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Tom Galli

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Everything posted by Tom Galli

  1. Ashley, Welcome here. I see you've met Lexie and Michelle and their counsel is superb. I was diagnosed stage III non small cell squamous cell lung cancer in February 2004 and that was a very long time ago. I had a very large tumor encased in the main stem bronchus of my right lung and I had no symptoms, including shortness of breath, until I started coughing up blood. Once I started coughing, I experience the same problem as you. Here are a couple of remedies that worked for me: sitting in a steamy shower for lengthy periods, and using a nebulizer that atomized the drug albuterol. The later will require a doctor's prescription and purchase of a nebulizer. Your general practice physician can give you the script (any of your doctors can) and your GP clinic may have a nebulizer to lend you. They are pretty inexpensive and I ended up purchasing one on Amazon. I use it during pollen season and if I pick up a chest cold. I'm an engineer also. You'll know why directing the very hot water from the shower produces more steam if it strikes a shower wall rather than the shower floor. And, thank the Lord for spell check programs! PET scan is next up, then hopefully a MRI to clear the brain. Perhaps, the biopsy lab result will be available in concert with scan results. I had surgery (right lung removed) after chemotherapy and fractional general radiation. Radiation affected suture healing and sutures broke twice causing a multitude of surgeries and stent placements to seal off the empty chest cavity. Your surgery should be much easier. Here are some suggestions for surgery prep and recovery. Do you have a medical oncologist on your treatment team? Some of us after surgery are offered a course of chemotherapy as an adjuvant therapy. This is designed to sweep the blood and lymphatic vessels of cancer cells that may be emanating from your tumor. Generally the size of your tumor drives the need for this treatment. My surgical mayhem denied me the opportunity from having this treatment and after I recovered from surgery, a scan found three tumors in my left (only) lung. So I'd be inclined to take it if offered. Unfortunately, lung cancer has a high probability of recurrence after successful treatment. What are the probabilities? Here is some information. You might want to read in to our disease and this is a good place to do so. Lung cancer comes with a challenging vocabulary and the resource I suggested will help you understand our lingua franca. Stay the course. Tom
  2. Debbie, Welcome here. When I emerged from my 3 surgeries (1 removed my right lung, 2 to deal with suture failures) I was also in a dark place. When I endured recurrences, it got darker. When I failed to address my depression, it got darker still. But, consider that I was diagnosed in 2004 and if I can live so can you. Lexie's comments about a life changing diagnosis of our disease are spot on. Her advice about the need to seek a new normal is also appropriate. So, how does one go about doing that? First, recognize you are not alone. Stay connected with this forum, discuss your uncertainty, and seek information on how and what we did (are doing) to deal with it. Next, recognize and accept that the pace of this disease is often not one and done. We pray you don't experience a recurrence, but you'll likely have screening scans for the rest of your life. And each scan will drag you back into uncertainty. I've been scanning for almost 18 years and each one is a trip down the scanziety highway! Don't bottle up your uncertainty; don't try and do this thing yourself. Last, lean about this disease. Here is a good place to start. Knowledge is power and gives one the ability to ask appropriate questions to your physicians. And, I completely agree with Judy's suggestion to seek therapy. I didn't for a long time believing myself man enough to deal with depression. That was a big mistake. You need to talk about how this disease is affecting you. While we are a resource for questions, we are not trained therapists. Stay the course. Tom
  3. Cordelia, Welcome here. I have fond memories of Salt Lake City, once stationed at Ft. Douglas. It still marvel how quickly one could go from urban to wilderness. I recall my early morning jaunts running east up hill, past the WWII prisoner of war barracks, and then into unspoiled wilderness. That part of the fort was so remote, wild animals would just stand there and watch the crazy Army officer run up hill! Unfortunately, we also share a diagnosis. Mine was squamous cell non small cell lung cancer and in February 2004. I've had every treatment for the disease except immunotherapy and have 5 recurrences during my treatment history. Running up the treatment hill is no fun, but many of us also get to experience running down hill. I do hope you are among the many. Stay the course. Tom
