Tom Galli

Tell you dad if I can live, so can he. I can also still do differential equations! Stay the course. Tom

BMcarter, I am a 13 year survivor of NSC Squamous cell lung cancer diagnosed IIIB. I didn't have a metastasis to the brain but know many who have had successful WBRT. I am an engineer and the consummate numbers guy. It is not possible for me to under anaylize anything. Quantative analysis with results statistically expressed are my alpha and omega. So I've spent countless hours trying to quantify treatment probability of success, and predict outcomes. I've failed miserably. There are simply too many variables to achieve a quanatitative understanding with high confidence. Your dad's risk is cognitive function perhaps already esatablished as a surgical consequence or if not established, maybe caused by WBRT. To be sure, it is an interesting problem full of complexity and uncertainty but it is the wrong problem to be focused on. If he forgoes WBRT, he turns loose rapidly growing SCLC on his brain. Quantitative prediction of function loss is irrelevant compared to unconstrained growth of SCLC. WBRT is a well established procedure that often yields remarkable results. My opinion, deal with the cancer first and worry about cognitive function later. Stay the course. Tom

We often hear smoking gun used to describe the “ah ha” moment of a who done it. I was unsure of the meaning and asked Siri. My Apple genius defined it as “as piece of incontrovertible incriminating evidence.” I know two things with high confidence: (i) there is a very strong correlation between smoking and lung cancer, and (ii) implying smoking as a cause adds to the self-induced stigma that smacks down research for my disease. So, how do we address the stigma without pointing the smoking gun? I couldn’t stop because I was addicted to nicotine. When I was young and fearless, almost everyone smoked and I joined the crowd. In my 30’s, most quit. I tried, many times and ways, but couldn’t. My addiction was stronger than will power. Addiction is irrational. Most addicts recognize the harm, but recognition caves in the face of physical craving. How is addiction to nicotine different from alcohol, heroin, or cocaine? It isn’t but what do the health authorities call it? The Center for Disease Control (CDC) says smoking caused 480,000 deaths last year in the United States. Note absence of the word addiction. The CDC also says about 88,000 people die annually from alcohol abuse. Note abuse is not addiction. Almost 35,000 people died from heroin overdose in 2015, according to the National Institute of Health. Note again, overdose is not addiction. It is unreasonable to suggest these deaths resulted from one time or occasional use. I contend not using addiction to characterize the root cause is part of the problem. If I smoke, abuse or overdose, I am branded guilty of doing something wrong. I am causing the problem. There is no disease or medical abnormality; therefore, there is nothing to research. This individual guilt becomes a collective stigma. If our national health authority doesn’t treat use as addictive, it certainly won’t be prone to find new treatments. Nor, will there be interest in treating consequences. Thus, the paltry research funding for lung cancer. Many people experiment with addictive drugs and are fortunate to stop short of addiction. But, when one can’t stop, one is addicted and mechanisms must be found to treat the addiction. So, let’s change the nomenclature. I am addicted to nicotine and my addiction likely caused lung cancer. Where is the smoking gun pointed now? Stay the course.

Jerry, Welcome here. I've experienced 18 treatments of the very same chemicals (taxol and carboplatin) you are prescribed. No, they did not eradicate my squamous cell NSC lung cancer but held it in check until something came along that did. In my case, it was precision radiation (CyberKnife) that just was approved for lung cancer patients during my 4th line treatment. No side effects are not pleasant, but for me, they were much preferred to the alternative of no treatment. I'd ask several questions of your doctor: (i) does he have a treatment strategy beyond taxol and carboplatin, (ii) is this strategy inclusive of precision radiation, and (iii) does the strategy involve immunotherapy (as Tylalla suggests). If you scan our profile information, you'll discover that many of us are long tenured survivors and have been just where you are now. Stay the course. Tom

Shari, Do you tear scar tissue formed over the last 4 months? I wouldn't know but I've experienced many aches and pains associated with my surgeries, some years after. I have a lot of scar tissue. One examining physician who didn't know my history thought I was wounded in battle with scars front, back and side. I can't count the number of chest tubes I've had installed. I even had one fall out while at home waiting for the next surgery. And with all this trauma, I often have strange aches and pains that I attribute to the mayhem of my bronchopleural fistula repairs. My GP told me to note the problem and see if it repeats and if it does, seek medical attention. My aches often occur but rarely repeat so I chalk it up to new normal. I'd take advantage of your proximity to a surgeon and ask. Perhaps a quick exam would put your mind at ease. Haven't heard from you for a while. Glad you are back to work. Stay the course. Tom

