Tom Galli

Good Bro, I am so very sorry you lost your brother. While being bedside was difficult, it was both comforting and kind. Thank you for supporting your brother's battle to the end. Stay the course. Tom

Certainly your post about your mom's lung cancer is allowed! You are most welcome here. I'm assuming from your post your mom had chemo radiation to a single tumor. Further, I assume the tumor was in the left lung near the vena cava and the tumor responded to this therapy. Then she had progression to the liver and started immunotherapy. Now she's had progression with bone metastasis (bone mets) to the hip and pelvic bones. Your mom's doctor reports no more treatment options. If my assumptions are correct, there should be more options. She might change the type of immunotherapy and precision radiation should be able to treat the hip and pelvic mets. Here is a link to information about radiation used to treat lung cancer. Click on the right pointing arrow with the topic: How is radiation therapy administered? Scroll down and read about the types of EBRT. IMRT, SBRT or proton therapy (collectively termed precision radiation) are all options that can effectively and safely deal with your mom's bone mets. I'm sure precision radiation is available in Ireland. I don't know the Irish medical system but perhaps a change in oncologists is in order. From the information you provided, options are indeed available. Stay the course. Tom

Denise, In my first year of treatment, I had 3 thoracic surgeries. The first removed my right lung and the subsequent 2 repaired sutures at the bronchus stump. After my second surgery, I was sent home with a chest tube and it remained installed for 6 weeks. I had to go to the hospital each week to change the receptacle. Buckling into the car seat was a nightmare of discomfort. The result of all this mayhem is chronic pain at about 4.5 out of 10. How does one live with chronic pain? You can read details by reading my blogs, and this one might be a good place to start. I also wrote a book about my treatment experience and you might want to search Amazon for Scanziety. How does one deal with chronic pain? I had to learn to tolerate it throughout the day. I had all the nerve pain meds (Lyrica and Gabapenton) to no avail. I also used narcotic pain relief (Fentanyl patches and Oxycodone) and these camouflaged the pain but didn't relieve it. My doctors and I finally realized I needed to find a way to cope during the day and focus on a strategy for sleeping because sleeping with chronic pain is a challenge. We settled on a 0.5mg dose of Xanax taken about 30 minutes before bedtime. I've been taking this now for nearly 17 years and it works, most of the time. Sometimes muscle cramps or a bad coughing spasm amps my incision pain and I use Tramadol in place of Oxycodone and Fentanyl. I find Tramadol to be effective and importantly I had less of a narcotic hangover the next day and far less constipation. Welcome here. I hope you find relief. Stay the course. Tom

Sonny, Of course you are not handling this well. It is par for our lung cancer course. I'll add a couple of suggestions to Lou's wise counsel. Trying to cope is the right attitude. Your husband's battle will be a long one and you both need to acquire coping skills. How is this done? I think it is the right combination of persistence and prospective. Your husband faces an arduous treatment regime and lung cancer rarely cooperates. I note he's having combination Taxol, Carboplatin and Keytruda. I had 18 infusions of Taxol and Carboplatin in the course of 5 lines of treatment to defeat my lung cancer. These two drugs together are heavy hitters but adding the immunotherapy (Keytruda) concurrently enhances effectiveness. Still, don't expect a one and done treatment plan. Late stage diagnosed disease requires persistence. Settle in for the long game! In terms of prospective, don't forget that even during the treatment battle, there is still life to lead. Don't put off family events. Try a change in scenery, even if it is to a proximate destination to enjoy a weekend together away from treatment. I note you live in Southampton. I grew up in DELCO and suggest a weekend together at the Grand Hotel in Hershey or perhaps Atlantic City. Do your best to step outside of the treatment environment and enjoy life together. Coughing is an expected symptom. Here are my best tips to minimize coughing. I found a steam shower to be the best way to break my coughing spasms. And, you should eliminate dust, every way possible. When the chemo takes hold, expect some relief but I spent a lot of time in the shower, steaming up. Stay the course. Tom

LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done. Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice. We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences. Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’” Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th. Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed. Stay the course.

