Tom Galli

Gina, Normally (if the word even applies to lung cancer) one has a CT and a brain scan (MRI) as imaging diagnostics prior to first treatment. It would not be unusual to have a CT that covers from neck to pelvis. When I was diagnosed, a special CT of the head with contrast was used to perform a "brain scan". Now MRI technology is almost universally used to screen for brain metastasis (we say brain mets). Sometimes a PET scan is included in the scan regime. More often, a PET scan is administered at the end of first line treatment (first treatment. Here is information on imaging tests used in diagnosing and screening for lung cancer. Welcome here. Stay the course. Tom

Lost, Extensive stage small cell lung cancer is a beast. The first best chance of affecting outcomes is successful first line treatment and your post reported that treatment was not successful. Your report of pain management and palliative care implies hospice care. While no one can predict the amount of remaining life, in the US, hospice care is not provided unless one has a projection of 6 months or less remaining life. I wouldn't know what the Irish standard is. I do however strongly endorse hospice care because end-stage lung cancer can be a very painful experience. Here is some information about hospice care. What should you be planning for your mother's practical support? When I failed my 4th line treatment and was investigating hospice, I planned to rent a hospital bed (an articulating bed to allow head elevation) and bed-side toilet accommodations. I also investigated the availability of rented portable oxygen equipment and an IV stand. If your mom has a tablet device or an iPad, you might want to investigate getting an articulating stand (Amazon link) so she can use the device without needing to hold it. You should all be together, my view, during Christmas. This should be a joyful time of sharing family memories. Eating might be a problem but if not, I'd plan a grand Christmas feast with all the trimmings. Sometimes taste buds change with medications given in hospice and tartness or bitterness can become desired. Treats with lemon or lime flavor or dark chocolate might be especially appreciated. I am a man of faith and planned to attend to my spiritual needs. Your mother may find comfort in her faith so I'd arrange regular visits from the clergy to support and sustain her. My hope is for your mother to enjoy life right up to its end. Stay the course. Tom

MzShanon, Oh my! Insurance problems are not the complication we'd like right now. Pleural effusions occur because the lining between the outer lung wall and the inside chest wall is irritated. Cancer can be the irritation but there are other causes. Your mom may have cancer, but cancer might not be the irritation causing the effusion. If the effusion is affecting your mom's ability to breathe or if it is causing pain during breathing, a stent can be positioned to drain the effusion into the abdominal cavity. You might want to engage her new GP in a discussion of alternatives to address the effects of the effusion. Perhaps the GP and oncologist are in an affiliated practice. If so, then the GP might check if biopsy results are posted to your mom's medical record and if they are, the GP would be able to discuss, in a general sense, the type and stage of lung cancer. You didn't mention a CT scan of the chest in your first post, and perhaps the hospital did not perform one. Moreover, it is general protocol to screen for brain metastasis before starting treatment using an MRI. Accordingly, the GP might order a chest CT and brain MRI so these results would be available to the oncologist on November 15. I strongly recommend a COVID booster and a senior flu shot. Getting either while in cancer treatment is a nightmare best avoided. Stay the course. Tom

MzShanon, Welcome here. Here is information about the thoracentesis procedure as a diagnostic method for lung cancer (click the right arrow ahead of Thoracentesis). The biopsy of the fluid will disclose the type of lung cancer and here is information about lung cancer types. Deducing a type is important because each type of lung cancer had a different treatment method. You might also received information on biomarker testing of the thoracentesis fluid. This is also important because biomarkers will tell if systemic treatment methods called targeted therapy or immunotherapy are available. These relatively new treatment methods have dramatically moved the survival curve in our disease. As Lou states, when you received more information about your mom's diagnosis and if you have questions, this is the place for answers. Stay the course. Tom

Judy, What a wonderful post! It is full of hope and really demonstrates the impact of newly introduced treatments. Isn't NED neat? So I'm a die hard Phillies and Eagles fan. I was born and raised in Philly but stayed a loyal fan while the Army sent me here, there, and everywhere. I live in a Dallas suburb, and my neighbors do not appreciate my protestations of their vaunted Cowboys. So I'm in full agreement with your wise and learned physician. He's rooting for the right teams and teeing up the best treatments for you! I'm betting your PET/CT Halloween reveal is a NED treat! Stay the course. Tom

