Tom Galli

Karen, Welcome here. As Jg suggests, Opdivo can be a powerful drug to arrest NSCLC. Many are benefiting from it. It is one of several emerging from research that uses the bodies immune system to attack NSCLC tumors. Here is some interesting information on how it works. I do not have experience taking Opdivo. My active treatment ended in 2007, well before Opdivo's FDA approval. Jg's results are typical of what I've read here and on other sites. I hope your husband's treatment arrests his cancer. You'll likely have more questions and this is a good place to ask them. Stay the course. Tom

Juanita, I am addicted to nicotine. Almost a month after I was finally able to quit, cold turkey, with enormous difficulty, I was diagnosed with lung cancer. I got to the point where I wanted to stop smoking and stopped. I'd tried many times before but was unsuccessful because I really didn't want to stop. So for me, wanting to stop was the key. It may be for you also. You may want to tell us about the "typing and staging" of your tumor. As you mentioned, this will result from your biopsy and scans. Once this is known, folks here can wade in a share their treatment experience with you. You are most welcome here. Stay the course. Tom

Leia, OK - so let's review the bidding. MD Anderson as treatment center: world class place. Radiation worked. Blood clots discovered before they could cause serious damage. Fragmin works. First line chemotherapy of Taxol and Carboplatin worked for me. Your brother is getting a more effective pairing that was unavailable at the time I underwent chemo. It should work. Zometa to harden bones is typical as is Neulasta to boost WBC and likely Procrit for RBC. The Neulasta injection is painful as is resultant bone pain in the long bones. But all three of these treatments work. So, I'm bidding "small slam" (Bridge Card Game analogy). I'm also suggesting one or several Denny's Grand Slams after each infusion because steroids administered before chemo drugs will make him extremely hungry. Chart the onset of side-effects (day - date & time after infusion) because they will occur with the same frequency after each infusion. After the first infusion and knowing the side-effect cycle, consult with the chemo nurse about starting side-effect mitigating medication about an hour before the onset of each effect. This worked for me. Keep us posted and stay the course. Tom

Mary, Here are general questions to ask your oncologist about lung cancer. These are more specific questions for your consultation with your radiation oncologist. I also endorse Donna's suggestion that you bring someone with you to the consultation to help you ask and understand responses to questions. Has your cancer been typed and staged? By type I mean non-small lung cancer or small cell lung cancer and by stage I mean Stage I, II, III or IV. The first 3 stages normally have the letter A or B associated with them. Tell us this information and we'll be able to give you more insight. Lung cancer treatments vary depending on both the type and stage. Welcome here. I hope you have a productive consultation with your radiologist next week. Stay the course. Tom

Mally, Get ready for my precise answer to your questions on the number of lymph nodes in our lungs -- a lot! Here is a picture I grabbed on line. I gave up trying to count them. Moreover, the scope of the questions introduces complexity. Is it just the lungs, thoracic cavity, chest, the answer kind of depends on what one considers the lung. More importantly, why are you asking? Stay the course. Tom

Rain, First idea: try and relax, emphasis on the try! Believe me, I know. The CT discovery is disconcerting but the tumors are very small. The watch and wait thing might be appropriate because your reported symptoms (cough, fever) might actually be the cause of your tumors. Second idea: to ease your mind, ask your pulmonologist about a biopsy. He or she might be reluctant because the tumors are very small. Needle biopsy would be difficult. So, ask about a PET scan. Again, the size makes results interpretation challenging and doctors wouldn't know what kind of cancer but you might have a result. A three month delay in treatment is not unusual. I once had 4 months of inconclusive scans that finally resolved as my second reoccurrence. The "yes", "no", "maybe" was maddening but although cancer grows fast, the delay in treatment did not affect outcomes. Let us know how tomorrow's session goes. Stay the course. Tom