James, Welcome here. Tagrisso side effect are listed in the Targeted Therapy area for Lung Cancer 101. Here is the link. Scroll down the types of Targeted Therapy to the side arrow for EGFR and read the general side effects for EGFR medications. At the bottom of this information box is a link for tips for managing treatment related side effects. I had a related drug during my 4th line therapy -- Tarceva. My side effects were an extensive head, face and neck skin rash and very troubling diarrhea. I was prescribed cream to apply to my head, face and neck and that lessoned my rash symptoms but nothing really affected the diarrhea. Stay the course. Tom

JHP, Fractional general radiation, given with non precision methods, is usually a M-F treatment. But I note your dad's fractional radiation is as palliative therapy for bone mets. I suspect the sequence change is related to the palliative therapy. I'm not sure if a 5 concurrent day treatment plan for palliative therapy is required. It is a good question for your father's radiation oncologist. Stay the course. Tom

Oh my! It is a possible sign of progression. We can hope it is not and perhaps the next CT with contrast 3 months from now will reflect good news. Many of us have dealt with progression. I've had 5 in my treatment history. If it is progression, perhaps a change in treatment is called for. Stay the course. Tom

Shelly, Welcome here. Pleural effusion is something a lot of us experience. It is an irritation of the lining between the outer lung wall and the inner chest wall and is often a byproduct of cancer metastatic activity. Hopefully Tagrisso will start attacking the cancer and minimize the irritation, and if that is the case, your body will absorb the fluid. For some of us, however, pleural effusion continues to be a problem. In that case, a drain is surgically installed to move the fluid from the pleural space into the abdomen cavity. Hopefully, you won't need this surgery! I'm not aware of any treatments or therapy, other than reducing the metastasis or installing the pleural drain that will stop the effusion. Let's hope your Tagrisso takes hold! Stay the course. Tom

Sally, Are you taking an anti nausea prescription after your chemo? Are you taking the anti nausea medication in addition to omeprazole? Most of us have a nausea reaction starting about 2 days after infusion but these days, a wide range of anti nausea medications eliminate that symptom. Stay the course. Tom

Sally, Welcome here and Happy New Year! Many of us suffer with GI issues during chemo. And if you had GERD before your treatment, chemo is not likely to improve your symptoms. Do I understand your medical oncologist suggests taking omeprazole twice a day instead of once? Here are some questions to help me understand your difficulty. Did you have GERD before your lung cancer diagnosis? Were you symptom free for a period of hours/days after your infusion? Were you taking omeprazole before you started lung cancer treatment? Stay the course. Tom

Sara, Welcome and Happy New Year; I wish we didn't need to share good cheer and discuss lung cancer concurrently. Perhaps someday we won't. So a couple of things come to mind. First, has your Mom consulted with a medical oncologist? Thoracic surgeons are an important part of the lung cancer treatment team but the surgeon's work is done. You Mom will need an oncology (medical and perhaps radiation) and perhaps a pulmonology consultation. Certainly she have a sleep study or perhaps the hospital apnea record is enough to go straight to prescribing a CPAP machine. I've been using mine successfully since 1990. The first thing your Mom should discuss when seeing the surgeon AND medical oncologist is follow up chemotherapy. I'd rely more on the medical oncologist view of follow-on chemo than the surgeon's view. For some diagnosed at Stage 1 or perhaps 2A, post surgical chemotherapy can be waved off but most of us should really have it. I had presurgical chemo radiation after diagnosis, then surgery and a years worth of surgical complication. I was supposed to have post surgical chemo but the corrective surgery got in the way and cancer metastasized to my left and now only lung. This blog links a study that speaks to the dangerous nature of lung cancer: its frequency of recurrence after supposedly curative treatment. Post surgical chemo adds a margin of safety for recurrence. I think it is pretty common that biopsy tissue be sent to a laboratory after a Pathologist's histology examination. This second biopsy is to screen for suitability for treatment by Targeted Therapy and Immunotherapy. These therapies are game changers in survival and so press hard for the laboratory analysis. Yes it is common to add targeted therapy and immunotherapy as treatments alone or in combination with conventional chemotherapy. Blood test tumor markers for lung cancer are not commonly used. The scientific community is working on a diagnostic grade blood test biopsy but it is not yet a standard of care. So only tissue biopsies are used with our disease. Standard of care for lung cancer gets complicated. It is dependent on Stage and Type. I assume your mom is Stage 2A or 2B. Once these 2 conditions are known, a medical oncologist will walk you through the National Standard of Care the stage and type of lung cancer that your Mom has. Stay the course. Tom

