Tom Galli

Oh no! What lousy news. Hear great things about U of M Cancer center. I'm still NED and hoping to stay that way but I had 4 recurrences during treatment. You know the drill -- staging and typing drama. My oncologist is retiring also so I need to find another also but as of now, my visits are bi annual "how you doing" office calls. Stay the course. Tom

Lisa, Welcome here. I had the same form of cancer (Squamous cell) and had a resected right lung followed by surgical complications, chemo and cyber surgery. Have also had several squamous cell skin cancer resections. The PET SUV > 5 should be watched and I'm sure his oncologist is on top of things. I hope he continues to be well. Stay the course. Tom

Wow! You need to find someone in the medical system to be his advocate. I'd work the oncologist ("a brilliant man") and call or message his office with the text you've provided. See if that can get traction. I don't know anything about PEG tube problems but I think puss is an adverse indicator. Pain on movement should also be. A simple wbc blood test ought to show the presence of an infection. You think his GP would run this test? I don't have any further ideas. Anyone else have suggestions? Stay the course. Tom

Dana, Glad to help but realize I am not a doctor. Your treatment description sounds like first line standard of care lung cancer therapy. He is having daily fractional radiation and weekly chemo (likely a weak concentration) once per week. First line standard of care treatment is normally administered to those who can not have surgery to resect their tumor or tumors. So, he is likely at a late stage condition - stage III or IV. Here is information on lung cancer stages. If he has adenocarcinoma (here is information), he has the most treatable form of late-stage lung cancer. Some percentage of adenocarcinoma patients have tumors that display genetic markers allowing targeted therapy as attack portals directly into cancer cells. Here is information on targeted therapy. A very simple question is if his biopsy showed tumor markers and if so what were they (ALK, EGFR, ROS1 and etc). Your brother or parents may not react to that specific kind of question. You might also email your dad and link this site as a resource for him to use. He'll have a lot of time on his hands and may want to read about us. Many of us are late-stage diagnosed lung cancer patients and are long tenured survivors. Read Donna G or my profile. Go to the search bar at on the top right of the page and type Donna G or Tom Galli into the bar. Then click on the latest comment and when one pops up, click on the name, then About Me. It will take you to the profile and see how long Donna's survived under similar conditions to your father's disease. Indeed, there are many and you can read the forums and quickly figure out there are many long term survivors of late stage diagnosis. The message from that exercise is if we can survive, so can your father. Welcome here. More questions? Fire away! Stay the course. Tom

Karen, Welcome here. You are so right about "unglamorous" and devastating lung cancer is. Here is some sobering information. Every time I look at this data, I realize how lucky we are to be blogging about our disease. Glad you've joined us and.... Stay the course. Tom

Mally, Sorry, I also saw your questions but it was a busy day answering others and my memory is waning with age..... Stay the course. Tom

Jeff, Happy you have a quick appointment at the VA. I assume you are aware of the disability implications of a agent orange related condition. You should do a little on line research to see if you qualify for a monthly disability check from the VA. Let is know about the results from your appointment and your treatment plan. Of course, if you have questions, this is a good place to ask. Stay the course. Tom

