Tom Galli

Welcome Lizr, Post thoracic surgical swelling, is it normal? Yes for a period. Unfortunately, what is normal to one person is abnormal to another. You are a month and 5 days post surgery. I would think in that period, swelling should begin to reduce. Pain also but my thoracic surgery pain became chronic. Still pain is something I'd have checked out by your surgeon so I suggest scheduling an appointment. Stay the course. Tom

Mary, I've been exactly where you are. Lung cancer is persistent and like you I did not expect a reoccurrence. Indeed, I had 4 recurrences following treatment that produced no evidence of disease or NED. It took a total of 5 distinct treatments to finally achieve a long period of NED and these were administered over the course of 3 years. Perhaps you are interested in learning how frequent lung cancer recurs. A recent National Cancer Institute study suggested about 33% of stage 1A and 1B experience a recurrence; 66% of state IIA, IIB or IIIA have a recurrence; and stage IIIB and IV have about a 33% recurrence rate. But this late stage percentage is skewed because of the competing risk of mortality. Here is the article in case you want the details. http://jnci.oxfordjournals.org/content/107/6/djv059.full.pdf+html So where does that leave you? You've got to reclaim your mojo, put your game face on, and move out to battle the beast. Do you have squamous cell or adenocarcinoma NSCLC? There are emerging targeted therapies for people with certain forms of adenocarcinoma. If your tumor was biopsied, them perhaps your tumor was tested to see if it would respond to targeted therapy. Here is a concise explanation of targeted therapy: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy If you have squamous cell, there are new immunotherapy treatment methods that are very effective against recurrent disease. Here is information on immunotherapy: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy I'm not knowledgable about the Irish Medical System, but in the US tumor samples are preserved so it is often possible to have a new pathological exam of your previously biopsied tumor to see if your cancer will respond to targeted therapy or immunotherapy. Bottom line Mary, if I can live more than 12 years after my stage IIIB NSC Squamous Cell Lung Cancer diagnosis, so can you. Questions? Feel free to ask them here. Stay the course. Tom

Cynde, I'm sure you are doing your best everyday. Everything you've explained exactly defines the plight of a caregiver to one suffering from the ravages of lung cancer. You are doing well and your efforts in terms of your wife's expectations and outcomes are vastly more important than you realize now. Stay the course. Tom

Cynde, Your situation seems so familiar because my attitude towards treatment and outcomes was exactly like your wife's. Like you, my wife bore the brunt of my irascibility. We laugh about my antics now but Martha reminds me of just how sharp her life on the edge was during my treatment. Still, she was (and is) a rock. I was overwhelmed by fear, anxiety and depression. These three turned a courageous confident man into a nightmare. No maybe nightmare is too meek; perhaps worst nightmare is better. Still she was a rock. Be the rock Cynde. Stay the course. Tom

Welcome Beth, I've had both radiation pneumonitis (inflammation of tissues in the lung caused by radiation treatments) and low oxygen saturation rates. Both eased after a course of steroids and a couple of weeks of oxygen therapy. That was almost 13 years ago and my cause was exactly the same treatment regime as your husband - 30 radiation treatments and six infusions of taxol and carboplatin. I also was prescribed a "rescue" inhaler that I believe also had steroid medication. Further, I'm a squamous cell lung cancer survivor. I've venture your next milestone is an end of treatment scan to determine the effect of radiation and chemotherapy on Kent's lung cancer. I hope he gets clean scans! This is a good place to ask questions. Many of us have been down the same treatment path as Kent and we are still here. Stay the course. Tom

Diana, Ensure you tell the pulmonologist about your coughing and pain. He'll likely have scripts to address both symptoms. Hang in there. Stay the course. Tom

