Tom Galli

adv_sports, Afatinib is a new targeted therapy for adenocarcinoma that displays a genetic marker for epidermal growth factor receptor -- EGFR. I has produced remarkable results in a lot of folks. You mom's doctor may further decide to use radiation therapy in addition to Afatinib to relieve the tumor pressure on her spinal chord and address the tumor in her brain. So that treatment may be on the horizon. Glad her appetite has returned. That is always a good sign. Stay the course. Tom

Susan, Did you paint a toenail red? Stay the course. Tom

Lbelle, Good news on your appointment. Let us know the results of the bronchoscope when you receive them. Hopefully, this will all be leftover stuff from your pneumonia. Stay the course. Tom

Nicole, It is not unusual for there to be a delay between the end of scheduled radiation and a scan, but normally that delay amounts to about 2 weeks. Still depending on how busy the center is, a nearly month long post treatment center is not very unusual. Moreover, scheduling additional radiation in advance is actually a good thing. It tells me the radiation oncologist believes additional radiation can be performed if necessary. As I recall, you reported he did not tolerate chemotherapy very well and radiation was therefore his only treatment alternative. Might a appointment for additional radiation treatment if necessary be a good thing? And yes, normal treatment protocol is to assess the treatment effect before deciding on further but scheduling it in case I think is prudent and telling. Stay the course. Tom

Bridget, Use your first fight as an experiment. Take your lorazepam and see if that works alone on your outbound leg. If it doesn't take you pain med shortly before boarding on your return leg. I always take a pain med dose for long flights >2 hours. For transatlantic flights, I take 2 spaced about 4 hours apart. Stay the course. Tom

J L W, Welcome here. We all kind of start out that way -- a scan, an uncertain result, another scan and waiting. I really hope your wait is for a negative PET scan result. 0.9 mm is a very small nodule. By my approximation the nodule size in inches is 0.035". I'm surprised anything that small would return on a CT scan, especially with the lobulated, spiculated descriptors. Let us know what your doctor says after consultation. Stay the course. Tom

Rayven, Welcome here! Your mother's pronouncement about extra ordinary things accomplished by ordinary people is exactly correct. Why is it correct? Because belief, commitment and perseverance best notoriety every time. Successful ordinary people actually accomplish things, while the notable among us talk about accomplishing things. I'd be all day typing a list of successful ordinary people but if you believe your mother's wisdom, then you top the list. I fundamentally believe your attitude towards treatment and outcomes is essential to besting lung cancer. I have no medical proof, but I've interacted with a lot of lung cancer patients and those that are interested and involved in their treatment, knowledgable enough to ask the TPQs (terribly perceptive questions), and possessing the courage to persevere seem to achieve favorable outcomes. I came to believe this after encountering Dr. Phillip Berman, a radiologist and never smoker, diagnosed with Stage IV NSCLC and Stephen J. Gould, a Harvard professor of Biology and Paleontology who was diagnosed with abdominal mesothelioma. Both these men did more than survive, they thrived in life while in treatment and lived well beyond statistical projections for their disease. As an MD, you've likely digested the statistics. I'm an engineer and closely examined them. But my diagnostic angst caused me to forget how imprecise projections can be given the irregular and incomplete diagnostic data set that constitutes survival statistics. Reading Gould's essay, "The Median Isn't The Message", set me straight. Listen to it here. You are correct in one observation. Lung cancer does change your life. But it is still your life to live and duration and quality is not driven by lung cancer but your "sanguine attitude." Stay the course. Tom

Lbelle, Cindy is exactly correct to point out a needle biopsy performed by an interventional radiologist. This specialist may be the easiest and best way to get confirmation about your mass. Further, she's right about the downside of bronchoscope procedures. My first could not obtain a biopsy sample. I had an interventional radiologist re-install a chest tube that fell out of my back. Actually two were involved in the procedure and they used a fluoroscope to determine where to make the new incision. It was performed with a local anesthetic and was a piece of cake. The good thing about interventional radiologists is most medium to large hospitals have them and they are readily available. Your oncologist ought to be able to arrange a consultation. Stay the course. Tom

Meloni, So the surgeon will remove the troubling node and with the ALK biopsy finding, you've got an established targeted therapy as a future treatment. This is good news, I think. Stay the course. Tom

