lightchasr Posted September 2, 2015 Share Posted September 2, 2015 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 Quote Link to comment Share on other sites More sharing options...
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