Tom Galli

After surgery, tumors appeared in my left (remaining) lung and chemotherapy (I received both first and second line) was the only available tool. But, after second line failure, my oncologist learned cyber knife procedures used to treat brain tumors were being performed on a trial basis for certain types of lung cancer tumors. That bit of knowledge and his connections to get me into that trial program saved my life. I'm a Texan and well acquainted with the reputation of MD Anderson. I know many who were treated successfully and knew many who were not. The advantage of a large cancer research hospital is availability of trials or experimental procedures that might make a difference. What was (is) most important to me is the opinion of my medical oncologist. He practices in a small but complete treatment center but is well acquainted with emerging trials and methods of treatment. Likely, your Dad's first treatments will be what is called a "standard of care." That means all patients with the same type and stage of cancer receive the same (or nearly the same) chemotherapy routine. The PET and MRI along with the biopsy report should yield a definitive type and stage diagnosis. So a good question to ask his Chicago medical oncologist after scan results are revealed is what is the standard of care for my Dad's disease. He'll likely get that standard care prescription in Chicago or MD Anderson. If he doesn't respond to the standard of care, you might consider second line treatment at a large cancer research hospital. I failed second line also but the knowledge and intuition of my oncologist saved my life. I believe the skill of my medical oncologist was the most important factor in arresting my disease. Most importantly, please do not believe anyone advertising a miracle cure or significantly improved cure rates. Stay the course. Tom

It is so hard when parents pass or encounter complex health problems. From what you posted, I conclude late stage diagnosed lung cancer with metastasis. PET results should show the extent of metastasis and doctors can then formulate a treatment plan. Jefferson University Hospital (U Penn) has a stellar reputation, but again from the information you shared, the diagnosis is hard to dispute. I'd wait until you learn the current medical team's treatment plan and if you feel it is inadequate, then seek the second opinion on treatment. Strap in and be patient because treatment may not be pleasant and results may not show timely improvement. My disease took 3 years of near constant treatment to arrest and to this day, I'm not sure which was more difficult to endure, the treatment or the disease. But treatment did yield extended life - more than 11 years for me. Note I said extend life not cure. The objective of treatment is to achieve a no evidence of disease (NED) state. In my oncology consult in July, my doctor still declined to use the cure word. You can be a real help to your Dad by reading into the disease at this site (http://www.lungevity.org/) so you can explain all the jargon and medical terminology you'll encounter. As an example: non small cell, squamous cell, carcinoma. This forum is a good place to ask questions and you'll have many. Stay the course. Tom

From the period of her treatment - 11 months - sounds like she is being administered Alimta as maintenance therapy (a good thing). I surfed around a bit and wasn't able to locate peripheral neuropathy or paralysis as a Alimta side-effect. I wonder if she had Alimta in combination with another chemotherapy drug in her first line treatment. Taxol (Paclitaxel) or Cisplatin often used in combination with Alimta often have peripheral neuropathy side effects. If she had this, her current problem might be related to her first line treatment. But hopefully her physicians would deduce this. Wonderful news about the clear scans! Stay the course. Tom

Ruby, Sounds like early detection. Is follow-up chemotherapy scheduled? In most surgical cases it is unless doctors are very sure of complete resection. That indeed may be the case. If so, what is next are scheduled scans and oncology consultations to ensure no metastasis and to keep an eye on the nodule you report as non cancerous. Are you being seen by a medical oncologist? I ask because some lung cancer patients go from pulmonary specialists to thoracic surgeon without consulting a medical oncologist. Now that the surgery is complete, I'd consult with a medical oncologist if not already engaged. Stay the course. Tom

Absolutely it has been devastating. From numbness to stage 4 lung cancer found by a neurologist! Radiation side effects depend on how long the treatment is administered and for me ranged from skin burns to extreme fatigue in the final weeks of a five-day-per week, six-week cycle of treatment. Something to look forward to is a rapid elimination of spinal pain and he should be sleeping well soon. Assume he's had a needle biopsy and are awaiting a determination on the type of lung cancer so the right chemotherapy can be chosen. Typing by molecular markers was not done when I was diagnosed more than 11 years ago and it is very helpful in choosing the right chemotherapy to treat his metastatic disease. There is a wealth of information on lung cancer. Perhaps you've read the material at Lung Cancer 101 here - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 No doubt you'll have questions as you discover more about his disease. This is the place to ask. Stay the course. Tom

I paint a toenail red for each year I survive late stage non small cell, squamous cell, lung cancer. This year, my wife needed to join me in celebrating 11 years. Diagnosed on February 4, 2004, at times in my treatment, there was only hope. There is always hope. If I can survive, so can your Dad.

