Tom Galli

Oh my! This is not good news. "What can you do?" Lock, load and proceed deliberately down range to engage and kill your lung cancer. More than 18 years ago, I was guessing I didn't have 6 months. Thankfully today, we have precision treatment methods that reduce the guess work. Stay the course. Tom

Lori, Welcome here. Sadly, I am very acquainted with pulmonary nodules. First and foremost, most are not lung cancer. Here is my go-to-resource about pulmonary nodules. I'm only scanned yearly now but I have "phantom" nodules. They wax and wane scan after scan and the only way I retain sanity is to map them on a spreadsheet using the radiologist report description. I also always get a paper copy of all test results including radiologist interpretations of scans. I keep these copies as reference and thereby add precision and understanding to bolster my declining memory. Some folks post the actual language of the radiologist interpretation of scans on this forum so we can help you understand the meaning. We are not doctors but have acquired a lot of knowledge about the obtuse language in CT and PET scan reports. To your question, would a CT Angiogram for coronary disease be able to pick up nodules if present on a previous scan? Maybe. Anatomically, I would think the scan might capture the left lung, particularly the upper lobe. If your nodules are in the right lung or left lower lobe, then perhaps they wouldn't show. Most important, know that pulmonary nodules are not conclusively indicators for lung cancer. Only a tissue biopsy can confirm our disease. There are other plausible explanations for shortness of breath, chest pain and heart rate swings. I hope this helps with the insight. Stay the course. Tom

Marylou, I'm happy you are up and about. It might take some time to get used to your change in respiration mechanics but you'll be breathing like normal in no time. Very happy you've posted your surgical experience to allay the concerns of our members. Stay the course. Tom

Kevin, I've had 18 infusions of Taxol and Carboplatin. The first 6 were "understrength" and done in conjunction with conventional radiation. I only lost gray hair and looked 10 years younger after treatment! But the last 12 were high-test formulation, and my hair departed about a week after first infusion. I considered hair loss to be a small problem compared to therapeutic results--cancer cells were killed. My hair started growing back about a month after my last treatment. I hope your mom's treatment arrests her lung cancer. Stay the course. Tom

Lizzy, We all face this reality. Life has two certainties: it begins and ends. The length between for us tends to be shorter. When it is my time, I hope to face it with the grace and dignity you've displayed. It has been a distinct pleasure to have made your acquaintance. I pray for your peace. Stay the course. Tom

With the brain met finding, book a consultation with a radiation oncologist. This discipline can fry the met with little or no effect to brain function. Stay the course. Tom

Sabin, Do I have insight about controlling one's thoughts about life duration? I went down that path during treatment and it caused a deep depression. So I compounded my problem set. Now I just focus on living in the day. I neither morn the past nor worry about the future. I have some control about actions and activity each day and that is the extent of my focus. But, I didn't magically develop this narrow focus. I had therapeutic help. One of the benefits of this site is to learn from other's experience. My experience suggests you've got enough to worry about with treatment and side effects. Adding an uncertain and unknowable future to that load was too much for me. What are your GI side effects? I had a similar medication called Tarceva during my 4th line therapy. My side effects were a horrible case of face, head and neck acne and diarrhea. There was nothing I could do about the former, but I reduced the GI distress by starting my day with a bowl of plain steamed rice. I also used medication but medication alone didn't help. The rice worked but ensure it is not the "converted" type and for me, it had to be the first thing I ate. Stay the course. Tom

Gautham, Welcome here. Sometimes there are good chocolates in the box and one is fortunate to enjoy them. Indeed one never knows what future life challenges will be encountered. But, and thankfully, these days we know a great deal more about treating lung cancer and your immunotherapy treatment, Keytruda, is a very effective method indeed. I know so many survivors with Stage IV diagnosis who've had Keytruda and are now no evidence of disease (NED), our gold standard of therapy. Keyturda is so effective, folks are even moving away from need for the drug after the immune system becomes trained. @Lisa Haines is one of those folks. There are many more. Stay the course. Tom

Salem, Cisplatin and Etoposide is the standard of care treatment for SCLC. I've not heard of anyone with NSCLC receiving this combination. Here is more information about the chemotherapy your dad will receive. Stay the course. Tom

You might indeed have an infection. We won’t know until biopsy results are in. Good plan on selecting a med onc in Boston. The whole city has world class physicians. Stay the course. Tom