Cynde, I've got a survivor story. Here is the short version - https://sites.google.com/a/redtoenail.org/chronicles-demo/home/tom-galli There is a longer version - the book Scanziety. How do you keep it together and how do survivors find hope? These are two of the most difficult questions posed by anyone involved with lung cancer. My wife was my caregiver and I stole courage and hope from her, shamelessly. On day one, she told me I was going to get through this and almost thirteen years later, her message remains the same. She was my rock against the hard place of lung cancer. So, short solution - be the rock but in doing so, understand the reality of lung cancer, persistence. As you mentioned, her treatment will not be one and done. Recurrence is normal and treatment failures should be expected. I had a total of 4 failures in 5 treatments till I achieved NED (no evidence of disease). My active treatment spanned more than 3 years. But, I am alive as are many others on this site. If I can live, so can your wife. Prepare your wife for the long treatment game. My treatment mayhem was in the dark ages of lung cancer treatment - 2004 through 2007. Since then, whole new fields of treatment, particularly for adenocarcinoma, have emerged. You mentioned Opdivo. This drug is one of the new immunotherapy treatments that has produced dramatic results for some. Read about it here - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy Take some time and let this settle in. Part of being a rock is learning about lung cancer. Knowledge is power and arms you with potential "silver bullet" questions for your wife's doctors. My wife's silver bullet saved my life and it caused my oncologist to find another way. You'll likely have many questions and this is a good place. We are the lung cancer experts, not by education but by experience. Ask away. Stay the course. Tom

Thank you Susan!

Gengal, Anyone else have guilt and fear? Of course and these are especially active when we are unable to help a loved one. In my experience, these are commonly associated feelings when someone we care about encounters life-threatening disease. But, let's notionally create two baskets. Put the guilt and fear in one and your medical concerns in another. Let's focus on the medical concern basket, the one we are best equipped to help with. First, I've never heard of sympathy tumors in twelve-plus years as a lung cancer survivor. Second, it appears your pulmonologist has you on the right course following up on your discovered nodule. I've read several of my CT scan radiologist reports and they identify all kinds of nodules. I'm told that is not unusual. The technology is so precise it identifies everything. The only way to sort out everything from potential disease is a repeat scan after some period of time. Six months sounds about right. I don't know much about breast cancer but a biopsy should disclose if there is something to be concerned about. So a future CT and biopsy will address concerns in your medical basket. Let's close the lid on the medical basket for now because without more information, we are left with speculation and needless worry. I've found it best not to worry about things I can't control and test results are one of those things. Now to the guilt and fear basket. I've experienced these feelings. I might say from my prospective, you have no reason to feel guilt about your mother's disease. I could also say you shouldn't fear something that may or may not occur in the future. But, this is not the best forum to address those concerns. A paster or a counselor is a far better resource so I'd suggest a session or several with someone trained to help you deal with these very powerful emotions. As a postscript, I've never had a physician advise me to get life insurance, but thinking about it there would be a vast difference in premium if you did not check cancer on the application form. Perhaps that is what the doctor is trying to point out. Stay connected with us. You'll likely have more questions and this is a good place to ask. Stay the course. Tom

Vigilius, Sorry I am late to respond to you post. Okay, stage IV adenocarcinoma and first line taxol-carboplatin treatment that may have held the fort. A PET scan to confirm and tumor genetic testing to screen for targeted treatment are next steps. Second line immunotherapy treatment started while waiting for PET and genetic testing. That is an aggressive decision and a meritorious one. It says to me, immunotherapy might work if the tumor does not display markers qualifying for targeted treatment, and if the tumor does display markers, targeted treatment is in reserve. It does indeed sound like you are associated with a ready for prime time treatment center. Lauren cited material that explain some of the cancer vocabulary. I'd read that and here is more on immunotherapy that might be helpful - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy Asking good questions is the right role and they seem to be bound by PET and biopsy results, and a future scan to assess impact of immunotherapy. From what you've said, you are on the right course and waiting for results. Unfortunately, waiting is a universal and incurable lung cancer symptom. Stay the course. Tom

