Tom Galli

Michelle, As Donna stated, there are some unusual aspects of your diagnostic path, but let's not dwell in the past. You have questions about surgery. First, read this information about common types of surgery. So, there are two basic types (my characterization). Invasive and minimally invasive. To dwell on the worst case, I had the invasive kind consisting of a "J" shaped incision on my right side that enabled the surgeon to remove my entire right lung. Still, I was out of the hospital, and up and around in 5 days. Had I not caught an infection, likely from a well intended visiting family with children, I would have been back to work in 10 days. Removal of an entire lung is called a pneumonectomy. I've now been living with one lung for almost 13 years without much impact on quality of life. You've not told us enough about the location of your tumor but stage I typically, normally, usually (having said that, there is no such thing a normal in lung cancer) addressed by minimally invasive surgery. Some of these minimally invasive procedures are done on an "outpatient" basis. One more thing -- often a medical oncologist will suggest one undergo a course of chemotherapy after surgery. This is pretty standard so if you haven't done so yet, I'd obtain a consultation with a medical oncologist. Stay the course. Tom

I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate. Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it. In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled. My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.” This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom. Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here. Stay the course. ____________ Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU

Dirma, All the election drama caused me to miss your superb report on your husband's treatment. Tumors have shrunk considerably! What fantastic news! Do something special to celebrate. During my chemo and because of all the steroids I had to take before infusion and during the infusion, I'd get as hungry as a hibernating bear. Martha and I would go to Denny's and I'd order two Grand Slam breakfasts, one right after another! It was a little thing but it was our little celebration of life. I know you now understand that undergoing treatment often yields extra life. This is exactly the situation you've reported -- tumors on the decline. Don't forget to celebrate. Don't forget to live. Find joy in living. Stay the course. Tom

Monica, My oh my! I am speechless! I have no words. Well maybe one: JOY. That is not enough, so JOY, JOY, JOY, & JOY. Maybe that is still not enough so I'll add some more: awesome, spectacular, astounding, and how about just plain good stuff! Drive on and. Stay the course. Tom

Terry, What a great story! Go celebrate that life! Stay the course. Tom

Ray, Unfortunately, cancer is persistent. I had four recurrences in my treatment history so you need to persevere to overcome the persistence. I've read many good things about Opdivo and hope you have a good response. You should receive a scan soon after tomorrow's infusion. Hoping it is NED (no evidence of disease). Let us know the results so we can celebrate the good news! Palm Springs is a grand place to live. In my long years of treatment, I got so wrapped up in the anxiety of treatment that I forgot its purpose -- to extend life. So take advantage of all that Palm Springs has to offer during your treatment and enjoy your retirement and life. Many of us have suffered recurrence. Many of us live. If we can live, so can you. Stay the course. Tom

Melody, My heart goes out to you and your husband. Lung cancer is devastating and your husband's experience certainly validates the devastation. You asked if there is help for caregivers and with bills. Read here about the many resources available for caregivers. You will also note several charitable sources in this information that may be of help. Please also see potential financial assistance resources here, here, and here. Also, some towns and communities have faith-based charitable support available. Even if you are not a member of a religious congregation, ask someone who is. I've know many religious congregations who provide charitable assistance to cancer patients regardless of affiliation. Stay connected with us and after you investigate the suggested resources (click on the underlined words), let us know if you have further questions. Stay the course. Tom

Steven, Welcome! We share a CyberKnife experience but i have no experience with Opdivo nor immunotherapy. I've read great things about advances in immunotherapy and thought you might be interested in a synopsis of information here. Stay connected with us. Many newly diagnoses would benefit from revealing your experience with targeted treatment. So, let us in on your treatment experience if you feel inclined. Stay the course. Tom

