Tom Galli

Leia, I've just read into your Christmas nightmare. You asked for hope for your brother. Here is my short version: if I can live, so can your brother. Spagno, Mary, and Susan offer sage advice. I'll expound a bit. Tell your brother to look at his handsome face in the mirror every morning and unless he sees an expiration date stamped on his forehead, he should enjoy the day. Projections are just that, they are educated guesses that are often wrong. Proof? I went from six months projected to almost 13 years actual survival. And here is a blog that may offer your brother some useful advice on surviving lung cancer. Questions? This is the place. We are the lung cancer professionals, not by education and training but by actual experience. We designed the tee-shirt everyone else talks about wearing! Stay the course. Tom

April, Any forum will do and you are most welcome here. OK - you've got a lot going on. I've had many of your symptoms. I was even prescribed O2 and for a while was tethered to a very long plastic tube that entangled itself along every running foot in my home from oxygen generator to wherever I navigated. But, I am no longer on O2. I do experience shortness of breath (SOB) and have a high heart rate but one lung with about 38-percent pulmonary capacity will do that. I've learned to adjust my lifestyle and at 66 years old nearing 13 years of surviving late stage NSCLC, I enjoy the life I have. I note you are on Keytruda, the new immunotherapy drug that yields very promising results for those with PD-1 indicators. I love the PD designation by the way for it means Programmed Death. Although the drug does not set a future death sentence for your cancer cells, the idea of programming death of lung cancer cells is an irresistible analogy that I do love to contemplate. They ought to give the scientist who came up with the monicker a well deserved Nobel prize. Sometimes revenge is so very sweet! As well you know, pleural effusions and pneumonia go hand-in-hand with lung cancer. I've been discharged with emplaced chest tubes. I even had one fall out while taking a shower! That was unsettling, in the extreme! And pneumonia, I've had in all its many flavors. When I get it, it takes me a month or more to resolve and I've even been hospitalized a number of times for treatment. I've learned to avoid school aged children because a minor cold yields a flavor of pneumonia for me. So, where do we go from here. While not diagnosed stage 4, I suffered 3 recurrences in my remaining lung after a pneumonectomy of my right lung. My lung was removed successfully but the bronchus stump sutures broke causing a bronchopleural fistula, three more surgeries to repair, then 4 stent insertions to bolster the repair. This year-long surgical interlude precluded my post-surgical (dust-up) chemo and likely caused tumor metastasis to my remaining lung. So, in total, nearly 3 years of continuous treatment totaling 18 infusions of taxol and carboplatin, two forms of radiation, and the oral chemotherapy Tarcevia to reach NED (no evidence of disease). Two points to close. Jimmy Carter survives because of Keytruda and if I can live so can you. And you are indeed most welcomed here. Stay the course. Tom

Cynde, I was praying no news meant good news. I can't imagine not knowing my emotions and that would certainly result in an isolated numbness. I can't begin to advise how to deal with the survival projection. During my treatment, encountering those projections was maddening. I was once on the six-month clock. My wife and I talked, a great deal, about how we wanted my end time to play out. She reminded me there was still living to do. We spend hours going though our photo archives savoring our life experience. The vacations, the celebrations, the little things that defined us and united us and we found joy in the memories. Perhaps for the first time, this joint recollection of our lives introduced me to real joy. I found meaning in my life and fulfillment and joy in our lives. It was all there: the photos, letters, funny gifts, embarrassing moments, accomplishments, shared events, unbridled happiness and vast disappointments. It was all there lacking only the joint recollection. Discovering joy in the things and experiences we shared was a surprise for both of us. I was in the throes of nearly three years of continuous lung cancer treatments and at the time of my survival projection, nothing but hope remained as a treatment alternative. The joint recollection of our lives and my discovery of joy led to a new understanding about life. Joy is life's gift if we are open to receiving it. Of course in the mayhem of treatment, joy was the furthest thing in my mind but as the recollection revealed, I was perhaps experiencing this intense purpose-giving emotion for the very first time. This set the tone for my six-month journey, finding something in each day that brings joy. I found and find still that it is often the little things that yield the most opportunities. We planned my journey, not in a day-by-day sense, but in terms of a daily objective, one that I still abide by: to find and revel the joyful moments that life allows. Medical technology in the form of newly approved stereotactic radiation intervened to extend the six-months to nearly 13 years. But I still abide by finding joy. Stay the course. Tom

