Tom Galli

Well, I spent a couple of hours nosing around articles about chylothorax. While I'm acquainted with pleural effusions, I didn't know details about the fluid that causes them. My research was both interesting and ghoulish. I'd didn't know there was a connection between the lymphatic system and the blood system in such a direct manner. Let's hope your chyle problem stops pronto. Your post highlights one of the benefits of a low-fat diet. Stay the course. Tom

No progress or new tumors is the gold standard in our disease. I do hope a way forward is found to deal with the small brain met. Stay the course. Tom

BJakobsson, Oh my, your father has a tough row to hoe! If small cell returns after the first treatment, it returns with a vengeance. The lesions along his spinal cord are troubling and difficult to arrest. Moreover, they are likely causing his difficulty with standing and walking. I'd say trying precision radiation (targeted radiation) to spinal lesions might be a way forward. Have his physicians administered a PET scan? The PET scan (information on a PET scan here) can identify metastatic activity all over his body. I think the results of a PET scan might give you insight into the extent of tumors and perhaps a decision on further treatment or best-supporting care. I am sorry I don't have a lot of suggestions to offer. Small cell lung cancer is the most difficult of all lung cancers to treat. Stay the course. Tom

Rebecca, I think I understand. Your PDL is 1 and therefore your doctor believes he needs to pair Keytruda with the conventional drugs Taxol and Carboplatin. Then, continue Keytruda as a maintenance therapy. Others with low PDL profiles have had this same treatment with success, but while Taxol and Carboplatin can be very effective, they can cause troubling side effects. However, one of the principal effects of these drugs is killing cancer. So much of lung cancer treatment is accepting the good while tolerating the bad. You are right. There is no way to know without moving forward with this combination chemotherapy treatment, but all the side effects should present after the first infusion so you will quickly know if you can tolerate this combination therapy. Of course, you are right. No one wants to be a burden on family but fairness cuts both ways. I believe it is fair that you have a chance for extended life. When I embarked on treatment almost 19 years ago, all I had was a chance. I've done a lot of living with that chance. Stay the course. Tom

LvingWife, I'm glad you cleared the naturopath's prescriptions with the oncologist. That is essential. There is a lot of discussion about diet, what to eat, when to eat, and even if not to eat in the cancer community. When I was receiving chemotherapy, I recall my oncologist simplifying cancer nutrition by explaining I had an "eating in order". I had to have calories in order to replace cells that were being killed by chemotherapy. Stay the course. Tom

JHP, The first 2 answers to your hypothetical question are practice methods in use today. Nucleotide targeting is not yet a treatment modality. I read the PubMed paper and that is the limit of my experience with nucleotides. But, the most important information on your dad's treatment is the shrinkage of tumors reported in the first 6 months of treatment. This is worthy of celebration. The only reason I can think of for a change in treatment is progression and hopefully, that won't happen. Stay the course. Tom