Oh my! Small cell on top of kidney problems, occluded arteries, CIOPD, and a history of heart disease, your father has a hard row to hoe! First on radiation: my fractional radiation experience was a piece of cake till week 3. Then treatment irritation caused a dry, constant cough and I became extremely fatigued. By the 5th week of radiation, my energy was so affected, I could hardly get out of bed. So expect throat irritation, especially because the trachea is involved, and fatigue. Honey is said to be a good short term remedy, but I survived on Halls citrus-flavored cough drops. I'd buy them on line in large bags. He'll likely have one in his mouth every waking hour. Most importantly, expect radiation to work! It should eviscerate the trachea tumor. On your wedding date, I believe family celebrations are extremely important. I'd suggest a compromise solution. Get married with a service soonest, then have your wedding reception in August. Your dad ought to have enough energy to walk you down the aisle now and extending say through June and the preacher or priest surely will understand and cooperate with your request. He might feel good enough to attend the reception in August or perhaps he'll be able to make a cameo appearance but you'll have the memory of your dad giving you away and the photographs to memorialize the occasion. I don't see anything wrong with starting with the GP about rectal bleeding. An advantage of this approach is your dad's GP will or should have an understanding of your dad's medical history and a new gastroenterologist might not. Welcome here. I do hope your dad's treatment arrests his lung cancer. Stay the course. Tom

Phil, Welcome here. In 2004, I was diagnoses with squamous cell, non small cell carcinoma, and my first treatment was chemotherapy paired with radiation. What was my experience? I've answered that questions so many times, I placed my response here. Your first chemo session will likely be a long one and the nurse administering your therapy will (should) spend a great deal of time explaining side effects and mitigation methods. I was so nervous, I forgot the explanation. The first session might be a good time to bring a family member to be a "second set of ears". Depending on the infused drugs, you may be given prescriptions for medication used to minimize common side effects. Get that filled right away. Don't wait until you are experiencing symptoms to head to the pharmacy. My most remembered complaint was IV insertion. I got stuck often and during my second and third lines of chemotherapy (line = a 3-week cycle of 6 infusions), my veins refused to cooperate. If you experience this problem, ask for a port. But, the best thing I can report about chemotherapy is you've found a place where you can ask answers and likely receive answers at say 3 am--here! You are starting on a treatment that I had in 2004. I had nearly 3 years of constant treatment to eliminate my lung cancer. The most important message I have for you is if I can live, so can you. Stay the course. Tom

Sajid, Does your wife's expression of PD-L1 at 70 to 80-percent indicate suitability for immunotherapy? The answer is complicated. Those with the EGFR mutation, and perhaps the L858R version, tend not to do well on immunotherapy. Why? Here is but one citation that "explains" the issue (warning--scientific literature complexity). So we are offering our best hope for success on Gefitinib. Stay the course. Tom

Salem, The term metastatic means your dad's body has multiple areas of cancer. Here is the Wikipedia definition. So yes, Stage IIIB means your dad has cancer that has spread (metastasized) to regional (mediastinal) lymph nodes. But, as I read the report, your dad's cancer is unusual in that a "primary tumor" (the first or initial tumor) was not found or identified in a lung. While unusual, it happens infrequently. Staging cancer is a one-time event--at diagnosis. The stage is used to indicate or delineate if surgery or cyber surgery (radio surgery) can safely be performed. Since your dad has 3 lymph nodes involved, cancer cells are presumed to be within his lymphatic system. Therefore, surgical removal would not help because a tumor would very likely occur in some other place after surgery. Your dad's chemo radiation is a first line standard of care in the US and Canada. Hopefully, he is "one and done." Stay the course. Tom

Salem, Is having an SUV this high bad? Yes. Normally, any SUV over 4 is presumed to be metastatic cancer. Your dad's report indicates 3 nodules (2.9, 2.5, and 4.4 cm) with SUVs well above 4. Moreover, the IMPRESSION paragraph indicates the previously described mediastinal adenopathy (swollen lymph node) has progressed. That means a previous scan likely described swollen lymph node or nodes in the mediastinal area and this PET scan indicates the same node or nodes have become further enlarged. This enlargement also points to metastatic cancer. The PET speaks to finding metastatic disease in the mediastinal region (the area between the lungs containing the heart, trachea and esophagus). Also noted is a small pericardial effusion but that did not yield SUV. SUV means standard uptake value. It is a measurement index that represents the rate of metabolic activity of the body's cells. Normal metabolic activity yields a SUV of between say 2 and 2.5. From 2.5 to less than 4, the activity may be metastatic or could be explained by an another cause--perhaps inflammation from an infection. SUVs above 4 point to cells containing metastatic cancer. The report uses the term "FDG avid." FDG means fluorodeoxyglucose. This is the very slightly radioactive tagged glucose that was infused into your dad shortly before the test. Avid, in a medical sense, means tissue having an affinity for glucose. Since cancer cells have a metabolic rate far higher than normal cells, they seek glucose. When one fasts before the test and when glucose is introduced intravenously, the cancer cells demand more than normal cells. This concentration of FDG avid cells makes a radioactive tag that is captured by the scan. The scan depicts high SUV as bright spots and the magnitude of brightness is what is measured and reported as a SUV. Radiologists use the unofficial term--light up-- to indicate where SUV is high. Strangely, there is nothing affected but mediastinal lymph nodes. The test did not show nodules, lesions or a mass in the lungs, other lymph nodes in the chest, or any abdominopelvic (stomach, liver, intestines, and other) organs. The cervical area is also clear. I recall your April post reporting the biopsy of 2 lymph nodes reporting as adenocarcinoma. So, in summary, your dad has metastatic non small cell adenocarcinoma lung cancer in three identified areas of his body. I hope this explanation helps. I'm sorry I had to give it. Stay the course. Tom

