Tom Galli

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

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

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

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

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

I'm going!

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

Gillianmillian, I'll add my welcome to Lou's. Spiculation is a characterization, or description, of the appearance of a nodule in a CT scan. It is not a diagnosis. As Lou points out, a tissue biopsy and histology examination by a pathologist is the only way we can diagnose lung cancer currently. I completely understand your concern. Having an unresolved CT that shows something but explains nothing is maddening. But after almost 20 years of scans, I still get CT results reporting spiculated lung nodules. I was pronounced no evidence of disease (NED) in March 2007 after more than 3 years of continuous treatment resulting from a diagnosis in February 2004. I also have nodules that appear and disappear from scan to scan. To ease my uncertainty about these phantom nodules, I plot their location on a spreadsheet using the anatomical description in the radiologist's report. When I get a scan indicating a "new" nodule, I have the data available to address my apprehension. I do hope your spiculated scans turn out to be nothing. If not, you've found us, and while none of us are physicians, we are all subject matter experts with extensive experience in diagnostic and treatment methods. Stay the course. Tom

Hillham, Good to hear from you again. I’ve wondered how you are. Short answer to your query: yes, I have frequent bouts of respiratory aliments, and yes they seem to take forever to clear. I had chemo radiation as my first line treatment almost 20 years ago. Since then, I am plagued by respiratory stuff and even had pneumonia on several occasions that landed me in the hospital. COVID was a saving grace. I walled myself off from society and didn’t have a single chest illness for nearly 3 years. We ventured on a late January cruise to test the waters and half way through I was down for the count coughing, wheezing and sneezing! Recovery took a month! Thankfully it did not test as COVID but I went down hard. I wish I had hopeful news to convey about enhanced resistance in time after treatment but I don’t. Stay the course. Tom PS—check in from time to time. We worry!

We are all someone! Welcome here. Lou, Karen, and Lily have conveyed helpful information about your plight, and your wife's. Arguably, yours is the greater burden. You are not treated but instead, stay on the slide line and watch the mayhem unfold, helpless to influence outcomes. Then there are your children, their questions, and your struggle to explain. I am approaching 20 years of life after being diagnosed with Stage IIIB non-small cell lung cancer (NSCLC), then progressing to Stage IV after supposedly curative treatments. My wife and I occasionally review the bidding of my time in treatment and her feeling of helplessness. We both suffered from uncertainty. Mine was measurable in time from treatment to treatment, from scan to scan. Martha's was a long uninterrupted interval of deep disquiet. She had no yardstick to her doubt. She had no way to relieve my burden. She was in a void of vulnerability with only the dimmest light showing in time hereafter. Now, almost two decades later, her recollections are still chilling. As I listen to her characterizations of my lung cancer experience, I realize she had only faith to rely on. Off time we forget that faith is more than a theologic construct. It is an innately human trait centered on belief, confidence, and conviction. She was firmly grounded in the idea that I would survive. Her grounding planted a seed of hope that sprouted into a long life, a full life together. I believe from faith comes hope. She could not see the chemotherapy agents attacking my cancer. She could not touch the ionizing radiation that annihilated my tumors. But she did believe these agents were working. Her faith fostered belief and ignited hope for both of us. And "hope is a good thing" It is "the best of things." And "no good thing ever dies." Be not concerned about the future. To do so means trying to carve out life in rocks that are impenetrable. Live in the day for your family. Look for little instances of joy in your daily life and when you find one, celebrate. Stay the course. Tom

Welcome May! It is so very nice for you to join us on the forum. I'm praying for a NED scan on the 31st! Stay the course. Tom

Karen, Your question: will Hope Summit sessions be available virtually? I've heard this question asked a number of times and the short answer is there will be no "real-time" virtual sessions during the forthcoming summit. Some sessions may be recorded and posted online after the event. Stay the course. Tom

Padma, Good question. Let's hope someone has experience. Welcome here. Stay the course. Tom

Mary, Welcome here. I completely understand your devastation. A loss of a loved one anytime is traumatic; a loss while struggling with lung cancer is far worse. Having found us, you are not alone. Stay the course. Tom

