Tom Galli

Bruce, NED is NEAT!

Marie, Conventional radiation comes in like a lamb and ends like a lion. If a six week course of treatment (30 radiation treatments M-F), he may not feel anything the first 2 weeks. Symptoms like fatigue and skin burning will appear in his 3rd week of treatment. He'll need help getting to the last 2 weeks of treatment. Radiation sucked the energy out of me the last 2 weeks of treatment. Watch for his developing a dry, non productive cough and a sore throat. If he gets these symptoms, have his radiation oncologist prescribe a blend of cough medicines we lovingly refer to as "magic mouthwash". I lived on that and Halls lemon cough drops the last 2 weeks. Let us know how he is getting on and don't hesitate to ask further questions. Stay the course. Tom

Chery, Fortunately, I didn't have brain mets so I can't give you insight into symptoms. Stay the course. Tom

Migates, Welcome here. It sounds like you've got all the pieces of your Dad's treatment plan nailed down. Very happy that all the medical providers are cooperating and your nurse navigator is staying connected. Here is some information that will read you into aspects of your Dad's radiation and chemotherapy - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options-for-lung-cancer Stay connected here and feel free to ask questions on this forum. Stay the course. Tom

Cindy, Sounds like you've got all the right doctors engaged. But a lobectomy still sounds like a radical approach to me. Please keep in mind, I'm not a doctor and you should be guided by competent medical advice. It would be interesting to learn the opinion of the oncologist you are consulting. Stay the course. Tom

Diane, No. Lungevity, organizationally, doesn't suggest doctors or hospitals. We sponsor research and advocate for those with lung cancer. Here are the particulars: http://www.lungevity.org/about-us/memberships-alliances This site is a worldwide organization. I've encountered people from China, Cambodia, United Kingdom, Peru, and many of the 50 US states. If you want a prospective on lung cancer providers, tell us where you live in one of the forum topics and someone might have a recommendation. Stay the course. Tom

Cindy, This is indeed a strange circumstance. I've never heard of a biopsy that didn't result in a definitive finding of lung cancer or no lung cancer. The same applies to a Mediastinoscopy. These test are usually the gold standard for determining lung cancer. Clarification: your statement about the PET scan - "The same spots were highlighted." Normally, something identified on a PET scan is "lit up" compared to surrounding tissue. This indicates one of two possible findings. The "lit up" tissue is inflamed say from infection, or the tissue is experiencing metastatic cancer. Do you recall how the doctor described "highlighted" when explaining your PET results? It is odd that a doctor would want to remove your lung without compelling evidence of cancer. From your description, it does not appear you have compelling evidence. Which doctor told you to have your lobectomy "just to be safe" - a thoracic surgeon or your pulmonologist? Have you consulted with an oncologist? Please keep in mind the fact that I am not a doctor. Having said that, I think you should take all of your test results to another doctor and get a second opinion. I'd get it from a thoracic surgeon. Stay the course. Tom

Chihchang, Try contacting Genetech, the maker of Tarceva, and enrolling in their Financial Assistance program. Here is where you can find the information - http://www.tarceva.com/patient/support/financial-assistance Stay the course. Tom

Insaut, To your question: would the doctor be able to tell you details right after biopsy? Yes as to type and stage of cancer. When this is known, other questions will need to be answered and these are best answered in a face-to-face consultation. So I can't see how you can avoid another three hour drive. What are these questions? Can the cancer be treated? What are treatment options? What are projections of effectiveness of these treatments? Should the cancer be treated? Might palliative treatment be appropriate? Might hospice care be appropriate? All these and more should be explored at your consult and the doctor will explain and you should question to ensure you understand your choices and desires. Stay the course. Tom

I've read your post a dozen times trying to find the right words. There are no right words to characterize what you are going through, what you've gone through, what you have yet to encounter. I've been where you are and skirted on the edge of life. I don't presume to know how you feel, but I know what I felt. It is the hardest thing I've ever done. I remember a last Christmas gathering. Made it through that and then there was spring to look forward to. At some level, for several years, I just kept setting little milestones for me to experience and lived from event to event. I know you will make every day special. I pray you make that cruise, then another and go ahead and prove them wrong. Stay the course. Tom