Niels, I'm assuming your dad is going to receive External Beam Radiation Therapy. (EBRT) (I've linked a short explanation of this that may be useful). This type of radiation has been in use for many, many years. So, any reputable cancer treatment facility should be able to administer it with equal effect. There is a second type of radiation called Stereotactic Body Radiation Therapy (SBRT) [also called CyberKnife or Cyber Surgery] that is more sophisticated and administered as an alternative to surgery. If your dad is to receive this form of radiation, it is generally administered at a large cancer treatment center because of the sophisticated diagnostics and thoracic implants required prior to the procedure. Unlike EBRT, SBRT treatment consists of perhaps 3 - 15 minute sessions conducted over a period of 3 days. We can't endorse or recommend specific providers but I would recommend you search Google for insight into the reputation of both CTCA and Emory as cancer treatment facilities. Be mindful of the fact that EBRT is normally administered once per day for five-days-per-week for six weeks. Putting your dad into a car and driving 3 hours a day to receive EBRT, a very common treatment method, would be for me a bridge too far. Stay the course. Tom

Jose, Be very careful with supplements and chemotherapy. Make sure your mom's oncologist and oncology nurse know all the medication your mom is taking, including supplements, before she has her chemo. I didn't take any supplements during chemotherapy. Now, I only take Magnesium to address low Magnesium blood levels caused as a side effect by chemotherapy but I take the Magnesium as a result of my doctors instructions. Stay the course. Tom

Monica, To your questions about the frequency of PET scans during treatment, during my chemo I had a CT scan halfway through the infusion period and a PET after. That was when I was working and had a feature-rich health insurance policy. Now having graduated to medicare, I may not have a PET scan again in my life. But, after 3 years of treatment, my oncologist developed a sense about my lung cancer and that sense told him it would remain in my lung and if it were to re-occur, it would re-occur in my lung. So now I receive semi-annual CT scans to the chest prior to my oncology consultation. One thing to make clear, however: you'll see an oncologist regularly for the rest of your life. This is because our disease has a nasty habit of returning. Stay the course. Tom

Jose, Good advice by Donna and Susan that I completely endorse. Survival statistics are based upon dated information, some as old as 5 years ago. The statistician attempts to explain every cancer patient by applying an average or "mean" survival length projection. The fundamental problem with that approach is it fails to take into account that as individual patients, we all are different. We all have an individual reaction to treatment and that individual reaction cannot be expressed or accounted for in an "universal average" or an average that considers all diagnosed lung cancer patients in a given period. Donna's lived 19 years despite what was likely a very small (say single digit) probability of surviving 6 months. I'm 12.8 years when given about a 15% probability of surviving 5 years. And, Susan's advice about being your mother's advocate in her fight is spot on. Stay the course. Tom

Amazon Kindle Royalties Donated to LUNGevity.org During November:"I am not a doctor; indeed, I possess little medical knowledge. I am, however, a very experienced and long-tenured lung cancer patient. That gives me a unique perspective on the disease that kills more people­­—many times more—than any other type of cancer. I do not intend to fill this story with statistics. They are readily available from any number of reputable resources. I have a firm belief, however, that lung cancer research is poorly funded because lung cancer is considered a self-induced disease. We speak of those who suffer from or succumb to cancer as having engaged in battle; but in battle, one can choose to retreat. When diagnosed with cancer, the only choices are treatment or death. Statistically for lung cancer patients, the battle for life through treatment more often than not is lost. Treatment borders on barbaric torture that is endured repetitively, with uncertain outcomes and with death looming closely. I claim no medals for bravery. I was, and still am to some degree, overwhelmed by fear. While in active chemotherapy, the time between a diagnostic scan and results was a nightmare to endure; thus, my name for this experience: Scanziety. Several times, my treatment nearly killed me. I survived, not knowing how or why. My survival provides hope for those who suffer, particularly for the 230,000 Americans who will receive a lung cancer diagnosis this year. If I can survive, so can you." Stay the course. Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU

Niels, Normally, dare I use such a word with lung cancer, but normally a battery of diagnostic tests are done to stage lung cancer. By staging, I mean determining if there are areas of distant metastasis. In my case, I received a bone scan, brain scan and full chest and abdomen CT scan. But my diagnosis was in 2004, well before the invention of PET technology. Is a PET scan routinely performed in staging? I don't know, but that would a question for his doctors. Has surgery been ruled out? That is another good question for the doctors. If it has, then taxol and carboplatin chemotherapy with concurrent radiation is still a first line "standard of care" for lung cancer when surgery is not indicated. In my case, I had it before surgery. So, if surgery is ruled out, then Emory would offer the same treatment. Targeted therapy and when it is administered is less clear cut. Some targeted treatments have been elevated to a first line standard of care. Some require a first line treatment failure and are administered on a second line basis. This picture becomes clearer in your dad's case once the genetic testing of his adenocarcinoma is complete and if the discovered mutation shows susceptibility to a targeted treatment. This determination should be made after his biopsy material is re-examined for genetic mutations. So three questions for his doc: is a PET necessary, has surgery been ruled out, and if so, is my dad receiving the first line standard of care treatment? Stay the course. Tom

Lily, I am the patient; my wife was my caretaker. I hung on to life, but she would tell you there is no coping with lung cancer. And, this is so much about your feelings. You love your dad and to watch him go through this struggle is devastating. To not be able to influence the outcome is even more devastating. I wish I had a magic wand I could wave to absolve you of this maddening situation. I don't. So we are left with reality. You've told us the doctors have explained the challenge of prolonging life. If it were me, in your dad's shoes, I'd want to live out my life at home seeking whatever joy is possible by interacting with my family and friends. When I was facing an end state decision, we decided home hospice care would be our choice. I never reached that threshold but I will face that circumstance again and I will again choose home hospice care. We all face death, the only uncertainty is when. Lung cancer often puts a time stamp on when. So if the stamp is applied, the question remains: what does one do with the remaining life? I am choosing to live to the end, to try and find joy in every moment. My advice: help your dad live and enjoy every moment. Stay the course. Tom

AMay, Welcome here. I was diagnosed with state IIIA non small cell Squamous cell lung cancer. I had pre-surgical radiation and chemotherapy to shrink the tumor, then my right lung was surgically removed. My diagnosis was February 4, 2004. I'm still here. There are many of us still here. Strangely, the fact that your mom has adenocarcinoma is encouraging because of all the advances in targeted treatment for that form of our disease. But, the most important positive reinforcement I can give is, if I can live, so can your mom. Stay the course. Tom

I will donate all Scanziety Amazon Kindle Store sale royalties for the Month of November to LUNGevity.org to support much needed research. I wrote for the book for three reasons. First among them is “to raise a call to arms for funding lung cancer research.” Help me raise the call to arms! Read a book about surviving lung cancer and donate to sponsor research to find, fix and finish lung cancer. Stay the course. Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU

Darlene, Susan said it all. We all have a different path during diagnosis but now you are in the treatment path and if choosing treatment I believe you are choosing life. Do not put your life on hold just because you are receiving cancer treatment. Enjoy your grandchildren, look forward to the joyous holiday season starting with this evening's festivities. You've come to the right place for "shared experience". On characteristic of our experience is many of us are still posting years after diagnosis. That says if we can live, so can you. Tell us about your treatment experience if you feel comfortable. Let us know if you experience side-effects. Again, we've been through the side-effect journey and may have some practical suggestions to help you cope. Stay the course. Tom

Niels, This extends my post of last night. Here is the link for questions to ask medical staff during consultations. Obviously the discovery of lymph node involvement is not good. There is diagnostic technology that will confirm the presence and location of metastatic disease non-invasively. It is called a PET scan. Perhaps that might be the next diagnostic step because I think the doctors would want to confirm staging (Stage I or Stage III) before deciding on a treatment approach. So you might want to inquire about a PET scan at the consultation. I hoping the consultation yields a clear path forward in understand the extent of and treatment of you dad's lung cancer. Stay the course. Tom

Niels, First take a deep breath. Everything I know about biopsy tells me there is residual material from his first biopsy to determine if his adenocarcinoma will respond to targeted treatment. So your dad's doctor likely has enough raw material to genetically test his tumor. I'm answering on my cell phone and it is late. Tomorrow morning I'll expand my answer to suggest some questions for you to ask of your dad's doctor. In particular, the diagnosis of two different "types" of lung cancer seems very unusual. (I may have misunderstood your reference to two types of cells). For a good list of questions to ask, go to www.lungevity.org and read the reference material in the Lung Cancer 101 section. I'll extend my answer tomorrow morning. Good that you are going with him. If it is any consultation, my wife did all the probing and questioning during my diagnosis and treatment. I was too afraid to pose questions. You might consider a similar role. Stay the course. Tom