Susan! Well, how about that! From scanziety child to survivor to a wedding celebration all in one year! I have a good feeling about tomorrow's scan. Mine is in two days and I must confess I have a touch of scanziety looming. But, that is part of the drill. I long to hear your good news results. Stay the course. Tom

Paula, I gave a more detailed response to your initial post on the SCLC forum, but to your questions -- "does anyone ever live more than 1-2 years?" Absolutely and I've met many, in fact, I speak with many SCLC survivors. Stay the course. Tom

Iamaware, Welcome here and very sorry to hear of your boyfriend's diagnosis. You mentioned he has Stage II lung cancer but you don't mention the type. There are two major types and many subtypes. The information about types is important because each is treated differently and so telling us about it allows us to share our treatment experience with you that you might pass on to your boyfriend. Here is some basic information about types of lung cancer. If you are comfortable, let us know more details about his diagnosis. If not, feel free to read the forum and information at LUNGevity.org. Both are good sources of information about lung cancer. And, of course, we're happy to answer any questions you might have. Stay the course. Tom

Paula, I hate cancer also. I won't blow smoke at you. While in treatment, I experienced exactly the feelings you describe. In my third line treatment, after a failed surgery, 2 more surgeries to correct the failed one, 3 stint insertions, and two cancer recurrences to my remaining lung, I was near the end of my rope. Yes I also have faith in a spiritual sense but even that profession and reliance left the human side of me depressed and afraid. What improved my attitude? Well here is the short version in the second paragraph. I also discovered an essay by Dr. Stephen J. Gould who contracted a almost nearly fatal abdominal mesothelioma and was very upset over his survival projections. I am a student of Statistics but I'd forgotten important aspects about the meaning of a mean or median, especially as it concerned my lung cancer survival projection. I wrote a blog about it and you may gain some insight here. In that blog, there is a link to a youtube reading of Gould's essay that I often listen to. Since becoming acquainted with Dr. Phillip Berman's attitude of living the life one has, and Dr. Gould's explanation of the inadequacy of Statistics and a predictor of survival, my attitude towards my disease and my focus on life changed. Welcome here. As you read about us, individually and collectively, you will find many of us are long tenured survivors of late stage diagnosed lung cancer. My personal message of hope for you is if I can live, so can you. Stay the course. Tom

CarlaAnn, Welcome to our forum. I often spend early hours of the day (well before the sun shines) reading and responding because I also have insomnia. However, I do not have a medical background but I have 13 years of experience. So, let's breakdown your problem. Like Susan, I experienced "roid rage" after each infusion. My pre-infusion steroid was almost similar to yours and I was too wired to sleep for about 30 hours. But, I never experienced your symptom -- the long delay insomnia post infusion. What might be the causes? My doctors and I have spent countless hours trying to find a reliable and medically viable way to experience sleep. My problem is painful peripheral neuropathy coupled with significant nerve damage in the plane of my thoracic incisions. But, one topic we discussed that might have been an additive cause was stress. I worked during my 18 infusions of post surgical chemo and continued working for 5 years after my treatment ended. I had a very stressful job and chronic pain magnified the stress. But stress alone is enough. What might be causing your stress? Well you are being treated for lung cancer and I found that to be the most stress I've ever experienced. More stressful than combat because in combat one can take actions to enhance survival. In lung cancer, nothing I did enhanced my survival and that helplessness induced my stress. Now that I'm retired, the work related stress is gone but when other stressful events happen, my insomnia problem worsens. So your symptoms may result from treatment stress, and or fear, more likely both. Medications? I've tried them all with results you report. What do I use now? Xanax. I take 1 mg about 1/2 hour before bedtime and get relaxed enough to fall asleep. Sometimes I need to add 1/2 a mg. Sometimes Xanax doesn't work and I read or write. Reading is preferred because it requires less concentration. I don't watch TV or turn on lights. I have about 6 good sleep nights (6 or more hours sleep) in every 10 days. Of the 4 remaining days, I may get a couple of hours rest but about 2 days in 10, I don't sleep. I've been in this pattern for about 13 years and it is not likely to change. Think about your stress levels and have a conversation with your doctor. Stay the course. Tom