Taxmeless (oh I do love that name!), I would stay at the Mayo to get a definite rule-out of the surgery situation. I'd get an opinion from a thoracic surgeon and a radiation oncologist, particularly as concerns the possibility of using new radiation techniques (click on the question - what are the different types of EBRTs). It may be possible to access one or several nodes using these techniques with radiation and to get a good opinion, you'll need to have a very experienced radiation oncologist. If surgery or cyber surgery is ruled out, then your treatment falls into the category of "standard of care". This care takes the form of "everybody gets one" to be non-technical. In reality, it is a combination of drugs and or radiation that has been shown by large population studies to be most effective at eliminating or stopping your disease. These standards have lines -- first line is the first care routine (drugs and or radiation), the second line is normally only drugs (perhaps a different recipe), the third line and etc. After my surgery, I went to third line therapy when the cancer metastasized to my remaining lung. But, it worked. Since first line standard of care is pretty standard, I'd have it at a small clinic near my home. I'd even expect second line treatment because lung cancer is persistant. I would undergo second line care at my local clinic. I would keep contact with a seasoned oncologist at Mayo for a third line care assessment. At third line and beyond, the intuition and experience of the medical oncologist become very important and the Mayo guys are likely to have that level of experience. My you ask tough questions: my challenges physically over 13 years of surviving lung cancer? During chemo, my white counts would drop very low and a cold would turn into a pneumonia at the drop of a hat. (another reason for getting first and second line treatments near your home - aircraft exposure) Still, as a one lung survivor, a chest cold is an experience to endure. It puts me down quickly and for a long time. What challenges did I face during treatment? My troubling side effect from Taxol and Carboplatin was intense arthritic-like joint pain. It is not a common side effect but a known side effect and it was three days of burning pain in every joint in my body. Obviously moving during this period was difficult and I needed heavy drugs to survive the encounter but narcotic medication (fentanyl patches and lidocaine patches for temporary relief) compounded my chemo side effects. Most people do not get this type of side effect from chemo and there are alternative drugs now that are just as effective but cause fewer side effects. So joint pain during treatment was my troubling time. And of course, my most bothersome situation during treatment was waiting for scan results. It bother me so much, I wrote a book about it -- Scanziety. My last treatment was a cyberknife procedure in early March 2007 but I still see my oncologist two times a year -- recall, lung cancer is persistant. We don't use the "c" word or cure word in the lung cancer community but we strive for NED -- no evidence of disease. That is what I've been since March 2007 but have had some scary scans that looked like reoccurrence. No I did not have lymph nodes that were cancerous. My tumors were in my right main stem bronchus and then after my right lung was removed, I developed three tumors in my left lung. I do know many who've had both tumors in the lung and lymph nodes and some of these folks had CyberKnife-like treatments to attend to the nodes. That is why I suggest it as a combination therapy with first line treatment. I've know many who've had affected nodes that were addressed with conventional first and second line treatments. And, if you have adenocarcinoma and if your biopsy displays certain genetic markers, you may be a candidate for targeted therapy. Even if you don't have adenocarcinoma, there are many advances in immunotherapy that address Squamous cell lung cancer, my type. So, let's find out what your biopsy reveals and proceed from there. Stay the course. Tom

Taxmeless (I love that name BTW!), You've got a lot on your mind with a biopsy tomorrow, so I'll be brief. Stage IIIA is very treatable and survivable. I was diagnosed Stage IIIB 13 years ago. If Stage IIIA, you might have a favorable surgery situation. You might be a candidate for CyberKnife surgery in two locations. Or a combination of surgery and CyberKnife. So nothing is off the table treatment wise, in my opinion. Relax. Try and get some rest. We'll know more tomorrow afternoon. Stay the course. Tom

Jeff, Welcome here. I'm also a vet but live in Texas and can't comment on the Tampa VA hospital. My experience with the VA suggests once one reaches a hospital, the care is superb. The problem is navigating all of the administration to get an admission and get in line for treatment. As a Vietnam veteran, especially exposed to agent orange, you ought to have one of the highest priorities for treatment. So, perhaps your wait won't be long and the process won't be so involved. You'll likely have many more questions. From your description of tumors, I note right lung, lower lobe and one paratracheal lymph node. Next step will likely be a biopsy to determine the type of cancer. From your description, you might stage at IIIA. Here is information on lung cancer staging. If so, your cancer is very treatable. I was staged as IIIB thirteen years ago and I'm still around. You'll likely have more questions and this is a good place to ask, so fire away. Good job in rescuing your dog! Stay the course. Tom

Lbelle, I join others to suggest you've got plenty of time for a second opinion. Bridget said it best -- you need to be comfortable with your surgeon, bedside manner and all things considered. Take your time, get a doctor you trust, and.... Stay the course. Tom