Michelle, Certainly, yours was not the best of oncology consults. Palliative radiation should help with the pain. Ask your doc if you need Zometa that is normally given to those with significant metastasis in bone. It is supposed to harden bones to damage cancer causes so you don't break your hip after the palliative radiation relives your pain. The progression is not good news. I remember many of those bad news consultations. In 2005, not many new drugs were available and the old standard Taxol and Carboplatin was my only choice. It was having a good effect but not a lasting effect. It would knock the tumors down but they'd return again but my doctor was considering administering Taxol and Carboplatin as if I had a chronic condition. It is interesting because I note there was no progression of your lung spots and lymph nodes. So, something worked on them. Let us know about the trial when you get details. You are in Ohio and there are a number of well respected clinics in that state. Stay the course. Tom

lvs2crossstich (love the name BTW), I completely understand how you feel. My diagnosis was also a complete surprise. Ok, let's talk about two topics you might want to try and neck down your focus on: treatment and attitude. First, you have one of the most treatable forms of lung cancer -- adenocarcinoma. You don't mention it but I imagine you must have had a biopsy somewhere along the diagnosis trail because you identify adenocarcinoma and a type of lung cancer does not result from a PET scan. Ensure your biopsy is tested for the presence of tumor markers. Some forms of adenocarcinoma tumors display genetic portals that are open to attack in newly emerging targeted therapy. You can read more about targeted therapy here. But postpone reading that link till you've read this one. Steps three through ten are applicable to you. Step six -- getting an infusion port is something I strongly recommend, and steps eight and nine are also relevant just starting chemotherapy. But, the most important reading you should do is in steps five and ten -- attitude. I just celebrating surviving 13 years since a surprise diagnosis of non small cell Squamous cell lung cancer. Many of us on this site are long term survivors with a late stage diagnosis. The most important take away from that statement is if we can live, so can you. I fundamentally believe the most important factor in surviving a lung cancer diagnosis is attitude towards treatment and outcomes. I have no medical proof to bolster my belief but developed it about halfway through my 3-year treatment journey. Since then, my outcomes improved dramatically. Here is a youtube link of Dr. Gould's essay mentioned in the step five discussion. I still listen to it frequently and find it reassuring. I'm not going to "put a good spin" on your diagnosis. Treatment will be difficult and it will likely not be "one and done." Lung cancer is persistent. Most of us have had recurrences since achieving a "no evidence of disease" or a NED result from treatment. But, for me, the persistence was worth it. I lived to walk my daughter down the aisle when she married and just recently celebrated the birth of my first grandchild. So put your battle rattle on, lock and load, and proceed purposefully into treatment with the objective of more than surviving, but thriving in life. You'll have many more questions and this is a good place to ask. Stay the course. Tom

Hopeful, His next milestone is formulation of a treatment plan. In that light, I have but one suggestion. Have your dad read this. Steps 3 through 10 apply. Stay the course. Tom

Kevin, Not everyone experiences pain and your lobectomy may not have caused the same injury that my three thoracic surgeries caused. I don't avoid air travel but I need to plan a respite after a 3 plus hour trip. That entails an overnight stop. I'm at the point where a 1 to 2 hour flight is tolerable. I also take prescribed pain medicine on longer flights and that helps. It is now about 4 months since your surgery. Have you tried a flight? Stay the course. Tom

Hopeful, Welcome here! I understand you are diagnosed with Stage IV adenocarcinoma in both lungs and additionally Myelofibrosis and asking what medical speciality is best to treat both problems. I believe a medical oncologist that also specializes in hematology. This is a common pairing in the oncology field. How were you diagnosed? Stay the course. Tom

Lbelle, Blood work indicators for lung cancer? Not that I've heard about. They are researching blood and breath tests but nothing yet that substiantes a diagnosis. Diagnosis seeks to determine two things: where the cancer is in the body (stage) and what form of lung cancer (type). Scans (CT, PET/CT, MRI and brain and sometimes bone scans) determine stage. Pathology reports of tumor samples determine type. Samples can be obtained by needle biopsy, bronchoscope, or surgery. It occurs to me that depending on the location in the upper right lobe, a surgeon may be able to perform a needle biopsy. So, that might be another alternative to waiting for a pulmonologist. Stay the course. Tom

