Tom Galli

Pawsitive (great screen name BTW), Welcome here. Susan's explanation of Stage IV disease is exactly correct as is her characterization of survival statistics. Here is more insight into survival statistics if you care to explore the topic. As far as radiation goes, their is nothing to fear. It destroys tumors and significantly reduces pain in cancer that invades bones. Here is more information on radiation therapy. It was very effective for me. It dramatically shrunk my tumor before surgery and a special form of radiation called CyberKnife allowed me to achieve a "no evidence of disease" or NED state. As the course of radiation progresses, one becomes very tired. There are some sunburn-like skins burns and sometimes a dry cough but these are easily controlled by medication. But, expect to provide assistance near the end of the treatment from fatigue. You might want to tell us what type of lung cancer is diagnosed. Here is more information on types. Moreover, you might want to tells us the names of the chemotherapy drugs involved in treatment. Knowing that will allow us to give you some insight into side effects. And, here is some overall insight into my view of surviving lung cancer. Steps 3 through 10 may be relevant. As you browse through our forum, you'll note a number of us are long term survivors from late stage diagnosed lung cancer. The obvious conclusion from that discovery, is if we can live, so can your other half. Stay the course. Tom

Lbelle, OK, you are staged and typed. The good news is a stage 1 find and your type of adenocarcinoma has the most available treatment options. Surgery is frightening, I agree. But yours will likely not involve much trauma. You may even not have a chest tube installed and if you do, that is no big deal. You will be fine. What is waking up after surgery like? I had a morphine injector for about 2 days and was encouraged to push it when I felt the slightest tinge of pain. I did and I didn't feel any pain. Then they transitioned to less powerful pain relievers. After my first surgery, I was up walking laps around the ward by day 3. I was discharged on day 5 and my surgery involved a complete lung removal that was not minimally invasive. I'm sure the PET return is as you've described. It is a common report. I am very happy things are proceeding rapidly. Look forward to a report of your discharge from the hospital. Stay the course. Tom

Robert, Welcome aboard. You might want to look around at this forum and get acquainted. We've got some resources that may be of interest. Here is information on adenocarcinoma and on Keytruda and immunotherapy you may find interesting. This is a good place to ask questions about lots of things including second opinions. Stay the course. Tom

Linda, OK, so let's take your questions one at a time. On Iressa, start your reading here, then here, then some general background information on adenocarcinoma here. On PET scans, they measure the level of metastatic activity. So a PET reveals if cancer is present; a CT shows the size and shape of the tumor or tumors. Fortunately, there is a combination PET-CT scan (and you've had one) that is now in use and that would answer both the metastatic and tumor size, shape and location with precision. Perhaps you might ask your doctor for a combination scan because of your concern about kidney spots. Here is more information on imaging. I've had a number of combination PET-CT scans and they were very helpful for questionable spots. Sometimes doctors are reluctant to order PET scans after surgery because inflamed tissue can masquerade as metastatic activity. I've had that problem also. You've had breast cancer and I've read about it but the vocabulary and terminology is vastly different. So take some time to read into lung cancer. Moreover, from your continuation on Tamoxifen suggests your doctor may be concerned about residual or metastatic breast cancer. Clearly the tissue from your lobectomy revealed lung cancer by pathology examination but one never knows, so it is good your doc is being cautious. You will likely have more questions and this is a good place to tee them up. Stay the course. Tom

Denise, Perhaps a small localized tumor allows SBRT to be more focused thus fewer treatments. It is a great question to ask however. Even the radiology techs that administer your treatments ought to know. And....yes! Stay the course. Tom

Linda, I just noticed your post. Do I understand you had a recurrence after surgery? So, breast cancer and lung cancer and a recurrence after surgery. Wow, and I thought I had a hard row to hoe! I've not had bone mets but know many that did. Zometa has been reported as hard to tolerate but I've heard good reports about it hardening the bones against the spread of cancer. Have you been on Iressa and Tamoxifen since November? I've heard good things about the former but don't know anything about Tamoxifen because it is normally associated with breast cancer. Iressa has been very effective with some adenocarcinoma tumors that display EGFR genetic mutations. I hope yours responds. Spots on the kidneys and hypo-dense cysts in the liver had been finds that show up on my CT scan. I had a new radiologist check my scan last year and I guess he didn't read through my history because his report scared us to death. I had spots on the kidney and hypo-dense cysts in the liver also but they were present without substantial change from my first CT. They were sometimes reported as larger and then smaller but my oncologist told me it was nothing to worry about. I hope that is the case for you. There is no secret sauce to lung cancer treatment. One must persist to prevail but the result is worth it. I'm a month past 13-years as a survivor and if I can live, so can you. Stay the course. Tom

