Tom Galli

I'm a Tricare for Life guy. When I had problems finding practitioners, I went in person to their practice office. In discussion with mostly the practice administrator, I'd ask if it was the practice and practitioner's policy to discriminate against retired service members, people who'd dedicated their lives to ensure their freedom. I would follow that up with asking if they wanted to read about their practice in a letter to editor discussing how the callous and ungrateful medical profession treats its retired armed service population. One practitioner agreed to comp my wife's treatments till he could get his Tricare status established. Three others I visited also became providers. I think the key is, to show up in person. Stay the course. Tom

Laralyn, I join Donna in welcoming you to our forum. This is the place to ask questions about lung cancer and many here will be able to help. Since you were diagnosed and successfully treated in 2012, I'll venture you know a thing or two about cancer treatment. We share a diagnosis - NSCLC Squamous cell. I also had Taxol and Carboplatin, in fact 18 infusions. There were few chemo alternatives available and Taxol Carboplatin kept knocking back my tumors so my oncologist kept using it. Unfortunately, I've acquired what is known as "Taxol Toes" or a painful burning sensation in my feet and particularly my toes. For some, this is a short lived side effect but I had so much Taxol it still persists 12 years later. I echo Donna by asking to let us know how you are doing with your treatment. Questions? Ask away. Stay the course. Tom

Kelly Marie, Welcome here! Choosing to be positive is so very important. I discovered this while reading a blog 8 years ago and it was life saving for me. A radiologist diagnosed at stage IV was in treatment enduring the same side effects as I did but he was swimming laps everyday, involved with his children, and enjoying life. I was depressed and bitching and moaning about side effects. Then I thought, what's the difference here. He's enjoying himself and I'm not. From that day, I realized I could change my attitude towards treatment and life. Just a simple decision was all that was required. I now believe if one chooses treatment, one is choosing life and one can choose to enjoy the life treatment provides. Good outcomes come from positive attitude. I had Tarceva but in the early days before doctors knew why it worked. Testing for genetic mutations was not discovered for years after Tarceva was FDA approved. Doctors now know that Tarceva targets the EGFR mutation that is present in some subtypes of NSCLC. But, it wasn't present in my type. Nevertheless, I've read very good reports for folks who take it when their tumor has the EGFR mutation. Here is Dr. Sequist's video on lung cancer mutations posted in Lungevity's Lung Cancer In the News section of our forum. Stay the course. Tom

Alison, Keep riding that good news train! With results like yours, who cares about side effects (well not really but you know what I mean...)! Stay the course. Tom

Welcome here Alison. I can't comment on Iressa target therapy because it is new science and I am an old survivor. Both incidentally are good developments. But the former shines because its yielded treatments that seem to produce dramatic results on folks diagnosed with late stage disease. That is indeed wonderful. I hope you keep experiencing positive results from your targeted therapy treatment. Stay the course. Tom

Wonderful news. Tarceva, I've read, works remarkably well when the adenocarcinoma type of NSCLC displays an EGFR mutation. I had Tarceva in the 2005 timeframe before the days of genetic testing for tumor mutations. In that time, doctors knew Tarceva worked in a small percentage of NSCLC patients but didn't know why it worked. Indeed, subsequent studies revealed Tarceva does not work for Squamous cell carcinoma, my diagnosis. I experienced quite a bit of lower GI problems along with very bad face, head and neck acne. So it appears your mother is having a positive response from Tarceva with minimal side effects. I hope this continues. Stay the course. Tom

Starkey, I once feared I'd be dependent on oxygen also. I had a home 02 generator for a time after my lung was removed, then once again after my second line chemotherapy. I used the rented machine for a short time and as I recovered, my 02 levels climbed and stayed constant above 92 percent. So I went off oxygen. I've found this pattern consistent with a number of lung cancer survivors. But, some need it for extended periods, indeed for life. Do I understand you are receiving both chemo and radiation after surgery? Post surgical chemo is expected but conventional radiation is not. Did they find additional metastatic disease during your surgery? Stay connected with us. You'll have many questions and we might provide useful advice and insight. Stay the course. Tom

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