Brian, Welcome here. I’m a near 19 year survivor of late stage diagnosed NSCLC, squamous cell. I’ve had every form of treatment (several repeats) but immunotherapy. I’ve also interacted with lung cancer survivors for many years and know many who have taken the alternative therapy road. I’m limited to responding on an iPhone because I’m visiting family, but I’ve blogged extensively on this site about alternative treatments. A short summary of my view might be: “if it feels good, do it but don’t expect it to be curative. For more details on alternative medicine, you might read my Stay The Course blogs on the forum. I’d link them normallly but find the small screen a challenge to navigate. Stay the course. Tom

Oh my, I feel so badly about your father and his treatment delay. You are Canadian, and I’ve read about responsiveness issues with your National Health Service. Might it be time to engage your elected parliamentarian to expedite your father’s treatment? No one in pain should be delayed treatment! Stay the course. Tom

Carrie, Splenic focus means a noted lesion in the spleen. If a biopsy of the lung tumor is performed and returns for cancer, all scan identified areas of the body are presumed to be the same type of cancer as found in the primary lung lesion. So no, a separate lung biopsy would not be required. As for the colon find, the SUV suggests possible metastatic activity. 15 mm refers to the size of the noted activity. I wouldn’t know if it is a polyp or an area of the colon itself that is measured as 15mm. Stay the course. Tom

JPH, The pain will decrease markedly after precision radiation starts. One caution on changing radiation oncologists, however. A treatment plan must be developed by the treating radiation oncologist and reviewed and approved by a physicist (to check safety) for each area of the body treated. Changing radiation oncologist starts the treatment plan development over. Doctors are reluctant to use treatment plans devised by other doctors and confirming physicists will almost certainly require a new plan on change of a doctor. So, I'd stay with your dad's radiation oncologist. So I wouldn't advise a change to accelerate treatment for about a week. Stay the course. Tom

Carrie, Hypermetabolic means an abnormal increase in metabolic rate. In the context of a PET scan, it means areas were noted with Standard Uptake Values greater than say 2.5. In context your report of "Hypermetabolic, irregular sub pleural nodules in the right upper lobe (SUV 5.8, 13mm", the words mean there is an abnormal area of increased metabolic activity at a 13mm nodule below the pleural area of the lung in the right lower lobe. This suggests malignancy but there are other causes of increased metabolic activity and a biopsy is needed to confirm cancer. And, yes, unfortunately, you are correct in your interpretation. I looked a long time for a SUV chart and surprisingly didn't find one. I think it is because there is a lot of variation in SUV returns and many reasons besides metastatic cancer that can cause an elevated SUV. In my case, I've been NED since March 2007 but my PET scans still return a SUV of about 3.5 in an area corresponding to my thoracic surgery incisions. I have a chronic pain condition in this area due to too many incisions! Here is a blog I wrote sometime ago that explains PET scans and SUVs that might help. Merry Christmas and Stay the Course. Tom

Joost, Welcome here. I Googled your trial information and learned you are enrolled in a Black Diamond Therapeutics drug trial for acquired resistance EGFR mutation in NSCLC, adenocarcinoma. Early on in my treatment, I had a Targeted Therapy drug called Tarceva, but it was administered before scientists realized it only worked on a small percentage of EGFR adenocarcinoma patients. My NSCLC was squamous cell, and the only thing it did for me was give me skin and digestive issues. And again, since I had the drug very early on, there was nothing available to address the severe acne that invaded my face, head and neck. The good news of you post however is the nodule reduction. That indicates the drug is working and if so, that is the best of news. Merry Christmas to you and again welcome. Stay the course. Tom

