Tom Galli

Sounds like things are headed in the right direction. Now for some challenges down the treatment road. Your encouragement about joining a support group is spot on. The radiation and chemo will physically wear him down but the pondering of the possible consequences of his disease combined with treatment debilitation will test his (anyones) coping skills. No one is prepared for this and he needs to get to a place where he can share his experiences and frustrations with people going through the same process. Blogging for me was a way I could share my feelings and relieve stress. But joining an on line support forum like Lungevity has an additional benefit of experiencing lung cancer from the patient prospective. Although we may have different variations of the same disease, lung cancer patients have much in common when it comes to treatment, side effects, and life after treatment. Your interest in his treatment and outcome suggests you are a caregiver and I encourage you to stay in touch as he progresses through treatment. Ensure you are familiar with all the resources of the LUNGevity Foundation (www.lungevity.org). Someone will always be here to address your questions. Stay the course. Tom

BlueWolf, Now I understand. Her sustaining problem is shortness of breath on minimal exertion despite a O2 saturation above 90%. Also noted are complications of Heart Disease and COPD. The latter might be driving the problem with the added complication of the patchy areas. You reported snoring as a symptom. Might she have a sleep apnea? My pulmonary medicine doc said my use of a CPAP for apnea was helping with O2 counts. Your sister might not even need a sleep study to get a prescription for a CPAP machine. If you get one, buy one on line (they are far less expensive) and buy a nasal pillow mask. I've found CPAP-Supply.com to be a good online source. You'll need a script for your first order but your GP or any doctor, even the oncologist, can provide that. Is she using O2? Doctors have told me O2 is in my future because I also suffer from shortness of breath on mild exertion and as I get older, it gets more pronounced. I've only got about 40% lung function and in the summer I get asthmatic symptoms that make breathing difficult. Stay the course. Tom

BlueWolf, I read your post history of your sister's treatment. On 13 August, you posted a radiologist's description of a recent CT scan and asked what the description meant. Here is a website that I've used in the past to understand my radiology impressions - http://www.radiologyassistant.nl/en/p50d95b0ab4b90/chest-x-ray-lung-disease.html I've had all kinds of unusual CT and PET scan findings. One CT reported by a radiologist in a local hospital on emergency admission scared the daylights out of the ER physician. A quick doctor-to-doctor consult with my oncologist calmed things down a lot. Radiographic interpretation is indeed difficult. The PET scan would have clarified the situation but for Medicare. Sadly, lung cancer has this unfortunate stigma of self-inducement that tamps down diagnostics and treatment that other cancer survivors normally benefit from. I wrote my congressman and senators a nasty letter about Medicare'd denial of PETs. It didn't change things, but perhaps if we all start pinging our elected officials, things might change. They did approve low dose CTs for at risk lung cancer patients. Now for some suggestions. My after scan consultations with my oncologist consisted of my oncologist reading and explaining the radiologist written report. No film was ever used. I once had an area of concern in my empty right cavity (post pneumonectomy) after a CT that the radiologist report suggested new metastatic disease. The word "opacification" was used in the radiologist interpretation. My oncologist called me before the consult and told me the opacification area was located in proximity to my incision scars - a site of chronic pain. We asked him to obtain the film for the consult. During the consult, my wife and I with the oncologist and senior scan technician looked at the film and concluded the reported area was indeed in the immediate area of my incision scars. So, sometimes asking your oncologist to obtain the actual film as an explanation vehicle is helpful. It did earn me another CT and the opacification was no longer present. Stay the course. Tom

I can't give a medical opinion; I'm a patient not a doctor. I can also only offer an opinion based on my experience. Given that understanding, I would suggest a focus on finding a medical oncologist your step father trusts and is comfortable with. I don't know if his disease is metastatic or not (the spots close to his heart are presumably in or on his lung) but it is late stage disease and if surgeons have declined to operate, then a medical oncologist becomes the quarterback of your step father's treatment team. One more thing is relevant. If surgery and radiation are ruled out, then your step father will likely receive a type of chemotherapy that is called "the standard of care". This is a National Cancer Institute endorsed formulation that almost everyone with your step father's stage and type of cancer will receive. If this is the case, then where the chemotherapy infusion occurs is almost immaterial. So if your step father found a medical oncologist in the Huntsville area he was comfortable with, and the doctor practiced at a small clinic, he'd receive exactly the same formulation that he'd receive at MD Anderson. Important to understand is this first series of treatments is called first line treatment. If first line treatment arrests his disease then celebrate, but it often doesn't. When it doesn't, second and third line treatments depend more on the skill and intuition of the medical oncologist rather than a standard of care. This is when you might consider obtaining treatment at a well known cancer treatment center. Moreover, sometimes experimental treatments emerge and your step father may benefit from such a treatment. Again these are found at larger cancer treatment centers. So, if surgery and conventional radiation with adjunct chemotherapy are ruled out by his doctors now, then I suggest finding a medical oncologist your step father trusts and is comfortable with. I found mine through my General Practitioner. A doctor close to home also holds the advantage of having family to help him through chemotherapy. He'll need help because side effects can be a challenge. I've attached "Ten Steps to Surviving Lung Cancer" that I wrote years ago. Some of this information may be helpful. Stay the course. Tom

I've read good things about Vanderbilt-Ingram Cancer Center. Assuming a Vandy-Ingram thoracic surgeon declined to operate, might you get a second opinion from a different thoracic surgeon associated with Vandy. MD Anderson consult in three weeks is fast. I live in Texas and many local survivors have waited months to be seen at Anderson. Assume he's had a biopsy and type of adenocarcinoma (non small cell?) is known. Also assume from your post the tumor is confined to a single location, so stage 3A. I think what is doctors are saying by recommending radiation and adjunct chemotherapy is they want to keep the single tumor from metastasizing to another location (second lung, lymphatic system, other organs). I can't suggest a better treatment center than Vanderbilt-Ingram in Tennessee.

Bob, Yours is a hard case. Thought a lot on how to respond. I conclude a treatment or no treatment decision is very personal. I did not make a no treatment decision and that achieved two outcomes: extended life at the price of debilitation during treatment and chronic pain after. Yet, for me the outcome of extra life was worth the cost. Some I've known decline treatment and their quality of short life avoids the cost of treatment induced debilitation. Unfortunately we share a disease with few available treatment options for late stage diagnosis. If you choose treatment, then I'm sure the professionals at MD Anderson will help you choose between conventional chemotherapy and immunotherapy. Having said all that, I've figured out my meaning of life since my diagnosis and extended treatment. It is joy. When I experience joy I am happy. Before diagnosis, I can't recall many times in my life where I experienced joy. After diagnosis, there are many. So my purpose for living is to experience joy. I spent 54 years living with few joyful experiences and more than 11 years living with many. Cancer changed my outlook on life. Find joy in living for either a treatment or no treatment decision. Stay the course. Tom

How can we help?

Stacy, I'm not a radiologist but the impression suggests an inability to classify the discovered nodules as cancer or not. A PET-CT appears to be the next test ordered. Here is a explanation of what that test consists of and how it determines metastatic disease (cancer). http://www.lungevity.org/about-lung-cancer/lung-cancer-101/diagnosing-lung-cancer/imaging-tests Stay the course. Tom

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