Tom Galli

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.

Sylvia, Ah yes, the financial complexities of medicine and insurance are almost as troubling as your husband's disease. My wife spent hours on the phone trying to understand who was charging for what and when. She finally figured a way to organize on our end so we could untangle the practitioner-institution-procedure-medication puzzle. She started a spreadsheet by my "date of service" and entered who and what data including tests ordered and performed, procedures performed and scripts written. Once this spreadsheet was populated, we had a key to understanding the bills and, more importantly, questioning questionable charges. The key to the puzzle is all bills had a "date of service". So we could reject those that had wrong dates of service or wrong services performed. Yes a port is an infusion lifesaver but they are delicate things. Although, a grandson playing with his grandfather is a joyful thing. Like life, all things cancer come with a good and bad outcome. Install a port to ease access to veins but increase the risk of infection and injury - part of your and his new normal. If comfortable, you might consider sharing details about the clinical trial. Some here might have relevant information and experience. Stay the course. Tom

Sharon, We have a slightly different form of lung cancer but a similar surprise diagnosis. Mine was eleven-and-a-half years ago. There is much wisdom in the form of first person stories on Lungevity and other blogs. The difference between a survivor blog and medical literature is the former gives insight to how treatment feels, both physically and mentally. Thus, reading-in gives you notice of what may be your survival journey. I say journey because treatment is a marathon. Like you, my diagnosis was my first serious illness of my life, and I had the expectation that treatment would be swift and efficient. Mine took more than 3 years and I still see my oncologist every 6 months. So prepare for the long haul. Oft times we forget (at least I forgot) the goal of treatment was to extend life. I stopped living it for a while and got so caught up in the mayhem, I became depressed. Therefore, I encourage you to enjoy doing the things you did before diagnosis, if your doctor approves. I have a ritual I abide by. I look at myself in the mirror every day and if I don't see an expiration date stamped on my forehead, I make a deliberate attempt to enjoy the day. Stay the course.

Sylvia, Of course, I have no idea what the CT scan report terminology means but if you saw a side-by-side comparison and things look improved, then count it as a win. Try and ensure you take care of yourself. This will be a long haul and when you need a break, find a way to take one. I got the bumps on my chest also and suffered itching. They are burns from radiation. I used solar-cane (off-the-shelf sunburn med) and that offered temporary relief. The docs ought to be able to prescribe that type of medication in a stronger dose. I am well but have an oncology consultation on the 27th so I'm in the scanziety zone. Stay the course. Tom

Sylvia, Loss of voice was one of my symptoms late in conventional radiation. So was a sore throat. I used prescribed cough medicine to sooth (a special cocktail made at the pharmacy), off-the-shelf sore throat spray, and Hall's Lemon cough drops. Lived on the latter. My symptoms lasted for about 2 weeks after radiation then my voice slowly returned to normal. Tom

Shirley, Of course you're depressed and angry! How could you not be? And, I can well relate having endured almost everything you've gone through. When I hit my first attitude crash, I told my GP and he prescribed medication to help me get over the hump. I say as cancer survivors and for all we endure, we have a absolute right to get real whiny! Stay the course! Tom

Sylvia, It is easier to say have patience than to actually embrace being patient. Encounters with lung cancer are dangerous and we all become affected by fear. My wife recalled I became lactose intolerant during my first cycle of taxol-carboplatin and conventional radiation. The literature does not show a high correlation of intolerance to the drug but it happened to me. I both modified my diet using lactase free milk and avoided cheese or used Lactaid pills before eating must have foods, like pizza. It will take a degree of experimentation to determine the number of pills to offset intestinal difficulties. For example, before eating several slices of a pizza with cheese, I take 3 pills. Understand about the pain associated with radiation. It comes in like a lamb but exits like a lion. I was sucking Halls lemon cough drops almost all the time in addition to my prescribed medication and still the pain persisted. Right about now, he'll start losing energy and sleeping a great deal as daily radiation persists. Each of us reacts differently to a life threatening diagnosis. To this day, I don't know how my wive tolerated some of my antics. I would say that is par for the course. Hang in there. I've attached a file that I composed several years ago that might be a good start point to capture Fred's interesting in reading in to the disease. Surgery for me, at least the first one, was a piece of cake. I never got to the adjunct chemo after surgery because of surgical complications. Everything I've read suggests the adjunct treatment is very important to prevent new tumors. I know this is hard on you but it is vastly important that you be there to support his treatment. Depression for both of you is a normal state. My wife and I laugh about some of the things I did during treatment. It is OK for you to take a break but I would strongly encourage you attend each of his consultations with his medical professionals. I was so afraid of the disease that I wouldn't ask questions but my wife did and some of those questions leaded to a treatment course that saved my life. Stay the course. Regards, Tom