Meloni, There is a lot of good news in your post. Localized cancer is much easier to deal with. So I'm celebrating, even given your early membership in the colonoscopy club. Ensure one of the radiation options considered is CyberKnife. I had it when surgery was not possible and radiation became ineffective. Most likely, doctors these days will have CyberKnife under consideration but I mention it in case it is overlooked. Unload your brain. I see blue skies ahead in the shade of tall cotton! Stay the course. Tom

Joanna, Anything is normal with chemothearpy, unfortunately. There are predictable side effects that happen in most people, but unpredictable side effects in others. Moreover, there are complications that add symptom complexity. For example, chemo is known to affect white blood cells by reducing there number. That sets up a weakened immune system that can result in magnifying any illness. Yes I know of those who suffer fever as a primary side effect and those who get one as the result of a weakened immune system. The only way to determine if fever is a primary side effect is to wait till the next infusion. If it happens again, it might be a normal side effect of your sister's treatment. One more thing, her husband should record the onset of all side effects and note the hours after infusion. Chemo side effects repeat and start at about the same time after each infusion. My doctor told me to start taking mitigating medicine a couple of hours before a side effect started. This helped me. Killing cancer cells with chemicals is tricky. Some, perhaps many good cells die also. That is why we often lose hair. The cells that produce hair are among the fastest growing cells in the body and chemo attacks fast growing cells. Gastrointestinal complications occur because the cells in our digestive system are also very active. I'm sure they will sort out the fever quickly and will be prepared for the next infusion. Stay the course. Tom

Michele, Well, I'm a 13 year survivor and still fear recurrence of lung cancer. In fact, I see my oncologist on February 28th and have a CT scan on the 24th so I'm deep into scanziety. I don't think the fear ever departs because cancer is persistant and often reoccurs. Nine weeks post-op and a cold are about the worse things I could imagine. I was exposed to visiting children 5 days after I returned from having my right lung removed. Five days later, I was back in the hospital with a fever of 105 and connected to all kinds of tubes and devices. Try and stay away from folks that have cold symptoms and children. Don't be afraid to wear one of those medical masks in public. You can get them at a pharmacy. Wash your hands all the time and carry alcohol solution to sanitize your hands when you can't wash. Stay connected with us and don't hesitate to ask further questions. (Yes - I had all kinds of aches and pains that I thought were a recurrence, but they were phantom symptoms.) Stay the course. Tom

Sue, Unfortunately, I know all about mucous plugs. I have bronchus stump scar tissue in my airway and it is a constant source of irritation, especially during allergy season. I notice you live in Kentucky. When I was stationed at Forts Knox and Campbell, I suffered horribly during the pollen season. Now with and irritated airway, I also have problems in Texas and they are shortness of breath and congestion. On the next doctor's consultation, ask about obtaining a prescription inhaler to help her with these symptoms. She'll likely have them again, even after radiation. I use a Combivent B-1 inhaler to diffuse my shortness of breath and congestion symptoms. Stay the course. Tom

Joanna, Welcome here. When do you need to go. Normally, chemo is administered on a fixed schedule with a defined period between infusions. Ask your sister's husband to tell you the infusion cycle, that is once every three weeks or once a week. Chemo effects everyone differently but once side-effects develop, they generally stay the same and occur with the same frequency after each infusion. For example, on the second day after my infusion, I'd experience nausea. On the third, joint pain would set in. Moreover, by the fifth day after infusion, side-effects would be much reduced. The third week in my 3-week cycle, I felt almost normal. So to help you decide when you need to go, understand her infusion cycle and schedule. Then ask your husband what he needs help with. If it is attending to side-effects, then schedule your visit to be there at the onset of side-effects. But, I felt pretty miserable with my side-effects and was well medicated and didn't want visitors. If your sister's husband's intent is to lift her spirits, visit 5 to 7 days before her next scheduled infusion. I had Squamous cell NSCLC. My diagnosis was Stage IIIB but I had surgery after pre-surgical radiation and chemo to shrink the tumor. My cancer metastasized to my remaining lung after surgery and had only chemo to treat it. That was in the dark ages of chemotherapy (2004) when only several drugs were approved. Now, immunotherapy advances are starting to emerge in research that are effective against Squamous cell. Here is some information about immunotherapy and recently approved drugs. My point is if I can live 13 years after diagnosis, so can your sister. You might try and be a resource of information for your sister's husband. He'll likely be your sister's caregiver and one of the most important functions of a caregiver is to ask terribly preceptive questions during oncology consultations, especially when discussing treatment plans or options. My wife's questions likely saved my life. You might want to point your sister's husband here and let him read into the disease. If he copies and pastes English text into Google, it can be translated to French and that might be helpful. We have many non-US members on the forum and perhaps one or several read and write in French. I'll ask around is you are interested. You'll likely have many more questions. Ask away. Stay the course. Tom