Denise, Welcome here. I am very familiar with the Panhandle of Florida and in particular Panama City. I'm also unfortunately familiar with your recipe of NSCLC because I also have Squamous cell. The very good part of your diagnosis, if a lung cancer diagnosis has any goodness, is it is an early find. Radiation ought to fry it. I wouldn't be surprised if you get a series of chemotherapy infusions after radiation. That is pretty standard. Optimism is the secret for success. For me, the first and second week of radiation were a piece of cake. The third through the sixth week were difficult. I developed a bad sunburn-like skin burn and a raspy dry cough. Prescribed medication handled most of this problem but I started to feel drained of energy as the radiation progressed. My last week, I was bed-bound save for trips to the clinic. That I'm told is a usual condition. Stay the course. Tom

Janet, We have Miami like weather for you today. Stay the course. Tom

Welcome Sawright, Your mother and I have a lot in common. We share a diagnostic stage and type -- I'm a IIIB Squamous cell NSCLC survivor. I had your mom's same first line treatment: Daily radiation and 6 cycles of weekly infused taxol and Carboplatin Ok, I believe your mother's chemo is a weak dose because it is a companion therapy for the radiation that does the real work. In my first line treatment, I had few side effects from chemo. I didn't even lose my hair. But radiation was another story. It is the inverse of March: it comes in like a lamb and finishes like a lion. During my first two weeks of radiation, I hardly noticed a thing. That all changed in my third week when I developed a painful sunburn-like rash on my chest and a continuous dry non productive cough. I received medication that eased these problems but as daily radiation treatments progressed, my energy level dramatically declined. I spend the last week of radiation in bed except for the travel to the clinic. So your mom will likely need some assistance during form the third week through the end of her radiation treatment. You should also expect this treatment to work. It did for me. It shrunk my tumor so much that the radiologist report wondered if I ever had a tumor. While your mom's first line treatment should work, be mindful that lung cancer is very persistent. Here is a blog I wrote sometime ago about a National Cancer Institute study on the frequency of lung cancer recurrence. You should be mindful of a recurrence possibility for lung cancer treatment is rarely one and done. That said, I'm still alive 13 years after diagnosis and if I can live so can your mother. Here is a resource I wrote several years ago. Steps four, five, seven, eight, nine and ten might be useful information for your mother. I see you've already abided by step six. Finally, about midway through her treatments and about two weeks after treatment, she'll likely have a CT or PET-CT scan to assess effectiveness. I'm looking forward to your announcement of a NED (no evidence of disease) result to us when your mom concludes treatment. Questions? Ask away. Stay the course. Tom

Taxmeles, The 28th is almost upon us. I am aware of the Florida wait times to see specialists. My daughter who lives in Orlando traveled to Johns Hopkins for her brain tumor surgery. Depending on the location of the nodule, the pumonologist might get a sample by using a bronchoscope. Glad you stopped smoking. Let us know how the consultation goes. Stay the course, Tom

Christine, Given your mom's condition and treatments, words of wisdom are a tall order. I've interacted with many in a similar situation and their dilemma was the choice between curative treatment or palliative and hospice care. It is a difficult choice and since each of us is different, there are no rules or guidelines to follow. However, if it were me, I'd chose a path that would allow me to be comfortable and interact with my loved ones. Curative care is often difficult to tolerate, and I'd rather focus on interaction with my loved ones than pain and discomfort from more chemicals. So you can help your mother make her choice between continuing curative care or changing to palliative and then as things progress hospice care. You can start your search for a good palliative and hospice care team and provide her with input to allow her to make a decision. Here is more information on palliative care and here is an explanation of hospice care that may be useful. I am hoping Opdivo quickly arrests your mother's lung cancer. It is known to produce remarkable results in some people and hopefully your mother is one of that population. Stay the course. Tom

