DebbieBetsch Posted September 18, 2012 Share Posted September 18, 2012 Husband was diagnosed with stage 3 laryngeal cancer in Nov 2010. When this was found, they also found 3 nodules in his lungs, but said they were non-cancerous and they would watch them. He underwent chemoradiation therapy for the Laryngeal and it was completely cured. However, by Dec 2011 we were still being told that CT scans still showed the nodules in his lungs but they werent cancer. My husband was drowing in his own fluids, coughing constantly and fatigued. So we were referred to Pulmonologist for bronchoscopy. Bronch results were stage 4 NSCLC, is is squamous cell and by the time the bronch was finally done it was positive in both lungs. We saw a radiologist, no radiation was available because cancer primarily located in bronci and previous radiation made it too risky to repeat. Referred to surgeon, no surgery available. Cancer too advanced. He started chemo with carboplatin & taxol. After 20 treatments, the cancer showed shrinkage, but there are now 4 new spots. Oncologist did not feel they were cancer and wanted to watch these spots too. I went to pulmonologist against Oncologist wishes and another bronchoscopy was done. Low & behold...these 4 new spots are cancer too. And now it is in his lymph nodes & diaphragm too. He is set to start treatment tomorrow with Navelbine. A new PET/CT scan was done yesterday as he is showing symptoms of metastasis to liver & possibly spine. I am concerned about this new treatment starting. In reading about the drug, it is stated that alcohol consumption should stop. My husband has been a heavy beer drinker for over 32 years and his doc knows this. It is nothing for him to drink 12-18 beers a day and is not going to stop. He is still also smoking about 1/2 pack a day. Doc knows this too. His onco has been very evasive when talking to us, so I have done a lot of reading and always have lots of questions regarding his treatments. Doc acts like he is intimidated by my questioning. He has been wrong about diagnoses twice now, and I no longer trust him. Although my husband does and wants to continue working with him. My husbands left lung is almost completely blocked by the cancer and he is having a lot of side effects of previous treatments. It has only been 60 days since he finished the last cycle and I am concerned that this new cycle that starts tomorrow will be too much for him, especially since he is not cooperating with alcohol & cigarettes. His doctor will not be honest about prognosis. Hubby is still working full time and hopes to work thru this treatment also. He won't stop because of health insurance. How do I get this Oncologist to be completely honest with me? I don't expect any miracles, too late for that, but it sure would be nice to know what to expect and to hear it from him instead of reading it on message boards. Quote Link to comment Share on other sites More sharing options...
dianew Posted September 18, 2012 Share Posted September 18, 2012 I don't know that I can add much to what Katie has already said, but I wanted to welcome you and tell you how very sorry I am about what you are going through at this time. I am a patient, not a caregiver, so I can only try to imagine how hard it must be to try to deal with a loved one who is suffering, and the confusing medical information it seems we sometimes get - or the lack of information. My father was diagnosed with an extensive stage lung cancer and did not respond well to any treatment. He lived 11 months. At this same time, a woman on this message board was diagnosed with the exact same type of lung cancer with the same metastasis and subsequent treatment plan and she lived 7 additional years after my father passed away! That is just one example of how different two people with the same disease can respond. What Katie has said is so true. It happens time after time, and often there is no obvious reason why one person's experience is so different from another's. In the meantime I hope you are also taking care of yourself. I can only imagine what a toll this must take on the caregiver. Please come back often and let us know how your husband is doing. This is a good place to come for support, and just to have a place to vent where you are not judged. Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted September 18, 2012 Share Posted September 18, 2012 I have a wonderful oncologist and when I asked him on my first visit how long I had to live he told me every person is and individual and he could not know how my body would respond to treatment. I had traditional infusion chemo first and we got short-lived stability but no shrinkage. Cancer started growing again during my off treatment time last holiday season. So, my oncologist did genetic testing and I found I had the ALK translocation and would qualify to taked a genetically targeted therapy that had just been FDA approved outside of clinical trials. It is working for me. My left lung which was collapsed with tumor and bronchus are both open and functioning again. When I started my treatment this drug was not available to me. I have great trust and respect for my oncologist. If you are questioning your doctor it is okay to speak up, ask questions and if you can't get satisfaction seek another opinion or change doctors. My onc is very accessible to me. He said he would rather have me ask and as the doctor he can decide if my concern is significant or nothing to worry about. As far as your husbands unhealthy habits, that can be tough. Only he can make a decision to change. I struggle with healthy eating habits, but have found I like to "swim" a bit and joined a pool for exercise. We all do the best we can. Just because we have cancer doesn't mean the other struggles we have had in our lives disappear. They just seem less significant when we get our cancer diagnosis. Be encouraging and love your husband. He will work things out the best he is able and will need your love and support. My thoughts will be with you and come here often for support. I don't have all the answers. I can just share my experiences and hopes for you and you husband Quote Link to comment Share on other sites More sharing options...