Gage, Welcome here! I'm glad you found someone who has experience with Gilotrif. When I was administered an EGFR inhibitor (Tarcevia), I also experienced severe and bothersome diarrhea. On complaining of this symptom on an cancer blog, a survivor suggested I eat a bowl of plain steamed rice first thing every morning (even before having a drink of water). I added just a little salt for flavor and the rice did the trick. My Tarcevia laughed at Imodium but respected the rice. I could eat and drink normally and sleep soundly at night. One more thing, you have to use the real-deal rice. Minute rice or other instant brands of rice did not work. Stay the course. Tom

Lyndia, Welcome here. In the dark ages of oral chemotherapy (2006), my oncologist added Tarcevia in combination with infused Taxol and Carboplatin as third line treatment to address a recurrence. This epidermal growth factor (EGFR) drug also cause me severe side-effects, most notably and bothersome were acne and diarrhea. I also had my dosage reduced because of the difficulty with these side-effects. The side-effects continued despite the reduced dosage and I stopped taking the drug about half way through my third line treatment. At that time, doctors did not know that Tarcevia only worked on certain subtypes of NSCLC and squamous cell (my subtype) is not effectively countered by the drug. Since 2007, research discoveries have yielded a large number of specific and effective targeted therapy, particularly for adenocarcinoma patients. Your drug is one such discovery and some of these therapies have had remarkable effect in controlling and arresting metastatic lung cancer. I was well acquainted with a lady who survived for 10-years taking Tarcevia and she passed from a heart attack. But she celebrated every day of her life. She taught me the importance of recognizing lung cancer treatment often extends life and what matters most is what we do with the extension. Her goal of finding joy everyday is now my goal and I offer it to you. Stay the course. Tom

Welcome Bobbie! I was most fortunate to be stationed in Michigan while stationed at the Tank-Automotive Command in Warren for a total of 9 years during my Army career. It is indeed a wonderful state and I relish the memories of fishing for native brown trout along the west bank of the Sturgeon River near Wolverine in Cheboygan County. I am sorry I missed your first post. My wife and I felt the need to take a vacation from lots of family stuff and embarked on a last minute Panama Canal cruise. We are now home rested and recovered and happy we had a wonderful vacation enjoying that "last minute" cruise fare discount. I'm starting at the bottom of a long list of unread content trying to catch up. So my welcome response will be brief. You'll have lots of questions and concerns. This is a good place to address both. Many of us are long tenured survivors having started with your diagnosis and endured treatments, side-effects, and recurrence. I firmly believe three things. My attitude towards treatments contributed to outcomes. Hope is a good thing, and if I can live, so can you. Stay the course. Tom

Saje, Welcome here. Agree completely with Mary's explanation of size variance and small differences in tumor size from radiologist to radiologist. Also note and agree with her about the need to get some straight answers from your medical team concerning performing a needle biopsy. While there are risks, they are small. Strange that your doc declined to perform one. A collapsed lung is easily dealt with in a medical setting. Let us know how further discussions go with your medical team. Stay the course. Tom

Jayjay, Welcome here. I see you and Gage have a treatment in common. It is not unusual to experience reduced strength oral chemotherapy. I was told in what is now ancient history (2007) when I had my oral chemotherapy experience, that dosing trials are not as comprehensive because of the need to get effective and needed treatment to those with lung cancer. Consequently, a dosing change is common. I was also told it would not effect the effectiveness of the medication. Ask away if you have questions. Stay the course. Tom

Photolady, We welcome you. Your words "just diagnosed and no details" speak volumes to lung cancer survivors. We completely understand what is rushing through your mind as you navigate the sea of vast uncertainty and unpredictable outcomes that is lung cancer. We survivors here are the subject matter experts in lung cancer. Not by training, but by on-the-job experience. You will go down the path of "staging and typing" so your oncologist can decide on treatment. This could take up to a month. You'll have lots of questions. At this juncture I offer this for your consideration: if I can live, so can you. Stay the course. Tom

