Tom Galli

Polly, True, cancer cells can mutate and become resistant to drugs. This didn't happen to me. My cancer came back 3 times after chemo, but each cycle of treatment saw a reduction is number and size of tumors. If it does happen, your doctor will notice unfavorable scan results. Often, a change in chemo drugs, or addition of an additional chemo drug is ordered to combat the mutation. I've read good things about gefitinib. I hope it works for you. Stay the course. Tom

Bart, Great news on your surgical results. I'm not sure what your nurse told you of chemotherapy that made you afraid. I've found, one should only fear things we don't understand. Your dust-up chemotherapy is a necessary part of your surgery. There will likely be some side effects. Go to this site - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/chemotherapy - and click on the down arrow on the question "What are some common side effects of chemotherapy." The list covers most everything I know about. Moreover, doctors and chemo nurses have medicine and procedures to help minimize these side effects. So, you know the possible side effects and know there are ways to minimize the amount of discomfort. Only one - hair loss - resists mitigation, but after each cycle of chemotherapy (I had 3 - 6 infusions each cycle), my hair grew back. You've gone through the tough and dangerous part - surgery. Complete your course of treatment to ensure you remain cancer free. Then, settle down and enjoy life. Stay the course. Tom

Meloni, A dim PET is a GREAT result from your pre-surgical treatment. Wonderful News! It sounds weird to congratulate one for being a surgical candidate but surgery is the best path to NED for a lung cancer patient. Here are lessons I learned from my thoracic surgery. Have a complete discussion with your surgeon with his or her plan for dealing with post-operative pain. Ask about specific medications intended for use. Ensure they are listed on the admitting orders. Ask about how many post-surgical drains will be used and where they will be placed. Ask how long they will remain in place. Buy some thick wool socks or better yet, Ugg slippers that are lined with wool. Depending on the chemo administered, you may begin to notice discomfort (pain or burning) in your toes or feet. The slippers are best because they act as a toe guard against the weight of your bed coverings. Go to local mattress shops and audition several wedge pillows. You may find it more comfortable to sleep with an elevated head and chest at home while recovering from surgery. Find the type you are most comfortable with and buy it online from say Amazon. You'll get a much better deal online. I find the high density foam to be the best for me. Start sleeping with the elevated mattress a week or so before surgery to get used to the position, One of the biggest problems I encountered was a post-surgical infection. Tell friends and family with cold symptoms not to visit you in the hospital or home while in recovery. Especially, stay away from school-aged children until you are fully recovered. A simple chest cold after surgery could put you back in the hospital. Eat vigorously and the right types of food. Now is not the time to loose weight. Post if you have questions. Stay the course. Tom

I read medical journals that cite studies with statistically valid data sets and analysis. These are peer reviewed. When I first started "reading into" lung cancer, I needed to google every other word but eventually the medical terms settle in. I've learned that cancer is a disease of our genes. Each of us has the genetic predisposition to have any kind of cancer. What is not well understood is what triggers the cancer gene to activate. Carbohydrates? Maybe but I've never read of that trigger. Stay the course. Tom

Greekgirl, For me my 6 weeks of radiation came in like a lamb and left like a lion. There was some skin redness and sore throat but they were controlled by medication. Not controlled was my loss of energy. I started getting really tired at the start of the third week. By week six, I was bed-bound save for trips to the clinic. My adjunct chemo - low dose Taxol and Carboplatin - was given once per week. This low dose caused me no immediate side effects. So it was radiation and energy loss was the biggest problem. I was supposed to have post surgical chemo (we call it dust-up chemo). But, surgical complications resulted in almost a year's worth of surgical procedures and recovery. Thus I didn't get it and the disease migrated to remaining lung. Had I had dust-up, my treatment would have been much easier. There is a term called standard of care that you will hear mentioned often. Post surgical chemo is a standard of care and that means that better outcomes result from those who have it then those who don't. Stay the course. Tom