LovingWife, Rikkie's suggestions about hope for a good outcome and taking time for yourself are good ones. These days, Stage IV disease in some presentations of lung cancer is treatable; some on immunotherapy have amazing results. I pray your husband's combination chemotherapy with immunotherapy is successful. Suggestions? Has your husband considered having a port to ease the find-a-cooperating vein drama of infused chemotherapy? I had three 18-week cycles of infused chemotherapy and after the first cycle of treatments, my veins became uncooperative. A port is a simple outpatient surgical procedure that eliminated the drama of infused treatment. It will also work for blood draws. Here are suggestions I wrote down years ago for infused chemotherapy. With combination chemotherapy, sometimes one has combination side effects. Your husband's conventional chemotherapy drugs carboplatin and pemetrexed are mostly well tolerated. Keytruda is also well tolerated. Sometimes, however, the combination is not. The best way of understanding side effects is by charting their onset and retreat. The side effects tend to repeat in nature and sequence after each infusion and knowing the onset can often allow starting mitigating medication before onset to hopefully nip the symptoms "in the bud." I found my chemo nurse to be the best person to discuss side effects and mitigation strategies. I saw my nurse for each infusion and my oncologist every 3 infusions, and the nurse answered my phone calls and email message. These days, most medical practices have a practice portal that allows one to view test results. Pay attention to blood chemistry results in blood tests, especially to variances from normal. Red and white cell variances are expected but sometimes chemo affects blood salts like magnesium and sodium. When these fall below a certain level, muscle cramping can start and it can get pretty painful. It is normal to have a mid-cycle CT scan to assess the effectiveness of treatment. The most important thing we are looking for in his first test is the words no progression. If the report indicates tumors shrinking, this would be grand good news. When immunotherapy works, it works really well. I know many survivors from LUNGevity who have about 2 years of Keytruda infusions and after that period, treatment is no longer needed. One's immune system takes over. Your husband will likely have 6 infusion cycles of combination chemo then carboplatin and pemetrexed are stopped and Keytruda continue for perhaps 2 years. We are aiming for NED--no evidence of disease. Cure is something very few of us ever attain but NED means a normal life expectancy is expected. Here is information on terms used to describe lung cancer treatment outcomes. To Rikkie's marathon point, lung cancer is so dangerous because it often recurs after a scan shows NED. Therefore, once your husband achieves NED, he will likely have scheduled CT screening scans for the rest of his life and hopefully, these scans continue to report NED as the finding. I was NED for 17 years and finally, my oncologist reported that I was cured and promptly retired! Knowledge is power in our disease and this resource will help you understand our disease in all its presentations and treatment methods. I encourage you to read in. And, of course, one must master a strange new vocabulary, and this glossary will help. Our Foundation also has scheduled Zoom sessions for caregivers of lung cancer patients. Our next scheduled caregiver Zoom is Thursday, May 25th at 8 PM EDT. Contact our LUNGevity RN nurse navigator at kgriffith@lungevity.org to get connected to this Zoom. You both are in this for the long haul and tips and tricks learned from other caregivers might help you. Looking back on my treatment, I now realize my wife and caregiver had the harder row to hoe! Here is information on the many resources available in our LUNGevity Foundation. Give it a read. There is life after lung cancer. If I can live, so can your husband. Immunotherapy works and faith and hope are good things. Stay the course. Tom

Maryanne, Welcome here Oh my, a report of progression after starting a Targeted Therapy for Adenocarcinoma Met Skipping exon 14 is never good news, but there is another Targeted Therapy drug for your form of lung cancer: Tepotinib (Tepmetko®). Karen's suggestion is a good one. Please email Kristi Griffith, RN (kgriffith@lungevity.org). Kristi is a Lung Cancer Nurse Navigator and she is available to explain alternate therapies that might be available to deal with this progression. You might also ask Kristi about our Lungevity Zoom schedule. We have one at 12 EDT on every Tuesday and this mixture of newly diagnosed with seasoned survivors might help you navigate uncertainty. Ask Kristi for the link in your email. Karen is right. Don't go to panic. Stay the course. Tom

Jeff, Welcome here. Seeing the radiation oncologist first while sorting out insurance problems was an elegant decision. So very sorry to learn about the chemo side effects, but the principal side effect is killing cancer cells and your mom's recipe of combination chemo (conventional drugs plus immunotherapy) works. There is every hope she'll achieve NED -- no evidence of disease, an outcome we all aim for. Keep us updated and stay the course. Tom

