blwood Posted July 19, 2006 Share Posted July 19, 2006 My husband was diagnosed with stage IIA nsclc, with neuroendocrine features, after a left pneumonectomy in June. He is nearly 82 years old and has both heart disease (with two stents placed last Fall) and diabetes. He takes nearly 25 medications a day for the heart condition, hypertension, diabetes, asthma. At the same time, he is highly functional and very active. (We were hiking in the Andes in April! Not the hardest hikes, but hikes just the same.) The cancer was an incidental finding on an x-ray he had after tripping against the car and injuring his ribs. He had no symptoms related to the lung cancer and had stopped smoking over 35 years ago. He is recovering very well from the surgery, surprising the doctors, and was released from rehab after only 4 days. We have met with the oncologist twice. He says that cisplatin and etoposide are his choice for "mopping up" chemo...there is currently no visible evidence of disease. Two of 19 lymph nodes near the primary tumor were cancerous (adenocarcinoma, again, with neuroendocrine features.) He said however, that the idea of treating my husband with these aggressive medicines makes the hair on his neck stand up, and that he can also make a case for doing nothing further. He said that he would expect him to die of a cardiac event before dying of lung cancer and that perhaps quality of life should be the bigger concern. He also said that we could try a less aggressive treatment, gem/carbo or navelbine, but of course the cisplatin combos are the only treatments with a track record against this type of cell. Also, there are very few studies with any patients older than 75, and only a few, as far as I can tell about stage II patients. I would appreciate greatly any thoughts that people have about this situation, as we are really struggling with the decision. Thanks so much for taking the time to think about this. Barbara Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 19, 2006 Share Posted July 19, 2006 About all I can offer is my profile. I hope this will help some. I had surgery, chemo and radiation. I was IIA but they treated me as though I was IIIA. I am a bit younger than your husband but he sounds like a very strong person. Welcome to our board. Its a great place for answers, venting, prayers and just talking. Nina Quote Link to comment Share on other sites More sharing options...
Snowflake Posted July 19, 2006 Share Posted July 19, 2006 After surgery I had radiation and took Iressa for two months of a twelve month trial - side effects were bad for me and I was removed from the trial. I have had no traditional chemo and am 3.5 years out from surgery. It IS possible that his cancer is all gone and will never rear its head again. Good luck! Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 19, 2006 Share Posted July 19, 2006 If you would like to investigate Clinical trials Yourself for his condition use this link and click to be redirected. http://clinicaltrials.gov/ct/screen/Bro ... iting=true General Link for about alll trials in US Currently gives info on conditions and Requirements for trials. Check it out. Ok? Second Ask your Oncologist about Tarceva. had a nasty rash side effect probably the worst side effect but that can be dealt with. This Drug is used as a maintenance more than a Cure treatment. MEMBERS HAVE HAD GOOD RESULTS WITH TARCEVA. click on link below for Tarceva; http://www.tarceva.net/home.htm Quote Link to comment Share on other sites More sharing options...
marym Posted July 19, 2006 Share Posted July 19, 2006 There are some treatments that really knock you out and also present some added complications - like low white blood count which risks infection. On the other hand, depending on the growth rate of the cancer there could be an argument for no chemo. I was diagnosed with an 8CM tumor - only signs were bone pain. I have 100% pulmonary function. To date, my only problems have been with metastasis. I would ask as many questions as you need until you feel confident in your decision. (second opinion definitely is called for). But I think it is your decision. Best wishes. Maey Quote Link to comment Share on other sites More sharing options...
Carleen Posted July 19, 2006 Share Posted July 19, 2006 Not much to add, but would also like to say that if you and your husband would feel more peace of mind knowing you are being proactive and aggressive with the cancer, and he is a strong active guy who can fight with determination and strength of will, then go for the chemo. There is nothing anywhere that says once you start a cycle of treatment that you have to finish it. You can try the chemo, and if your husband starts to feel too poorly from side effects, or his blood counts reacts badly you can always stop immediately and do nothing further or try a less aggressive treatment or clinical trial targeted therapy. Nothing ventured nothing gained. Live life leaving no room for regrets and "what if's". (my own personal motto). you are in my prayers Carleen Quote Link to comment Share on other sites More sharing options...