Loving Daughter, There was a time in my treatment history when we investigated hospice options. My 4th line treatment was not working. We were despondent. I was comforted knowing I would be pain free and my wife would have assistance taking care of me. I recalled being told that morphine administered orally would control nausea. You might ask the hospice staff about that remedy. I wish I had suggestions for you. I am a man of faith and relied on faith to sustain me during treatment. Perhaps that avenue is available. I would try and spend as much time with your dad as possible. Remind him of the good times. Try to get him to tell you stories of his childhood. You might help him contact distant family members and use the FaceTime feature of the phone to allow him to see folks. I know this is a time of tremendous sadness but remember your dad is still with you. Relish every moment. Stay the course. Tom

JHP, Precision radiation (CyberKnife, a form of SBRT) saved my life so I am a fan. Precision radiation is a technology dependent treatment. So I'd go to a place with the newest and most technology. Because of technology cost, the best radiation oncologists tend to congregate in hospitals with the best technology on hand. I can answer your mapping question. Each area to receive precision radiation will require a mapping procedure. Mapping is performed using a special CT scan. In my case, I had an initial scan. Then the radiation oncologist and physicist devised my treatment plan and a second CT scan was administered to confirm the radiation path. So every lesion treated will require a separate mapping. I also strongly recommend Lou's suggestion of consulting with a medical oncologist as soon as possible. It might be best to choose a radiation oncology hospital, then a radiation oncologist and a medical oncologist at the same hospital. These two disciplines will need to collaborate because your husband will require systemic treatment perhaps during and most certainly after radiotherapy. Stay the course. Tom

teresa.t, Please contact our Registered Nurse Navigator Kristi (kgriffith@lungevity.org) and or our Lung Cancer Social Worker Angie (AJames@lungevity.org). Both are members of our Patient Services Department and stand ready to help you deal with our horrible disease. Stay the course. Tom

SATo, Your's is a tough question: "did anyone have a bilobectomy?" The term means surgical removal of two lobes of a lung. It can be confusing because the left lung only has 2 lobes while the right has 3. So, it is not a commonly used term. My right lung was removed in May of 2004 after a diagnosis in February. I had a very large tumor that completely filled the main stem bronchus but thankfully no other signs of disease. I had pre-surgical chemo radiation to shrink the tumor and allow the surgeon to make a complete resection. I was 54 at the time of surgery and my surgery was an open thoracotomy. While the lung was successfully removed, pre surgical chemo radiation affected suture healing that resulted in two subsequent thoracic surgeries and four stent procedures to correct. I had about a year's worth of surgery. My treatment plan was to have post surgical chemotherapy to address stray cells in my blood and lymphatic systems but follow-on surgical procedures canceled chemotherapy. Thus, I emerged from surgical mayhem into recurrence mayhem with three tumors found in my left (only) lung. Admittedly, mine is a rare case but surgical complications must be weighed for anyone regardless of age. I've known survivors who've had thoracotomies in their late 70s and early 80s. You may want to read the string of posts by member Minh. She had a difficult surgical case. Here is her dialogue. Each of us is different and predicting one's outcome based on another's experience is problematic. I know waiting is maddening but I think your best course is to learn the results of the biopsy before deciding on a treatment plan. There may be Targeted Therapy or Immunotherapy treatments, perhaps in concert with radiotherapy that might be effective but less invasive. Stay the course. Tom

June, So glad to hear you are on the mend. Thoracic surgery by any method is tough sledding. Keep at the spirometer and walk, walk and walk some more. I’d advise staying out of circulation during the holidays. A chest cold after thoracic surgery might land you back in the hospital. Have a joyous Christmas and I look forward to a NED New Year. Stay the course. Tom

Claudia, Simply marvelous! Stay the course. Tom

This link shows the schedule and has the Zoom connection information for LUNGevity's Virtual Meet-ups for December. Come join us. Stay the course. Tom