  4. Steff, I've missed you and of course was very fortunate to meet your mother at a Lungevity Summit. I have fond memories. As a survivor, I can tell about my diagnosis and treatment journey, but I can't begin to fathom what and how my wife felt as she helped me face diagnostics and treatment. Here experience was so traumatic that she strays from discussing it. To watch the one you love endure and to have no way of intervening to stop the mayhem is frightening and disheartening. You know that feeling and I am so happy you are back to help those who care for us. You are a godsend. Stay the course. Tom
  5. Chuck, Welcome here. We understand, everything you are thinking and feeling. A lung cancer diagnosis is a surprise that disappoints with frightening consequences. But, thankfully these days, consequences are less severe. I believe knowledge is power; it was for me. You've got a new vocabulary to learn and here (Lung Cancer 101) is the place to go as step one in understanding our disease. In your immediate future you face the diagnostic trail. You should focus your reading on that process initially. And if you have questions, this is the perfect place to ask. Stay the course. Tom
  6. Welcome Pam, I'm very sorry to learn of your mother's diagnosis. I also recommend Lou's suggestion to visit the Caregiver Resource Center. While I am a very experienced lung cancer survivor, I know my wife had the hard row to hoe but I didn't walk in her shoes. Seek guidance from those that have. One benefit of this site is asking questions. While we are not physicians, we all have PhDs as lung cancer patients. We are available to answer questions when your mom's doctors are not. Stay the course. Tom
  7. Chuck, Welcome here and sorry to learn of your diagnosis. Normally, our disease is diagnosed with a tissue biopsy. Have you had this procedure yet? It is indeed scary and we are glad you found us because we can help with understanding the disease and support as you go through treatment. While none of us are physicians, we are very experienced survivors and collectively have experienced every treatment in the lung cancer treatment arsenal. You'll have questions and we'll provide answers. Here is something I often provide to the newly diagnosed, and here is a place where you can read about our disease. You'll find it to be an easy read but if you have questions, ask away. Stay the course. Tom
  8. Bang, I can't answer your blood in mucus frequency question. Again, if it were me, I'd be booking a consultation with a pulmonary specialist. Stay the course. Tom
  9. Bang, Welcome. Expelling black mucus, should you worry? Yes. You should see a doctor and you should discuss your medical history including the 6mm nodule discovery. If the follow-up physician was your general practice physician, I'd consider a consultation with a pulmonologist. I'm not sure what the "it" refers to in you last sentence but I'll make some assumptions. Is expelling blood while coughing always related to lung cancer? No but it is a serious condition warranting medical investigation. Is a 6mm lung nodule always related to lung cancer? No but the combination of a discovered nodule and the coughing episode warrant investigation. If it were me in your circumstances, I'd take my scan report with me to a pulmonologist consultation. Stay the course. Tom
  10. Karen, Well--that is grand good news! I do hope your treatments keep things moving in the right direction--towards NED (no evidence of disease). Stay the course. Tom
  11. BJeng, How best to deal with treatment caused coughing? Here are some things that worked for me. First, get a house full of .1 micron HEPA filters. Put them in every room and change the filters regularly. Do everything you can to eliminate strong odors like after shave, perfume, cooking fumes and the like. Encourage regular (six times per day) Albuterol use. This soothes air passages and makes them less susceptible to irritation. Discover the benefits of a steam shower. We purchased a small shower stool and I sat in it while the shower blasted full hot on a tile wall. Breathing the steam was very soothing. During my radiation, I had one 3 or 4 times per day. I still use this technique to break-up a chest cold. In my 4th line treatment, I discovered severe appetite loss. My wife who is a dietician and RN churned up chocolate mint ice cream that included crushed mint Oreo cookies. She read that mint flavoring is often appreciated for those who struggle with taste sensation. I lived on ice cream and I maintained my weight. Stay the course. Tom
  12. RJN, "Don't be too patient!" Now those are words for lung cancer survivors to live by. Murphy's Law always operates: "if something can go wrong, it will and at the worst possible moment." I do hope your lab results are in soon so you can start treatment. Stay the course. Tom
  13. I'm afraid the political tag that's been put on the COVID vaccine is here to stay. That is sad. There is this popular hue and cry today "to follow the science" uttered mostly by those who do not understand science. In science, nothing is settled. There is a hypothesis and then tests and experiments to prove or disprove this hypothesis, but even a proved hypothesis yields only a theory--not a fact. And a disproved hypothesis advances understanding. Theories are subject to change. Theories are not perfect understanding. There is data on all vaccine safety and effectiveness, but even this data shows examples where vaccines are unsafe or not effective. Mask safety is a theory; social distancing practice is a theory. Vaccine effectiveness is a theory, and vaccine safety is a theory. Are they all best practices? Yes, absolutely! Are they unquestionable facts? No. Is it smart to establish policy based on best practice? Yes, absolutely! Is the policy always right? No. I do hope policy discussion and formulation for a future medical emergency resembles that of the Higgs "god particle" discovery announcement. Everyone in the room understood the concept of "five standard deviations" for accuracy! We lung cancer survivors understand living with uncertainty. Perhaps the rest of society should go to school on our experience. Stay the course. Tom
