antoinettev3 Posted April 4, 2006 Share Posted April 4, 2006 Well it's not the news I was hoping for but it sure could be worse. The new spot that we found back in January has grown a bit but not much. The areas that were treated with radiaiton last summer are also showing more activity but we expected that. Blessedly there is no metastisis and I still remain Stage 1. Oncologist is not pushing chemo yet but is suggesting I research Tarceva for myself. He thinks trying that first might be a good way to go instead of doing nothing. I'll be searching the boards for all Tarceva posts as I know there are several people out there on it. Thank you again for all the prayers. God Bless. Antoinette Quote Link to comment Share on other sites More sharing options...
Welthy Posted April 4, 2006 Share Posted April 4, 2006 Antoinette, You have a great attitude for getting a "mixed bag" of results and I commend you. Keeping your chin up and hopes high is the best we mortals can do on most days, but God can make miracles and that we can never forget! Welthy Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted April 5, 2006 Share Posted April 5, 2006 Hi Antoinette. I read through your profile. It looks like you have been on this road for quite some time...! So, it sounds as if things are moving slowly, if at all... Tarceva has been used with great success by many members. It seems as if some of the worse side effects seem to be diarreha and skin ulcers/sores/pustules/zits of the face and scalp. Try posting in General to get feedback from those who have been on the Tarceva and see what you get. Good luck on your decisions! Cindi o'h Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted April 5, 2006 Share Posted April 5, 2006 Antoinette, I can tell you how Tarceva has affected me. If you would like the info., pm me and I will get back with you. So glad that everything is Stage 1!!! GOD BLESS!! Jamie Quote Link to comment Share on other sites More sharing options...
Don M Posted April 6, 2006 Share Posted April 6, 2006 Hi Antoinette: Maybe tarceva is the drug for you. If I were a never smoker and a woman, I would try it instead of alimta. I am going to go on alitma in about 7 or 8 weeks when I am done with radiation as a sort of a chaser. Don M Quote Link to comment Share on other sites More sharing options...
antoinettev3 Posted April 6, 2006 Author Share Posted April 6, 2006 Hey Don, Well I know I'm a woman but can't say I was a never smoker. I quit over a decade ago but smoked for probably twice that long. Does it make a big difference if you're an ex-smoker? Technically I have lung cancer but the tumors are not in my lung but in the lining. My oncologist still thinks it might be a really good choice for me. How has radiation been treating you? It hit me real hard last summer. Sure hope you're fairin' better then I did. Thanks for the reply and encouragement. Antoinette Quote Link to comment Share on other sites More sharing options...
MalouDP Posted April 6, 2006 Share Posted April 6, 2006 You might want to get hard and get the first line combo of platins and taxol, or taxotere, and avastin. Seems like everything is confined to one area that is great. But I wouldn't do the wait and see. Just get on it if you are up to it. God Bless. Love Malou Quote Link to comment Share on other sites More sharing options...
Ry Posted April 6, 2006 Share Posted April 6, 2006 Tarceva was successful for my husband for a long time. I hope it works for you. Good luck. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted April 6, 2006 Share Posted April 6, 2006 Hi Antoinette, I have been on Tarceva for 14 months and have had excellent results, see my profile. I would encourage you to try that. It comes in pill form, take it once a day. Most start out at 150MG but it can be lowered if side effect arise and still have good results with it. My side effects were rash which has since gone after the first several months, diarrhea which was constant so was reduced to 100MG and that cleared up that problem. There is also a toll free 800 number you can call to ask them ques tons and some links below that may be of help. Hope this helps. Prayers for the best. Rich 1-877-827-2383 (Patients and Caregivers) http://www.tarceva.com/tarceva/patient/contact.jsp http://www.tarceva.com/tarceva/professi ... ffects.jsp http://www.drugs.com/cons/Tarceva_Systemic.html Quote Link to comment Share on other sites More sharing options...