blwood Posted July 19, 2006 Author Share Posted July 19, 2006 Thank you all for your thoughtful replies. And for responding so quickly. I myself am a survivor of stage IIc ovarian cancer...8 1/2 years. I had carboplatin and taxol, so am somewhat familiar with the impact of chemo. I am quite a bit younger than my husband and had the chemo when I was 48 years old. He took such good care of me then and I want to do the same for him, so I really appreciate your help. I guess what is most frightening for me is that the doctor (of course) can't guarantee that even one cycle of treatment won't push Phil over some edge from which he can't return. The question is how much functional reserve he has at this point in his life. His brother, who also had heart disease, died of a heart attack immediately after a chemotherapy treatment for colon cancer when he was in his 70's. However, he was very late stage and his death actually came within the expected time frame. Still, it haunts me. Does anyone know or have experience with the "neuroendocrine features" issue? The oncologist says there is not very much known, but that one study suggests that this type of cell is more aggressive. Also, the oncologist said that once the cancer returns, life expectancy is months to a year. Some of the things I have read on the forum suggest that people are living a lot longer than that with late stage disease? The doctor did mention Tarceva, but seems to want to use this if the disease returns. I am wondering whether it would make sense to do another of the less toxic treatments, like Navelbine, and hope to get some mileage out of that despite the absence of research concerning it's effectiveness in stage II. Again, thanks for thinking this through with us. Barbara Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 19, 2006 Share Posted July 19, 2006 Welcome, Barbara. I don't have much to add to the advice you've already received here. I would tend to go with the chemo as insurance, and you can always stop the treatment if it gives your husband too much trouble. Keep us posted. Don Quote Link to comment Share on other sites More sharing options...
kamataca Posted July 19, 2006 Share Posted July 19, 2006 Barbara, Everyone's story is different. My Mom (profile below) was diagnosed with Stage IV NSCLC 17 months ago. At that point they gave us 12-18 months. Mom has frequently stated that she would not trade quality of life for quantity. She has been very active since then. She's on O2, but she also takes trips to Cabo! She has not gone through any chemo until this past month. Her tumors progressed very slowly, and with her very complicated pre-cancer background, she didn't want to add any more chemicals to the mix unless she had to. She chose chemo now because there is some progression, but she is also relatively strong right now. Hoping for the very best for your hubby. Like others have said, take time, do the research, ask ALL the questions (ESPECIALLY the ones that you think sound dumb), and make your decisions. Kelly Quote Link to comment Share on other sites More sharing options...
Carleen Posted July 21, 2006 Share Posted July 21, 2006 Hi Barbara, I think I can help a little with your question on Neuroendocrine pathology. My husband had Atypical Carcinoid, which was a neuroendocrine cancer. Also, those on this site that have small Cell lung cancer (SCLC) are also neuroendocrine pathologies. There are actually different aggressive traits to these classifications of cells also in a 4 level classification. SCLC is considered the most aggressive of neuroendocrine tumors. On the up side, it is also very responsive to chemo and does show dramatic shrinkage. My husband has a level 3 aggression. It moved rapidly, not as rapid as SCLC, but wasn't very responsive to treatment. Pathology traits continues to a level 1 which is Large Cell Carcinoid which is very slow growing, but doesn't react to chemo hardly at all, radiation works better for this type. What your husband has is NSCLC, which is generally a lower aggression, slower growing cancer. Although Neuroendocrine features could mean a slightly more aggressive behavior (or maybe not), it doesn't mean that it will be advancing uncontrollably. If it gives you any idea of what I am talking about, my husband's neuroendocrine cells were originally diagnosed as SCLC because they were so aggressive. Although his diagnosis was finally clarified they said that he was right on the border of a 3/4 aggression scale. They gave him a 9 month prognosis with that.... He battled and fought this cancer for 3 years 3 months and 10 day. His quality of life was wonderful until up until the last couple of weeks; but before then he worked full time, played golf, played his drums, laughed and loved. We could tear ourselves apart trying to predict what all these terms and diagnosis' mean. But in truth, not even the doctors can tell you exactly what they mean to your husband as an individual. He may respond well to a particular chemo and do great, go into remission. I guess, all we can do is Hope and pray for the best, prepare for the worse, and live each day cherishing and enjoying today and this moment. Quote Link to comment Share on other sites More sharing options...
blwood Posted July 21, 2006 Author Share Posted July 21, 2006 Thanks, Carleen, for the information on neuroendocrine features. I have had trouble figuring that part out, in particular, and what you said was very clarifying. I have to get that path report, I think. We visited our internist today to talk things over. She strongly recommended that we get a second opinion from either NIH or Hopkins or Georgetown, or some combination thereof. She was trying to remain very neutral, but I thought she was pretty concerned about the strain on Phil's heart and kidneys from Cisplatin. Meanwhile, she said that she thought it was okay to take our son, who is starting college, out to Arizona in August and take a week's vacation there. I called the oncologist and he also said that he thought it would be okay to wait to start anything until after we return. He seems to be on the fence again, saying he would prefer to try gem/carbo and that anything is better than nothing. I swear this is a different tune than he was singing Monday. I guess it really is just a very complex and difficult and personal decision. Phil said today was his best day since the surgery (June 9). He was up and active all day and visited with his son and grandaughter who are in from Colorado. No naps! It's great to have you all to talk to. Barbara Quote Link to comment Share on other sites More sharing options...
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