Guest Posted November 5, 2004 Share Posted November 5, 2004 back in june after experiencing a "little pain" in my chest i went to the doctor. x-rays, ct scan and then PET scan confirmed i had nsclc adenocarcinoma, stage 4. i had three tumors,two on medial anterior aspect of the right upper lobe and one in the anterior medial aspect of the right middle lobe. there was some "suspicous" pleural activity in the lower right lobe. after 38 rounds of heavy radiation and 7 weekly cycles of carboplatin and taxol, my ct scan and PET scan showed very, very minimal decrease in size of two of the tumors. unfortunately, there was also noted plural metastatic disease or metasatic lesion within the lung parenchyma along with rib distruction. what a letdown!! i am now going to start 4 cycles of taxol, 3 weeks apart and then in january have the old CT PET scans done. is there any one "out there" who has a similar history and kind of boost my spirits up that this other kind of chemo will work better this site is wonderful and all of its stories are inspirational. thanks irene diagnosed 6-04, nsclc, adenocarcinoma, stage 4 Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted November 5, 2004 Share Posted November 5, 2004 I am sorry, and my story is not a happy one. Except to say that everyday my wife was here, she was productive and did not let this disease deprive her of enjoying the short time she had with us. But I want to welcome you. This is a club noone wants to belong to, but it is filled with a lot of great people. There are success stories from all over the map. We have a 30 year survivor or so, and we have several in your situation who have been going strong. And we have several in my situation, who have lost a loved one but come for the support and to tell their stories. So let's share this road for a while. Welcome. Curtis Quote Link to comment Share on other sites More sharing options...
Nushka Posted November 5, 2004 Share Posted November 5, 2004 I wish I could help you with your dx but mine was very different from yours. I just want to welcome you to our family. I wish you the best and pray that the new treatments will be just what you need. Nina Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted November 5, 2004 Share Posted November 5, 2004 Welcome to this place where no one wants to be. We'll do everything we can to help you. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
MayFrog Posted November 5, 2004 Share Posted November 5, 2004 Hi Irene and welcome My dx is vastly different from yours, but rest assured you will find many members/survivors who can share their experiences with you. Glad you found us, and please keep coming back....we care. Mary Quote Link to comment Share on other sites More sharing options...
karenl Posted November 5, 2004 Share Posted November 5, 2004 Hi Irene Sorry to hear about your diagnosis, and the apparent progression of disease. My Mum is currently on taxotere (which I understand is very similar to taxol) and is tolerating it very well. Hardly any side-effects at all, apart from a little fatigue. She is using it in conjunction with a trial drug, and will be having a scan in about 2 weeks to determine the effectiveness. I am not sure about taxol specifically, but I do recall reading that others on the board have had good success with taxotere, so keep your hopes up!! Wishing you well. Karen Quote Link to comment Share on other sites More sharing options...
Donna G Posted November 5, 2004 Share Posted November 5, 2004 Hi Irene. Welcome. I was also motivated to go to the doctor because of chest pain. I had chemo and radiation ,then surgery and more chemo after. I know you could be stage IV just because you have it in more than one lobe. Do you have it any where out side your lung or positive lymph nodes? Do you have Emphysema? Wonder why if none of the above, they just don't take your right lung at this point, any one said? Keep us updated . Donna G Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted November 5, 2004 Share Posted November 5, 2004 Hi Irene,Sorry to hear you aren't doing so well at present.I was very fortunate as carbo & taxol &radiation shrank my tumor way down & it has remained stable now for 10 months.Hope this next one does the trick for you. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted November 5, 2004 Share Posted November 5, 2004 Hi Irene, Welcome. I lost five ribs to the beast and half my left lung, the entire left side chest wall is goretex. I am still here. My tumor just GREW to a huge size, rather than being considered metastatic. Good luck, and keep us informed. XOXOXOX Prayers always, MaryAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted November 5, 2004 Share Posted November 5, 2004 Hi, Irene, and welcome. My wife, Lucie, also has Stage IV nsclc and is 25 months from diagnosis. I can't help you with the specific chemo you are having, but there are many choices out there, so don't give up hope. And, we are here to support you. Don Quote Link to comment Share on other sites More sharing options...
Lisa O Posted November 5, 2004 Share Posted November 5, 2004 Hi Irene, There are so many other options available. Hang in there until your onc finds the magic potion. I wish you the best. Lisa Quote Link to comment Share on other sites More sharing options...
J.C. Posted November 6, 2004 Share Posted November 6, 2004 Hello Irene, Just wants to wish you good luck on the next treatment for you, so many that one will surely work. J.C. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 7, 2004 Share Posted November 7, 2004 Hello, Irene. Just want to welcome you, and let you know that you we're on the sidelines, cheering you on. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted November 21, 2004 Share Posted November 21, 2004 Irene, I welcome you to the board too. Don't just follow whatever advice your onc gives you. There is usually some kind of an incentive for doctors from these chemo manufacturers to utilize their products. I used first line chemos cisplatin/ VP16. It barely shrank the tumors, radiation did the trick though. The nodes that never lit up on my PET scan in my other lung, began to grow after about a year. I decided traditional chemo's side effects were pretty harsh, and aren't a cure. They can at best buy only time. That is why I recommend taking matters into your own hands. Research and check out trials. There have been some honest to goodness cures with vaccines. Even the newer chemos offer fewer side effects, which contribute to a better quality of life. Good luck and keep us posted. Cheryl Quote Link to comment Share on other sites More sharing options...
stand4hope Posted November 21, 2004 Share Posted November 21, 2004 Irene, You've received good advice here, and a second opinion is always a good idea, especially if you maybe find yourself questioning the treatment you are receiving. I do have one question. If you already received taxol and have had very little shrinkage, I'm curious why you are going to get taxol again instead of them trying one or two of the other potions out there (i.e., Gemzar, Alimta, Cisplatin, Navelbine, Taxotere)? Could you have possibly meant to type something besides "taxol" that you are about to receive? I have limited knowledge as to why oncs pick or choose what they use, and even more limited knowledge about why. LOL! I was just wondering. I do think I've heard that Taxotere is very similar to Taxol and Alimta is supposed to be similar to Taxotere with less side effects. Maybe one or combination of something different would be worth asking about. Best of luck to you, Irene, and please stay in touch with us. Love, Peggy Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted November 21, 2004 Share Posted November 21, 2004 Irene, Welcome. I was thinking the same thing as Peggy. They usually switch the drugs if one doesn't work or quits working. I would seek a second opinion if your dr. is planning on the same drug again. Take care. Quote Link to comment Share on other sites More sharing options...
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