Maryanne Posted April 6, 2006 Share Posted April 6, 2006 I was reading your profile and I do not see that you had an operation to remove the tumor. Is the tumor maligment? Was it biospied? If you are stage 1 they usually can operate to cut that tumor out. I may be off base here, but that is my concern. Any reason why they just could not cut it out? Only 1 in 4 is operatble and if you are an early stage that is what is usually done. You do have non cell an not small right? Maryanne Quote Link to comment Share on other sites More sharing options...
Kasey Posted April 6, 2006 Share Posted April 6, 2006 Hey Antoinette, Sorry the news was not EXACTLY what it could have been, BUT so glad you are Stage 1, ya know? I remain hopeful, after reading your profile, that this will continue to be kept in check for you. I would like to buy you a drink at the Pub. Time we got to know each other and swap stories. Keep your hopes up! Kasey Quote Link to comment Share on other sites More sharing options...
antoinettev3 Posted April 6, 2006 Author Share Posted April 6, 2006 Malou, Mesothelioma does not respond very well, if at all, to the usual chemo drugs, especially when you have the cell type that I do. Hitting it hard would only make me worse and cause my immune system to weaken. So far, without any real treatment, my system has kept it in check for over a decade. This is unheard of for meso and my oncologist says this is the slowest growing cancer he has EVER seen. Statisically speaking I should have passed away 8 years ago but didn't. I had a spontaneous remission. When it returned in '04 I REALLY shouldn't have made it even one year but here I am. I guess the good Lord doesn't want me home just yet. I feel great most of the time and consider myself blessed. So even if the scans show it's a littel worse most days I can't even tell I'm sick. Praise the Lord! Thank you for taking the time to post. Antoinette Quote Link to comment Share on other sites More sharing options...
antoinettev3 Posted April 6, 2006 Author Share Posted April 6, 2006 Maryanne, Mesothelioma is always malignant & typically difficult to remove as it is not a single tumor but a "rind" of nodular tissue in the lining of the lung. It is not in the lung nor on the lung but between the layers of the lining (pleura). Most of my cancerous tissue is at the base of my lung but now I have a new spot towards the center of my chest, near my heart. Surgery was discussed last year. I went to UCLA and MD Anderson for consultations with their meso specialists. One recommened stripping the lining and the other to remove the lung altogether. I was preparing to go the surgical route but my surgeon decided that he didn't want to risk spreading the cancer since it's been stable all these years and hasn't moved from the left pleura. Unfortunately in most cases of surgery in meso what ends up happening is the cancer spreads to a distant organ or the adjacent lung. While a small percentage of people have had 5+ years of survival by having their lung removed, I've already outlived most patients without having done anything at all. My surgeon's concern was that he might stir up a hornet's nest by cutting me open. My immune system has done an incredible job keeping things in check for the past decade and I have felt great most of those years. Since I'm considered such an anomaly as far as meso goes (I also have the most aggresive cell type) most doctors don't know what to do with me. For me quality of life is MOST important. I'd rather live 5 fewer years and have them be great then suffer and have my family see me suffer. Sorry to have babbled on for so long. Thank you for your concern. Sincerely, Antoinette Quote Link to comment Share on other sites More sharing options...
Don M Posted April 6, 2006 Share Posted April 6, 2006 I did not know about your smoking history Antoinette. I was just refering to a subset of lung cancer patients who respond rather well to tarceva. Others respond well too. Go ahead and try it I say. I won't start radiation until the end of April or the first of May. I certainly hope I fare well. Don m Quote Link to comment Share on other sites More sharing options...
Maryanne Posted April 7, 2006 Share Posted April 7, 2006 Thanks Antoniette for clearing that up for me. I just learned something new about this disease I had no clue on that type of LC. You have been doing great and I agree with you about the quantity of life. You are a wonderful caring person and I know you will have many, many more years and will keep beating those odds. If you decide on the Tarveca good luck with it. Maryanne Quote Link to comment Share on other sites More sharing options...
carolhg Posted April 7, 2006 Share Posted April 7, 2006 Please know that you are in my prayers and I am sending positive thoughts your way. Prayers Quote Link to comment Share on other sites More sharing options...
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