV NSCLC, diagnosed in Dec. 2005. The first oncologist that I met was so full of doom and gloom that I was afraid that I would just drop dead every time that he walked into the rooom. He did not inspire any type of confidence in me so I sought out a second opinion. My current doctor treated me with the same drugs that the original oncologist suggested (Carbo/Taxol/Avastin), but the difference was that I believed in my doctor and I believed in my treatment! This doctor did inspire me to believe that I could treat this disease successfully and live a fairly normal life. I truly believe that what we believe about our disease and it's treatment are as important as the treatment itself! If we think the treatment is going to work, then it will! Good luck to you and your mom in her cancer journey. I'll keep you both in my thoughts and prayers. God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted February 24, 2007 Author Share Posted February 24, 2007 This site has been the best thing ever for me! I've found a great deal of information and that helps me with the questions I need to ask the Oncologist. I think when you or a family member get a diagnosis like this, you immediately go into panic mode and try to figure out how many different places you can drag them off to for 2nd, 3rd and even 4th opinions. In mom's case, she is most comfortable receiving treatment in our home town. They have excellent physicians that come in each day from a University Oncology program, so I believe she is receiving great care. In an case, I have checked that what they are doing there for her is similar to what they would be doing elsewhere in the country, and I rely on all of you to help me with all my questions. You have all been wonderful! I have a couple new questions that have come up this week, so I will post both of those in the NSCLC forum and I know you'll all be there with answers. Thanks again for giving us hope! Shelley Quote Link to comment Share on other sites More sharing options...
hollyanne Posted March 1, 2007 Share Posted March 1, 2007 Shelley - I am so glad you have found hope..and your mom's faith in God will help all of you deal with every step of the journey. I always tell people that my mom made this easy on us as she left it up to God (and some good doctors.) This journey is a series of ups and downs, with what you will find to be some fantastic times in between. There are a lot of "LC daughters" on this board, use us! Thinking of you, Holly Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.