Jacob, Now that you've described the extent and location of your mom's tumors, I offer this path for your mother's care. Here is how I'd proceed. Surgeon: Based on the extent of your mom's disease, surgical treatment is likely not possible. But, if the surgeon is evaluating for a biopsy, then this consultation is useful. Radiation Oncologist (RO): This discipline can rapidly moderate your mother's pain with radiation. You ought to be able to make an appointment with a RO without a referral (Unless your mom's health insurance is an HMO). Any RO practicing at the University of Pittsburgh Medical Center (UPMC) will be able to deal with your mom's pain quickly without disturbing curative treatment. A RO need not wait for a biopsy to begin treatment so your mom can be scheduled for a biopsy, and in the dwell time for this procedure and designing a treatment plan, be seeing a RO for palliative treatment to reduce and perhaps eliminate pain. Biopsy: If the surgeon is not doing one, then an interventional radiologist can perform one. Again, this level of expertise is at UPMC. Medical Oncologist: This discipline will develop systemic treatment that your mom needs but biopsy results must be in hand before treatment design is performed. That is why a biopsy is so important. In reality, two biopsy procedures should be performed. A pathologist will look at tissue under a microscope (called a histology exam) to determine the type of lung cancer (each type responds to different systemic treatment). Then, the sample should be submitted for further analysis to determine if Targeted Therapy or Immunotherapy are possible methods. It is important to ensure your mom's treatment team performs both of these biopsies. Sometimes they don't do a lab biopsy. So rather than a linear approach to diagnosis and treatment, I'd advocate a shotgun approach focused on eliminating pain as a priority measure. For help in arranging treatment for your mom, please contact Kristi Griffith, Lungevity's RN Nurse Navigator, at kgriffith@lungevity.org Provide your phone number and she'll call you. Stay the course. Tom

Jacob, Welcome here. I'm alive 19 years after an advanced stage diagnosis with a total of 5 progressions. I've experienced every form of treatment but immunotherapy, and the last and curative was precision radiation in the form of SBRT CyberKnife. I'm a civil engineer and like you have a deep preference for data and analysis to self-solve problems. But, my analytical approach failed miserably. There was just too much to absorb, the disease was too complicated, and (fortunately) the multitude of treatments available and conditions for their application was too daunting for me to assimilate. I recommend you concentrate on the basics and absorb this material, all of it. Like building routines of software to solve problems, treating lung cancer is a step function. Each step is well defined by best practice, and in the United States, we codify our best practice as national standards of care. These function like our engineering standards and guide the clinician in the application of well-discovered methods and techniques. I'm not trying to tell you that your analytical skills are not helpful. Indeed they will help you rapidly assimilate Lung Cancer 101 and give you a foundation to understand our disease in its myriad of presentations. As an example, you cite immunotherapy as an advance that might apply to your mother. But your description of your mom's condition points to advanced-stage disease and her clinicians will likely want to kill cancer cells quickly. To do so, they might turn to combination "old school" therapies that do just that: perhaps conventional chemotherapy and fractional general radiation. Then, once the tumor burden is lessoned, progress treatment to targeted therapy or immunotherapy. I'll take off my engineer's hat. Analytics have their place but so does faith and hope. To bolster my assertion, look at this photograph from our recently concluded Hope Summit. Our Lungevity Nurse Navigator is in the middle and surrounded by long-term survivors, three of which are still in treatment. I'm the outlier in the upper right. I was pronounced cured 2 years ago. Know you've found us, and we are an assemblage of people who well understand this disease, its presentations, frustrations and treatment. We will help you every step of the way. Help your mom through diagnosis; a biopsy is surely in her future. Help her understand what is happening. Apply your learning from Lung Cancer 101 to explain the first and perhaps subsequent treatment plans to your mother. Help her manage fear. Keep her from despair. Attitude counts. Listen to this noted scientist on statistics, attitude, and prognosis. And, we are here for you to answer questions. Stay the course. Tom

KG, Welcome here. I’m not much help I’m afraid. My first line therapy was 30 days of fractional general radiation with weekly infusions of Taxol and Carboplatin. I had a single, particularly large tumor about 4” long and 3/4” wide that completely filled the main stem bronchus of my right lung. First line treatment objective was to shrink this tumor to allow surgical resection of my lung. During the 2nd week of treatment, I started to notice discomfort that radiated across my chest in the proximate location of my tumor. My oncologist never heard of lung tumor pain but I believe I experienced it. Anyway, there was little he could suggest to minimize the discomfort. I’m blessed with 19 years of survival but suffer chronic pain from my many treatments. I bring this up because I used oxycodone also and it was too “effective”. My doctor transitioned me to Tramadol and that works well enough to deal with pain spikes without putting me in a narcotic haze. I’m not much help I’m afraid. Stay the course. Tom