Insaut, Welcome here. We've many who are survivors and may have useful information so feel free to ask questions. I'm not a doctor so keep that in mind as you read my answer. When an X-ray showed a large tumor in my right main-stem bronchus, doctors were suspicious that it was cancer. They ordered the same battery of testing on me that your step-dad is receiving. The most significant of these is a biopsy. It may not be the first test performed but it will allow the type of cancer to be learned. Here is information on lung cancer types: http://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer The other tests you describe: brain scan, bone scan, CT (pronounced cat) scan of chest and abdomen allow doctors to determine the stage of cancer. Here is information on cancer stages: http://www.lungevity.org/about-lung-cancer/lung-cancer-101/lung-cancer-staging Almost every lung cancer patient receives most if not all of the aforementioned tests. The results are important because they indicate how your step-dad's cancer can be treated. How do you support your step-dad without emotion? I have no idea. If he has cancer, it is a very serious disease and the diagnosis phase of my treatment was a very emotional time for my wife and I. Martha, my wife, prayed. I did also but spent a lot of time researching lung cancer. I felt some comfort learning about the disease and treatment options. Be careful, however, of too much gloom and doom. Survival statistics don't paint a rosy picture but I'm alive after more than 11 years after diagnosis. Dr. Stephen Jay Gould was diagnosed with lung cancer and wrote an essay about the importance of understanding the limitation of statistics. Here is a website where you can listen to his essay - Stay the course. Tom

Cindy, Any information on your October 9th scan? Did those little spots disappear? Stay the course. Tom

Christine, Wonderful that you were able to visit. Families are so very important to fighting cancer. Happy also about your dad's attitude. Can your sister scan his test reports to you so you can stay connected to treatment and results? Of primary interest is the radiology report on all his scans. Doctors will willingly share these reports with family members provided the patient (your dad) signs a HIPPA release. Stay the course. Tom

Dave, I'm not a doctor so act on his or her recommendation. I found a Cleveland Clinic citation that might put your mind at ease as concerns the reported 4 mm nodules - here: https://my.clevelandclinic.org/health/diseases_conditions/hic_Pulmonary_Nodules. Note the concern starts at 4 cm and yours are much smaller than the concern level. I am a lung cancer survivor and my scan reports are full of nodule observations. The major challenge for my radiologist and oncologist is correlating previous scans to current results. Complexity is introduced because sometimes the nodules grow and or recede scan-to-scan. All of them for the last 8 years have not been cancer! Stay the course. Tom

Joel, We are all tired about talking about cancer, especially lung cancer. If you confine your focus to treatments and cures, then you will shift from tired of talking to depression. The lung cancer cure rate statistically is sadly very low, particularly for metastatic lung cancer. So much so, that most everyone I know and established cancer treatment organizations gave up using the "C" word years ago. Our battle is to achieve "no evidence of disease" NED and for me it has been an 11 plus year fight. Now, unfortunately you've joined our lung cancer survivor club. The question is how do you fight. First, and thankfully, you have a choice: naturopathic or conventional treatments. I've known many that chose the former but while they avoided the dreadful side effects of conventional treatment ("slash, poison and burn"), none are alive today. Of those choosing conventional methods, some are alive. I'm not citing any medical authority to bolster this data. Just my 11 plus year experience. So, your diagnosis, regardless of treatment alternatives, is life threatening - lung cancer is a disease of death! Your treatment alternatives, my experience, yield no chance of extended life (naturopathic) or some chance of extended life (conventional). This is your decision space, and I respect your right to choose. Your PET results suggest Stage 4b non small cell Adenocarcinoma lung cancer. There are two conventional treatment alternatives: chemotherapy and targeted genetic based therapy. Only Adenocarcinoma benefits from new targeted genetic therapies. So in a macabre sense, you are lucky to have Adenocarcinoma! Here is some information about targeted therapies - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy Regardless of your treatment method, you are most welcome here. Feel free to ask questions. We have a network of long tenured lung cancer survivors who are happy to provide their insight. Stay the course. Tom

Lee, For me it became fundamental: treatment or death. Choosing treatment meant choosing life. I also realized I had a choice about my attitude toward life and treatment. It took me awhile but I found a way to enjoy myself during treatment. Not everyday, but most days. I looked for little things to enjoy throughout each day. As for God, I prayed to be satisfied with His will. I tried to do my part and relied on God to do His part. Looking back, my attitude about treatment and outcomes was essential. Stay the course. Tom

Lee, You have got a lot going on! Please do discuss your ability to continue working while having radiation and chemotherapy with your physician. I was unable to work during my first line [first sequence of treatment] radiation and chemotherapy primarily because the radiation sapped all the energy from me. I was able to work during second line [second sequence] and third line [third sequence] chemotherapy but needed to take a couple of days off during the middle week of my three week cycle. But reaction to radiation and chemotherapy is different from person to person. Some people breeze through but others do not. You won't likely know how you'll do until you enter into treatment. As for ideas, here are some: 1. Make arrangements to have someone take you to your first several treatments. You may not feel well enough to drive after your treatment. 2. Wear warm clothes to your sessions. For some reason, they keep radiation and infusion treatment areas very cold. 3. Bring something to read or a smartphone or tablet with internet capability. Most treatment facilities have WIFI and reading and internet connection help to pass the time. 4. The chemo nurse will go through all of your personal history before your first infusion. Ensure you reveal all the medication you are taking and have a complete listing of all of the things you are allergic to. In fact, so many people will ask for medications you are taking, that I find it helpful to keep mine as a "note" on my smartphone. I just bring up the note and hand it to the nurse. If you don't have a smartphone, write or type a list of your medications and keep it in your purse. 5. Depending on the type of chemotherapy you'll receive, you may be prescribed a pre-treatment course of steroids. These may make you very hungry so if the session extends over the lunch hour, bring a substantial packed lunch. If not, bring snacks because you will be hungry. You'll have many more questions and this is the place to ask them. Here is a good source of information about lung cancer that you may find helpful - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 Stay the course. Tom