Bernadette, Kristi is a Registered Nurse staff member who works in patient support for our LUNGevity Foundation. She has an amazing amount of experience with patient support and sustainment for those in treatment with our disease. Please reach out to her and let her help. Stay the course. Tom

Bernadette, You found us so you are not alone. We completely understand your experience. Many of us have also experienced family trauma as they process a lung cancer diagnosis. My father wouldn't (couldn't) talk to me during my 3-year treatment phase. We all receive a "death sentence" if we believe the survival statistics that embody a lung cancer diagnosis. I was diagnosed 19 years ago and given 6 months to live. My counter to the statistical bad news is if I can live, so can you! I note you are receiving combination chemotherapy (conventional chemotherapy paired with immunotherapy). That is a very powerful and effective new treatment method and there is every reason to believe that it will successfully eliminate your cancer. Here is some information about immunotherapy that might be helpful. We are your support system and stand ready to help you during treatment and beyond. Stay the course. Tom

Cheri, Welcome here. I do hope your Targeted Therapy (Tagresso) continues to be effective. Stay the course. Tom

Kamoto, Ensure you tell your medical oncologist about any homeopathic remedies you intend to try before using them. Some don't mix well with chemotherapy, targeted therapy or immunotherapy. Stay the course. Tom

Jack, Oh my, your post is grand good news. NED is a wonderful outcome. Look forward to those monthly oncology consults stretching to quarterly, then 6 months, then yearly. I'm now at the yearly check and even have the luxury of a low-dose CT scan with no infused contrast. Stay the course. Tom

SATo, I, unfortunately, had 3 thoracic surgeries all within the first year of my treatment. Recovery from each involved a great deal of breathlessness. Why? In a medical sense, I wouldn't know but in a practical sense, I think it was my system adjusting to the reduction in total lung capacity available for respiration. My experience suggests that breathlessness is a normal condition after thoracic surgery that removes portions of one's lung. For me, it was a temporary condition and I learned to gradually adjust to my adjusted lung capacity. It took time but your husband is doing the right thing by getting up and moving about. In my case, it took about a month for my pain to abate and about 3 months to completely discard the breathlessness. Stay the course, Tom

Sally, Welcome here. I'm sure someone with the Adenocarcinoma HER2+ will be along to answer your question soon. In the mean time, here is some information on your treatment that may be of interest. Stay the course. Tom

Pizza Margherita!

Julie, Welcome here. I normally link LUNGevity’s Lung Cancer 101 knowledge base in my responses but am at sea on a cruise ship struggling with a small screen and big thumbs. I wrote a blog on PET scans in my Stay The Course Blog on this Forum. It explains Standard Uptake Values (SUV). Normal cellular uptake ranges from 2.0 to 2.5. Inflamed tissue injury, radiation scar, sutures can show at about 4.0 to 4.5. Anything higher is presumed to be a metastatic cancer response. Your uptake at 13.7 should be concerning. Tumors shrink, sometimes without treatment. Moreover, measurement techniques or CT machine tolerances vary and these can explain differences in reported size. If it were me, I’d press for a biopsy, even if it is performed by surgical means. A 13.7 SUV is too concerning to do nothing. I’d see another thoracic surgeon and get a consultation with a medical oncologist soonest. Stay the course. Tom

Mark, Here are my best tips for success. I've been at this a long time! Ten Steps to Survive Lung Cancer Hope is a Good Thing Predicting Doom Ninety Percent Mental Reflections on Infusion Some Thoughts on Medicine What of Hope Stay the course. Tom

Mark, I was diagnosed almost 19 years ago with squamous cell non small cell lung cancer (NSCLC), the same type you have. My first therapy was fractional radiation (6 weeks, M-F) and weekly Taxol and Carboplatin. Your treatment differs from mine in a very significant way: you are having combination chemotherapy (Taxol) and immunotherapy (Keytruda). This type of treatment was unknown when I was diagnosed and immunotherapy is a game changer in our disease. Lung cancer is an ominous situation. It is difficult to arrest because it mutates around conventional chemotherapy. That is where the immunotherapy plays a big role. It trains your body's immune system to recognize both the cancer and mutations and kills both. So I would put a hold on your prognosis. You may do very well indeed. One more thing--if I can live, so can you! Stay the course. Tom