Greekgirl, Glad you got the clarification. The location of your mom's tumor is indeed of concern. Radiation is a killing agent. Chemo mostly disrupts or precludes cell division or growth. Both can shrink tumor sizes. Sounds like you are on the right track. Stay the course. Tom

Greekgirl, You are asking hard but appropriate questions. Understand I'm not a doctor. Why surgery first? Lots of reasons. Most practices have what is called a tumor board. Various medical specialists discuss your mom's medical situation and often a change in treatment approach emerges. Given resection is the best way to achieve NED, her doctor could have reconsidered. You should ask. As to your second opinion's treatment recommendation, I had pre-surgical chemo and radiation for exactly the same reason your second opinion physician suggested: to shrink my tumor to allow surgery. There are downsides to presurgical chemo. First, it may not work, and second it could further complicate your mom's general medical condition. In my case, presurgical radiation and chemotherapy did shrink my tumor but it introduced complications of wound healing and my sutures failed requiring two more repair surgeries. Her surgeon ought to make the call as to your mom healing with or without chemo. Ensure the surgeon is aware of her medical condition. If the surgeon agrees resection is possible now, I'd be inclined to agree. I've found thoracic surgeons to be risk averse. As concerns risk, medically, remember your mom is facing a disease of death. Do nothing and it will occur sooner. Treat and it MAY prolong her life. There is little that is certain in this disease. Statistics predict for most, not all, surgery gives the best chance for life. It may not be a "life before diagnosis" but it can be an enjoyable life. Stay the course. Tom

Greekgirl, Am responding on an iPhone from a cruise ship so I'll be brief. Risks and recovery from resection: Of course, you are asking this question to her surgeon. Generally surgical risk is low. My right lung removal was safely done and my problems didn't start till about 10 days after surgery. I was discharged 5 days after surgery but caught something that caused an infection and re-hospitalized. Keep her away from all children for at least a month after surgery. In fact, limit contacted with everyone is something I'd suggest until she is well recovered (fully mobile, sutures removed and released by doctor). Post surgical chemo is normally given from 15 to 30 days after surgery. She should (I'd say must) have it. It kills cancer cells in the bloodstream. My surgical complications didn't allow for post surgical chemo and tumors appeared in my remaining lung. I can't answer the chance of metastasis after surgery or if post surgical chemo is not given with any precision. Cancer spreads. The longer it remains in the body, the higher the chance it will spread. As tumors grow, they direct the body to form blood vessels to feed the tumor. Doctors have likely concluded your moms tumor has not yet developed these vessels thus the proposed surgery. But they are looking at imagery and scan results. They won't know for sure till they do surgery. Depending on the type of surgery (minimally invasive) they might not know. Surgery is the best chance for achieving a NED (no evidence of disease) for your mom. I'd take it if offered. I apologized in advance for errors in this post. Am hampered by small text and large fingers. Stay the course. Tom

I'm not a doc so consider that limitation. The "raises the possibility of squamous differentiation" means to me the pathologist is not sure about the type of cancer. This introduces risk that Opdivo will be effective. Get a second opinion. Send the report to your mom's general practice physician. Wish I could give you a better answer but on vacation with limited connection to the web to research. Other LUNGevity folks have a view? Stay the course. Tom

Greekgirl, Stage IIIA, potentially surgically treated and negative for tumor markers right? Then, I'd try standard of care hoping to shrink tumor enough to allow surgery. My reason is surgery is curative while chemo alone is normally not. My confusion with the Opdivo choice is it is normally only effective against Adenocarcinoma that displays certain tumor markers. Does your negative for mutations mean an absence for tumor markers? Ensure you know if your mom's cancer can be successfully treated by Opdivo. Mutations and tumor markers are sometimes interpreted to mean the same thing. Stay the course. Tom