Gage welcome here! For Gage - do the Gilotrif side effects ease over time? My experience with a similar oral chemotherapy drug -- Tarceva -- was a continuation of what was called, in the drug literature, "skin rash" throughout the entire time I took it. Skin rash was a very inadequate way of describing my symptom. And it sounds inadequate also for your "plague." I had my Tarceva in combination with the conventional chemotherapy drugs Taxol and Carboplatin. So, after losing my hair, my "skin rash" morphed into the worst case of head, face and neck acne the world's ever seen. I looked like a zombie, most embarrassed to show what passed as my face in public. Gilotrif seems to be working so stay connected and let us know how you are doing. Stay the course. Tom

Buzzy, To your question -- possible for 2 nodules of a different type and unrelated in each lung. Yes, anything is possible. Search here for WebMd's discussion about lung nodules. And I want to reinforce Mary's explanation of how small 7 or 13mm is. 7mm equals just a little larger than 1/4 inch, and 13mm is a little bigger than 1/2 inch. To visualize, a 1/4 inch nodule would be about the diameter of the eraser on a #2 pencil. A 1/2 inch diameter is the size of the home button on an iPhone. These are worthy of concern but small. Stay the course. Tom

Buzzy, I hope the nodules are benign. Stay the course. Tom

Buzzy, Welcome here. You are right to be concerned about the nodules in your lungs. All nodules are red flags for cancer. Your appointment with a pulmonologist is a good next step but a better step for consideration would be a consultation with a medical oncologist. To easy your mind, topics you might explore with your pulmonologist are a biopsy or PET scan. A biopsy at this juncture might be the better route. Stay the course. Tom

Jesslaa, You are most welcome here. I want to reinforce a point Mary brought out. Many of us on this site and others are alive and well after being diagnosed staged IV. Staging for lung cancer, in my opinion, roughly translates to a determination if surgery is possible. If the tumor is a single mass and there are no distant metastasis, then surgery may be undertaken and may be curative. In my experience, I had a recurrence after what was supposed to be curative surgery, then twice more after 12 cycles of chemotherapy. Lung cancer treatment can often be a long game, but, as Mary says your "Mom can do this too." That is survive and thrive after a lung cancer diagnosis. Stay the course. Tom

Stephanie, Welcome here. This response will be brief because I am visiting family and constrained to an iPhone keyboard. To your Cesplatin - Alimta and Keyteuda treatment questions: the former is a first line (first treatment) "standard of care." That means it is proven to have the best response for people with adenocarcenoma as a first treatment. Keyteuda is a new immunotherapy drug and again has been shown to be most effective as second line (second treatment). You expressed concern about Cesplatin side effects. They can be harsh but there are ways to counter them. They are cyclic and arrive the same number of hours after infusion and if you chart their timing, your dad can start mitigating medication slightly ahead of arrival. This approach lessons side effect troubles. Treatment delay -- I've had more than a few. It took me about a month of diagnostic delay and treatment design. Your dad is slightly more than two. After a diagnostic reoccurrence, we delayed treatment for a month to participate in a booked vacation. This delay did not effect my outcome. Your dad is in the system now and treatment should settle down to a schedule. More when I can use a keyboard. Stay the course. Tom

