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Tom Galli

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Everything posted by Tom Galli

  1. letsdothis, Sorry, I'm late to the party. To clarify, has your husband had only one PET scan? You cite a July 2023 PET but the report posted suggests an earlier PET scan: "(previous max SUV of 4.6)" and "(previous maximum SUV of 0.7)". There would only be previous SUVs if the report you cite was a second scan. Therefore, my comments assume the July 2023 PET was his second scan. Here is some information on PET scans that I generated several years ago and particularly note the information on SUV magnitude. I was diagnosed before PET scans were introduced but in 20 years of surviving this disease involving 4 recurrences, I've learned quite a bit about this technology. The report you posted is a mixed result. The right paratracheal and left axillary lymph nodes show SUV reductions that suggest metastatic disease is declining. The inguinal and iliac lymph nodes, reported as "new" have SUVs that suggest metastatic activity. It appears your husband's first-line treatment of chemotherapy and fractional radiation (35 treatments given over a period of time) have had a good effect on the disease in his lungs, but the newly reported lymph nodes with elevated SUVs suggest a recurrence. Therefore, I think your concern about progression is valid. That said, there are reasons your husband's oncologist might continue Imfinzi after a recurrence. Moreover, there are conventional chemotherapy agents that can be combined with Imfinzi to counter a recurrence. But, I would ask your husband's oncologist about the recurrence and the plan to deal with it. Stay the course. Tom
  2. Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded. In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB. There were few resources in those days explaining lines of treatment or prognosis. The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life. Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice. What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome. Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment. Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.” Finally, consider that if I can live, so can you! Stay the course. Tom
  3. Iman, Welcome here. Some do share portions of scan reports and less often biopsy reports. The language of scans is complicated; biopsy results are straightforward. The biopsy will report if the node contains metastatic cancer cells or benign cells. Further, if metastatic cells are present, the biopsy will identify the type of cells. This examination is performed using a microscope. The pathologist can see the difference between the size and shape of cells and if cancer can classify the cells as small cell, large cell or non small cell. You mentioned staging. Staging speaks to where nodules are in the body. The article Lou suggests contains a complete discussion of staging. Staging is only important to determine if the nodule can be surgically treated or not. Stage I, II, and some forms of III can be treated by surgery. Stage IV cannot. Stay the course. Tom
  4. Minh, During my treatment when I struggled with no appetite, my wife fed me homemade ice cream 3 times per day. She boosted the normal, over-the-top, ice cream calories by adding a whole package of crushed Oreo cookies to the churn. This put on the pounds pronto. Stay the course. Tom
  5. Cara, I am sorry. I guess I am fortunate enough to survive so long that I've outlived the Google site that held the summation of my treatment history. Here it is, in brief. Diagnosed February 4, 2024, stage IIIB, non-small cell, squamous cell, lung cancer. First-line treatment: 30 sessions of fractional general radiation to the large tumor (about 4" long and 3/4" in diameter) completely filling the main stem bronchus of my right lung. Adjuvant weekly taxol and carboplation, 6 infusions in total. Result: no evidence of disease (NED) scan after treatment. The objective of first-line was to shrink the tumor allowing the surgeon to remove my right lung. We decided we'd proceed with surgery. Second-line treatment: Open thoracotomy resection of my right lung. A week after surgery, I developed a fistula leak in the sutures of the bronchus stump. This required two follow-up surgeries to repair the fistula and 3 stent insertions. Time-wise, almost a year's worth of surgery and recovery. The first CT scan after surgical recovery showed 3 tumors in my left lung. Third-line treatment: 6 cycles of taxol and carboplatin chemotherapy with an infusion every 3 weeks. The 3-month post-treatment scan showed NED but the 6-month scan showed two of the tumors returning. Fourth-line treatment: 6 cycles of taxol and carboplatin adding the targeted therapy drug Tarceva. Tarceva is now given as a targeted therapy for certain forms of adenocarcinoma. At the time I was given this drug, doctors didn't realize the limitations of the drug. All that was known was the drug worked for a small population of lung cancer patients. Again, I had a NED scan after treatment but my 6-month scan showed a single tumor recurrence. Fifth-line treatment: A CyberKnife precision radiation (SBRT) treatment for the persistent tumor in my right lung. 3 months after this treatment, I had a NED scan (June 2007) and I've been NED ever since. Sorry about using the term tumors to describe your husband's situation. The size you report puts them clearly in the nodule classification. Stay the course. Tom