Lbelle, Oh my! I'd be terrified if I needed to wait for several weeks given your problems. Ok so let's break down the problem. CT scan showed a suspicious mass. I've had both pulmonologists and thoracic surgeons perform bronchoscopy. So see if a thoracic surgeon is more available. Do you have a general practicioner or family doctor? If you do, see if your GP can speed availability of either specialist. There are two kinds of bronchoscope. A flexible scope and a rigid scope. Light anesthesia is for the former and heavy is required for the latter. Years ago, only thoracic surgeons did a rigid scope procedure in a hospital setting. Now, my thoracic surgeon does them in day surgery or an outpatient day surgery setting and he does both rigid and flexible scope sessions in both settings. I've been scoped many times. The doctor can both see inside your thoracic cavity if an incision is made at the base of your throat or in your lung through your airway. Moreover, the scope can take samples of the mass for a pathologist's examination. The sample will be definitive -- cancer or no cancer. You didn't say where your mass was so I'm not sure how the procedure will be performed. Of course, the mass could be a residual from your atypical pneumonia. And you may have nothing but more recovery to deal with. That is why you should reach out to your GP to set help finding a available specialist quickly. More questiins. Ask away. Stay the course. Tom

Laney, I had three recurrences. One after first line radiation and chemotherapy (Taxol and Carboplatin) and "curative" surgery, the second and third after 2nd and 3rd line chemotherapy. I finally achieved NED after more than 3 continuous years of treatment from a CyberKnife. Here is a blog I wrote that cites a National Cancer Institute study showing how frequent recurrences are for various stages of lung cancer. Stage IA patients have a 1 in 3 chance of recurrence. I didn't realize it was that high. I've had lots of scares from PET scans where inflamed tissue (in my suture area) lit up and CT scares from hypo-dense cysts in the liver, but never a lung nodule that was not malignant. But, that is just my experience. There are nodules that turn our to be non-malignant. Here is a Web MD article that talks about them. I've heard other survivors speak of them but I never had a non-malignant lung nodule. That said, according to the National Cancer Institute, your mom has a 66-percent chance of non-recurrence so her small nodules could turn out to be nothing. We don't mind your questions. That is why we are here. It takes a while to understand "lung cancer speak", so fire away. Stay the course. Tom

Laney, Indeed, non small cell Squamous cell lung cancer is persistent. That is my type but stage IA is an early find. I think it best for your mom's doctor to assess her nodules. The likely scan would be a PET scan. (I've hyperlinked PET so you can read about it) Two and 3 mm nodules are very small and would be very hard to biopsy. Did she have post surgical chemotherapy? I hope someone is planning on going with your mom for her consult. Here is some information on Squamous cell non small cell (we abbreviate it as NSC) lung cancer. You may want to pass this to your mom or to the person that accompanies your mom to her consultation. What should you anticipate? Any nodule in a long cancer patient is suspicious until dismissed. So I suspect your mom's doctors will want to know if the nodules are metastatic. So, she'll likely have a PET that is capable of revealing metastatic activity. If the PET scan is negative, then she can go on with her life. If it were me, I wouldn't want to be in the wait and watch mode. I hope this helps. More questions, fire away. Stay the course. Tom

adv_sport, It is likely a good thing she is hospitalized and a tumor in or interfering with spinal chord could indeed cause numbness and difficulty walking. Let us know the MRI results and tell your mom thousands of folks are wishing her well. Stay the course. Tom

Welcome Robert, I don't believe there is ever a cure for lung cancer. The best I hope for, after 13 years of surviving this madness, is NED -- no evidence of disease. I saw my oncologist yesterday and received another NED pronouncement but I'm scheduled for another CT scan in August and we repeat the process. Lung cancer, it seems, is persistant. My reading about Erlotinib confirms your report. Sometimes, cancer cells figure out a way to survive the Eriotinb assault. However, I knew a lady who lived for 10 years taking Eriotinb or Tarceva. She passed from a heart attack. So, for some, this drug can be very effective. You may be among this population. Our disease is under researched. Fortunately, however there is one small exception: adenocarcinoma and the small percentage of adenocarcinoma patients who's tumors display genetic abnormalities. This is a very active research area and advances in targeted therapy and now immunotherapy are being frequently announced. You are right, there is no cure for lung cancer, regardless of stage. Here is a blog I wrote sometime ago about a National Cancer Institute study showing the frequency of lung cancer recurrence even for stage I and II diagnosis. Lung cancer is so persistant that my oncologist, after 13 years surviving and 9 years NED, still doesn't use the "cure" word during my consultations. That is why I see him 2 times per year. You are indeed a survivor and the most important thing you've revealed is that you continue to "think positive" about your treatment and outcomes. This is so very important. Welcome here. Settle in. Stay the course. Tom

adv_sports, Your mother and family are veterans concerning lung cancer based upon your description of your mother's treatment history. Unfortunately, as I am learning myself, age and residual side-effects often complicate the process of diagnosis. I have peripheral neuropathy as a lasting side-effect from chemotherapy and sometimes other problems like a recent bout of pneumonia increase my numbness and ability to walk. So, your mother's doctors will need to sort out her symptoms and the new pathology information to determine a new treatment plan. Chemotherapy is sometimes difficult but advancements in side-effect control and changes in drugs have made it easier to tolerate. Be sure you have someone accompany your mother at the Thursday session to ensure you completely understand her problems and potential treatments. You'll likely have more questions and are most welcome to ask them here. Stay the course. Tom