  14. Mona, I have not experienced a diagnosis of pulmonary fibrosis concurrent with lung cancer, but the post chemo drop in blood counts was typical after each of my infusions. Sometimes, I'd receive an injection of Neulasta or Procrit to address low white and red cell counts. Has your husband's doctor suggested these remedies? How long did my side effects last after chemo? They were generally over 14 days after infusion. My infusions were all on a 3-week cycle and the third week I felt almost normal before the mayhem started again. Here is more information about my infusions and side effects. Do encourage your husband to eat--anything! Chemo destroys cells (both normal and cancer) and calories are necessary to replace cells. I also experienced coughing during my first line treatment. Is his coughing worse that that experienced before his lung cancer diagnosis? Have a safe trip. Stay the course. Tom
  15. Sandy, Welcome here. To restate, have folks been diagnosed with lung cancer without noting a primary mass in the lungs? Yes. I'm not sure I understand the characterization of your mom's MRI result but small cell lung cancer is commonly found in the brain. UK's medical system differs from that in the US but normally, one receives a lung cancer diagnosis (of any type) as the result of a histology examination of tissue performed by a pathologist. This examination is the diagnosis means usually revealing the type of lung cancer, non small cell or small cell, and if the former the subtype: adenocarcinoma, squamous cell, or rarely large cell. Histology results are generally available hours after the biopsy. Then tissue samples are sent for further laboratory analysis to yield information about biomarkers. In the UK, perhaps histology determinations take longer. It is unusual to receive a diagnosis of lung cancer without noting a primary tumor. My tumor was noted immediately in the main stem bronchus of the right lung. Its size made it hard to miss. But unusual is not impossible. In the US, part of our diagnostic process is to administer a PET/CT after the initial CT and diagnosing biopsy. The PET is used to stage the disease. Staging is normally determined before a treatment plan is designed. Lung cancer is often diagnosed without symptom presentation. I've been linking citations from Lungevity's Lung Cancer 101. Give it a read and let us know if you have further questions. We do hope your mother's thrombosis is successfully treated. Stay the course. Tom
  16. Brent, Welcome here. I didn't use the VA hospital system when diagnosed with lung cancer. As a retired soldier, I was (am) eligible for TRICARE and in 2004, I was working full time and had the benefit of a very good employer-provided health insurance plan. So, I can't give a first hand report but I've known many Vets who've been treated for lung cancer in the VA system. And, from their reports, treatment is, on par, with that received from civilian hospitals. Of course, the most important benefit, especially if one is treated with targeted therapy or immunotherapy, is the no cost basis to the Veteran. Co-pays for exotic chemo drugs often require deep pockets. Most complaints about VA medicine is negotiating the treatment eligibility priority. If you are contemplating civilian care, a good plan may be to use that resource, and keep the VA in reserve in the event you are prescribed exotic pill form chemotherapy. Then I'd use the VA pharmacy to obtain your medicine cost free and avoid taking a second mortgage out on your home to settle co-pays. Stay the course. Tom
  17. Steph, Always celebrate! Take every opportunity to acknowledge the tenure events. We are also looking forward to good outcomes from your January scan! Stay the course. Tom
  18. Kris, EGFR results are important but I see no harm in having a radiation oncology consult. There are two disciplines who treat our disease: medical and radiation oncologists. Each brings different tools to the job and each has value. Glad your surgery recovery is going very well. Chest tube discomfort can be a "pain" but I found it leaves quickly. Stay the course. Tom