I've seen the star of Bethlehem, very early on Christmas morning. While peacekeeping in Egypt's Sinai Desert, I would run before daybreak as soldiers are prone to do. Although the desert is quite cold in December, dawn running was a habit hard to break. I ran the camp perimeter to check the defensive positions and greet soldiers enjoying the banter in three different languages. Starting in the south perimeter and running counterclockwise, the predawn western sky was dark except for the stars that were so clear, they were painted on the black night sky. Passing along the northern perimeter, the sky lightened and my expectation was the sun starting its rise. But, no, not that day. Right on the distant horizon was a cosmic anomaly, a false dawn, but a bright shining nevertheless. I was looking at the star in the east seen by the Three Wise Men as they rode in search of Jesus. I would later learn, it was not a star but a rare conjunction of the planets -- Jupiter, Saturn and Mars -- all rising in the east slightly before being washed out by the rising sun. I am awestruck by that memory. Many years later after surviving a years worth of cancer surgery and while waiting the results of my first post-surgical diagnostic scan, my entire family gathered to celebrate Christmas. Mom, dad, four brothers, daughter, and a posse of nieces who overwhelmed my one nephew comprised the gathering. Despite my manifest uncertainty, we had a joyous time. I can count on a single hand the times my family gathered. With two Galli soldiers, someone was always missing on deployment. But Christmas in 2004 was an assembly formation, and the clan was all present and accounted for. We celebrated Christmas and my life. I am awestruck by that memory. Then started the clammer of lung cancer treatment. In my treatment years after the Christmas 2004 assembly, my life hovered in sadness and despair. I allowed myself to become overwhelmed by uncertainty, indeed I could think of little else. I forget there are only two things certain in the human experience: birth and death. Everything else is uncertain; outcomes are unpredictable. Treatment was working for I was granted extra life. There were many opportunities for joy but they were frittered away. I am awestruck by those memories. In common with all lung cancer survivors, having been born, I have only one certain human experience yet to deal with -- death. Its timing is uncertain with or without lung cancer. In my memories of active treatment, I chose to let life pass me by forever losing opportunities for joy. Today we celebrate a birth, a new beginning. It was announced by a star. I've seen the star. Let the joy of this birth be a new beginning for all lung cancer survivors. Let us live and find joy in the life we have and be awestruck by the memories of life well lived. Stay the course.

Yyg, Good questions about when treatment gets switched up. For those of us who cannot receive surgery, we received what is called the first line treatment and it is normally termed a "standard of care". That means this care has been proven to have the most beneficial effect to the type of lung cancer for the most patients. Your BF is receiving first line standard of care - chemotherapy (cisplatin and etoposide) and radiation. The radiation kills the lung cancer cells and chemotherapy inhibits their further spread. He'll have scans sometime midway through treatment and at the end of treatment to assess the effectiveness of this treatment. All lung cancer is persistent and many of us have failed first line standard of care treatment. So a second line therapy is administered. Often this is only chemotherapy. It may be the same type of chemo he is currently receiving if the scans showed a good effect on his tumors. It may be a new recipe (new chemo drugs). And, sometimes second line works. Often it does not and the treatment proceeds to further care. At this juncture, the intuition of the oncologist becomes important (my opinion). There really is not a third line "standard of care" but there is third line treatment. There could be adding a newly emerged drug to his current chemo recipe, joining a clinical trial, or another formulation. Alternatively he may receive a different form of radiation called stereotactic body radiation or protein beam radiation. Read about them here. But, this speaks to your question -- when to seek a second opinion. I'd definitely start seeking a second opinion after mid-treatment diagnostics half way through second line. I'd want to find the oncologist who has the best intuition about devising an effective third line treatment. Now this is my opinion. You ought to seek others. Stay the course. Tom

Wendy, Sorry I missed your post. Please give us news about your PET scan when your receive it. Merry Christmas! Stay the course. Tom

Yyg, I am one of those -- well let's say refined survivors -- who's been very luck to live long enough to have acquired a few lessons learned about lung cancer. First, and most important, you can't let treatment take over your life. I learned this the hard way because I fretted away three years of my life focused on little but treatment, depression, and misery. I now know I have control over what I think and feel about lung cancer. I can choose to bottom feed or choose to live in spite of my cancer and treatment. So, go on with your lives. Make plans, enjoy yourselves, be fulfilled. Look at your BF's forehead every morning and if you don't see an expiration stamp, enjoy the day. Second, if I can live, so can your boyfriend. You'll have many questions about cancer stuff and this is a good place to ask. The fact that so many of us are here ought to rekindle hope. Next visit, if you care, let us know his treatment plan. Doing so will allow folks who've had the same treatment to weigh in with their experience. Stay the course. Tom