Mary, You are so right about radon. Invisible, colorless, odorless and in some places in the country radon is present in concentrations high enough to cause lung cancer. Is your bone pain after infusion as a side effect? If so, I had that side effect with taxol carboplatin. Fortunately it is not common but for you and I, it is (was) a real problem. My chemo nurse told me to note the time of onset of pain after infusion and start my narcotic pain meds about an hour before that time. This worked for me. Tylenol or other OTC meds didn't do a thing and then there was the discomfort occasionally if adding the bone pain caused by Neulasta. I hope the chemotherapy arrests your disease. Stay connected and... Stay the course. Tom

Don't know. Never tried to print. I'll look when I get to my computer.

Amy, I pray and hope this alternative works for you. Stay the course. Tom

Mary, I had a total of 18 infusions of taxol carboplatin in the course of my lung cancer treatment. The first six were understrength "adjunct therapy" received concurrently with conventional radiation. During this course, I only lost my gray hair! The before and after photo showed me looking years younger. After my disease metastasized, I got the full strength taxol carboplatin dose. I lost all hair (including eyebrows) two weeks after my first infusion. It grew back after each 6-cycle infusion treatment was complete and was a temporary inconvenience. I do know how important hair is to the ladies so perhaps consider a wig. But, these days I see a lot of women using a scarf and displaying their temporary baldness as a badge of courage. Stay the course. Tom

Sylvia, A party - grand idea! Celebrate every time you can. Victories are few and therefore sweet indeed. I had, at the time, experimental cyber knife treatment. It was FDA approved for brain tumors, but I was one of the first approved lung cancer patients for the trial (experimental procedure) or whatever they called it. I had that strange payment situation also. There was a lot insurance didn't cover and had to write several large check but it was worth it because it finally fried the tumor that resisted 12 infusions of taxol carboplatin. So it saved my life. Cost was a minor inconvenience by that measure. I hope things settle to a dull roar soon. Stay the course. Tom

Amy, My experience suggests choosing doctors based upon recommendations from doctors. I pushed back when my GP referred me to a thoracic surgeon at a large DFW metroplex hospital. I thought the small local local hospital would be more convenient. My naiveness about cancer was evident in those early days. He told me I had a complex surgical case and should have it performed at a place that does thousands of such cases a year. He also explained that surgery is a team activity. He was right. So if there is a well known thoracic surgeon experienced in cancer resections at UVA, I'd be making the drive. My experience also suggests a medical oncologist is normally well connected with surgeons of all disciplines, and maybe more importantly, radiation oncologists who use modern radiation therapy en lieu of surgery. I'd heavily weigh the medical oncologist's opinion before I'd choose a treatment plan. For lung cancer, medical oncologists are the quarterback of the treatment team. Stay connected. I pray for a good outcome. Tom

Amy, I hate cancer also! As a breast cancer survivor, you'll know most of the drill. Unfortunately, you'll need to wait for biopsy results to plot a treatment path. Hopefully the cancer is confined to the upper lobe nodule but the lymph node description would concern me. Perhaps minimally invasive surgery is an option. If surgery is performed, she'll normally receive after surgery chemotherapy treatments. Drugs used will likely be determined by biopsy results. If surgery is not an option, perhaps cyber knife radiation could be used to treat the small tumor and problem lymph nodes if diseased. Advice - ensure someone accompanies your mom on all doctor consultations to ask questions and take notes. My bronchoscopies caused a very sore throat so ensure your mom gets a script for the magic cough medicine and buy some Chloraseptic throat spray. Do you know if the pulmonologist is planning to use a flexible or rigid bronchoscope? Deeper anesthesia was required for me with the rigid scope. I trust she is seeing a medical oncologist. You might be looking for a thoracic surgeon between now and the biopsy. Stay connected and let us know what is going on. Tom

Leslie, I've been pondering your post for more than 3 days trying to craft an answer that would console. I've faced a death projection but survived late stage non small cell lung cancer for more than 11 years. The projection resolves to an unsettling question: is chemotherapy curative when administered to treat metastatic (numerous sites in the body) disease? It is hard to face the objective answer to that question and find hope. But a survival projection is statistically derived and implicit in the science of Statistics is the search for a central tendency, a number, a value, that will describe the most likely outcome from thousands or perhaps millions of possible outcomes. A statistician derives a mean or median to express that central tendency, but how might that mean or median description of life apply to your aunt. Years ago, when I was struggling to understand my survival projection, I happened upon an essay by the noted Paleontologist and cancer survivor, Dr. Stephen J. Gould called "The Median is Not the Message." This essay gave hope to me and allowed me to understand the projection of life in a whole new way. Google search for it or view it here It is my fervent wish that you find hope in the clammer of all this bad news and that your aunt is "in the variation" not the central tendency. Attitude matters. Stay the course. Tom