Alyssa, How could I have missed you? Welcome here. This is a good place to be if you have lung cancer or are caring for someone with lung cancer. Look around a bit and read some of our profiles to learn about us. Questions? Fire away. We are the experts; not by education but by experience. Stay the course. Tom

Mally, Am glad your first experience is over. You might be feeling good because of the steroid high. I felt good on infusion day and the day after but day 3 after infusion is when the side effects showed up. You may not sleep tonight depending on how much steroids they gave you. Nevertheless, it is good to have your nerves settled about the process. Stay the course. Tom

Mally, The PET scan works because cancer cells have 5 or more times the metabolic rate than normal cells. So, if one fasts and then injects glucose tagged with radioactive iodine, the cancer cells quickly consume a large quantity of the glucose leaving the radioactive iodine residual. The PET apparatus measures the iodine. That is the PET scan tie to carbohydrates -- only glucose -- and cancer. That said, it is a good thing to control carbohydrate intake. Stay the course. Tom

Stokedsurfer, Great news about your mom's recovery. As to your question about adjuvant therapy for Stage IA patients, it sounds like your mom's oncologist and surgeon are in complete agreement. That would end my research. Stay the course. Tom

Barb, Welcome here. Lung cancer is a b***h! It is often discovered late and for many palliative care is the best form of treatment. During my many recurrences, my oncologist, wife, and I had many conversations about palliative care when curative treatments were not working. Consequently, we were able to formulate our plan for palliative care. From reading your post, it looks like you folks didn't have a lot of time to think about your palliative care objectives were. So, I'll share mine with you. I wanted my life in the palliative stage to be as normal as possible. I wanted to be home, enjoy the company of my friends and family, interact with my pets and partake in all those tasty treats my wife -- the queen of desserts -- can generate. I also wanted to be able to leave the house to see a movie or go out to dinner with friends. In summary, I wanted to live, even though I understood the time would be short. There were many meltdowns. I melted down, then my wife would melt down but after the drama, we's go back to the plan and remember what our objective for seeking palliative care was -- living an enjoyable and meaningful life. I challenge those that tell you not to display feelings to explain how that is not possible. But, confine those feelings to sadness about the situation, not mourning. This period is still a time for living. Now for some suggestions. During my fourth line treatment, that was unsuccessful, we discovered the power of photographs of our lives and we'd spend hours in front of the computer reviewing all the good, bad and ugly memories we shared together. You know, every family has that "holiday melt down" and it was high drama at the time, but years later it was fodder for laughter. We'd page through those memories and harvest the meaning in our lives. I did not get admitted to hospice. I got lucky and a form of stereotactic radiation was approved for lung cancer patients. This radiation allowed me to avoid the hospice admission. But we prepared for hospice. In my long tenure of surviving lung cancer, I've interacted with many who entered palliative care. I've spent hours answering questions like "what next" or "what do we do." Your palliative care providers might be able to help you answer those questions or refer you to someone who can. I tell people who ask me that cancer is a disease of life and death. While life is available, I choose to live it and search for joy and when I find it, I share it with those I love. Stay the course. Tom

Eileainn, Ensure the hospital doctors include your brother's oncologist on the radiologist report of the hospital administered CT scan. That scan should show areas of concern along most of his back. I'm not sure I understand how Opdivo would cause back pain so ask the hospital doctors to explain their reason for this association. Any explanation by the hospital doctors for his hemoptysis? Pain from not wearing a back brace is something I understand and you should press your brother to wear it. Lung cancer that metastasizes to the bones often causes weakness in the bones. Has his oncologist ever mentioned the drug Zometa as an additional treatment? I assume your brother will meet with his oncologist on the 21st. If that is the case, then the hospital CT results, Opdivo caused back pain, and Zometa would be good topics for discussion. Can you accompany your brother to this consultation? If not, is there someone in the family who can. It is often important to have a second set of ears on hand to ensure all questions get asked and answered. Stay the course. Tom