LJH, Welcome here. Lou's pointed you toward Lung Cancer 101 and I do recommend you read it. But, temper your reading with this understanding: you may not have lung cancer. Lung nodules of the type you describe can be caused by other maladies. Here is my go to resource on lung nodules. You will note nodules occur for lots of reasons including infections, and your long tenured sore throat might be an infection indicator. Indeed, one of your physicians might put you on a board spectrum antibiotic to treat both the throat and perhaps irritation and inflammation in the lung that might be producing your nodules. Why can't they perform a PET scan? PET scans are not normally reliable indicators of metastatic activity for nodules. PET results at this juncture might just confuse the diagnostic process. We are looking for certainty and certainty for lung cancer only results from a biopsy. A 16mm nodule should be a large enough target for a needle biopsy, but why risk an interventional procedure until other non-interventional means play out. In your case, that is a repeat CT. If the next CT shows no growth in the nodules, you should begin to relax. Then you are likely be put on a scheduled scan to ensure stability. I know, the wait and not knowing are maddening! Believe me, we've all been there. But, I am really hoping your nodules are not lung cancer. If they are, you'll benefit from an early find. Everything is confined to the right lung and its lower lobe. There are a whole range of curative procedures including surgery and precision radiation that could make your lung cancer treatment an inconvenient bump in your road of life. You are right about asking questions and your ammunition for terribly perceptive questions is contained in Lung Cancer 101. OBTW--I was fortunate to be stationed in Seattle two times during my Army career. I miss with a passion Ivar's Fish and Chips and Anthony's Home Port planked salmon. Stay the course. Tom

Welcome Geoff! Freaking out seems par for the course in our community. We have a scan and life changes, filled with a strange technical language almost no one understands. My best advice is to learn everything you can about this disease so you can ask terribly preceptive questions to your doctors. Here is where you can make a good start. As for questions, tee them up. We are not physicians but understand this disease in a way few physicians appreciate. Stay the course. Tom

Carrie, Welcome. We've lots of folks from Canada and BC in particular. On nodules and their location, I haven't read anything about an anatomical location and lung cancer nodules. Nodules are tricky. After nearly 18 years of survivorship, I have what I call phantom nodules. They show on one scan then disappear on the next. I track them on a spreadsheet to keep my sanity. Here is the place that explained pulmonary nodules and their multitude of causes the best. Note, most pulmonary nodules are not lung cancer, fortunately. I conclude there is a visible difference on an image; nodular opacity is a circumscribed shadow while ground glass opacity appears white or frosted. Causes however are similar. Here are definitions: Nodular Opacity: "a solitary, round, circumscribed shadow found in the lung...causes include granuloma, primary or secondary carcinoma, benign tumor, vascular malformation." Ground Glass Opacity (GGO): a normally dark area of the lung now looks white or frosted. There are many causes including infection, fluid, blood, inflammation, scaring or cancer. Nodules greater than 10mm should be biopsied or removed? I'm not sure I agree that size alone is the governing factor. Lung nodules are a relatively recent phenomena. They don't show on x-rays; CT technology was the discovery method. Here is a 2019 paper that focuses on approaches to and management of lung nodules. Note in particular the information in the "Nodule size" paragraph. This information is complied from a high-lung cancer-risk population and suggests nodules below 6mm are "acceptably low cancer risk" while a nodule >8mm represents risk. But nodules size alone is not the key indicator; it is change in nodule size, particularly increasing nodule size that is of concern. That is why many of us with nodules on scans often need to endure repetitive scans. I've had a multitude and waiting for results produced Scanziety! I would say that a single scan showing two irregular adjacent opacities of 12mm and 16mm would yield exactly what your doctor suggests--a repeat scan. I do hope your next scan shows no change in your nodules or that they simply disappear! Stay the course. Tom

Kelvin, Oh boy, Stage 3B and first-line chemo-radiation with immunotherapy was a good plan. Without immunotherapy, I wonder. The good part of the first-line plan was radiation. Radiation is the killer and it destroys tumor cells (really all cells). The adjuvant chemotherapy is supposed to sweep the blood stream and lymphatic system of stray blood cells. When I had the same first-line treatment, I had 6 rounds of chemotherapy with radiation. Immunotherapy perhaps substituted for additional conventional chemotherapy. Did your mom have a biopsy and was that biopsy tested at a laboratory for biomarkers? I assume so, but you didn't mention it. Normally biomarkers are identified to check for targeted therapy and immunotherapy suitability before treatment. We are crossing our fingers and toes for good scans in November. Stay the course. Tom