  6. Sue, Treatment at Mayo is a good call. Brain mets are complicated and an experienced treatment team is warranted. I am praying for a good outcome. Stay the course. Tom
  7. Cara, Your husband has a complicated case. I've read all your posts and understand the confusion. Basically, the biopsy doesn't confirm the PET SUV. SUV of about 3.5 can be typical of inflammation, but the 6.7 value is well above the inflammation response -- this indicates metastatic activity. Here is something I wrote a while ago explaining PET scans and SUVs. We all are afraid of surgery. I had 3 open thoracotomies in my treatment history and yes I've had SBRT. It was my curative therapy and my last of 5 lines of treatment. SBRT can substitute for surgery. In fact, given that your husband has tumors in both of his lungs, SBRT might be the better treatment. Here are my ideas. Repeat the PET scan and then repeat the needle biopsies. Yes, biopsies are the "gold standard" in identifying lung cancer but sometimes a needle biopsy misses. If you decide to use SBRT, ensure you consult with a medical oncologist to have adjuvant chemotherapy after radiation treatment. Lung cancer in any presentation has a high probability of recurrence and given tumors in both lungs, you want to do everything you can to avoid a recurrence. Chemotherapy is inconvenient but it is minor indeed compared to a recurrence. Stay the course. Tom
  8. Kamoto, NED is neet! Don't know diddley about the sore on your head, but I do know NED is worthy of much celebration. So... Stay the course. Tom
  9. Phyllis, Welcome here! I was born and raised in the Commonwealth of Pennsylvania and in my day, the Northeast was indeed very rural. I don't think much has changed given the condition of treatment availability you mention in your post. In fact, I've been to Plymouth, PA. It was once a hopping place during the hard coal or anthracite coal mining days. Ending the lung cancer stigma and opening the availability of screening are very worthy causes to advocate for. Thanks for joining us and helping spread the word. Stay the course. Tom
  10. A lung cancer diagnosis hits like a ton of bricks.... Stay the course. Tom
  11. Devastated, I wish I had words to comfort you. Any kind of lung cancer is misery; small cell is misery with added despair. Small cell moves fast once settled in, and the first-line treatment regimen hasn't changed for 20 years. Add your mom's age to the mix and loved ones face a nightmare. Nearing 20 years after diagnosis with lung cancer, progressing to Stage IV after many failed treatments, I am lucky to be alive. Research created treatment advances with most forms of lung cancer but small cell remains unaffected. The only small comfort in your mom's journey is it was pain-free. Stay the course. Tom
  12. Devastated, You are in the right place. Stay the course. Tom
  13. Sue BB, Well said and well written! Your Mandan News editorial expertise is showing. In my struggle for life with this disease, I realized writing about my experience was a tonic. I kept a near-daily journal chronicling thoughts throughout my 3-year journey of failed treatment and mayhem. I did this because, as a trained engineer, I was schooled to keep a detailed "design" notebook recording lessons learned. Engineers use this tool to look back at design problems encountered and solution sets explored. Our memories fail often, and what presents as a new problem is often a problem previously solved or an unimportant one. But my treatment journal revealed a brand new advantage: the ability to realize progress in a sea of uncertainty. Keep writing and stay the course! Tom
  14. Blossomsmom, Good to hear from you again but sad you might need to join us in survivor mode. One of the upsides of having a pay-for-service health system is direct access to specialty physicians. Exercise that right and see a pulmonologist, medical oncologist, or radiation oncologist and make that appointment without regard to your GP's timeline. But, beware the wormhole of ground glass nodules. I still have them reported nearing 20 years of life after lung cancer diagnosis. The best advice I can give is to find a physician who wants to do frequent scanning to look for nodule changes. In fact, tell them this is what you want. After all, you are paying for service. Stay the course. Tom