Welcome CheRub! As I understand your situation, your doctor wants you to have 4 cycles of conventional chemotherapy, and on completion, start Tagresso, a Targeted Therapy drug that is effective against certain forms of Adenocarcinoma with EFGR expression. I think the reasoning is conventional chemotherapy kills cancer cells while Tagresso stops existing cancer from progressing. Since the lymph node pathology showed metastatic disease, your physician wants to kill circulating cells before they form into a nodule. That might be the reason but be sure to ask the Perlmutter Center physician to explain the reason for adjuvant conventional chemotherapy. Stay the course. Tom

ANC, You are more than welcome in this forum. Indeed, our key purpose is to share information on treatments and outcomes among lung cancer survivors and their caregivers. Answering questions is what we do but be mindful, I am not a physician. Perhaps your dad's oncologist mistakenly reported his stage. True, small cell lung cancer only has two "stages": Limited and Extensive. But, Stage IV disease is equivalent to Extensive Stage. Thankfully, small cell lung cancer represents only about 15% of total diagnoses and sometimes its unique vocabulary gets overlooked. Let's unpack survival statistics. These are a bane in our community. The idea of forecasting survival ties back to the FDA requirement that a new treatment modality must show improvement over established therapy to gain approval for use. True, physicians have always "predicted" remaining life, but statements were generalized predictions as in not long to live. First, consider the span of the "12-24" prediction. The twelve-month span introduces a high degree of uncertainty. Next, listen to this essay by the noted scientist Stephen J. Gould. The predictive statistical outcome is very hard to apply to a single human being. The statistician aims to predict by aggregating hundreds, perhaps thousands, of data points into a single mean or median and thus disclose a central tendency. In fact, the aggregating process discards outliers, data that is outside an "expected value". Your dad could be an outlier; I am an outlier. Your dad could be the one standing far-right on x-axis of the survival graph holding the death curve from an intersection. He could be the one. I wouldn't know how long your dad has. I think the far better question is what is he going to do with the remainder of his life. You've asked a number of questions about drugs to treat small cell and their effectiveness. I'm not equipped to answer, but I do suggest two courses of action: have your dad start his prescribed treatment and concurrently, take him to a National Cancer Institute Designated Care Center for a second opinion. Stay the course. Tom

ANC, "With new treatments, is [the] prognosis better?" Yes, but I don't have data to back up my answer. I've been moderating this Forum since 2015. I discovered my first online cancer support group in 2006 while in treatment. At that time, most who joined did not have long tenures. Moreover, there seemed to be a lot more "scam cures" advertising and many who joined online in the early days were fleeing from a scam cure entanglement. Lung cancer survival from any form of the disease in the period I was treated (2004 through 2007) was rare. Starting around 2007, the FDA accelerated its approval for new therapies. These included new drugs, collectively called Targeted Therapy for certain types of Non Small Cell Adenocarcinoma. Also approved were new precision radiation (SBRT, IMRT, and others) methods for solid lung tumors. I personally benefited from the 2007 approval. My precision radiation called SBRT was the curative treatment for me. Around 2010, we learned that genetic markers could forecast if Targeted Therapy techniques would work. Early Immunotherapy discoveries earned FDA approval in the 2015 timeframe and genetic marker testing was re-named biomarker testing when PD-L and PD-L1 immunotherapy tissue biopsy testing was approved. The Immunotherapy discovery was groundbreaking, and this treatment was approved for all forms of lung cancer, including Small Cell Lung Cancer. In I believe 2020, treatment methods for Small Cell dramatically expanded. Radiation oncologists became very aggressive in attacking Small Cell progression with precision radiation. Moreover, advances in radiation technology and techniques resulted in effective treatments for brain metastasis. Small cell typically progresses to the brain. Medical oncologists started using conventional chemotherapy in combination with Immunotherapy to treat both Limited Stage and Extensive Stage Small Cell. Here is the current approved list of FDA drugs for Small Cell. It is an explosion compared to the once commonplace Cesplaton and Etoposide standard of care. Now, Small Cell in Limited Stage presentation can be effectively treated and a no evidence of disease (NED) outcome is more than possible. I'd say a NED outcome for Limited Stage disease is likely. Even Extensive Stage disease outcomes are improving. So is the prognosis better? Yes, dramatically better! I'm not sure I understand your question on results differences between self-pay and Medicare. In the United States, Medicare will pay for all FDA-approved treatments. For Small Cell Lung Cancer, these include conventional chemotherapy, chemoradiation, combination chemotherapy (conventional chemo with immunotherapy), and precision radiation (SABR, SBRT, IMRT, etcetera.) Moreover, the clinical trial landscape has dramatically changed from the "trial" I encountered in 2004. My 2004 experience was an experiment; today's trials are treatment. Here is more information on clinical trial treatment for lung cancer. Stay the course. Tom