Cancer treatment is an emotional rollercoaster. There is a term some of us use - Scanziety - that time between test (CT, PET, Biopsy and etc.) to results revealed. When one has metastatic disease time slows to a craw after the test and anxiety reigns till judgement day - the consult with the oncologist. I tried to fill up my time by reading about my disease. Have you read "The Emperor of all Maladies"? It is a biography of cancer written in a style most folks can understand. It is frightening to contemplate having part or all of a lung removed. But, my doctor explained it was the best way to ensure the tumor didn't reoccur. It will take time for you to adjust to your new normal. It will be different from pre-cancer life, but I've found my life as a cancer survivor to be fulfilling and rewarding. Try to remember the object of all this treatment - life. Carry on. You'll get there.

Mary, Sorry I didn't respond sooner. Was disconnected from the web when you originally posted. My disease course took about the same as yours. Diagnosed in my early 50s, right lung removed, then tumors in my left lung after surgery. It took me back-to-back years of 6-cycle administered taxol carboplatin and still one tumor reappeared. Then cyber knife technology matured to the point where the FDA approved it for lung cancer. Have been No Evidence of Disease (NED) since 2007 but it took 4 years of fighting to get there. A couple of suggestions: Try not to put your life on hold while in treatment or during lulls after treatment. The purpose of treatment is to extend life so assume it will and carry on. Cure is really, really tough for any type of cancer. Most of the cancer community uses NED - no evidence of disease - which means that neither doctors nor test technology can find any traces of the disease in your body. It does however re-occur after long periods of NED. You are early into a treatment process so try an relax. Good advice on deep breathing after a bronchoscopy. I'd also add plenty of Halls Cough Drops because they ease the soreness of my lower throat

Sylvia, Had that problem also. One of the old-timers told me to eat a bowl of plain steamed white rice in the morning, each morning. Nothing but a little soy sauce for flavor. Worked for me.

Sylvia, Your boyfriend's story sounds remarkably like mine. Also a late stage lung cancer patient with first prognosis of no surgery because of tumor location. I received pre-surgical chemo and radiation to shrink the tumor and allow removal of my lung. Moreover, there are advances in alternative surgical treatment like cyber knife and others that are now available and might help. My chemo was taxol-carboplatin also and my most troubling side effect was joint pain. Read about "taxol toes" and if he develops this let us know. There are a number of practical measures one can take to mitigate this side effect. Interesting that you would count the needle pokes. I never thought to do that. Stay the course. Treatment is a journey not a sprint. Regards, Tom

You've been there and done that and can do it again. Batter up!

One would think that with all the difficulties of a cancer diagnosis and treatment, insurance problems would go away. From your post, I take it you battled your insurance company before treatment and that is a good thing. Far worse would be denial of a claim after treatment. I spent a lot of time crying after diagnosis and during treatment. Then I joined a small cancer blog, then others, and found therapy in writing about my treatment and disease state. This provided an additional benefit of allowing me to learn more about my disease. Enjoy your family today. Look at yourself in the mirror every morning. If you don't see an expiration date on your forehead, enjoy the day!

I get a little anxious pending my yearly oncology consult after 11 years. That is part of your "new normal" cancer life. Sounds like you are doing the right things by staying active enjoying your grandchildren, genealogy, and travel. There are a lot of downside complications with radiation and chemo but the upside is life - these treatments extend life and you certainly are taking advantage of it. Stay the course.