Sajid, Weight loss during lung cancer treatment is something to be concerned about. Your wife’s targeted therapy may be suppressing her appetite. I’d inform her doctor. I had another type of targeted therapy, Tarceva, as a combination with Taxol and Carboplatin. This affected my taste sensation and I lost my appetite. When my weight started to drop, my wife (a dietitian) read that mint flavoring might amp my appetite. It did and I lived on 3 meals of chocolate mint ice cream till my taste returned to normal. Calories count during cancer treatment. Stay the course. Tom.

Aus, Welcome here and sorry to learn of you father's diagnosis and treatment difficulties. To your questions: has anyone switched immunotherapies? Yes but I'm not sure I could characterize the results. Are all mutations generally tested for? Again, in the US yes. And from your description, with your dad's PD-L1 expression and lack of targeted therapy markers, his immunotherapy treatment was an appropriate approach. My advice? I'm mindful of your report on WBRT and the continued activity of the brain met. That is concerning. If it were me, I'd explore if precision radiation techniques (SBRT. IMRT, CyberKnife and others) might zap that uncooperative met, but he's already had a significant amount of brain radiation so that may not be possible. Moreover, there is your statement about minor progression in other parts of your dad's body. Thinking outside the box, you might find a radiation oncologist who could be convinced to perform "multi-focal" precision radiation on all active mets to take them off the table. In the US, that treatment would be "outside the range of standard of care" but it is a possible avenue. I'm not sure your medical treatment protocol would allow that kind of treatment. Perhaps you might suggest that precision radiation be used as palliative care to avoid restrictions on curative methods in your medical system. I am partial to radiation as a treatment method. It was my "last chance" method and it worked! I wish I had better information. Stay the course. Tom

Kamoto, My thoughts on your scan? In truth, not good but I've seen worse. My first one was a zinger! That was 18 years ago and I'm still here. You've landed on stop one of our diagnostic trail. After your pulmonologist visit, you'll likely go further down the trail with a PET scan, perhaps a brain MRI, and then a biopsy. To prepare, give this a read. Once this process is concluded, you'll have a treatment plan and here is where I take issue with your statement about hope. Had I read your scan 5 to 8 years ago, I'd agree with your projection. Now, I substantially disagree because of two advances that have moved the survival curve in lung cancer: targeted therapy and immunotherapy. When you go further down the biopsy trail, ensure you tell your physician to have your biopsy sample sent for laboratory testing to show suitability for these new and very effective systemic treatment means. This type of testing, called biomarker testing, is becoming a standard of care but sometimes it is overlooked. Ensure your's is not! While your pulmonologist is well equipped to shepherd you through the diagnosis trail, it is time to audition a medical oncologist to segue into treatment. Find one that is well acquainted with new therapies. And while Bozeman and its environs are beautiful (and a fly fishing mecca that I relish), it may not have the medical oncology sophistication to devise a suitable and effective systemic treatment plan. I suggest finding a medical oncologist in a sophisticated cancer treatment hospital like those in Salt Lake City, Denver and perhaps Boise, ID. Once your systemic treatment plan is designed, you'll be able to be treated close to home, but your key to survival may be these new therapies and to unlock them, you may need to travel. Also, broker a consultation with a radiation oncologist. This discipline uses ionizing radiation to eradicate tumors and your first treatment may indeed be a combination of radiation and chemotherapy often called "chemo-radiation." in our community. Here is some insight into radiation used as a lung cancer treatment method. Welcome here. Your largest challenge is to assimilate a new vocabulary of unpronounceable drug names and obtuse procedures. We'll help you with that, so ask us questions. And about hope--it is a good thing! Stay the course. Tom