Welcome Rain, Ask away. Stay the course. Tom

April, A funny thing about cancer. When it spreads from a primary location to distant parts of the body, it spreads as the original type. By that I mean, a lung cancer tumor that metastasizes to say the liver will be a lung cancer tumor. So, Keytruda is a newly discovered drug that can be very effective and will attack all your lung cancer tumors regardless of where they are in your body. Is it possible to stay where you are? Yes. I know many who receive infused and or oral chemotherapy as a chronic treatment. That means the treatments are not eradicating the cancer but prohibiting it from growing. I know well one lady who and one gentleman who have lived more than 10 years through chronic treatment. Where do you go from here? Stay involved and engaged in your treatment. There is no such thing as big trouble. You have a disease, you are involved in treatment, and you may experience very good results. You'd be in big trouble if there were no treatment. I know how hard this is. I've tread your path. I caused myself needless worry and lived the doom and gloom life-style for 3 years while in treatment. I look back at that period and realize the missed opportunities life afforded. If I could convince you of one thing, it is that chemotherapy often extends life. No one is certain for how long but then, no one alive is certain about how long. What is most important is what one does with the life extension. Look for something to enjoy each day, then celebrate. Stay the course. Tom

Mary, Oh la' la'. You got that picture insert thing down pat! Stay the course. Tom

Mally, Seeing you are getting some wonderful feedback from Susan and Mary. This might help you prepare for chemotherapy. Keep those questions coming! Stay the course. Tom

Hello Robin and welcome here! I truly hope the scan results show a vast improvement. I know what Scanziety is all about. In fact, despite being a long time survivor, I still see my oncologist 2 times per year and endure the very same post-scan uncertainty anxiety you do. Stay the course. Tom

Gage, Sounds like Natto would stop anything..... Stay the course. Tom

April, I am also. I often listen to Stephen J. Gould's powerful essay "The Median isn't the Message" because, on discovery, it filled me with hope enough to help me prevail against my horrible disease. Give it a listen. Stay the course. Tom

Isaut, Traveled during active treatment, why yes, we've done that! A Hawaii Island cruise, 3 transatlantic cruises with long jaunts in Europe after, an eastern and western Caribbean cruise. Why cruising? They have doctors, safe drinking water, safe food preparation and the ship is a destination with entertainment, activities, and other passengers to meet and interact with. Here is what my oncologist did to insure we had a medically safe journey. composed a letter to be used, if necessary, by shipboard doctors to explain my medical condition in detail. prescribed a "take along just in case" broad spectrum antibiotic (Levaquin - 500mg) to take at the first sign of a chest cold or congestion. In addition, my doctor gave me sound advice on purchasing broad coverage travel insurance. Moreover, he strongly suggested I not purchase insurance issued by the cruise line because of the weak medical coverage limits and a lack of medical evacuation coverage. We buy Travel Insured International policies. Buying their Worldwide Trip Protector policy waives pre-existing condition coverage if the plan is purchased within 21 days of making your vacation deposit payment. There are other companies who offer similar coverage but be careful of the fine print. We've filed a claim for trip interruption and it was paid pronto. But read every word of the policy language before you purchase any coverage from any company. Others have offered excellent advice and Katie's suggestion for over-the-counter medication for headache, colds, sore throat, digestion and other minor illness makes a great deal of sense. They have these items on a cruise ship but since you are a captured customer, you'll pay a high price for them. One more suggestion about cruising. All ships today have a multitude of automated hand sanitizing stations. We never fail to pass one without sanitizing. Go have some fun in the sun! Stay the course. Tom

Mally, Seven nodes with metastatic lung cancer? In my experience, wait and watch is not a treatment plan for cancer discovered by pathology examination. Have you consulted with a medical oncologist or has your case been handled by only a surgeon? Post surgical chemotherapy is normally a standard of care after most if not all surgical resections. If you have a medical oncologist, I'd nudge him or her into formulating a treatment plan pronto. If the nudge doesn't have the desired effect, I'd find another post haste. Even one cancer cell in one node can be a vast problem. Keep us informed and welcome here. Stay the course. Tom

Amen!

Susan, Hawaii! Wow! Impressed I am! Doing the right thing, you are! Here is a photo of our February 2007 trip while I was still in active treatment. I endured 3 years of treatment before we went. These are the islands of Ni'ihau and Kaua'i at sunset that we took during our Hawaiian interlude. You are staying the course. I'm so proud! Tom

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