Tom Galli

I had about a 5 month course of Tarceva in concert with Taxol Carboplatin. Then, Tarceva was covered but my copay amounted to about $600 per month. Insurance covered $2,400 of that cost. I'm not sure my adverse reactions are typical because I also suffered side effects with Taxol Carboplatin. But the new side effects I believe stemmed from Tarceva include acute face, head and neck acne-like eruptions and extreme gastrointestinal problems. Tarceva had no effect against my tumor and I now know why. I had squamous cell and Tarceva only works on a subset of adenocarcinoma patients. I took the Tarceva at a time before genetic testing was done on biopsied lung cancer tissue. I have no experience with Xalkori. Stay the course. Tom

Tess, We never tire of hearing about scans, treatment and side effects. We understand what you are going through because we've been there and done that. Wonderful to hear about Xalkori's affect on your ALK translocation. Molecular profiling is a huge improvement for some of us in the lung cancer community and it looks like you may be one of the fortunate few. Look forward to meeting you at the DC Hope Summit. Stay the course. Tom

Michele, Lima Ohio - in my younger days, I commanded the US Army tank plant in Lima. I know your hometown well. I've known so many lung cancer patients that have an appetite problem over the years. If fact, this problem extends somewhat to all cancer patients. Chemotherapy is so disruptive of the gastrointestinal system that many suffer an eating disorder. Perhaps better said as an "eating in order" because nutrition is essential to recovery. Consultation with your dad's medical team is of course necessary. You may also consult a registered dietitian. I am fortunate enough to have married one. When I suffered, wife Martha devised a recipe that exercised every tastebud in my system. Here are the ingredients: 2 cups of whole milk, 2 cups of heavy cream, 1 cup of sugar, 1 cup of protein powder, 1/2 teaspoon of salt, 1 teaspoon of vanilla extract (the good stuff), 1 teaspoon of peppermint extract, 1 cup (or more) of crushed Oreo Brand cookies. All this goes into an ice cream machine and presto, I was (am) appetite cured! Her theory is one needs to kick start the appetite engine and ice cream for me was just the trick. Try ice cream if he relishes it. Try anything he relishes. Stay the course. Tom

Katie, Thank you for telling us good news. We long to hear it but it is very rare indeed on a lung cancer survivor site. Molecular Profiling is a fantastic new scientific discovery to identify genetic mutations in cancer cells and attack them with targeted drugs that disrupt the mutation, thus all cancer cells throughout the body. I celebrate your husband's success with Tarceva. I firmly hope the political establishment takes note of the fact that research and new discoveries can have a dramatic improvement on the lives of lung cancer survivors. Unfortunately, we have this bias of self inducement hovering over our heads. Celebrate your husbands treatment success for it brings hope in so many ways to our community. It may also serve as a spur to move the political and societal road blocks that limit effective research from my disease that affects and kills more people than any other. Welcome here. I truly hope your husband benefits to the extent that treatment produces significant, enjoyable and productive life after lung cancer. Stay the course. Tom

Christine, Keep suggesting. I've found that a woman's repetition is far more powerful than a man's ego. Persist but avoid insisting. He'll eventually see the light. As to #4, I don't have a clue. Stay the course. Tom

Beth, Wow have I experienced this problem. When I get a normal cold, it lasts forever going to my chest and I have the same problems your dad has. Here is what I do. Sleep in an elevated position using a bed wedge pillow or sometimes in my reclining chair to ensure I'm elevated enough. Use a CPAP machine to force air into my lungs, sometimes on concert with oxygen when things get bad. Steam up in the shower after taking my morning inhaler (this steam seems to clean our most of the gunk). Keep a humidifier in my bedroom. Finally, I rest and restrict my getting out of bed. I've been dealing with these nightmare chest congestion conditions for nearly 12 years and sometimes I'm down for more than a month. Stay the course. Tom

Pam, New mets is never welcome news. Has his biopsy tissue been checked for a molecular profile. Adenocarcinoma is one of the types of NSCLC that benefits from new genetically focused treatments. This video has the details - If you can't address the video directly from this link, copy it into the search engine web address and hit return. Ensure you ask your husband's oncologist if his form of adenocaecinoma is treatable from target therapy. Stay the course. Tom

Eliz, Denzie's advice is right on the mark. A biopsy (likely what your doctors are calling a tissue correlation) will answer the cancer question. I'm not from the Philippines but I did a little on line research dealing with payment for medical care. Here is a website I'd consult: http://www.philcancer.org.ph/support/agencies-providing-patient-support/ You'll have many questions after your review the information Cindy suggests. Ask away. Let me know if you want me to look around for more financial resources that might defray the cost of treatment in the Philippines. Stay the course. Tom