  19. Jeng, Has tissue sample from biopsy been submitted for follow-on laboratory testing to assess suitability for targeted therapy and or immunotherapy? This would be my first question at the med onc consult tomorrow. Adenocarcinoma is the form of NSCLC that can display treatable tumor markers. These markers point to specific targeted treatments that are very effective in controlling or eliminating tumors, and it is very important to check for these markers before starting chemo. Moreover, immunotherapy suitability requires an assessment of the PDL status of the lung cancer. Both of these are products of the follow-on laboratory analysis. If DH's treatment is as stated, he may be able to work through at least four of the six-week cycle. I am assuming the chemo-radiation you are mentioning consists of fractional doses administered over a period of six weeks. In this first-line treatment, radiation is the primary weapon while chemo (normally administered once per week) is an adjuvant therapy. Here is more information on radiation treatment for lung cancer (read in particular at the right arrow: How radiation therapy first into lung cancer treatment plans). Fractional general radiation administered over a six-week cycle is normally very tolerable for the first three weeks. Then fatigue starts to set in. I had this treatment as my first-line and it was very effective. But, during week 5 and 6, I could barely walk from the car to the radiation clinic. Stay the course. Tom
  20. Mona, With morphine for pain therapy comes constipation. When I was prescribed narcotic medications, my doctors always suggested over-the-counter formulations for constipation. I'd advise a call to the infusion center to ask the nurses if he can safely have this medication along with his current treatment. Stay the course. Tom
  21. I waited about a month from the time the tissue biopsy results were known before treatment started. During this dwell period, I had sessions with radiation technicians to set my orientation for fractional general radiation, part of my first line treatment. My first treatment was daily radiation (M-F) for 6 weeks and weekly infusions of Taxol and Carboplatin. As I recall, I had several blood draws about a week before my first chemo. I was diagnosed in 2004 and since then, time between diagnosis and first treatments in the US can often be longer. Today, biopsy tissue samples are often sent for follow-on laboratory analysis do check for targeted therapy and immunotherapy suitability. This adds about 2 weeks to start of chemotherapy. Stay the course. Tom
  22. My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I? I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor. On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character. Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.” A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome. What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character! Stay the course. Tom
  23. Jeng, My wife as caregiver was not a miracle worker, and I was not a model patient. She had to "encourage" me to complete diagnostics, prod me to pay attention to oncology consultations, and play drill sergeant driving my laps around the ward hallways after my surgeries. My point: only one of you needs to engage to drive diagnostics, treatments and outcomes. So, drive. My wife was not particularly kind to me during my treatment, but her tenaciousness and overwhelming dedication to the cause was what saw me through. Only one needs to ask the terribly preceptive questions during consultations. When the doctor suggests a course of treatment and your husband hems and haws on agreement, just say: "Doc, we'll email or telephone you an answer tomorrow." Then work on him at home. Lock and load, put on your Smoky Bear drill sergeant's hat, and motivate. Stay the course. Tom
  24. Stephen, Tough question. Let's let data help provide an answer. Read this (and sorry about the baseball analogy but there may be a rough equivalent with Cricket). Recurrence makes lung cancer dangerous. The cited study suggests a 66-percent probability of recurrence given a successfully treated stage IIA diagnosis. I've had 5 recurrences in my treatment history and would do everything I could to reduce the probability of recurrence. Moreover, consider that the strength of post surgical chemo dose is normally less than when chemo is attacking solid tumors. This adjuvant treatment is designed to sweep the lymphatic and blood systems of cancer cells. Side effects at adjuvant does levels may not even produce side effects. You might not even lose your hair! Stay the course. Tom
  25. Qing, Should you convince your mom to do a tissue biopsy? Liquid biopsies are becoming more accurate but everything I've read suggests the inaccuracy stems from low tumor presence, and therefore few cancer cells in the blood stream to detect. If doctors think all of your mom's 8 tumors are metastatic, then there ought to be plenty of detectable evidence in the blood. However, I don't think it is your job to do the convincing. Your mom's doctor made a diagnosis sufficient enough to prescribe Tagrisso. The target for this medication when used in first line (first treatment) therapy is adenocarcinoma EGFR with exon 19 deletions or exon 21 (L858R) substitution mutations as detected by an FDA approved biopsy. I think it would be a real stretch for a physician to order a line of treatment if unsure of the type of cancer to treat. Liquid biopsies are FDA approved for specific applications. If it were me, I'd feel pretty comfortable about a diagnosis. There is always uncertainty. But, I'd believe the probability of misdiagnosis is pretty low. Stay the course. Tom
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