Lily, Statistics is a complicated discipline understood by few of us these days. Obviously, you've been trained and understand. Thank you for this comprehensive explanation to our community. Indeed, don't live as a statistic. Numbers are precise; they mean one thing. Statistics use numbers to add veracity to uncertainty. The result is misunderstanding and despair. Aim for life enjoyed every day. Funny, I've never seen a statistical projection for joy! Stay the course. Tom

KF1, Oh my! I didn't realize your wife's extent of brain mets. Hopefully, radiation did most of the elimination and Tabrecta will keep recurrence down. Most of us with lung cancer have PD-L1 expression in biomarker results. It is (or was) an indicator of immunotherapy effectiveness. I'm not sure how accurate it is these days. Stay the course. Tom

Kelvin, I'm mindful that you participate in the Canadian medical system and that system's standards of care sometimes differ from the US. My first line treatment, like Judy, was 6 weekly infusions of Taxol and Carboplatin and 30 (M-F) sessions of fractional radiation. This type of treatment is often called chemo-radiation these days. In 2004, that was the first-line standard of care for non surgically treated non small cell, squamous cell, lung cancer. Ironically, I didn't lose my hair during first line treatment. My oncologist explained chemo is less potent in first-line chemo-radiation than that given when treatment is chemo alone. Radiation was the tumor killing therapy. The chemo's purpose was to sweep the blood and lymphatic system of stray cells that avoided the "death rays" of medical radiation. But, after my first infusion of the real stuff in my third line treatment, my hair came out in clumps a couple of days after the infusion. I can positively affirm that hair loss is temporary but old-age is now interfering with the process! Stay the course. Tom

CH, I'm happy to learn your husband's treatment is moving things in the right direction. That is grand good news. Of course your husband is tired if working. I worked through 12 of my infusions and was exhausted. I also experienced times where my red and white cell counts were low and indeed received Procrit for the red and Neulasta for the white. Neulasta was very painful but both worked. Stay the course. Tom

Sajid, Your report on declining fluid does in fact suggest Gefitinib is working--great news! O2 saturation between 95 and 98-percent is indeed good. So I'm glad things are moving in the right direction. I'm not a doctor but I do have a morning cough, especially in the spring with increasing pollen. It also presents like something stuck in the middle of my chest and wanes after midday. I believe this symptom occurs because of congestion that happens during my evening sleep. I often accelerate the process of dealing with it by starting my day with a long, steamy shower. As to how long Gefitinib keeps working, I just hope it keeps working. And yes, perhaps another targeted therapy for EGFR but let's keep things in prospective. Each day Gefitinib works is another day of life. Live in the day. Find joy in each day. Rejoice about the small victories you are having together. Stay the course. Tom

Kevin, Welcome here! First some hope: I was diagnosed with Stage IIIB NSCLC in February 2004. I had every form of treatment except immunotherapy and every treatment save the last failed. But, if I can live, so can your wife. Immunotherapy and targeted therapy as systemic treatment methods are game changers in lung cancer treatment, and biomarker results should point to one or both as suitable methods. Many subtypes of adenocarcinoma respond well to both. The cranial precision radiation should be effective. My last treatment, the one that worked, was precision radiation (CyberKnife--a form of SBRT) to a reluctant tumor in my remaining lung. However, my systemic therapy (chemotherapy) was iterations of Taxol and Carboplatin, almost the only formulations available at that time. Thankfully systemic therapy treatments and outcomes have really advanced. One of our members, Lisa Haines, had the same diagnostic path as your wife. Brain metastasis symptoms were her first indication, then she had precision cranial radiation, and following immunotherapy. Now she is NED--no evidence of disease! One suggestion for your forthcoming oncology consultation. If infused chemotherapy is a proposed treatment plan, I suggest (strongly) you request a port to eliminate the storm of IV assaults on your wife. Doubtless, you'll have more questions as a treatment plan is devised and this is a good place for answers. While we are not physicians, we have unparalleled experience as lung cancer patients and survivors. Stay the course. Tom

Walfredo, I think the most important words on your report are "negative for malignancy". The disclaimer-like words added with Dr. Glidden's review don't add anything concerning to me. Of course, the biopsy sample is the only thing this report attends to and there could be other malignant areas. But that is always the case. Often with our disease we don't get definitive results or conclusive reports. If you feel that is the case, then ask your doctor to enroll you in a time-phased screening program where a CT scan is administered say once per quarter and changes can be tracked over time. As to the results on this report, negative for malignancy is a wonderful outcome in our community. Stay the course. Tom