DebbieBetsch Posted September 19, 2012 Author Share Posted September 19, 2012 Thank you for the encouragement. We saw the onco this morning. He said that my husbands cancer has not spread outside of the lung area. Yes it is massive in his left lung, moderate in his right lung, in 2 different sets of lymph nodes and his diaphragm, but that's it! Great news! He started Navelbine today, and we talked about the alcohol use with the Navelbine. Doc made it clear that the 2 won't mix and he must choose. So now it's up to my husband. If he wants to continue drinking, then chemo is a waste of time. If he wants to live for awhile, then he must stop drinking. He did stop for 6 months with his 1st cancer fight in 2010-2011, but started again when he went back to work. Hopefully he will make the right choice. It's up to him... Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted September 19, 2012 Share Posted September 19, 2012 Sounds like you have a positive, realistic attitude and love your husband very much. It is hard to feel you can't control the situation. All you can control is how YOU deal with it and be there to support you husbands decisions. This is easier said than done. I know that from experience. Come here for support, to vent, or ask for encouragement. There are many wonderful people here from many different circumstances. What we all have in comon is that our lives have been touched by lung cancer. Whatever your husband decides, you won't be alone. That is what this support community is all about. Hugs to you and good thoughts as your husband makes his decisions. Susan Quote Link to comment Share on other sites More sharing options...
chloesmom Posted September 19, 2012 Share Posted September 19, 2012 Hi there- So sorry for what you are going through. We all make choices in life and of course we want those people we care about to make the changes that will help preserve their health, but like others have said, it's their life, and we cannot force any adult to do anything. From the outside looking in, I can see all the reasons in the world for not drinking during or after treatment for an extremely serious health condition, but like they say, "You can lead a horse to water, but you can't make him drink." All the talk and reasoning in the world doesn't work with some people. It's as hard for me to deal with as much as it is for you, but I think we need to accept it and move on to more productive ways to cope with the illness of people we care about. Take care, I know your heart is in the right place. Cindy Quote Link to comment Share on other sites More sharing options...
DebbieBetsch Posted May 10, 2013 Author Share Posted May 10, 2013 I wanted to thank those of you that have responded to my posts. In early march, a PET scan showed that my husband's cancer was progressing. More mets to other parts of his lungs, more lymph nodes and now his liver. His brain scan, done in Feb, showed no mets to the brain, but by the end of March, he would say that he had severe headaches and his vision was extremely blurry. His onco started Taxotere in early March and we had hoped for some regression. Sadly, on the morning of Monday, April 22, my husband woke up coughing. He began vomiting blood, so we called 911. Before the ambulance arrived, my husband stopped breathing. We took him to the ER, my son & I were taken to a waiting room, and shortly thereafter, the doctor came in and told us that my husband had passed away. We knew that before we ever left our home. My husband prayed that he would not have to struggle in the end. He was scared of suffocating and did not want to become a burden to me & my son. The last thing he wanted was to be in a hospital bed, in our home, with everyone sitting around him, waiting. God answered his prayers and took him so quickly, so unexpectantly, and he now is at peace and his suffering is over. My husband is my hero. He was SO strong and so brave. He was in excruciating pain, but never complained. He worked all the way up to the Saturday before he died, came home washed his uniforms and prepared to go back to work on Monday morning. We had no idea that he was even close to passing and when it happened, it was so quick that he did not have time to get scared, so fast he didnt know what was happening to him. He died in our bedroom, and his spirit is in our home with me. We met when we were 16 years old. Married when we were 23. I had the honor of spending 39 years with this wonderful man and he will be in my heart until we meet again. He is my star in heaven! Quote Link to comment Share on other sites More sharing options...
CraiginPA Posted May 10, 2013 Share Posted May 10, 2013 Debbie, I am so sorry to hear of your loss, but as a stage IV cancer fighter I do understand his preferences as you described and it sounds like it was a good end though unexpectedly soon. Thank you for sharing your news. I wish you your own healing as you adapt to continuing on without him except in spirit. Best hopes, Craig Quote Link to comment Share on other sites More sharing options...
chloesmom Posted May 13, 2013 Share Posted May 13, 2013 Hi Debbie, I am so sorry for your loss and I hope you can find peace in some great memories-39 years is a long time. Cindy Quote Link to comment Share on other sites More sharing options...
michellep Posted May 13, 2013 Share Posted May 13, 2013 Dearest Debbie....I am so sorry to see this post. Your husband was an amazing man and I'm sure he is in heaven smiling down on you. Please come here anytime you wish to talk about what you're feeling. We all understand and care deeply. ((hugs)) Quote Link to comment Share on other sites More sharing options...
Hopeful92811 Posted May 25, 2013 Share Posted May 25, 2013 I'm so sorry for your loss. You and your family are in my thoughts. Quote Link to comment Share on other sites More sharing options...
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