Snickpea, Again recall I am not a doctor. This is her first PET scan and everyone metabolizes differently. But in the impressions, anywhere you see the word hypermetabolic, there is a high probability of metastatic cancer. From this report, I would conclude she has metastatic cancer in both lungs, two places in her spine and her femur. The next step is a pathology determination of the type of cancer so a treatment plan can be organized. The test sample or samples will likely require a biopsy. So, if you are looking for good news, you'll not find it in this report. But, I've read my PET reports with the same kind of language (except for bone involvement) and I'm still here. I had one of the first PET scans administered in the Dallas metroplex and my oncologist and I read the report together because it was new technology. I saw a lot of references to hypermetabolic and that is how I discovered what the term meant. Once we get the biopsy results, we'll know a lot more about the road ahead. Stay the course. Tom

Mel, Welcome here. Susan gave a good answer about some things you may encounter. Here is some tips and tricks I published several years ago that might give you further insight into the journey. Age will complicate treatment and perhaps side effects, but I know eighty year old folks who are in treatment or who have successfully navigated treatment. So my idea is to meander around this site and realize there are a lot of late-stage-diagnosed lung-tenured survivors here. Your take away from that meander is that if we can live, so can your MIL. You'll have questions and this is a good place to ask. We are not doctors but have a wealth of experience about surviving lung cancer. Stay the course. Tom

Melissa, I gave you my surgical complications in an another discussion forum answer. I wouldn't know how atrial fibrillation is related to a surgery. As my mom aged, she acquired it one day. Blood clots, in my case, a pulmonary embolism was a side effect of one of my surgeries. These seem to pair because I suppose the pulmonary system is stressed by surgery and recovery (my guess - not a doctor). If she has a single tumor and negative lymph nodes, that is very good news. It is likely a Stage I, early find and surgery ought to do the trick. I hope she recovers quickly. Stay the course. Tom

Jeff, Sixty-six, Nam Vet, engineer, retired. Welcome aboard. Stay the course. Tom

Melissa, Oh my, your mother has a lot going on. My complications were surgical in nature. Because I had pre-surgery radiation, the healing capability for my respiratory system was markedly reduced. I had a bronchopleural fistula -- from ruptured sutures -- and two surgeries to correct that problem. I also suffered a pulmonary embolism after the 2nd surgery that complicated things. I do not have AFIB nor did I have edema. Others I know have had that symptom and draining the fluid was a difficult procedure. I hope things turn around for her quickly. Stay the course. Tom

Erik, You are right to further consult with your VA team if the x-ray report said "solitary pulmonary node." I'd want to know, especially if an August x-ray reported nothing. I'm confused a bit from what your doctor said and the report. He said a number of items and the report said solitary. That discrepancy alone is worth running down. Welcome here and. Stay the course. Tom

Snickpea, I saw the para-aortic node comment and took it to mean an enlargement of one of the para-aortic lymph nodes located in the abdomen. Cancer could cause such an enlargement but so could many other things. More commonly in lung cancer, lymph nodes near the lungs display signs of cancer (enlargement) and the CT scan didn't report on any of them. It would be unusual, but not impossible, to have a para-aortic lymph node metastasis without lymph nodes near the lungs being similarly affected. But, recall I'm not a doctor. The IMPRESSION statement is focused at only the left lung. The nodules in the right lung and the para-aortic lymph node are anatomical reports but note they are not included in the impression statement. Monday's PET scan will answer the uncertainty. Stay the course. Tom