Carly, Am happy your Dad is holding together. You need to also because family support is vital to assisting your Dad with his treatment. What should you expect at your first oncology appointment? It is hard to answer that question definitely. Each doctor operates differently and each patient is different. But, I'd say this list might be typical: 1. A discussion about the findings of each diagnostic test or examination ordered. (Assume diagnosis was the result of an x-ray or scan and additional tests have been administered). 2. An explanation of the diagnosed type and form of cancer and the extent it has spread. 3. Explanation of further testing or procedures necessary to substantiate the diagnosis and narrow the treatment alternatives. 4. A discussion about the treatment alternatives available to arrest your Dad's cancer. 5. If a treatment alternative is agreed upon, a discussion about the side effects of that treatment and impact on other health conditions (arthritis). What kinds of questions would I ask? How many tumors were found and in what locations? Is the cancer treatable and to what extent? What is the treatment cycle (when and what order will treatments occur)? What are the side effects of each treatment method? Can the tumor(s) be treated using cyber-knife or similar radiation technology? And many more. Here is my ten steps to surviving lung cancer that might prompt more questions. http://www.redtoenail.org/tensteps Read various forums on Lungevity and information from the American Cancer Society website about the nature of your Dad's cancer. Yes I was told initially surgery was not an option but not by an oncologist but a thoracic surgeon. If surgery is possible, your oncologist will likely refer you to the appropriate surgeon. You'll have many more questions and feel free to fire away. Stay the course. Tom

Sylvia, No need to send me your spreadsheet. My disclosure of column headings in a previous post ought to be enough insight for those to create their own bill tracking spreadsheet provided they have the expertise. Of course, it can be done the old fashion way, by hand using ledger paper. Had great news from my oncologist - still no evidence of disease (NED). We spend a lot of time talking about strategies for mitigating side effects that persist. He even used the "cure" word but was cautious to point out that statistically, I remain NED till 2017 ( ten years after last active disease) before he could clinically apply the term to me. But I still didn't graduate to the one-time-per-year-consult. Have a CT scan of the chest scheduled for Jan 2016, then scanziety, till I see my doc late in January. Remember I said long haul. Stay the course. Tom

Linda, I was treated by an oncologist who, at the time, belonged to a small amalgamation of medical and radio-oncologists in Texas. They diagnosed and treated most forms of cancer through clinics distributed throughout the state. More than a decade ago, my clinic was a small operation. Now it is larger but at the time of my diagnosis, one still choose a doctor not a company. I'm not sure that is the case today. I prefer the treatment setting of a small and independent clinic rather than a large hospital. The full service clinic where I was treated had all the diagnostics and equipment to administer conventional radiation and chemotherapy but instead of treating more than 50 patients at a time, they had but 10 infusion stations. A smaller treatment setting was preferable for me. You'll likely hear the words "standard of care" in your discussions with your father's doctor. Once the doctor is confident about the type and stage of your dad's disease, the first series of treatments (assume chemotherapy) will confirm to a "standard recipe" or standard of care. So if you get treatment at a large medical center, a cancer clinic, or a specialized cancer hospital, the type of treatment administered will likely be the same (it will conform to the standard of care). This first series of treatments is often called "first line" treatment. If successful, then celebrate. But mine and most other advance stage lung cancer patients require additional treatment, called second line or third line to arrest the disease. The recipe for these treatments is suggested by a standard of care but is driven more by the physicians knowledge and skill. So second line and additional treatment is where the physician's judgement, experience and intuition are critical. Stay the course. Tom

Sylvia, Understand - completely! Six or perhaps longer years ago, I met a wife caregiver online at a cancer blog whose husband had mesothelioma. Despite the very lethal nature of his disease, he was calm and unfazed. She on the other hand was kind of like you. The only thing I can say with certainty is that people are different and we will react and respond to situations in vastly different ways. His calmness in the face of this storm might be a blessing. Both of your lives are on hold. Hopefully, when the "hold" is removed, your life after diagnosis will be much different than your life before diagnosis. This much I've learned. Cancer changes everyone in a close family and surviving means coping with a new normal life. Mine is not bad; it is just different and so is my wife's. Maui does sound wonderful. If you don't chose the study, go there together for 3 months! We vacationed a lot when we were in between treatments waiting for the "results revealed" scan. One of these trips was a Hawaiian cruise, in February! My doctor was kind enough to write a letter explaining my condition and side effect treatments so that the cruise ship doctor or one on the islands would know what was going on if I needed to present myself for difficulty. Thankfully, we didn't need to use the letter. One more bit of new normal. When we travel and we've done a lot since diagnosis, we always invest in travel insurance. We had to use it once and it is a financial lifesaver! Stay the course, in Maui! Tom

Linda, Welcome here. First take a breath. Second, find a doctor you are comfortable with. Ask your dad's general practitioner for a recommended oncologist. Ask your general practitioner for a recommendation. I found doctors through doctors. Take some time to read into the disease. There is a wealth of information on this blog. I like the American Cancer Society (ACS) because explanations are simple. You might find information on lung cancer staging at one of two places on the ACS website - here www.cancer.org/cancer/lungcancer-smallcell/overviewguide/lung-cancer-small-cell-overview-staging or here www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-staging I don't know that I'd say I beat cancer but I've lived 11 and 1/2 years after diagnosis but it took more than 3 years of active treatment. You'll have more questions and feel free to ask. Stay the course, Tom

My consult is July 25th so am still in the "Scanziety" zone....