Jeff, Welcome here. We'll cross our fingers for good scans on Thursday. The first scan during a new therapy is a tough one. Well, in reality, all scans for this disease are hard to take. I'd be concerned about your pain symptoms also but Tagresso is good stuff, and most I know experience smaller tumors and no progression. Let's hope this is your outcome also. Welcome to the high "Scanziety" club! Stay the course. Tom

ANC, Welcome here. No doubt, extensive-stage SCLC with metastasis to the bones is difficult to treat but difficult is not impossible. Small cell is known to quickly mutate around conventional chemotherapy and typically the conventional chemo used is cisplatin and etoposide. To counter this rapid mutation effect, a combination conventional chemo pairing (cisplatin/etoposide or perhaps others) is used in conjunction with immunotherapy (either Tecentriq or Imfinzi). Immunotherapy is a game changer in the treatment of all forms of lung cancer. Also precision radiation can target your dad's bone metastasis with two objectives: kill the tumors and ease the pain. If money is no object, then I would steer your dad to a National Cancer Institute Designated Care Center for treatment. Here is a link that will help you find one close to Syracuse. Let us know if you have questions. We are here to help. Stay the course. Tom

Dora, Welcome here. The language of our disease can be quite daunting to new folks. Here is a glossary that I use frequently to ascertain the meaning of acronyms and terms associated with lung cancer. PET scans--I've had too many in my 19-year survivor journey but along the way I've learned about the obtuse language used by radiologists to characterize and describe the results of the test. Here is something I wrote that explains the PET scan, how it works, and the meaning of words used to describe findings. Now to your questions: how do you know what the average SUV is and what are the risks associated with a lung biopsy? Normally, generally, usually, a Standard Uptake Value (SUV) of 2.0 or smaller is considered normal. There is more information in the PET scan link about SUVs that are higher than 2.0. A lung biopsy, also known as a tissue biopsy, is well explained here. This information also provides some discussion of procedure risk, but these should be explained by the performing physician before you have the procedure. I've had 5 rigid bronchoscopies, 2 nonrigid bronchoscopies, and one transthoracic needle biopsy. Additionally, I had a specialized transthoracic procedure to insert five 1 mm gold fiducial markers around a lung tumor before a precision radiation treatment. The rigid bronchoscopy requires general anesthesia and the principal risk is driven by adverse reactions to anesthesia. Additionally, I was told I would have a very painful throat and would have difficulty swallowing for several days. Both proved true. The nonrigid bronchoscopy required "light" anesthesia and therefore anesthesia-related risks were lower. But a painful throat and difficulty swallowing were side effects I experienced. A transthoracic needle biopsy can normally be performed using a local anesthetic and there is very little anesthesia risk associated with this procedure. Depending on where the lung nodule or tumor is located, there may be a risk of a collapsed lung. This was an easy procedure for me, but I was a little unnerved seeing the doctor position the long needle used in the procedure. My specialized transthoracic procedure was performed under general anesthesia so those risks attached. Again, the doctor explained the risk of a collapsed lung. This risk was higher because he had to enter my lung in 5 distinct locations to position the fiducial markers. A collapsed lung is also called a pneumothorax and the glossary I linked explains what that term means. I hope this helps to answer your questions. Stay connected to us. We are not physicians, but we have a unique understanding of our disease, the many treatments, side effects, and risks. Stay the course. Tom