Good news about radiation having a positive effect on tumor. Wish there was a "magic wand" to get you through this watch and wait cycle. I'd also ask your docs about clinical trials.

Hang in there. Cancer treatment is a marathon not a sprint. Try not to get mired in survivor statistics. Read professor Stephen Jay Gould's essay "The Median is not the Message" for a pragmatic view on survivor statistics.

This is my story of survival. It tells of an encounter with a disease of death - lung cancer - and significant life after, a very precious and rare thing. Who I am is unimportant; what I've experience is: eleven plus years of treatment and survival. These words are set down for but one reason - to raise a call to arms to fund lung cancer research. Enough have suffered. It is time for change. I am not a doctor; indeed I possess little medical knowledge. I am, however, a very experienced and long-tenured lung cancer patient. That gives me a unique prospective on the disease that kills more, many times more, than any other type of cancer. I'll avoid statistics. They are readily available form any number of reputable resources. But, I have a firm belief that lung cancer research is poorly funded because it is considered a self-induced disease. I believe my cancer was caused directly by cigarette smoke. I recall a time when many of my peers smoked but they stopped well before middle age. I couldn't. I am addicted to nicotine. Every time I'd try cessation, the addiction would draw me back. Of course, people make a choice to take up smoking but that choice is made primarily when we are young and influenced by peer behavior. Young people do dangerous things. Consult the ubiquitous YouTube "fail videos" for validation. However, there are other disease that we choose to give ourselves. Consider Human Immunodeficiency Virus (HIV) as just one example. Yes, some acquire it from medical transfusion or inadvertent needle sticks, but most are afflicted as a result of a behavior choice. HIV is described as a world-wide pandemic. It may be and in the US to address this largely self-induced disease, we invested $3.074 billion (billion with a B in 2012 for research. Consider further, we spent $1.052 billion on drug abuse funding and that is clearly self-inducted. Compare these with $314.6 million invested in lung cancer research (NIH Data). We spend about 10 times more on HIV/AIDS than lung cancer and drug abuse research garners 3.4 times more funding! In 2012, 47,989 people were diagnosed with HIV infection and about 13,834 died. In that same year, about 226,160 people were diagnosed with lung cancer and 160,340 died! Lung cancer kills 5 times more than HIV in the US. Lung cancer should be our pandemic! In 1998, the US and State Attorney's General entered into a Tobacco Master Settlement Agreement to collectively settle filed law suites against tobacco companies. This yielded $206 billion over a 25-year period. How much of that is dedicated to lung cancer research? About 0.065% or just over $1 billion is earmarked for federal research. Where does the money go? That is a very good question. We need to SCREAM about this inequity. If you are reading this, you are likely suffering from lung cancer or have a family member or close friend suffering. You've read or seen TV news coverage about the horrors of HIV/AIDS but thankfully, it is a problem most American families do not encounter. Yes there is a stigma of self-affliction for lung cancer but the same stigma should attach to HIV/AIDS. It does not and I wonder why my disease is so under accommodated! We speak of those who suffer or pass from lung cancer as engaged in battle. There is no battle for engaging in battle entails a choice. One can retreat. When diagnosed with lung cancer there are but two choices: treatment or death. Statistically for lung cancer, there is treatment and death! Treatment borders on barbarism that is repetitively endured, with uncertain outcomes, and with death looming closely. I was and still am to some degree overwhelmed by fear. I still get scanned once a year and the time between diagnostic scan and results is a nightmare to endure. My treatments nearly killed me, several times. I survived, not knowing why. My survival is hope for those who suffer, particularly for those 230,000 Americans who will receive a lung cancer diagnosis this year. If I can survive, so can you. But, we ought not rely on hope as an effective treatment method. We collectively need to speak out to those that decide on allocations of disease research dollars. Engage your elected officials. Ask them why they continue to under allocate research funding for our disease. Remind them that between 15 and 18-percent of lung cancer diagnosis arise from people who never smoke. Ask them if they are willing to rely on hope if they receive a lung cancer diagnosis.