Cassie, I'm not a radiologist nor a medical doctor of any type, so keep that in mind as I offer my opinion (likely wrong). I'm not sure about the significance of the lymph node discussion but the report of scaring on the left node got my attention. This can result from TB or asbestos and several other illnesses. Not sure it is connected to cancer. But, if it was my report, I'd put the most significance on the middle sentence. The doc thinks a PET scan and a CT guided biopsy is needed. So more diagnostics are needed to determine if cancer is present or if it is, what type and stage. You already know what the last sentence means. Stay the course, Tom

Chris, I am reminded of Paul Harvey's byline: "now you know the rest of the story." So your tumor is a third of an inch in size and the recommendation is palliative care. At my advanced age, I can't see a third of an inch even with bifocals, in sunlight, on a good day! I'd say premature, in the extreme! I'd find a medical oncologist. Maybe this little tumor is in a place where a CyberKinfe can fry it. There are a multitude of options before palliative care and you need a doctor willing to explore every one. Report back when you get your second opinion. In the mean time, stay the course. Tom

I've known so many who have passed from this horrible disease. Without exception they were late stage diagnosis, typical of lung cancer. Moreover, like your experience, chemo was the only available therapy and it wasn't very effective. I can say these things of the many I've known but none were tied by a bond of love. To lose the love of one's life to lung cancer and watch the devastation unfold is unfathomable. I cannot say I know how you feel. I can try to imagine but that will fall far short. Yet, despite going through the mayhem of your loss, you return to minister to those who bear the burden of disease. That is laudable, remarkable and speaks volumes of your heart and character. Thank you for staying the course. Tom

I wish I had more answers for what lies ahead also. There is this ever present uncertainty in lung cancer. I'm a 12 year survivor and wish I had answers for what lies ahead. In speaking with my oncologist, now more than a friend than a doctor, he validates my uncertainty. He's seen the disease re-occur in long tenured survivors, and moreover when it does, it rages through the body like water gushing through a failed dam. I still have two scheduled sessions with him yearly with diagnostics and scanziety and uncertainty. For me, it comes down to this. When one seeks treatment for lung cancer, one is choosing life. It won't likely be the life enjoyed before diagnosis, but it will be life. If life is the choice, then live it. Embrace the present, discard the past and avoid the future. Do something enjoyable and meaningful each day you have. Find joy today, wake up tomorrow and find it again. Examine your reflection in the mirror in the morning and if you don't see an expiration date stamped on your forehead, enjoy the day. Don't let lung cancer take over your life. You are most welcome here. Stay the course. Tom

Chris, Welcome aboard. You've obviously been through treatment - a lot I'd venture with more than a decade of survival under your belt. I'm still looking for answers also if it is any consolation. This is a good place. Settle in and get to know folks. Your experience to the newly diagnosed will be invaluable. Was watching a re-run of The Shawshank Redemption last night. This was in Andy's letter read by Ned near the end of the movie. "Hope is a good thing. Maybe the best of things and no good thing ever dies." Stay the course. Tom

Ron, Welcome here. Your two posts are brief but we understand completely your situation. I was a stage 3b NSCLC - Squamous Cell - diagnosis myself and my first treatment was radiation once a day for thirty days and adjunct chemo weekly. The chemo recipe was Taxol and Carboplatin. If you haven't already, take some time to read into our disease. Here is a good source: http://www.lungevity.org/about-lung-cancer/lung-cancer-101 Questions? Ask away. Someone here will have answers. Stay the course. Tom

Well done. Very well said.

Cassie, I've had perhaps a dozen bronchoscopy procedures, both flexible and rigid. I've had general anesthesia for both types. I can't imagine having one without anesthesia. Stay the course. Tom