Jill, I'm glad you got feedback from your medical team. We are always here for you! Stay the course. Tom

Bri Hin, "Six months out and still trying to heal and adjust to the fact that this is my new life." Your words resonate in recalling my treatment history. Hopefully, your surgical journey is complete. You don't mention follow-up screening which is common and important in our disease because lung cancer frequently recurs after curative treatments. Most of us have a medical oncologist who performs screening CT scans on a scheduled basis to catch recurrence. What type of lung cancer were you diagnosed with? Do you recall the pathology report on your tumor biopsy? Here is information on the types of lung cancer. I wouldn't know about local support groups in Southern California, but we are your support group. Here is information about the LUNGevity Foundation. We have many support resources, all tailored to lung cancer survivors and those who care for lung cancer survivors. This explains the scope of our support services. So you are welcome to hang out with us as you search for a local group to connect with. Welcome here and... Stay the course. Tom

Erin, I agree with Lou. Spiculated nodules can be suspicious for lung cancer but so can non-spiculated nodules. My go-to resource for understanding pulmonary nodules is the Cleveland Clinic. You will note that most of the causes of lung nodules are not cancer. I do however think you should be followed by your pulmonary specialist with routine scans to follow the nodule. Stay the course. Tom

Marcia, I had my right lung removed and also experienced the pressure sensation you speak of. My surgeon made small incisions on each side of my chest and with the help of nurses, pushed air that was in a pocked in the pleural space between the outer wall of my lung and the inner wall of my skin until it was expelled. Of course, I had anesthesia during this process. My surgeon told me that small air pockets get absorbed but mine was more extensive. I agree with Karen and Lily about follow-up with a pulmonologist and a medical oncologist. Both should be involved in screening scans to ensure you stay cancer free. Stay the course. Tom

JDella, Welcome here. First the disclaimer. I'm to a radiologist nor a physician but a 19-year survivor of lung cancer and have had many PET scans. Here is something that might help you understand the language of the PET report. In a general sense, anywhere you read "no FDG avid" or "low-level avidity" or SUV max of 1.0 or 0.9 means no problem. The concerning language is: "History: Small Cell Lung Cancer; Restaging". It is possible that the radiologist mistakenly titled the report. But, the language used to describe your mom's condition is good news, and not concerning. Certainly, there are no words pointing to a spread or new metastasis and these words would point to restaging. I hope this helps till you get a further explanation. Stay the course. Tom

Jill, I'm not a radiologist nor a physician but have survived 19 years and read many scan reports. With that preamble in mind, let me help you understand the concerning language. "stable small pancreatic tail hypodensity IPMN": The pancreas has two parts, the head and the tail. Your scan speaks to a stable, small nodule found in the tail. Small and stable are the keywords. "Newly seen nodular opacity infectious/inflammation": A new discovery but where is it? Regardless, the radiologist is characterizing it as infection or inflammation as a cause. It will likely be noted and tracked by your oncologist in future scans. Nothing about lymph nodes is great news and the tumor decreasing in size means your treatment is working, so more good news. Stay the course. Tom

Ambert, Welcome also. Bridget is right. Most of us recovering from thoracic surgery use wedge pillows to move the upper body weight to the hips while sleeping. If your mom's bone mets and breaks are in the upper chest, perhaps a wedge pillow might help. Amazon has a big selection. I went to several mattress stores to audition mine before my first surgery. Your mom's first-line therapy will be a tough course but these days thanks to improvements in therapy and radiation oncology, treatment has a high probability of success. Let us know how she does. Here is some information about chemotherapy and radiation used to treat lung cancer. Stay the course. Tom