Amay, I well understand frantic and scared, also sadness and anger. All are, unfortunately, common symptoms with lung cancer. I feel hampered in that I don't really understand the UK medical system so I can't help you in discussions with the registrar. In truth, I don't know what a registrar is in your medical system. We deal directly with our physicians and hospitals without intervention (for the most part) from third parties. Eric Byrne is a UK moderator of our forum. Perhaps you might message Eric, explain your discussion with the registrar, and see if he can help you negotiate approaches that might be beneficial to your mother. To connect with Eric, click on "Staff" and select the envelop icon under his name. I'll message Eric in advance and give him a heads up. Stay the course. Tom

AMay, Your mom's completed first line treatment -- the standard of care for non-surgical treatment -- and unfortunately her outcome is typical for lung cancer: little or no improvement. So to your question what is next. Targeted therapy: if her tumor displays markers (initial biopsy diagnosing adenocarcinoma may have included testing for tumor markers) that suggest a mutation, it may respond to targeted therapy. Here is information. Chronic disease: if her current first line treatment shows shrinkage, it may be possible to design a program of infusion with carboplatin and vinoreibine that is administered to hold her tumors in check. Some I know have been having chemo for years and it continues to hold tumors where they are thus allowing a near normal life. Clinical Trial: I don't know much about the UK medicine system but perhaps your mom qualifies for a clinical trial -- introduction of new treatment means or process into the medical system. Here is information. Immunotherapy: Do explore it. Do talk to a doctor. New advances are happening everyday. Here is information. But, even this is outdated because of frequent medical advances. I set my Google News App to report on lung cancer advances and almost everyday something new pops up in immunotherapy for lung cancer. How did it work for me? After metastasis to my left lung after a right pneumonectomy, my oncologist's approach was to keep trying chemotherapy as long as it showed an effect on the tumors till something "popped out of research." The something for me was CyberKnife. I had six cycles of taxol and carboplatin and after recurrence, six more cycles with the addition of the oral chemotherapy drug Tarceva. These knocked back my tumors but did not eliminate them. The CyberKnife did. This treatment spanned 28 months for me so persistence and patience was required. I completely understand you wanting it gone but you are involved in a cricket match, not a horse race. Lung cancer is persistant and you and your mom need to display more persistence. Stay the course, and do have a joyous Christmas! Tom

St. Michael, Now you will enjoy the best Christmas. Mom home and NED - no evidence of disease! Wonderful news! Enjoy and. Stay the course. Tom

Ngc4au, If I am interpreting your post properly, you dad has likely Stage III A or B non-small cell, squamous cell, lung cancer. I believe I understand it is inoperable, and his doctors are recommending radiation and chemotherapy as "first line treatment." Moreover, he is scheduled for a mediastinoscopy -- a small instrument inserted into the chest at the base of his throat -- to examine and perhaps biopsy additional suspicious areas in his chest. You mentioned his suggested treatment is radiation and or chemotherapy. If this is the case, your dad's treatment is "the standard of care" when surgery is not possible. I had it and many others on this site had it. Mine was done to shrink my very large tumor in hopes of allowing surgery. Others have had it as curative treatment. What should you be doing? Research. I'd start here and here. As a result, you'll likely have questions and feel free to ask away on this site. We are the lung cancer experts, not by education but by experience! What should you expect from treatment? Extra life. How long? Mine is nearing 13 years after diagnosis with stage IIIA non-small cell, squamous cell, lung cancer. Others of this site have far longer periods of survival with even stage IV disease. So what does your dad do with his extra life? That is the question I suggest you ponder and discuss. My suggestion is live. I'd help your dad realize that it is possible to enjoy life and undergo treatment at the same time. Here is information that may be useful for your dad and family to read. Stay the course. Tom

Michelle, We share a type (squamous) and treatments: surgery - check; radiation - check; chemo - check; and Tarceva - check. Check also on hair, eyebrows and eyelashes. But, I am now at the survival stage where hair loss is old age balding rather than infused chemicals! Good to have you here and wonderful that you are persevering with your treatment. If I can live, so can you, and we've got a lot in common. Stay the course. Tom