Meet Charlett Emilyrose Wilson, my first grandchild. Her parents, daughter Melissa and son-in-law Bill, are overjoyed. I am ecstatic! Proud would be a vast understatement! Charlett was born 12-years, 8-months, and 13-days after my diagnosis with NSCLC. I celebrate this joyful milestone in my life for but one reason. If I can live, so can you. Stay the course.

The other day, in conversation with a newly minted medical school graduate, he told me low-dose computed tomography (LDCT) was dangerous. Dangerous! If LDCT is dangerous, what is late discovery of lung cancer? He nearly fainted when I told him I had perhaps more than 40 CT scans in my treatment history, telling me I was a candidate for radiation induced cancer. It didn’t seem to register that I was a candidate for extinction by lung cancer. We are told the only effective way of treating our disease is early discovery. Few dispute this point. Why then would the Center for Medicare & Medicaid Services (CMS) want to reduce reimbursement for low-dose computed tomography (LDCT) screening by more than 40 percent? The Society of Thoracic Surgeons is concerned calling LDCT a “game changer in the battle against lung cancer.” Then I read: “Family physicians lack sufficient knowledge about recommendations for LDCT." Moreover, Doctors Patz and Chen, professors of radiology at Duke, say: “Not screening patients annually could save millions in health care costs and spare patients the radiation exposure and downstream effects of false positive screenings.” Something is very wrong. We have an effective tool for early discovery of life-threatening disease when not discovered early, and there is a campaign mounted against using it. CMS is a federal government-funded agency. In government programs there is a big difference between savings (cash you can put in the bank) and avoidance (cash spent elsewhere). CMS money is appropriated in broad categories. Once appropriated, fiscal managers move money around to address other needs or requirements. Appropriated federal funds are almost never returned to the Treasury. So the reduced funding for LDCT will be a bill payer for some other CMS program. No money is saved; it is spent on something else. Further, when making a valid cost avoidance argument, one must identify all cost. For example, the professors of radiology predicting savings for reduced screening do not identify the millions of dollars of increased cost for treating late-stage-diagnosed lung cancer. A cost avoided almost always results in cost added somewhere else, and without disclosing added burden, professionals are making very unprofessional arguments. Lastly, and most importantly, no one advocating reducing LDCT is considering the most important impact—suffering. There is a vast amount with late-stage diagnosis. Suffering affects more than the lung cancer survivor; it devastates families. While real and detrimental, suffering defies quantification in dollars. Several hundreds-of-thousands of us in the United States will suffer a late-stage lung cancer diagnosis this year. LDCT can eliminate some of this. In this light, it is hard to understand the assault against using LDCT to find, fix, and finish lung cancer! Stay the course.

B-Girl, I'll give this a try. I'd have him consult with a pulmonologist and have him take a lung function test. This will determine if inhalers will ease his congestion symptoms. He may find and inhaler will do the trick and give him enough mobility to avoid oxygen He may in fact need to be on oxygen therapy. In that case, there is a machine that can be rented called an oxygen generator and it is connected with a very long plastic tube like that used in hospitals. This will allow him mobility around the home. For trips outside, there are portable (thermos) sized O2 bottles he can use to acquire enough mobility for outings and trips to the store. First step, is the pulmonologist and of course ensure the doctor had a complete understanding of your husband's treatment history. Stay the course. Tom

Lisa, You got this. Read up and ask questions of your chemo nurse during next week's infusion. They should be able to answer your questions about type and stage easily. I've found chemo nurses to be a good resource. Stay the course. Tom

St. Michael, I can't begin to offer an explanation about EGFR mutation being unique to only the tumor and not other places in the body. Does your mother's practice have a patient portal? If so, you might generate an email question on this issue and submit it to her doctor through the practice portal. Stay the course. Tom