Jill Lauricella Posted February 15, 2018 Share Posted February 15, 2018 Hi everyone, I have been diagnosed one year ago with non small cell lung cancer with a mass in my left lung.This did not come as to big of a surprise because I smoked 50 years of my life. Anyway the doctor put me on 2 chemo treatments alimta cisplatin. I stayed on that for 5 months till the cisplatin had me sleeping all the time then just stayed on alimta for another 2 months which I then developed a reaction to it. Swollen leaking eyes and nose. Oh by the way the chemo did not work on me, although my tumor did not get any larger. I had to stay off any cancer drugs for 3 months to get it out of my system. I then went on opdivo an immunotherapy. My last ct scan showed I now have another mass on my right side! So neither treatments worked for me, so now I am going in a clinical trial phase 2 mocetinostat, in combination with durvalumab. So that’s my story and I would love to hear from anyone suffering from this horrible disease. Link to comment Share on other sites More sharing options...
Judy M. Posted February 15, 2018 Share Posted February 15, 2018 Hi Jill Welcome to the forum. I also had 4 rounds of Cisplatin/Alimta and it also failed for me. The radiation I had beat back the tumors in my lungs, but because the chemo failed the cancer spread to my hip bone and adrenal. Doing the Opdivo right now. Haven't had scans yet. If you have any questions there are lots of knowledeable long term survivors here. Hope your trial works out for you. Judy M Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 15, 2018 Share Posted February 15, 2018 HI jill Starting somewhat similar treatment for NSLC on the left lung, They are going to Carboplatin/Pacitaxil and radiation for six weeks but the petscan will determin 3a or 3b I also smoked for 35 years but stopped twenty years ago now. Bob Link to comment Share on other sites More sharing options...
BridgetO Posted February 16, 2018 Share Posted February 16, 2018 Hi Jill, Welcome here! Nice pic! I got lung cancer too (or maybe I should say it got ME) and I was never a smoker. Fortunately mine was diagnosed very early.It was found in a surveilance CT scan I had for an unrelated cancer. Good for you for particpating in the Phase II trial. Those are new drugs I haven't heard of. Stay with the forum and you'll hear from lots of us who have this disease. Let us know how we can support you. Bridget O Link to comment Share on other sites More sharing options...
Jill Lauricella Posted February 16, 2018 Author Share Posted February 16, 2018 14 hours ago, Judy M. said: Hi Jill Welcome to the forum. I also had 4 rounds of Cisplatin/Alimta and it also failed for me. The radiation I had beat back the tumors in my lungs, but because the chemo failed the cancer spread to my hip bone and adrenal. Doing the Opdivo right now. Haven't had scans yet. If you have any questions there are lots of knowledeable long term survivors here. Hope your trial works out for you. Judy M Hi Judy, thanks for responding, at times I feel so alone. It’s so nice to hear from others going through the same thing. I am in VA and the cancer group here is mostly breast survivors that are a great support group but had different results than me. My doctor didn’t offer me radiation I guess because the cancer is entwining with my heart. Anyway I hope the Opidivo works for you I had no side effects with it. Good luck! Link to comment Share on other sites More sharing options...
Jill Lauricella Posted February 16, 2018 Author Share Posted February 16, 2018 12 hours ago, BridgetO said: Hi Jill, Welcome here! Nice pic! I got lung cancer too (or maybe I should say it got ME) and I was never a smoker. Fortunately mine was diagnosed very early.It was found in a surveilance CT scan I had for an unrelated cancer. Good for you for particpating in the Phase II trial. Those are new drugs I haven't heard of. Stay with the forum and you'll hear from lots of us who have this disease. Let us know how we can support you. Bridget O Hi Bridget, nice to hear from you. Just hearing back from all of you is support for me. Funny you should mention my picture I tried to make it smaller but I guess it didn’t work lol! I will be starting the trial Feb. 27th I just hope it works, I will keep you posted jill Link to comment Share on other sites More sharing options...