Oceanna, Welcome here. First on using bold, italics and underlined font. Notice the letters B I U S Tx at the top of the page where you write your post. These are the font control keys. When you left click on one of these letters, a gray rectangle appears around the letter. Then your text will reflect bold, italics, underlined, strikeout and etc. Left click again to return to normal font. Your post described the type of radiation you are having as "high dose focused radiation over 2-3 days". That sounds like precision radiation. There are two general types of radiation used to treat lung cancer: fractional radiation and precision radiation. The former breaks the whole dose into fraction and one receives that fractional does over a number of days. Generally, fractional radiation consists of 30 doses given Monday through Friday given over the span of 6 weeks. Precision radiation is a much higher dose given over very short periods at a very specific area. I had both and both are effective. Here is some more information on radiation used to treat lung cancer. CyberKnife is a type of stereotactic body radiation therapy (SBRT). More precisely, CyberKnife is a trade name coined by the maker of the machine used to delver the precision radiation. Think of SBRT as a car and CybefKnife as a Ford. I believe you are describing having radiation therapy prior to surgery and trying to decide which form of radiation you should have. I had fractional radiation (30 sessions of radiation, M-F, for 6 weeks) and weekly chemotherapy (Taxol and Carboplatin) before my surgery. This pre-surgical treatment is normally given together. The radiation attacks the tumor while the chemotherapy ensures all the cancer cells are swept up in the blood stream and lymphatic system. If your doctor is advising you to have this treatment, then you should consider chemo as a necessary part of the treatment. The object is to ensure there are no cancer cells floating around to cause a recurrence after your surgery. Stay the course. Tom

Welcome here. Michelle has sage advice on a second opinion and engaging with Doctors Liu, Lovly and Moganaki. You haven't given us information about mutations but I assume you have a laboratory analysis of your biopsy because you report combination chemotherapy including Keytruda--an immunotherapy drug. Your PD-L1 markers must have pointed to immunotherapy suitability. You report your tumors increased and sometimes those receiving immunotherapy (Keytruda) exhibit an increase attributed to swelling as the immunotherapy properties take hold. Michelle's mentioning Drew Moganaki opens up another possible treatment modality. Drew is a radiation oncologist and uses precision radiation (explained here) as a form of treatment. It may be possible for a radiation oncologist to eradicate the spots on your hip and perhaps your lung nodules using stereotactic body precision radiation therapy (SBRT). This holds the advantage of eliminating those spots while chemotherapy treats cells in the blood and lymphatic systems. I progressed to stage IV and SBRT "fried" a troublesome tumor in my left lung which allowed me a long period of extended life (nearly 18 years). This is called treating multi-focal tumors and this method is not a standard of care. That does not mean it is not effective. At this juncture, it is important to point out that there are two kinds of oncologists that treat us: medical oncologists and radiation oncologists. They use vastly different tools but both have very effective methods. If you seek a second opinion, include separate second opinion with a radiation oncologist about the possibility of treating multi-focal disease with precision radiation methods. A medical oncologist will likely not have insight into this method. There is a lady who has stage IV disease in our Forum and her only treatment is SBRT. Here is a blog about her experience. Stay the course. Tom

Kanbe, You have my sincere condolences. It is comforting to learn that hospice care benefited your mother. That is important knowledge. Stay the course. Tom

Sallyanne, I also had 30 treatments of fractional general radiation as part of my fist line therapy. And, I had many of the same symptoms that Judy and Pstar report. There is a possibility of permanent damage to tissues in your chest but it is a very small one. Your radiation oncologist would not have authorized this type of treatment if you had greater than a very small risk of permanent damage. Can it occur? Yes but most of us have difficulty swallowing, a dry cough, and pain breathing deeply. I also have "alligator skin" patches on my chest but I received my fractional radiation in 2004. Fortunately, equipment and methods have improved a great deal since then. I would recommend you continue with your treatment. Your objective is to kill any cancer cells that might start a metastasis to another part of your body and radiation is a sure kill "killing treatment method." You might start to feel very tired as you move into week 5 and 6 of your treatment. I recovered from this fatigue about a month after radiation was over. More questions? This is the place for answers. Stay the course. Tom