Snickpea, I am not a doctor but the the IMPRESSION of the report tells the whole story -- the scan reveals tissue growth that is "highly suspicious for malignancy." The recommendation for a PET scan or tissue sample confirms suspicion for malignancy. My reading of the report suggests growths in both the left (2 large) and right (3 nodules) lungs. Her PET scan will confirm malignancy in the lung and check for malignancy elsewhere. If the nodules in her right lung are confirmed as malignant, then your mom will likely be diagnosed with Stage IV lung cancer. You can read about lung cancer staging here. If the nodules in her right lung are deemed not malignant, then she may be diagnosed as Stage III lung cancer. So the PET will tell some of the story but not enough to treat her. Before a treatment plan can be devised, your mom will need to have a pathology examination of the tissue that constitutes the reported masses and perhaps nodules. There are a number of ways this tissue sample can be obtained but I'd guess a needle biopsy is the likely vehicle. The pathology examination will yield the type of lung cancer. You can read about lung cancer types here. You had a really quick turn around from CT to results revealed. You'll likely know by the middle of next week the extent of metastatic activity. Then your mom will likely be scheduled for a biopsy. This is a non complicated surgical procedure done with very low risk. It is performed normally by thoracic surgeons or interventional radiologists. Here is relevant information on how biopsies are performed. So, where do you go from here. You are in the portion of treatment we informally call the typing and staging trail. Your mom will undergo tests and results will trickle in. The waiting can be maddening. So, I'd suggest she use the time to read about lung cancer. Like most patients or family members, the first bit of reading will be on survival statistics. Before you Google them, read this. Many of us here have what we call late stage diagnosis -- Stage III or IV -- and we are still here. If we can live, so can your mom. How does one survive? Here are my suggestions. You'll have many more questions. It is good you are being proactive and helping your mother understand. You are fulfilling a vital role of caretaker and that role will expand and become vastly more important as your mom progresses through treatment. My best recommendation is have your mom join us here on the forum. Some however are reluctant and I completely understand why so perhaps you can read into the disease and tell your mom what you've learned. One final bit of advice. When the typing and staging trail ends, there will be a very important consultation with a medical oncologist. Ensure someone attends that session with your mother. My lung cancer diagnosis was a frightening experience and my wife asked the questions while I watched the office wall clock. Stay the course. Tom

Lbelle, Reading Bridget's sage advice, i forgot about the importance of sleeping elevated after surgery. Go to a mattress store and audition several for fit and comfort (you may find you need two 15 degree wedge pillows). Record the name and model number, then order online for a substantial cost savings. You may also need an array of firm pillows to be comfortable in your bed after surgery. You want to transfer as much upper body weight as possible to your hips. I spent the first week after discharge sleeping in my chair recliner. My experience was 12 years ago and I've forgotten some of the basics. We now own an electric adjustable bed with a high density foam mattress and these are wonderful! On the chest tube, ask your surgeon at your before surgery consultation if you are likely to be discharged with a chest tube. If so, they have models that can be worn on a sling across your body so they hang between your arm and chest. This type can also be emptied by you when filled. It was called a mobile chest drainage receptacle. Stay the course. Tom

I am a capitalist! I firmly believe profit is a reward for good performance and indeed it is an expected reward. Nothing is more important in business than making a profit. Nothing! My purpose for writing this is to acquaint you with a new type of business on the lung cancer scene — a for profit advocacy company. That’s right, companies have been formed to advocate for and sustain those in lung cancer treatment and expect to earn a profit -- off us! Let that sink in for a moment. Why a for profit seeking venture for lung cancer? Our disease kills three times more than any other type of cancer. Research into breast cancer is making the “pink ribbon” disease a declining market. And, perhaps lung cancer is finally getting a research break with the emergence of targeted therapy and advances in immunotherapy for types of non-small cell lung cancer. Investment capital necessary to start the profit engine sees a growth opportunity -- from us! Let’s get down to business by creating 2 companies: call them Non Profit and For Profit. Both have a revenue projection of $1,000. Non Profit gets revenue from donations; For Profit from sales. For Profit has a 20-percent profit expectation. Non Profit has none. Non Profit can spend all of its revenue — $1,000 — advocating for us. For Profit can only spend $800. Twenty percent of its revenue must be profit. From the eye of the lung cancer patient and survivor, which company is more efficient and effective. If dollars spent advocating and supporting are the measure, clearly Non Profit. That is the business case, but there is a more important case at hand. For profit companies are establishing a business that makes money from our malady, our pain, our side-effects, our recurrences, our suffering. They are not selling drugs or providing treatment, they are advocating, for profit -- on us! You might want do a little checking before establishing a relationship with a new guy on the block. Rest assured, LUNGevity remains a Non Profit. Private message me for details. Be careful out there! Stay the course.

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