Jill Lauricella Posted February 16, 2018 Author Share Posted February 16, 2018 13 hours ago, Robert Macaulay said: HI jill Starting somewhat similar treatment for NSLC on the left lung, They are going to Carboplatin/Pacitaxil and radiation for six weeks but the petscan will determin 3a or 3b I also smoked for 35 years but stopped twenty years ago now. Bob 13 hours ago, Robert Macaulay said: HI jill Starting somewhat similar treatment for NSLC on the left lung, They are going to Carboplatin/Pacitaxil and radiation for six weeks but the petscan will determin 3a or 3b I also smoked for 35 years but stopped twenty years ago now. Bob Hi Bob, good hearing from a former smoker, haha. I didn’t mention that I stopped smoking last March so it’s almost a year! So let me ask you when does the desire to smoke end?? I haven’t heard those drugs before but it certainly sounds like with the radiation it will work. What does 3a and 3b mean? I’m wishing and praying for all of us and please keep me posted. jill 13 hours ago, Robert Macaulay said: HI jill Starting somewhat similar treatment for NSLC on the left lung, They are going to Carboplatin/Pacitaxil and radiation for six weeks but the petscan will determin 3a or 3b I also smoked for 35 years but stopped twenty years ago now. Bob Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 16, 2018 Share Posted February 16, 2018 Hi Jill When does the desire to stop smoking stop if I remember putting myself in situation where I smoked. I stopped drinking beer four years ago and still today would love a nice glass and maybe I will as it does not affect my treatment who knows In regard to MY simple interpretation OF 3A And 3B, When 3A is used to me it means it is contained to that surrounding area the 3B Means it has travelled to other areas of the body and there is other classifications they add to 3A AND 3B As these are very simple description,That is why the petscan is a very important part of the equation in grading which I am off in couple hours to Vancouver to receive this evening going to be long day.. Bob Link to comment Share on other sites More sharing options...
Jill Lauricella Posted February 16, 2018 Author Share Posted February 16, 2018 23 hours ago, BridgetO said: Hi Jill, Welcome here! Nice pic! I got lung cancer too (or maybe I should say it got ME) and I was never a smoker. Fortunately mine was diagnosed very early.It was found in a surveilance CT scan I had for an unrelated cancer. Good for you for particpating in the Phase II trial. Those are new drugs I haven't heard of. Stay with the forum and you'll hear from lots of us who have this disease. Let us know how we can support you. Bridget O Hi Bridget, nice to hear from you. Just hearing back from all of you is support for me. Funny you should mention my picture I tried to make it smaller but I guess it didn’t work lol! I will be starting the trial Feb. 27th I just hope it works, I will keep you posted jill Link to comment Share on other sites More sharing options...
Jill Lauricella Posted February 16, 2018 Author Share Posted February 16, 2018 7 hours ago, Robert Macaulay said: Hi Jill When does the desire to stop smoking stop if I remember putting myself in situation where I smoked. I stopped drinking beer four years ago and still today would love a nice glass and maybe I will as it does not affect my treatment who knows In regard to MY simple interpretation OF 3A And 3B, When 3A is used to me it means it is contained to that surrounding area the 3B Means it has travelled to other areas of the body and there is other classifications they add to 3A AND 3B As these are very simple description,That is why the petscan is a very important part of the equation in grading which I am off in couple hours to Vancouver to receive this evening going to be long day.. Bob Hey Bob, yeah does sound like a long day for you. I had my Pet scan done when I was first diagnosed and also a brain MRI. So yeah been there I still never heard that 3b 3a before so thanks for explaining it. My desire to smoke is not associated with anything so I guess I’ll just have to wait it out. I don’t drink but I don’t think it it would hurt your treatment but I would ask the doctor first. Good luck hope your cancer has not spread to other areas, take it easy and be good to yourself. jill Link to comment Share on other sites More sharing options...
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