lightchasr

Tom & Cindy, thank you both for your responses. At this point I am having a rough time. I am still on Nivolumab after sitting down with my doctor for a "give me the brutal truth" conversation. I gathered my resources, laid my cards on the table about what I had found concerning my issue. My doctor had been given a full list of questions that needed answers based on my research. Basically he agreed that my research was current and valid and very realistic with what he deals with. He did agree that staying the course with the Nivolumab for now is the best option, even with the progression. I asked the question that he has been wondering and that was "is the lung cancer progressing so slowly due to the Nivolumab?" as it is normally quite aggressive. We made a deal-he needs to put the chemo on the table from time to time as an option as long as I am strong enough to possibly survive the treatment. Our deal is that he will continue to offer it as we go forward but if I say no to the chemo, he will respect my decision. He is also okay with the continued use of Nivolumab, even if I continue to have progression-unless he feels the medication may damage my life. Jack The Ripper has taken up,residence in my body-am I really concerned what the Nivolumab is doing? I apologize for being so flip about this. I just feel very brittle and fragile, physically and emotionally. I told my husband tonight that I was tired of being PC and calling myself a lung cancer survivor as I am not a survivor. I am a victim of a disease that is like a serial killer that works from the inside out. I had done all that I thought I needed to do thanks to the American Cancer Society's lung cancer ads that focused on telling me not to smoke-and I didn't. Then to find that the smokers get a better chance at surviving with the Nivolumab than never-smokers like me and I feel victimized and unprepared by the media storm that never once told me that I only needed lungs to get lung cancer Right now that light at the end of the tunnel is a fast moving train and I have no safe place to hide. Waiting for the axe to fall.

Hi, my name is Roxanne. I need feedback concerning treatment option at this point to decide how to proceed. My apologies for the need for such a long post! In May 2014 I was diagnosed with stage IV squamous cell carcinoma lung cancer with mets to my liver. There was no primary tumor and it was diagnosed via a liver biopsy. The cancerous lesions are "mostly" small and are widely spread in both lungs, lymph nodes in lung area and liver. I did a six month chemo combo of Carboplaten/Abraxane. I had a small amount of shrinkage of the lesions and the majority of the lesions just remained stable. Three months after the end of chemo I was "technically" stable but due to having some progression I was able to get into a clinical trial of Nivolumab (Opdivo). Two months into that treatment my CT scan showed me completely stable, which was a surprise for my doctor as his other patients mostly responded with good results after four months or so on the drug. This gave me so much hope as the side effects were minimal. My recent scan showed some progression (my doctor says mild progression) and initially he wanted to take me off of the Nivolumab and switch to Gemzar chemo. He thought on it some more and decided to let me continue the Nivolumab for approximately six and a half weeks, then do an early scan to see if the progression had halted. I was told to continue to think of possibly using the Gemzar during this time. I think he may have opted for the additional period of time on the Nivolumab to give me more time to think about the Gemzar as I am more inclined at this point to just stop all treatment rather than going back on chemo. I had very little quality of life while on chemo and for a couple of months after it was stopped. I dread going back for more. I have looked at many posts at another lung cancer support group I belong to and they reported that Gemzar had much milder side effects (but still had some hair loss, nausea/vomiting that could be controlled by medication and most reported it causing issues with the blood cells, making the need for those dreadful Neupogen injections the norm through most of treatment and a very few had to have blood transfusions. But I also noted that the majority of the patients on Gemzar had adenocarcinoma and not squamous. So my questions: 1) Is there a noted difference for potential different outcomes in the effectiveness of Gemzar based on having adenocarcinoma vs squamous? 2) What were the major side effects you experienced on Gemzar. Did you lose your hair or if it thinned, was it a marked amount. Did you find that you needed treatment to get your WBCs back in line often on this drug? 3) If I did not have remarkable results on the first line choice of the two chemo drugs in the beginning, can I honestly expect the Gemzar to make a difference? (My question is based on the fact that they did not chose this drug first-so if the first treatment was more effective to give me a chance-can I really expect a drug not shown for helping in the beginning to now stabilize or shrink my lesions and if so---why? Does having had a previous doublet treatment make your body respond better at a later date to a drug not considered before?) I am trying to understand the reasoning. 4) Last but not least, has anyone with squamous lung cancer been on the Opdivo and gone back and forth between progression and stability or shrinkage? I ask this as I am so tentative to going the chemo route again that I am thinking of just stopping all treatment and just going the palliative care route. Knowing this, a friend asked why not just stay on the the Opdivo rather that go without any treatment since the side effects are minimal and it "might" even do some good? I am digging deep so that I can make the right choice. I have been given this six and a half weeks of Opdivo to see if the progression continues and that will be toward the end of this month (September 2015). I will welcome anyone's feedback of personal experience, links to articles which address any of this as related to squamous lung cancer as the response to various drugs with squamous and adenocarcinoma appear to be quite different and with very different maintenance protocols. Thank you so much. Roxanne