Pugs, I had Tarceva also but in 2005 before they realized it only work for certain types of NSCLC. Mine was not the type. When it works, I hear of dramatic results and hope yours are fantastic. You know some lung cancer survivors now! Stay the course. Tom

Maral, Sorry to hear about your father's pain. Do I correctly understand he's had radiation and is it to his spine? A pain journal is a great idea. It will help the oncologist understand the extent and intensity and prescribe the appropriate medication. I once left my oncologist office with several sheets of prescriptions for pain medication that included stuff I was actually afraid to take. But, he told me that if I am suffering active pain, there is little danger the addictive nature of narcotics will affect me. It was something to do with the narcotic blocking the nerves transmitting pain and therefore not acting on other portions of my nervous system and brain function. Ensure he tells his oncologist about depression. If it deepens, he should see a general practitioner and discuss remedies. Stay the course. Tom

Karrenmarie, Welcome here. I also had a Cyber Knife years ago on a tumor in my left lung. Certainly, your news of involvement in the Hilar region is not good. You know the drill having had a Cyber Knife. You need to get mentally prepared to lock and load and battle your disease. I can sense your disappointment and frustration. Cancer is persistent; lung cancer especially so. I'm sure your treatment team is teeing up alternatives to counter the invasion. I've found, I needed to beat my disease mentally as well as medically. Despite many treatment failures, I started to believe my treatment would arrest my disease. I therefore hold that one's attitude toward treatment and outcomes is essential. Please embrace a positive outlook and steel yourself to your forthcoming treatments. I look forward to hearing news in the future. Stay the course. Tom

Sio, You've had more than enough experience with cancer. I've not had VATS surgery but a conventional pneumonectomy that is far more extensive and was discharged 4 days after surgery. So, from what I know about VATS, you should be in reasonable shape to stand a 3 hour car ride to your PET scan 10 days after surgery. The PET scan is an infusion of radiated glucose, followed by about an hour of quiet time, then about a 20 minute scan. If you are claustrophobic, ask your physician for a script for Xanax to relax you during the relatively long scan. Be resolute in your effort to cease smoking. I knew someone who continued to smoke during treatment and it caused unnecessary pain and complications. Get help with cessation if you feel the pull of nicotine. As Donna said, you'll know the type of cancer after biopsy of the VATS removed tissue. The PET will stage you and hopefully, no uptake indications will appear. But, your oncologist may recommend post surgical chemo just in case. I hope your surgery and scan go smoothly. Stay connected with us and feel free to ask questions. Stay the course. Tom

Mollyann, Welcome here. Lung cancer is a frightening disease. But since you are in line for surgery, you may be lucky they found it early enough that your cancer is treatable through surgery. You'll likely want to read about your disease and here is a good source: http://www.lungevity.org/about-lung-cancer/lung-cancer-101 Hope is important to search for but I've found a positive attitude as to treatment and outcomes is also vital in your battle of our disease. You will have a life after treatment. It will be a different life but it can be very fulfilling and rewarding. Ask your practitioners if they know of a cancer support group nearby where you can attend and express your concerns about treatment and side effects. Ensure your husband accompanies you to each doctor consultation and write down your questions before your consultation so you can ensure they are addressed. Four ears are always better than two in listening to an oncologist or surgeon explanations and treatment alternatives. You'll have many questions. This is a good place to ask. Stay the course. Tom

Happy New Year also. We celebrated Christmas on a cruise ship during a big family reunion. Just docked yesterday so I'm a late responder also.

TC, The nickname for your post surgical chemo is "dust up". It is designed to kill cells that may have been in your bloodstream before your surgery. It is an important component of treatment. Surgical complications prohibited my dust up chemo and tumors appeared in my left lung after my right was removed. Treating cancer is a marathon not a sprint. After your chemo, you'll continue to have diagnostics and oncology follow ups for perhaps the rest of your life. I am nearly a 12 year survivor of NSC Squamous Cell lung cancer and have a scan and oncology apt in late January. And I still suffer from "scanziety" that period of high uncertainty and anxiety from scan to results revealed consult. Settle in for the long haul. You'll be fine. Stay the course. Tom

Good News!