Ncagle, My first thought is swollen lymph nodes can be an indicator of any number of problems including cancer. Lung cancer however often affects the lymph nodes within the chest cavity and you are reporting nodes outside this area. But, tomorrow I'm sure your doctor will clarify things. Welcome here and I hope your stay is a brief one in that you do not receive a lung cancer diagnosis. If you do, we'll help you through the diagnosis and treatment cycle. Stay the course. Tom

Jerry, After a years worth of surgery involving removal of my right lung and three subsequent surgeries repairing a fistula in my airway, tumors metastized to my remaining lung. I had my surgery after first line radiation and chemo to shrink the tumor. With mets to my remaining lung, treatment options were limited to chemotheapy. I had 6 cycles of taxol and Carboplatin infused every 3 weeks. That knocked the 3 tumors down, but one returned to my left lung. I again had 6 cycles of taxol and Carboplatin in combination therapy with the oral drug Tarceva. The tumor was knocked back, but returned again. Fortunately, a new form of radiation was FDA approved for lung cancer patients and this is what finally achieved my no evidence of disease (NED). So yes, metastasis after treatment is not unusual and tends to narrow treatment options. Stay the course. Tom

Patrick, Certainly a cancer diagnosis is never good news and completely understand your wanting to find the best treatment facility. But, I'd wait for the biopsy results and the diagnosing oncologist consultation before thinking about treatment facilities. There is a lot of unknown information about your mom's cancer. Scans determine stage and she'll have many to confirm the location of other tumors if any. Biopsy determines type. Both type and stage must be known before a treatment plan can be developed. We have what is called standard of care treatment keyed to associated stages and types of cancer. First line (first treatment) standard of care for most who cannot have surgery is radiation and chemothearpy. Depending on the type of lung cancer, first line chemo may be given in pill form. So there is lots to discover. Check out LUNGeviaty.org and read about type and stage of lung cancer in the cancer 101 section. The decision about where this treatment should be given again depends on type and stage. If your mom has an unusual type of lung cancer or if treatment complications are expected, by all means consider a cancer center. But the downside to a well known treatment center is waiting. I had my first, second and third line treatments in a small clinic. I had garden variety NSCLC Squamous cell so the small clinic center offered exactly what I'd get at a large cancer center hospital. I found close to home and friendly staff to be important considerations Welcome here. We are a good place for your questions. We are not doctors but are experienced cancer survivors who've seen and experienced it all. Stay the course. Tom

Paula, Sadly, I completely understand your dilemma. Here is the way I think about things. I personally do not hope for a cure; I hope for no evidence of disease (NED). I had a CT scan on Friday and see my oncologist on Tuesday for results. I still see him twice a year and its been 13 years since diagnosis, and 9 years NED. He told me however, that lung cancer is very persistent, hence the twice yearly visit. He's often seen recurrences even after long periods of NED so he doesn't use the term cure. Therefore, when I think about my disease and 3 recurrences after NED scans, I need to remain ready to strap on my battle rattle and fight for my life. So I don't focus on curing or healing, I hope for NED but need to stand ready for further treatment. That reality suggests I make each NED day enjoyable because of the likelihood of difficult treatment days. Death is inevitable. The only uncertainty is when. But, after diagnosis, death had a certainty about it that I wasn't prepared for. Death from lung cancer was frightening. Several of my doctors talked to me about hospice and that alleviated some of my fear, especially the fear of prolonged pain. After learning I'd be comfortable, my fear waned somewhat. I was however depressed, especially after each recurrence. I was severely depressed after my last recurrence and was treated with counseling and medicine. I needed both. One mistake I made was not seeking help for my depression earlier. My daughter was in her twenties when I was diagnosed. We were frank with one another about outcomes. This frankness did not diminish hope but we both understood the reality of cancer, its persistence, and its lethality. I was fortunate I didn't have to explain these things to a child because the discussion would have been much harder. If it makes you feel any better, if Tuesday's consultation is not good news, I'm not sure what I'd do or how I deal with the news. My wife would engage and start treatment discussions with my oncologist, but I would be depressed and would need to find courage to endure treatment and uncertain outcomes. I hope I can find courage. Stay the course. Tom