Bridget, Well done indeed! Stay the course. Tom

In the days before computers, college registration involved waiting in long lines. Freshmen were last to register and my hope was an elective in social science, fine arts or music. But when I reached the registration table, I was assigned the only open class, Theology 101—The History of Religion. I was less than excited. And, worse yet, it was a Monday-Wednesday-Friday 8:00 a.m. class. The professor was a Marianist brother, with PhDs in Ancient Languages and Cultural Anthropology, and five minutes into my first class, I realized he was a captivating lecturer. Possessing a gift for making the mundane interesting, he introduced each lecture with a compelling story. I was so fascinated by the depth and breath of the professor’s knowledge, I studied with him every semester earning me an unplanned a minor in Theology. I am not a theologian nor am I intensely religious. But Theology taught me a great deal about faith, hope and life. Lung cancer interrupted my collegiate learning. Faith is more than a religious virtue; it is a distinctive human trait. Hope comes from faith. Thomas Aquinas, the noted 13th century Christian philosopher, explained the relationship with these words: “faith has to do with things that are not seen and hope with things that are not at hand.” Faith and hope are essential virtues for lung cancer survivors. We don’t see evidence of treatment at work, yet faith causes our belief they are, and we are ever hopeful of achieving extended life. Hope then is our bastion against things we cannot control like life threatening lung cancer. Life has a beginning and an end. Both are uncertain and often beyond influence. In between comes living, and we have some control over the nature and quality of life. While in active treatment, I forgot my ability for self-determination resulting in 3 years of wasted life. Almost everyday, someone comes to this forum expressing fear, uncertainty, and despondency. I well understand why, but I also know that a lung cancer is not the end of life; it is part of life. In that vein, I recall a quotation by Saint Rose of Viterbo framed in my professor’s classroom. “Live so as not to fear death. For those who live well in the world, death is not frightening…” Have faith, hope and live well. Stay the course.

Welcome Peggy, I note you live at the gateway to the San Juan Islands in the beautiful Puget Sound. I've been to Anacortes many times and enjoyed the wonderful "Shipwreck Day Festival" once. But, most enjoyable was watching the pods of killer whales from the top deck of the Washington State Ferry. So, we have something in common - lung cancer and I've taken Tarceva. But, my Tarceva experience was in 2006, well before the medical community understood it would only work on certain forms of adenocarcinoma that displayed epidermal growth factor receptor (EGFR) mutations. My form of NSCLC is Squamous cell and Tarceva did not work for me. But I know a lady who also lived in Washington State who survived 10 years with Tarceva controlled lung cancer. It was so effective, she passed well into old age from a heart attack. So Tarceva can be very effective. Tarceva is one of the targeted therapies emerging from genetic research into adenocarcinoma (I hyperlinked targeted therapies so you can read about it if interested). You'll have many questions and this is a good place to ask them. Side effects, for example, from my Tarceva experience was a severe rash on my head, face and neck, and problems with my gastrointestinal (GI) system. On another early cancer forum, I asked about ways to control my GI difficulties and someone told me to have a bowl of plain steamed rice every morning. That worked for me! There are many long term survivors with late stage diagnosis on this site. I recently celebrated 13 years of life. If you are struggling with finding hope, consider if we can live, so can you. Stay the course. Tom

Welcome Janet, You are certainly going to a fine treatment hospital. My original diagnosis was stage IIIB but I had pre-surgical radiation and chemo and after my right lung was removed, I had surgical complications that lasted about a year. In that time, the cancer spread to my remaining lung and all I had as treatment alternatives was chemotherapy. My recipe was Taxol and Carboplatin. Permetrex confused me till I googled it. It is Alimta, a common pairing with Carboplatin and more tolerable in some than Taxol. What type of lung cancer do you have? Mine was non-small cell Squamous cell lung cancer. You are starting your 3rd infusion. By now you've charted your side-effects (onset and duration) and likely have and good mitigating medicine. So, after spreading to my remaining lung, I was right where you are 13 years ago -- no treatment available but chemotherapy. I stress two points: chemotherapy worked for me and if I can live, so can you. Take some time to note how many long tenured survivors we have on this site. Lung cancer is a nasty disease and treatment is rarely "one and done" but we are here. This is a blog I wrote sometime ago about surviving lung cancer. Steps 5, 8 and 10 may be of interest. This is a good place to ask questions. It is also a good site to read through while flying back and forth from Houston to Miami. Stay the course. Tom