Lydia, Wonderful news. Simply wonderful. I've read lots of information on the effectiveness of Osimertinig (Tagrisso), the EGFR inhibitor that targets resistance to tyrosine kinase inhibitors (TKIs). Keep dancing and.... Stay the course. Tom

Eileainn, Your brother indeed has a lot going on. Just some clarifying questions. Do I understand that your brother started Opdivo in November 2016? How long after starting Opdivo was the scan that showed his tumors neither growing or shrinking? Has experienced adverse side effects from Opdivo? And how long after the scan was his episode of hemoptysis, numbness and increase in back pain? The point of my questions is to determine if Opdivo is working. Some I know taking the drug get a stabilization of their tumors -- that is they neither grow nor shrink. Your mention of symptoms that caused his current hospital admission could be progression of cancer or as you indicated problems resulting from the surgery. My advice would be to learn what is causing the symptoms of hemoptysis, numbness and pain and hospital testing (during his current admission) will likely tell you this. Then, depending on the cause of these symptoms, consult with his oncologist to determine next steps. Are there promising immunotherapy drugs in the pipeline? Yes, there are many and a cancer center like Moffitt ought to have the latest information. Here is a rundown on immunotherapy and approved drugs. Many here have had both progressions and recurrences of lung cancer after treatment. Unfortunately, lung cancer is a very persistant disease. But the fact that we have so many long term survivors on this site ought to kindle hope for your brother's outlook. Welcome here. You'll likely have many more questions and this is a good place to ask them. Stay the course. Tom

Nicole, Susan is giving good taste and mouth sore remedies. I'd add citrus fruits helped me a great deal. In particular, oranges and pink grapefruit. I also consumed cranberry juice. These didn't completely eliminate the strange sense of taste but eased the sensation. It is not unusual to miss a chemo session because of blood counts. I can't recall exactly of the 18 total I had that were postponed but it was frequent enough to become a non problem. My doctor told me the chemo chemicals stay in the body for quite sometime and that postponed sessions were figured into the dosing and scheduling of my treatment plan. Now about coughing up stuff. My tumor was in the main stem bronchus of my right lung. As radiation and like chemo killed it, the tumor tissue became something to cough up. And it was unsettling to me because it was the same "chunks of stuff" you report for your father. So, in my case, I have to say this is not a bad sign but a good sign. The radiation and chemotherapy are having a good effect on the tumor. They are likely killing is and your dad is coughing up dead tissue. He's near or at the point in radiation where he will become very weak. Be ready to assist. Stay the course. Tom

Mally, I understand you being afraid of chemo. I was also, but the actual first infusion turned out to be a piece of cake. The only difficulty was finding a cooperating vein to install an IV. Given your medical complications, it is best you ask your chemo nurse questions about expected side effects, including hair loss. My first chemo occurred in combination with radiation and I was told it was a weak dose. Consequently, I didn't lose any hair and all other side effects were very tolerable. My second round (about a year after my first) of chemo was full strength. About a week after my first full strength infusion, my hair started falling out as I combed it. Both times the drugs Taxol and Carboplatin were administered but this full strength chemo brought on a full complement of side effects. Most were handled by medication prescribed by my doctor. You'll likely see your chemo nurse two times. On your infusion day, he or she will go through a detailed checklist to understand your medical history and determine all medication you are currently taking. The nurse will then give you a detailed briefing of the type of medicine you will receive by infusion. It may be a good idea to bring someone along for this first session because there is a lot of information provided. The nurse will also give you written information about all the drugs you are receiving and this will include details about side effects and what to do about them. During my infusions, I had to report back to the clinic two days after I received my drugs for a blood test. If my red and white counts were low, I received medication to boost them. This second visit was a good time to discuss side effects I was experiencing. On several occasions, my complaint about a new side effect resulted in the nurse consulting with a doctor and I received a prescription for new medication to counter the new problem. Your experience may be different because your chemo medication is different than I received. Moreover, each of us responds differently to medication. My best source of information about the chemotherapy I was receiving was the chemo nurse. You may have read this before, but here is a good summary about chemotherapy. Stay the course. Tom