Lahalsa, Here is information about treatments for small cell lung cancer (SCLC). As an Extensive-stage patient, radiation may not be offered, but I'd ask. Limited-stage patients get fractional general radiation along with chemotherapy. But this type of radiation may not be able to cover all your metastatic sites. We have a form of radiation called stereotactic ablative radiation therapy or SABR. Please ensure you have a consultation with a radiation oncologist who is the expert in this method of treatment. Here is information on radiation used to treat SCKC. SCLC often moves to the brain so ensure you ask your radiation oncologist about a brain scan or MRI to rule out what we call brain mets. The normal course of chemotherapy treatment is 4 rounds of a platinum based drug (cisplatin or carboplatin) paired with etoposide. The time between each round varies based on the dose and extent of metastatic cancer. Your medical oncologist will direct your chemotherapy. An exciting new development in SCLC treatment is the use of immunotherapy. Often an immunotherapy drug is paired with platinum based and etoposide. Be sure to ask if immunotherapy is and available treatment method. When immunotherapy works, it works exceedingly well. Stay the course. Tom

Karyn, I know only 2 things for certain--I was born and I will die. When, I don't know. So I am "terminal" also. The only uncertainty in my certain knowledge is when. Eighteen years ago, when diagnosed, I had a lifespan projection of around 6 months! You mention hope and I recall the character Andy Dufresne's pronouncement in the movie Shawshank Redemption--"hope is a good thing and good things never die." Hope indeed is a good thing, and I hope your next scan does shows further reduction--heck--I hope for elimination. I've thought a lot about hope. Here and here are some of my musings on the topic. I understand your reluctance to discard carboplatin but as you say, it is powerful stuff and over time can do more harm than good. Maintenance therapy is a pretty established concept in lung cancer treatment today. Moreover, I bet it is paired with frequent scans to keep an eye on things. And, if necessary, your doctor can always bring out the big gun to deal with a recurrence. Welcome here by the way. Stay the course. Tom

Expanded health care and disability are now available for Vietnam, Gulf War, and Post 9/11 US Armed Forces Veterans with the enactment of the PACT Act. Begining 1 October, Post 9/11 Veterans have a 1 year window to enrole. Details are here. Spread the word and... Stay the course. Tom

Bops, I agree strongly with Lou and Michelle. Press for a CT scan. The drama comes when attempts to treat symptoms fail and a tumor or tumors are discovered downstream. Unfortunately, many non smokers are being diagnosed with our disease these days. Most insurance policies will not cover CT scans for those under age 55. But the cost of low dose screening is relatively low. The peace of mind is well worth the cost, my view. Here is more information about lung cancer risk factors, early detection and lung cancer screening. Stay the course. Tom

Julie, For those diagnosed with Stage I lung cancer (IA or IB regardless of type) and treated by a successful resection of the nodule, post surgical adjuvant therapy in the form of conventional chemotherapy or targeted therapy is usually not offered. Why? As LilyMir points out, recurrence for Stage I disease is about 30-precent. Here is a study that outlines the risk of recurrence based upon diagnostic stage. A good thing is your biopsy has been tested by a laboratory given that you report you are EGFR positive. Many surgically treated folks at this stage do not get a follow on laboratory test so you are well ahead of the curve. Note the studies stated risk differential. While Stage I has a 30% recurrence probability, Stage II has a 61% and Stage III a 63%! Adjuvant chemo with conventional drugs, targeted treatment and immunotherapy is common with Stage II and Stage III disease because of this very high probability of recurrence. You are right to feel nervous. But the fact you already know you are EGFR positive and that you have very effective targeted therapies identified if you have a recurrence ought to calm your nerves, somewhat. I hope your medical oncologist has you enrolled in a program of CT scan screening. If so, this will catch a recurrence early and your targeted therapy will deal with it effectively. Stay the course. Tom