I have a question to pose and hopefully I can get some solid answers to help me to make some decisions. Caution-long post as much to relate that goes with my questions! In May 2014 I was diagnosed with stage IV squamous cell carcinoma lung cancer with mets to my liver. There was no primary tumor and it was diagnosed via a liver biopsy. The cancerous lesions are "mostly" small and are widely spread in both lungs, lymph nodes in lung area and liver. I did a six month chemo combo of Carboplaten/Abraxane. I had a small amount of shrinkage of the lesions and the majority of the lesions just remained stable. Three months after the end of chemo I was "technically" stable but due to having some progression I was able to get into a clinical trial of Nivolumab (Opdivo). Two months into that treatment my CT scan showed me completely stable, which was a surprise for my doctor as his other patients mostly responded with good results after four months or so on the drug. Once Opdivo was released by the FDA for use on squamous lung cancer I moved out of the trial and began to use as a regular patient. My recent scan showed some growth and initially my doctor wanted to take me off of the drug and switch to Gemzar. He thought on it some more and decided to let me go for about six and a half weeks in the Opdivo and then scan again to see if the progression had stopped so that I was stable or better yet-shrinkage. But I was told to continue to think of possibly using the Gemzar. I think he may have opted for the additional period of time on the Opdivo as I was more inclined at that point to just stop all treatment rather than going back on chemo. I found zero quality of life in the first treatment in that six months and for an additional two months as I finally revived. I have looked at many posts at another lung cancer support group I belong to and they reported that Gemzar had much milder side effects (but still had some hair loss, nausea/vomiting that could be controlled by medication and most reported it causing issues with the blood cells, making the need for those dreadful Neupogen injections the norm through most of treatment and a very few had to have blood transfusions. But I also noted that the majority of the patients on Gemzar had adenocarcinoma and not squamous. So my questions: 1) Is there a noted difference for potential different outcomes in the effectiveness of Gemzar based on having adenocarcinoma vs squamous? 2) What were the major side effects you experienced on Gemzar. Did you lose your hair or if it thinned, was it a marked amount. Did you find that you needed treatment to get your WBCs back in line often on this drug? 3) If I did not have remarkable results on the first line choice of the two chemo drugs in the beginning, can I honestly expect the Gemzar to make a difference? (My question is based on the fact that they did not chose this drug first-so if the first treatment was more effective to give me a chance-can I really expect a drug not shown for helping I the beginning to now stabilize or shrink my lesions and if so---why? Does having had a previous doublet treatment make your body respond better at a later date to this drug.) I am trying to understand the reasoning. 4) Last but not least, has anyone with squamous lung cancer been on the Opdivo and gone back and forth on progression and stability or shrinkage? I ask this as I am so tentative to going the chemo route again that I am thinking of just stopping all treatment and just going the palliative care route. Knowing this, a friend asked why not just stay on the the Opdivo rather that go without any treatment since the side effects are minimal and it "might" even do some good? I am digging deep so that I can make the right choice. I have been given this six and a half weeks of Opdivo to see if the progression continues and that will be toward the end of this month. I had Hashimoto's thyroiditis hypothyroidism lurking in the background but not yet diagnosed when I began the Opdivo treatment and I began that with the full knowledge that if mine was Hashimoto's that it would have a major flare. Mine did flare and the endocrinologist I am now seeing said that my values were so high that he feels sure that my thyroid is totally burned out forever. I felt good on the Opdivo until this flared and I crashed quickly and had horrible fatigue and slept nearly around the clock. As they get my thyroid in line I feel a bit better as I go along. My lab values look fabulous and nothing is out of range and except for some issues with my joints that is not linked to cancer-I feel good and do not appear I'll most of the time. Based on my increased feeling of good health as they thyroid regulates I keep looking at the possibility of living as much time as I can on the Opdivo with the knowledge that it might do no good vs zero treatment if I cannot find some truly solid data to make me open to going the Gemzar chemo route. I will welcome anyone's feedback of personal experience, links to articles which address any of this as related to squamous lung cancer as the response to various drugs with squamous and adenocarcinoma appear to be quite different and with very different maintenance protocols.