Mally, I had both in-process chemo scans and post chemo scans. My first line treatment was assessed by a post chemo scan and my second and third line treatments were mid cycle scans. If you are concerned, have a discussion with your chemo nurse. Perhaps your doc has a reason for waiting till treatment is complete and the nurse might be able to explain that reason. I was fortunate to be treated at a small clinic and my chemo nurses were often able to have real-time interactions with my oncologist. In any event, I'd ask the nurse why? Stay the course. Tom

Taxmeless, Welcome here. A potential lung cancer diagnosis is frightening -- I've been there. Cindy gave excellent advice and I agree with her discussion of PET and blood chemistry limitations on pinpointing metastatic disease. If it were me, I'd press for a biopsy. I'm glad your GP is taking an interest in your diagnosis. Tell your doctor you are bothered by the 90-day wait and see if you can get to a pathology diagnosis via an accelerated biopsy. Your GP might consider a thoracic surgeon consultation and I'd let the surgeon make the needle biopsy -- VAT wedge call. A pathology determination is required in any event because if you have metastatic disease, knowing the type of lung cancer is essential before a treatment plan can be designed. That said, I'd take some comfort in your zero uptake from your PET - CT scan. Now, some thoughts on doom and gloom. Any probable cancer diagnosis is not a cause for celebration but by your description, your symptoms constitute an early find. The low dose CT did exactly what was intended: set the condition for an early diagnosis and a easier treatment path. I trust you've stopped smoking. I say that not to preach but because I've known people who've gone through treatment and continued to smoke. Their side-effects experience from chemo and radiation were almost unbearable. If you have a VAT resection, you'll likely have post surgical chemo and surgical recovery complicated by chemo and smoking become a bridge too far. Again, from your description of CT results, if you have lung cancer you are likely to stage at I or II. Many of us here have late stage diagnosis and are still here. So, if we can live, so can you. My GP took a very active role in my treatment and I'm happy to learn your's appears to be also engaged. Use your GP to advocate for an accelerated pathology determination by either biopsy or VAT resection. Then, we'll know what we are dealing with. That is what I'd do. Stay the course. Tom

Susan, Biopsy and port installation with the same anesthesia is good planning. Of course, a port is the only way to go. Radiation should fry the cancer in the node and of course taxol and carboplatin should keep your cancer from spreading as radiation disassociates the tumor. I'm betting your concurrent treatment will be a piece of cake with the Hawaii beach vacation reward looming ahead. I agree, lock and load and destroy the beast! Stay the course. Tom

Wonderful news J L W! Do the clean scan dance. Stay the course. Tom

Paula, Well that is good news. I agree with your doctor. Complete the two remaining chemo treatments and finish the scheduled radiation. But, no evidence of disease is a wonderful result. Celebrate! Stay the course. Tom

The lights dim, the announcer’s introduction complete, now all the stand-up comedian needs to do is be funny. We’ve all seen one bomb. Even the best have a bad night. Overcoming fear must be a prerequisite for a comedian. Comedian and author Jerry Gillies developed an excellent approach for handling fear: “Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.” This is very relevant advice for a lung cancer survivor. I practiced a broader form of writing down fears by producing a journal of treatment experiences. I still re-read that journal to keep connected to my treatment. While I read the entire entry, I concentrate on what I was afraid of. So in a broader sense, I practiced Jerry Gillies' sage advice and benefited from it. The power of writing down fearful things is important because my fear quickly morphed into a monster by spawning a multitude activities that I may or may not have been frightened by. For example, chemotherapy infusions were frightful events — at least that is the way my journals in early treatment read. But was the entire infusion process frightening? What I was afraid of was installing the IV, not the stick, but the wiggle to find the right place to situate the device. An irrational fear because wiggling generates a mild discomfort but in my mind, wiggling is enduring torture. I have this mental picture of being strapped to a chair for interrogation while nurse-after-nurse “sticks and wiggles” on every extremity. Just last week during a blood draw, the head phlebotomist had to pin me to the chair because I was “going down” during the procedure. A quick application of smelling salts saved the day! Following Gillies’ advice, I would write down “wiggle” on my list of fears. Getting to know my fear of wiggling produced some ways to put it aside and move ahead. My first way was Xanax. One mg of Xanax about 30 minutes before a procedure and IV installs are a piece of cake. Another way is to tell the nurse ahead of the procedure that I have a phobia and not to wiggle; pull it out and try another vein. Another journal reveal is fear of pain caused by lung cancer progression. Reading disclosed metastasizing tumors invading my spinal chord causing excruciating pain. My oncologist dismissed this by explaining palliative radiation and hospice care. Thus, I was able to put this fear aside and continue on. A lung cancer diagnosis is the most frightening event in my life, treatment is a close second, and recurrence follows. Lung cancer trumps everything else I deal with. But, I learned to face this fear. Writing about fear helps me understand it and deal with it. Jerry Gillies’ approach works. Stay the course.