Christine, I am encourage by your father's optimism about his treatment. I've found attitude is so very important to my successful treatment outcome. While there are not statistically relevant studies that relate patient attitude to survival, common sense suggests that people who cooperate and show interest in their treatment and outcomes are likely to fare better than those who don't. Who knows? If your father presents himself as an informed, interested and tractable patient, his medical professionals might be inspired to go an extra step to find a combination of therapies that lead to extended life. Stay the course. Tom

Christine, It goes without saying, this was not the news you wanted to receive. That said, there is very promising news about immunotherapy emerging for certain types of non small cell lung cancer. I hope your dad's disease is within the immunotherapy treatment window. Chemotherapy close to home is a good choice. Looking back on my chemotherapy experience, the small clinical setting for me was preferred over the large hospital treatment center. First line treatment could be an 18 to 27 week cycle and the smaller setting allowed me to get to know the nurses and staff. If your dad is experiencing difficulty with vein access, ask about the possibility of using a port. Vein access for my first line treatment was a challenge. There is hope. Almost eleven years ago I had nothing but chemotherapy available to treat my disease. Stay the course. Tom

Surviving lung cancer is like running a marathon in a hurricane. To survive one needs to become resilient. How? Here is an approach. 1. Develop firm beliefs 2. Find meaning in the mayhem of your survivor experience 3. Acquire a positive attitude 4. Learn from the resilient among us 5. Face things that scare you 6. Get support when trouble calls 7. Be open to new ideas; be a learner 8. Exercise your mind and body 9. Don't worry about the past 10. Recognize and rely on your unique strengths Recall while in treatment, despite the many adverse side effects, the primary effect of treatment is extended life. Do something meaningful with your gift of life. Stay the course. Tom

Welcome here. Your mother's care plan during chemo is difficult to project at this juncture. Different chemo recipes cause different side effects, and of course, side effects vary from person to person even given the same type and dosage of chemotherapy. If infused, the drugs are administered over a period of time - typical is a 3-week cycle. In my case, different side effects occurred at different times during this cycle. For example, nausea set in two days after infusion, while joint paint occurred 4 days after infusion and etc. Thankfully, this pattern was repetitive in me and after my wife started noting the side effect days on the calendar, we could forward project my care needs. In summary, I needed the most assistance for about a 5-day period starting two days after each infusion. There are now oral chemotherapy drugs that may be administered every day and concurrent with infused chemotherapy. These might alter the aforementioned. Your mom may also receive radiation in her spine to alleviate her pain symptoms and radiation may be concurrent with chemo. Radiation brings its own unique side effects to bear. In my case irritated, sunburn-like, skin and decreasing energy levels as treatment progressed. Here is some information on chemotherapy side effects to help you read in - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/chemotherapy Stay the course. Tom

I was asked a simple question the other day: "how did you choose your oncologist?" My answer, after an embarrassing pause, was I didn't. When diagnosed, I had no idea what an oncologist was. Likely, I couldn't have spelled the word. My exposure to medicine was limited to visits with my general practitioner where we'd discuss investment opportunities, automobiles, calculating hydraulic head pressure on pumps, almost anything but medicine. He is more friend than physician. The evening after hospital admission for coughing up blood, perhaps the most frightening day of my life, my general practitioner said he'd selected the specialists to battle my lung cancer. He noticed my puzzled expression when he said oncologist and clarified with "cancer doctor." In this world of medical complexity, the role of general practitioner is often under appreciated. His tenure in practice gives insight into the world of medical specialities; he knows the best from the rest. He also knows my temperament, medical history, and diagnosis complexity. Merging insight and patient knowledge yielded the team that saved my life. Mine was an accidental solution. On reflection, my answer should have been: cultivate a good relationship with your general practitioner.

Your dad may be between the rock and hard place but it is your job to move the rock. Read everything you can about lung cancer. Start here - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 then Google the specifics. Write down his and your questions. Attend each consultation and ensure your questions are answered. Take notes. Ensure the doctor explains medical terms you don't understand. You've got decisions to make and they need to be informed decisions. If you are comfortable, let us know what the doctor tells you. Someone here will have insight and information based on the doctor's information. Stay the course. Tom

Roxanne - any update. Good news I hope!

Michelle - how is your mother doing?