Diane, No mutations and pain from undiagnosed cause, he is in the hard row to hoe. The pacemaker ought to control AFIB so that is not limiting but the pain is. I wish I had a magic wand you could wave to calm the storm. I can't tell you what to do, but here is what I would do if I was in your husband's row. Having experienced pain and in fact living with chronic pain, I'd find an answer to that first. There is no way to enjoy anything in life with pain. Then once a pain strategy is found, perhaps a palliative treatment, that minimizes it, I'd make a treatment decision. The treatment decision will involve you and your husband asking and answering three questions: do we treat, do we try curative treatment, or do we seek palliative treatment. These are hard questions to ask and answer and almost without exception, each late stage diagnosed lung cancer survivor is presented with these three questions. And, unique to cancer, having made a choice, you may need to revisit each of these three questions again in the future. But, for now I'd press for a solution to his pain. Stay connected with us Diane. Stay the course. Tom

Martin, Unfortunately, the emotional roller coaster continues for me also despite more than 9 years of NED. I still see my oncologist twice a year and knowing that and how persistent lung cancer can be keeps me on the roller coaster, disease-wise. The road I choose is to realize that I can't get off the roller coaster (fear of recurrence) so I just try and find something in each day that brings me joy. Joy is beyond happiness and it is the little things that bring the most. Recent examples are: looking at the stars on a cloudless sky; watching my cat chase on a phantom chase through the house; admiring the wonderful produce at our town's farmer's market; and having a totally decadent and cholesterol-breaking hot wings and fries dinner. I look for little things each day and when I realize I found one, I revel in it. Thinking about my uncertain future, years ago, brought depression because of vast uncertainty. My solution was to avoid thinking about it. I can't control it, can't influence outcomes, and can't avoid consequences. So, unless it is deliberate planning for a trip or a vacation, I don't think about what may happen next week, next month, or next year. I don't always succeed but when I do, and I am getting better at it, and when I find something in the day that is joyful, I realize I am living the good life. No one of us is alone. Despite differences in our lung cancer recipe, we all travel nearly the same path. There is treatment and then there is living. Treatment is a living enabler and my challenge is to seek life meaningful to me despite treatment or fear of recurrence. Stay the course. Tom

Yovana, So you had a NED (no evidence of disease) consultation. Strike up the band! That is fantastic news. You will likely have a series of follow-up scans perhaps once a quarter for a year or so to ensure things stay NED. But, for now, celebrate NED. Stay the course. Tom

Welcome Nick, Great news about your response to Tarceva. I had it as a combination therapy during my last Taxol and Carboplatin treatment cycle. That was in 2004, way before doctors understood what Tarceva targeted. I had Squamous cell and Tarceva was effective against certain forms of adenocarcinoma so it didn't work for me. But, I knew a woman who took it for 10 years and it was so effective, she passed in advanced old age with heart disease. You are receiving what is now called targeted therapy treatment. This is relatively new and effective way of controlling lung cancer. Here is information you might find useful: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy Stay connected with us and let us know how your treatment is progressing. OBTW - I experienced digestive problems (actually a revolt of my digestive system) from Tarceva as one troubling side effect. Someone taking it told me to have a plain bowl of steamed riced in the morning and it calmed the revolt. Stay the course. Tom

Sher, Welcome here and thank you for helping your friend navigate his lung cancer treatment. I would not have survived without the assistance of my wife. She did so many things that were a necessary tonic to my nearly constant 3-year treatment process. If your friends only had brief periods of anger and frustration, then he is a much better man than I. I was a nut case! Martha and I laugh about it now, but she suffered the uncertainty of outcomes compounded by the misery of my "attitude". I was not a calm and serene patient and did not go quietly into any treatment. But, Martha stood fast against the ravages of my "cursed disease." I do not have experience with Opdivo but many here do. Here is some information on the promising immunotherapy treatment your friend is receiving: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy Stay the course. Tom

Dirma, Welcome here and you've started by asking a very tough question indeed. Unfortunately, for most of us, even those diagnosed at an early stage, when it comes to treatment with chemotherapy alone, we are in either an extend life or extend quality of life situation. Are there treatments that offer more hope? I'm assuming a biopsy was performed and your husband was screened for suitability for targeted treatment. Here is some information about these and you might ask if your husband's type of adenocarcinoma is treatable with these new forms of chemotherapy - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy Are there complicating health problems that his doctor is concerned about that limit his treatment options? I guess we need to know more about your husband's disease to give fuller answer to your important question. Stay the course. Tom

You are right. I just checked. Why don't you start a small cell lung cancer topic? I've seen more recent posts from small cell survivors but they are in other forums (Introduce Yourself, Share Your Lung Cancer Story or the General discussion forums). You might want to scroll through these to see information by a small cell survivor. Stay the course. Tom

Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients. A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence? A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality. Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared. How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. Stay the course.

