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Tom Galli

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Posts posted by Tom Galli

  1. 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

  2. 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

     

  3. 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

     

  4. 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

  5. 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

  6. 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

  7. Rikke,

    I had to endure many "good news bad news" scans in my treatment history. I note, sadly, you are experiencing this disconcerting problem.

    Standard uptake values are strange. Above 4.0 normally points to metastatic activity, and in your case, the reduction from 11.6 to 5.5 means less uptake, but I'm not sure less uptake above 4.0 is a good thing. There is still metastatic activity. The good news is your medical team recognizes the threat and it will be removed.

    Stay the course.

    Tom

  8. 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

  9. 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

  10. Oh the waiting in this disease goes on and on and on! But, lung cancer is so deadly because it recurs so we need to perfect our patience bolstered by persistence. Banjo jamming is good practice technique. 

    Stay the course. 

    Tom

  11. 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

  12. 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

  13. Scruboak,

    I agree with Lou. Hemoptysis is something that should be reported to a physician. Hemoptysis and a history of lung cancer should be reported pronto!

    It may be nothing but report the condition to one of your physicians and push to have the cause identified and resolved.

    Stay the course.

    Tom 

  14. 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

  15. 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

  16. 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

  17. Jjwb,

    Welcome here.

    Combination chemotherapy with carboplatin & etoposide and the immunotherapy drug atezolizumab (Tecentriq) is a relatively new therapy, and it is novel for small cell lung cancer (SCLC). Primary shrinkage is a good result and an indication the therapy is working. Is the primary tumor the only tumor she has? If so, adding precision radiation (SBRT, SABR, IGRT) can be a good way to eliminate the reluctant primary. 

    While chemotherapy is effective, radiation always works. It is a sure-kill treatment, especially when administered using precision methods. This part of Lung Cancer 101 has information on radiation therapy used in lung cancer. I'm a fan. I had an uncooperative tumor in my lung that persisted despite multiple cycles of chemotherapy. Three short sessions of precision radiation (my treatment was SBRT) and the tumor was eliminated. That was in March 2007 and I've been NED (no evidence of disease) since.

    I do hope radiation eliminates your wife's tumor.

    Stay the course.

    Tom

  18. GBean,

    I'm a nearly 20-year survivor of progressed Stage IV, NSCLC. My type is squamous cell; when diagnosed, Targeted Therapy wasn't discovered! So I have no personal experience with Tagrisso except for hanging around this forum for about 15 years.

    It is not unusual to see higher doses of chemotherapy that pass the blood-brain barrier given brain metastasis. Hopefully, WBRT will deal with the brain mets and the higher dose of Tagrisso will ensure they do not return.

    Stay the course.

    Tom

  19. Steve,

    Oh my!

    Let me ensure I understand your treatment before answering your chronic disease question. You had a Stage 1A NSCLC diagnosis and surgical treatment in December 2018. Did you have post-surgical chemotherapy? You mention Targeted Therapy is no longer available. Was your resected tumor sent to a lab for biomarker testing? If so, can you recall type of mutated adenocarcinoma? Here is a summary of all the actionable types of adenocarcinoma to jog your memory. Was the pelvis lesion surgically removed? Was the lesion material sent for biomarker testing? Lytic lesions can be malignant or benign. Were you told which?

    To understand your chronology, your initial diagnosis was December 2018. Was the onset of your hip pain in June 2019? Did the fracture occur in January 2020? Did you have any chemotherapy after your lobectomy or lesion resection? How many follow-up scans? Were you scanned once every quarter or twice a year? Are you still being scanned? If your latest scan was NED, why did your oncologist suggest systemic therapy?

    I got to a point in my treatment where my doctor thought systemic treatment might be possible. I was receiving conventional chemotherapy in the form of Taxol and Carboplatin, hardened with a Targeted Therapy drug called Tarceva. This therapy was not eliminating my lung tumors but keeping them from growing. So the thought was I could be put on a long-term infusion schedule with the hope of controlling my active disease, not eliminating it. That long-term infusion process is what is referred to as systemic therapy. 

    If you are now NED, I can't see the need for any treatment but screening scans to ensure you stay NED.

    Stay the course.

    Tom

  20. BBTN,

    Welcome here, and for the record, no one handles a lung cancer diagnosis well.

    A summary of my best tips is an old blog shown here. My advice about learning about your disease can start here.

    You've got a single small tumor, or large nodule, in the right lower lobe. It is adenocarcinoma so there may be a lot of treatment options.  Here are all the treatment options. The first curative to suggest is surgery to remove your right lower lobe. These days robotic surgery reduces pain and recovery trauma. Your treatment team is doing the right thing by performing biomarker testing. That determines which targeted therapy or immunotherapy treatments are appropriate for your adenocarcinoma. Surgery is our most effective treatment and it can often be one-and-done. But lung cancer is so dangerous because it recurs after curative treatment. If you choose surgery and are offered post-surgical chemo, I'd take it. I had 5 recurrences after supposedly curative treatment and each one was a nightmare. I believe the objective is to hit your lung cancer with everything you can to ensure the chance of recurrence is minimized.

    Stay the course.

    Tom

     

  21. KenHorse,

    Welcome here and great news on the success of your surgery. But, lung cancer is so dangerous because it so often recurs after curative treatment. I had 5 recurrences and my first was after a thoracic procedure removing my right lung.

    Which of your doctors said no need for chemo or radiation? Was it a medical oncologist or surgeon? Post-surgical chemotherapy attacks cancer cells that might be circulating in your blood or lymphatic systems. These of course might be the seeds of a future recurrence. If the medical oncologist stated you did not need post-surgical chemo, ask the doctor to cite the risk of recurrence given the type and stage of your lung cancer. If the surgeon said you do not need post-surgical chemotherapy, ask the medical oncologist.

    Stay the course.

    Tom

  22. Cameronelliott,

    I had to edit your post to remove the link. The link is advertising and promoting a commercial product and service, and we do not allow these activities in our Forum.

    If you want to explain the new technology and how it might benefit our community, I encourage you to author another post but please do not include commercial product names or companies that produce the technology or service. For example, I might explain what precision radiation does and how it differs from fractional general radiation, but that explanation would not contain or refer to patented technology names or commercial organizations marketing, advertising, or producing the technology.

    Tom Galli, Moderator

     

  23. KF1,

    Welcome here.

    Unfortunately, I am not qualified to help you decide on your wife's next line of treatment.

    I had 5 recurrences (progression) during my active treatment period. Each rolled out like your wife's experience: first, a scan showing improvement, then the next showed progression. Waiting for scans, then waiting for results was so unsettling I wrote a book about the experience calling it "Scanziety" (yes spelled with a z).

    My best recommendation is to seek the opinion of another medical oncologist. Download all the treatment notes and scan reports from the clinic treating your wife and take them to the new oncologist so he or she can be completely informed about treatment details.

    Stay the course.

    Tom

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