Maral, What is a reasonable wait time before treatment starts? Tomorrow is not too soon but realistically, about a month was consistent with my experience. Mine was a US healthcare experience and it took about a month to get all the testing and radiation shield complete before I started my first line treatment process. But in your discussion with the schedulers, I'd mention his not eating and pain symptoms. Stay the course. Tom

Christine, Glad the mutation was identified. I took Tarceva before they had genetic marker testing. For about 15 to 20-percent of those on Tarceva, outcomes were fantastic. But for the remainder, including me, it didn't work. But now they know why and it is the EFGR mutation that Tarceva targets. So this could be wonderful news! Here's to hoping he has a wonderful outcome during a joyous part of the year! Stay the course. Tom

Maral, Welcome here. You've got a lot on your plate! Denzie and Cindy have suggested informative links to read into your father's lung cancer. When they biopsy his tumor, ensure they check for the possibility of mutations. See this video that explains the importance of mutations and the emerging treatments that have been shown to be very effective in treating non small cell lung cancer patients - Stay connected with us. There are many here that are long tenured lung cancer survivors and we are here to help. Stay the course. Tom

Donna, It is my experience that the word normal almost never applies to lung cancer. A medical oncologist is the quarterback of your treatment team but as test results reveal the type and stage of your lung cancer, others will likely joint the fight. Have you had a biopsy yet? Lung cancer comes in different types, and importantly, a treatment plan (including surgery) cannot be devised until your type and stage of lung cancer is known. Here is a link to get you read in to your disease. Pay particular attention to your doctor's explanation of stage and type at your next consult - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 As for trials, I would think the type and sage would need to be determined before a decision could be made to include you in one. At my treatment center, there was always a discussion about trials and literature was available to read about them. But, I would think it premature at this time to mention a trial. You'll have many questions and feel free to ask away. Many here have been where you are today, and guess what? We're still here! Stay the course. Tom

My reading suggests that shingles is a phenomena that stems from the patient's childhood episode, not contact with someone currently exposed. I have no direct experience however. I did get a shingles vaccination but well after my treatment ended. I would pose a specific question to his oncologist and weight heavily the opinion of the treating oncologist. Stay the course. Tom

Exactly my recipe of disease. Did the biopsy include a genetic mutation type? If it did not, then you can have the pathologist test the sample for genetic mutation (pathology samples are always kept). This is important because of new treatment methods that are very successful in treating NSC Squamous cell LC. Here is the youtube cite for Dr. Lecia Sequist's video on advances in biomarker profiling for lung cancer - Okay upper lobe left lung tumor location, proximity to trachea and radiation will yield challenges in radiation treatment. I had those also. Pain may increase as may swallowing difficulty. It sounds like the radio oncologist is going to incrementally treat the main tumor to shrink it stages to minimize radiation induced side effects. Get a prescription for "magic mouthwash" or that elixir given to radiation patients to relive irritated throat and dry cough. Have some chloraseptic throat spray on hand. During my radiation, I lived on Halls lemon drop cough drops. I don't know if he is going to have adjunct chemotherapy concurrent with radiation or full strength infusions. Normally, during first line treatment, radiation is the primary therapy and chemo is secondary. When this is the case, the chemo is referred to as adjunct therapy. If adjunct, then it is typically given at a lower strength then when administered alone. Ask your doctor to qualify if the taxol - carboplatin combination therapy is full strength or adjunct strength. If adjunct, expect fewer side effects from chemo. Here is a primmer on chemo side effects that might be interesting reading - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/chemotherapy As for survival statistics, leave those for later consideration. Your dad is choosing treatment and therefore life. Attitude, I believe is important to a successful outcome. He and you need to believe you are going to have a successful outcome and that success yields far longer life than 6 to 8 months. Stay the course. Tom

Berry, Not good news about the radiologist errors. That kind of error would really "freak" me out! Check your health insurance policy parameters. Years ago, I was told my policy only allowed an oncologist to order PET scans. I really hope it turns out to be nothing of concern. Stay the course. Tom

This is superb!

Berry, I can only answer based on my experience. In the course of many CTs, radiologists reported the growth and reduction of many "nodules" in my lung and other organs. This phenomena was especially acute if the interpreting radiologist was reviewing my scan for the first time. Then all kinds of nodules were reported in lungs, liver and other organs. A new radiologist interpretation was a nightmare to my oncologist who needed to wade through previous reports to separate the wheat (this is new) from the chaff (seen this before). Also an issue was my general unfamiliarity with metric measurements. I'd freak out on learning a previously discovered nodule of 2 mm grew to 4.6 mm before I converted these measurements to inches. Then I'd realize how small these nodules really were - 2 mm = .0787 inches; 4.6 mm = .181 inches. Neither of these dimensions can be easily discerned on a standard ruler. Yes I've had this experience. Yes catching lung cancer early is essential. If this pattern continues, I see a PET-CT as a future test. That will characterize the nodule as cancer or something else. Stay the course. Tom