Mary, Regardless of stage, lung cancer is scary. As for that "death sentence" feeling, look at your forehead in the mirror every morning. If you don't see the word "EXPIRED" stamped on it, resolve to have a good day. After nearly 13 years of this nastiness, I've concluded that what matters to me is enjoying the life I have, not wishing for the life I may or may not have. Abide by your follow-up scan schedule and report any unusual aches and pains. And, most importantly, with school back in session, avoid school aged children if at all possible. A chest cold is not the way you want to greet the first fall after thoracic surgery. Stay the course. Tom

Great to hear from you Eric. It has been a long time. Spain! Well that is a big change weather wise from Scotland. We've spent a lot of time vacationing in Spain and are amazed to see the number of UK folks living in the towns and villages. Stay well and good luck house hunting.

Gina, Here is information on immunotherapy, a very promising emerging therapy for treating certain types of advanced stage lung cancer. If doctor is recommending Opdivo, then your husband has a type match, and that is good. https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy I have no actual experience because my chemotherapy was administered in 2004 through 2007, well before the emergence of targeted treatments. I've read when immunotherapy works, it works dramatically. More questions? Ask away. Stay the course. Tom

Martin, Welcome here. I think your treatment decision should be made after the tumor genetics are determined. There are so many advances in targeted therapies for adenocarcinoma that can have a dramatic effect on your cancer. Some of these are so effective, they've moved to first line (standard of care) treatment. Moreover, many targeted therapies are are also effective after conventional chemotherapy (carboplatin or pemetrexed) so that option remains open to you. I'd make the treatment decision after learning the genetic information about your tumors. Immunotherapy discoveries are also exciting but I'd hold the clinical trial in reserve until the genetic makeup of your adenocarcinoma is revealed. You'll have many more questions and this is a good place to ask them. We are the cancer experts, at least in terms of experience. Stay the course. Tom

Monica, Well I meant my past, my failed surgeries and treatments, the vast disappointment that for me was very hard to deal with. I had to forget those expectations of treatment success, realize that cancer was persistent, and settle in for the long treatment process. When you go one for five in treatments over 3 continuous years, one has a lot to forget. I'm not sure I agree with the idea that I created a problem myself. All that is necessary to get lung cancer is a pair of lungs. Some 15 to 18-percent of those diagnosed are never smokers and genetic research has well established that cancer is a disease of our genes. We all have every type of cancer in our genetic makeup. What remains unestablished is what triggers cancer to start. Yes, there is a strong correlation between my smoking and lung cancer but it is a strong correlation, not an absolute fact. There are no miracle drugs. Cancer or not, no one knows how much time we have in our lives. Rather that worry about that, I choose to enjoy that which I have. You have that power to choose also. Stay the course. Tom

Monica, Metastatic lung cancer beats coping to a pulp. I didn't know there was a stage 5 but no matter, if it has spread it is beyond coping. How does one live? Now that is a better question. You've identified the solution: "enjoying the gift of each day." I tried for 3 years to cope and failed miserably. Then I settled down to forgetting the past, declaring the future irrelevant and just trying to find a little joy in each day. That is the way I live. It is not a perfect life but my life before cancer wasn't perfect. It is what I have and I'm satisfied with that. This is a lot to digest so I'll keep my response short. Feel free to tells more about your type of lung cancer and treatment so we can help. Stay the course. Tom

Ellen, I can't pretend to answer your question of nodule removal vice biopsy. It is, however, a very good question for the surgeon and I'd ask it. Sloan Kettering should have some very capable folks who can answer your question. I wouldn't worry about the CT scan radiation at this stage. It is essential to determine the nature of the nodule and one or even a dozen CT scans don't involve as much risk as say metastatic cancer. Stay the course. Tom