Paula, Ok, I think I understand. By dye test, do you mean CT with contrast (contrast being the dye)? First thing I advise, these are your test records. You can and should ask for copies of them. See the clinic nurse before or after your next scheduled infusion and tell her you want paper copies of all scans conducted. Then, take those copies to your family doctor or general practitioner. That ought to clear the confusion about where your cancer was located on initial diagnosis and where it is now. Second, it is not unusual for there to be dramatic reduction in tumors even half way through your infusion process. I had one such in-process scan that indicated no evidence of disease (NED) after only 2 infusions into an 8 series schedule. Yes, I finished the remaining infusions and suggest you do the same. Even if things are drastically improving, you still want to ensure you kill every last cancer cell! Are you attending your consultations with your doctor with a second person? A second set of ears is always helpful, especially when it comes to confusion like what you are relating. When I was in treatment, I was so "out of it" that my wife did most of the questioning. I'm betting on the drastic improvement by the way. Stay the course. Tom

Vicky, Support and advice are what we are all about. Can you give us details about your cancer diagnosis? What type and stage of lung cancer do you have? Do you have a post-surgery treatment plan established? Susan provided some information on statistics but so many of us here have exceeded the survival statistics so they can only be considered as general indicators that do not necessarily represent your individual outcome. Click on the search box and look at the profile for michellep, MaryTD777, and Donna G note how long they've survived. Try and see yourself succeeding in treatment and acquiring a long history of surviving lung cancer. Of course, read about your disease. The resource at LUNGevity's website -- Lung Cancer 101 -- is one of the best and comprehensive introductions to our disease and possible treatments. As you navigate through that information, you'll likely have questions and this is a good place to ask them. Stay the course. Tom

Paula, Very glad you are still hanging in there. Of course, my prayers for you and all those affected by lung cancer continue. I reviewed your past posts and didn't find any information on how you are being treated. Are you receiving radiation and chemotherapy? What type of chemo are you prescribed and what are your infusion intervals? Letting us know about this information will allow other LUNGevity members to share their experience in treatment outcomes and side-effect mitigation. Stay the course. Tom

Mally, Statistics are an imprecise numerical method to characterize, define and predict effects and outcomes. When used in what is called a "design of experiments" (google it if you want to get into the weeds), a statistical projection can be very accurate. When applied to human beings, however, the level of precision and prediction is less certain. Why? The short answer: human beings are complicated, the data collected about cancer patients on diagnosis is incomplete, causes of death for every cancer patient are not determined, in short there is a lot of noise in the variables under statistical examination. But, something needs to be established to measure the effectiveness of treatment A versus treatment B, or treatment A versus no treatment. So for scientists and researchers trying to obtain a measure of effectiveness, statistics are the only tool in town. The danger comes when one tries to apply statistics to forecast the survival of one person in an entire population of cancer patients. Then the projections get flaky. Why? I'll just give you one example to keep from diving deep into statistical theory that would be of limited interest. When diagnosed in the US, the National Cancer Institute receives a report that contains the following elements: date of diagnosis, stage and type of cancer, age at diagnosis, sex, and race. These elements of information become the database that is used to generate survival statistics. There is no information on complicating health problems, like heart disease. And, more importantly, when one of the population dies, the death is reported (sometimes) but the cause of death is not precisely determined. That means a cancer patient could pass from a heart attack and the statistical data base would reflect the death with a presumption that cancer was the cause. So the data is inaccurate and the statistical projection is inaccurate. As an engineer, I have a different idea of accuracy than say a stock broker. I am looking for specificity while the stock broker is looking for a trend. Trends are valid indicators provided they are recognized as inaccurate generalized explanations of what is happening. That is indeed what survival projections are - inaccurate generalized explanations of what is happening. So, when you read XX-percent 5-year survival rate, it is an inaccurate generalized explanation of what is happening to hundreds of thousands of people and it may not, in fact, it may be a gross error, when applied to you. Proof? I beat the 5-year rate 8 years ago. Stay the course. Tom