It is hard to remember back to my year's worth of thoracic surgery and recovery and breathing and coughing. ChiMama's mention of Benzonatate prompted a recollection and a visit to my closet "pharmacy", a repository for all things prescribed and not used or finished during my treatment. There stood a half-filled bottle of Benzonatate so I obviously used it (It was the 4th refill). Bob's post reminded me I have (had) 2 kinds of coughing problems and they had differing causes. Coughing while breathing in for me was a surgical side effect caused by raw, sutured airway tissue. Coughing while breathing out for me is an airway congestion problem caused by pollen, polluted air (smoke, dust), or a cold that settles into my chest. Looking back, recovery from thoracic surgery and airway bolstering stent procedures in 2004 and 2005 was the most challenging breathing in time. I was in intense pain and like ChiMama and Bob P, breathing in was particularly difficult. It really hurt and it prompted coughing. Everything in my airway felt raw and the slightest encounter with dust or an odd smell resulted in a fit-of-coughing. For a time, like ChiMama, standing up or walking around fired my coughing reflex. Coughing spiked incision pain. Then fear set in. You know the drill. I was really afraid of narcotic medication. After all, I was addicted to nicotine and read that opioids (morphine & heroin) have similar addictive properties. So I decided to avoid taking prescribed narcotic medications. Martha, my wife, recalls an admonition by my medical oncologist to take narcotic medication accompanied by a stiff rejoinder that expertise in civil engineering does not confer expertise in medicine! My airway needed to heal from the rough, repeated surgical interventions. Not calming the cough response was complicating and needlessly prolonging my recovery. I used Benzonatate for a period after each surgery and stent procedure. It calmed my cough reflex and allowed me to walk around, talk quietly, and breathe in without coughing. Medication works provided one uses it. But opioid addiction is real and it is a big problem. How does avoid addiction? I can tell you how I avoided it. I involved Martha asking her to observe my narcotic medication use. She paid attention; we talked about pain before deciding to take something. Today, chronic pain and muscle cramps are my problem and sleep is my nightly challenge. An abdominal muscle cramp before bedtime will all most guarantee a night of late night TV. I could take prescribed narcotic pain medication, but that won't yield a restful sleep and will cause a dull-headed and constipated next day. I understand that narcotic pain medication doesn't relieve pain; it dulls my ability to feel it. My pain will be there in the morning regardless. I chose treatment for my lung cancer and that yielded extended life. I am very lucky for that my extension will soon span to 18 years. I now realize that my life after lung cancer is vastly different than life before. There are complications. There are new challenges, and there are choices. I only know one thing for certain. I can't do life after lung cancer alone. I need people in my life who understand my problems and challenges. I find them here. Thanks ChiMama and Bob P for reminding me about breathing in. Stay the course. Tom

JRP, Coughing and at home remedies. Here are several suggestions that might help. Stay the course. Tom

JRP, I guess you can tell you posed a tough question asking for suggestions to relieve the caretakers burden. While I was the patient, I recognized the burden my wife carried during my 3+ years of active treatment. She once characterized her experience as "running a marathon into hurricane force winds. I don't have any suggestions for you but wanted to respond to let you know we understand and care. Stay the course. Tom

Kamoto, Wow, that is grand good news about your Tagrisso treatment. Stay the course. Tom

JRP, I do hope your mom's new combination chemotherapy takes effect. Here is an oldie but goodie list of suggestions for infused chemotherapy that may be helpful. Stay the course. Tom

Drew, I once had a survival projection of less than 6 months. Predictive statistics for cancer are so inaccurate. Why? This provides some personal insight. The last paragraph of my linked bog has a citation for an essay by Stephen Jay Gould, a man who was an eminent statistician and scientist and also a lung tenured cancer survivor. Listen to that essay. So much has changed for the better, even in conventional therapy. I don't know that anyone can answer what the general outlook for your mother's treatment might be. I had a doublet of conventional chemotherapy (taxol and carboplatin). Doublet therapy resulted from a 1995 trial that showed enhanced survival over a single drug treatment. Yet, in 9 years from the trial to my first treatment, the survival statistics failed to capture the impact of doublet therapy on survival. Predicting life has always been an "educated guess." The most important thing to focus on is that conventional therapy often extends life so I suggest you focus on what you and your family are going to do with your mother during that extension. There is always hope, with high confidence. Stay the course. Tom

Drew, Welcome here. A search of RA, immunotherapy and lung cancer returned a lot of conflicting information. The best source of information on this and other treatment topics will be your moms med onc (medical oncologist) As for biologicals and cancer therapy, ensure your mom's med onc knows the details on all medications your mom is taking. Advice? I wouldn't give up on chemo radiation yet. Conventional chemo formulations have really improved in effectiveness and with tolerable side effects. Your mom's rad onc (radiation oncologist) may be able to offer fractional general radiation that hits all metastatic areas (you don't report where your mom's primary tumor is). Normally, this fractional radiation is administered M-F for 30 treatment days and reduced strength chemo is given as adjuvant therapy weekly. This was my first line of treatment in February 2004. It is still a very effective first line treatment depending on the proximity of metastatic areas. The malignant effusion may be a problem but I'd ask for a consultation with a radiation oncologist. Let us know the results of molecular testing. Stay the course. Tom