Cassie, I'd be terrified! To clarify, your father has prostate cancer that metastasized to his lung and also lung cancer, both confirmed by CT scan. I've not had to fight both. One was enough. One complexity if he was being treated in the US would be which medical speciality takes the lead. Normally, a urologist treats prostate cancer while a medical oncologist treats lung cancer. A radiation oncologist treats both. You mentioned lung specialist as his next appointment and that may be well but if he has tumors in both lungs, then he'll likely need chemotherapy and it may be a complicated regime of chemotherapy. That would suggest you gain an appointment with a medical oncologist as quickly as possible. The challenge if he has bilateral tumors of two different types is to find a recipe of chemotherapy that attacks both prostate and lung cancer. Has he had a biopsy yet? By that I mean, has his lung cancer been identified as to type (small cell, non small cell etc.). Here is a resource that discusses types of lung cancer - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer I'm certainly not an expert on the UK's medical system but fortunately Eric Byrne, one of our moderators is. I'll message Eric and see if he has ideas for you navigating the UK medical system with the complexity of your dad's problems. Stay the course. Tom

Hair loss. Check. But it grew back, 3 times. The A-Fib is a nasty symptom but it turned a blessing with the tumor discovery. Have your read into chemo and radiation yet? Here is a good source - select the treatment options tab: http://www.lungevity.org/about-lung-cancer/lung-cancer-101 It is good to know you've got family and friends helping your through this process. Stay connected here. You'll have lots of questions and don't hesitate to ask. Stay the course. Tom

Fatine, Let me join Donna with welcoming you here. I'm a Texan also and I know how bad things are with flooding in Houston. I hope you are not effected. I adapted pretty quickly to breathing with just one lung after my surgery. What changed for me was Texas pollen after surgery. I've had asthma symptoms in the spring and fall that are likely due to the irritated airway caused by surgery. Other than that, I'm fine. Look forward to hearing more about you. Stay the course. Tom

Chery, Blood chemistry is not one of my strong points. I have a good friend who is a leukemia survivor and he knows all about blood chemistry. But, as a lung cancer patient, I've never paid much attention to blood test results other than when I was in active chemo. Then it was just two factors that mattered: WBC & RBC and the result was a Neulasta or Procriet or both injection. I still see my oncologist twice a year and still get a blood test before every visit. Some elements are reported low but looking back on the form, but looking back my nurse tells me they've always been a little low. I hope your PET/CT scan results are good. Stay the course. Tom

Unfortunately Merilee, yes - I've had those symptoms after radiation or chemo. Medications didn't help me much either during treatment but the symptoms did wane somewhat in about a month. Some effects unfortunately linger to this day. These are radiation dermatitis and taxol toes (foot pain and burning toes). First line treatment side effects vary from person to person so you should monitor them and if after say about a month, report them to your doctor. And, yes, I hope your treatment fries your chest nodes. Stay the course. Tom

Judy, Wow you've had the hard row and just started! My most troubling chemo side effect was joint pain. Unfortunately, other than narcotic pain meds, there was nothing that helped me. The good thing to look forward to (if there is a good thing in side effect management) is that my pain events were not long lasting. They started about 2 days after infusion and hung around for 2 days. If you have more chemo and I hope you can tolerate something to arrest the progress, chart the onset of side effects. A calendar app on a smartphone is an ideal way to track side effects. It occurs to me that I recall a lung cancer patient who was hospitalized for observation and side effect management after chemo. Perhaps that might be an alternative for your treatment team to explore. I also had coughing problems in my first line treatment (that is what they call your first series of treatments) but I think conventional radiation caused it. Not sure of the cause for I had concurrent adjunct chemo. So other than my cancer being squamous cell, we share similar diagnostic and treatment circumstances. I was also denied surgery on my initial surgical consult, but my oncologist got creative and tried pre-surgical chemo and radiation. It did shrink my tumor but led to vast surgical complications. We can provide hope and support, fortunately. It is the reason for this forum and my hope I give to you is my 12 years of surviving a stage IIIB diagnosis. If I can live, so can you. You'll have many questions. Hopefully we'll have some answers. Here is a good resource for reading up on your lung cancer - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 Knowledge is power so I encourage you and your family support team to read into our disease so you can ask your treatment team what I call TPQs - terribly perceptive questions. Stay the course. Tom

So the latest scan showed metastatic disease?