Sylvia, His concerns - quick answers: 1. No it didn't hurt but I was anxious. A couple of Doc prescribed xanax made me feel better. 2. Yes, I did. Had a plastic shield my wife rigged up to keep the site from getting wet. 3. Perhaps but I wouldn't swim or hot tub due to the risk of infection. 4. I have no idea. 5. I don't understand "once a week for what" with respect to PICC insertion. Perhaps you mean flushed once a week and if so that jives with my port experience. Your concern 1. I believe - note believe, not sure - my chemo strength needed to be changed or adjusted when I went from IV infusion to port infusion. I recall a change in concentration was required because ports/PICCs were quicker than IV infusions. So if my chemo brain reduced memory is reliable, then your friend telling you about adjusting the dosage fits with my experience. The study is a tough call. Lung cancer and the paucity of treatment available makes tough calls even harder. I'd pray about it, together. Let it rest a day, then decide. Stay the course. Tom

Liz, I wish I had ideas for you and your mom. Although headaches are a noted side effect with taxol carboplatin (my cocktail) I fortunately didn't experience them. I did have very severe joint pain that started a couple of days after infusion and nothing but time would lesson the pain. It sounds like you've got all the right pain meds and so did I but they just didn't work. My wife cut up prescribed Lidocaine transdermal patches and wrapped them around my most painful joints with ace bandages and that sometimes brought enough relief to allow sleep. I recall listening to books on tape because I couldn't concentrate to read or watch TV, and I found a simple novel narration soothing. Stay the course. Tom

I've been painting my toenails red every February 4th, the anniversary of my lung cancer diagnosis day. Last February, I ran out of toes and my wife added hers to the mix. If I can live, so can you. Take hope from my experinece.

Sylvia, Up late I see. First the spreadsheet. I can't share mine because it has too much privacy related information. I can tell you the format we used. Here are the Column Headings at the top of the spreadsheet page we used. Date of Service - - - - Provider - - - - Procedure - - - - Test Ordered - - - - Drugs Prescribed - - - - Co Pay - - - - Amount Billed - - - - Invoice Number Of course we needed to adjust the width of each column to fit the data entered. But, we became diligent about filling in the data after each visit and asked the doctor, nurse or administrator what procedure code was being used to describe the service performed. They were more than happy to provide. Then, when the bill arrived, we could sort by date of service and add the Amount Billed and Invoice Number. This method was very useful in that we often received duplicate bills and before our spreadsheet we double and sometimes triple paid. The provider would refund those payments but months after payment. It was a very useful tool for understanding what we owed and why and most importantly mistakes. There were many mistakes, over billings and etc. Double blind studies are of course the big downside risk of joining a study. One rolls the dice in advance and hopes not to end up in the placebo group. There may be a way your oncologist can petition the drug company or FDA to allow administration of the study drug as a compassionate measure outside of the study. I've read about this type of petition but it depends on your oncologist and their belief about the efficacy of the drug under study and the dictums of the oncologist's practice. You need to talk to your doc and sound him or her out. The first obvious questions is to determine if your doctor believes the experimental treatment has merit. There are emerging new drugs released by the FDA. For example, I read about this one (Keytruda) today - http://www.wndu.com/home/headlines/New-drug-showing-incredible-results-in-treating-lung-cancer-316049121.html Of course, these news reports do not contain enough detail to identify the type of cancer treated and relevant conditions. But pointing out these announced discoveries to your doc may result in an alternative other than joining a study. I customize Google News to report all news about lung cancer and I can quickly scan this information for new relevant information. This Google News tool may be helpful to you. Stay the course.

Well met Sharon or Sam. Sounds like you've got a wonderful family and lots to live for. Unfortunately, somewhere between 15 to 25-percent of folks diagnosed with lung cancer are non smokers. I was a smoker and my type and stage reflects my nicotine addiction. My reading about adenocarcinoma validates your second hand smoke theory. Regardless, you are in the club and I'd rather you not have joined! I found writing about my experiences to be a tonic. Indeed, I have a comprehensive chronology of 11 and a half years of treatment stories to look back on. Stay connected. Stay the course.