  15. Welcome Jim, Good to learn another veteran has joined us. I am a retired career soldier and have Medicare plus Tricare for Life. Like you, I'm a medically disabled soldier and I am eligible for medical care through the VA system. Predicting future drugs after surgery is difficult. I had three back-to-back thoracic surgeries, the first removing my lung and the remaining two dealing with a fistula in my bronchus stump. I recall a short course of narcotic pain medication that was inexpensive and not very expensive. So I can't suggest any drug names to assist you. Stay the course. Tom
  16. Jim, I'm a veteran and a lung cancer survivor who's navigated the complexity of VA medicine. I also have a "PhD in inhalers" with three different types in my inventory. MD Anderson is a super hospital and attending physicians always prescribe the latest and greatest medication on the market. And new inhalers proliferate. Here is my suggestion. Take your MD Anderson prescriptions to your VA hospital and ask your assigned VA physician for a consultation with a VA pulmonologist. The VA pulmonologist should be able to prescribe an inhaler (or combination of inhalers) in the VA drug system that works just as well as the Anderson-prescribed Trelegy Ellipta. Of course, the hard part of the aforementioned is waiting for a VA physician appointment but free drugs might be worth the wait. Stay the course. Tom
  17. Welcome, Sue! Don't worry about corrections. Anyone who suffers from this disease gets an automatic bye on mistakes. Lung cancer is complicated. You are right. Outsiders don't understand our disease. We don't display symptoms until late-stage disease and then we're out of circulation in an ICU or home hospice. Come February, good Lord willing, I'll be fortunate to celebrate my twentieth year since diagnosis. My treatment mayhem is over, but memories are carved deep in my soul. Like all of us, I am one scan away from bad news. Having said that, my calendar reminds me of an October 27 annual CT scan prior to my visit to my medical oncologist. Hopefully, the scan will show no evidence of disease (NED) and I can enjoy the Fall holiday festivities. Stay the course. Tom
  18. Danielle, Welcome here and I'm very sorry to learn about your dad's small cell lung cancer. Small cell is difficult to arrest and an extensive stage presentation is indeed a challenge to arrest. Your dad is receiving the standard of care treatment with Etopside and Cisplatin. In the US, combination chemo adding immunotherapy is becoming a more common treatment. Here is information about small cell and immunotherapy. Perhaps you could ask your father's treatment team if an immunotherapy trial is available in the Netherlands. Stay the course. Tom
  19. BryJ We all hate waiting. I've experienced all the symptoms you describe during my 3 thoracic surgeries and everything but chronic pain resolved. My pain is caused because I had 3 procedures using the same incision site nearby that severed many nerves. Moreover, my last surgery removed 2 ribs. I hope you avoid follow-up surgery; if you do, your current problems should be resolved. Stay the course. Tom
  20. GBJ, In the US, medical oncologists are getting aggressive using precision radiation (SBRT, IMRT, IGRT, SABR) to treat with curative intent multifocal disease. I'd consult with a radiation oncologist to see if "spot welding" your mets is possible. Stay the course. Tom
  21. @Lmodge -- When I read your post, I considered whether to take it down. Our Forum is a safe space for lung cancer survivors and those who care for them. Obviously, we disallow all commercial enterprises advertising this and that. We also frown on people using our survivors and caregivers as survey fodder. Your post sneaked into the allowed category because you didn't link to a particular study or cite an email or contact method. But Karen and RJN's critiques highlight my concern. Journalism today unfortunately arrives with a pre-established bias. Yours is a time certain for treating with immunotherapy. Our collective response is there is no time certain for starting or completing any specific therapy. There are guidelines and therapy decisions are best left to patients and their doctors period, full stop. We have too many on the sidelines trying to dictate what treatments we should have and for how long. We certainly don't want to give ammunition to insurance or government bureaucrats that affect OUR lives! My disease has largely been ignored by society for almost 20 years of survivorship tenure. Now lung cancer has become a "thing" because most immunotherapy research started on lung cancer. It is the only form of therapy that is effective against all types of lung cancer (small cell, large cell, non small cell). We'd like to keep it that way. Stay the course. Tom
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