Tom Galli

Terri welcome here. I know well about the daze you are in. This is a good place to learn about folks who've been right where you are and have survived and have fulfilling lives. Read some of our survival stories. I'm a 12-year survivor and there are many here like me. If we can live, so can you. So, how does one face the daze? I've found spending time to learn about my disease to be effective. Knowledge for a lung cancer patient is power. Here is a good source of information on CT scans: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/diagnosing-lung-cancer/imaging-tests I'm a Texan also and know many who've benefited from the treatment expertise at MD Anderson. So, you are in a good place. You'll have many questions and this forum is a great place to ask. Tell us about the type of lung cancer you have and folks on this site with the same type will be able to share their treatment experience. Tell us also the name of the chemotherapy drugs you are receiving. Again, we might be able to help you anticipate effects and side-effects. You are not alone in this battle. We understand what you are facing and most importantly many of us have survived to blog about it. Stay the course. Tom

Jg welcome here! I also had taxol and carboplatin as first line treatment along with radiation and developed a peripheral neuropathy (some call it taxol toes) that still bothers me after 12 years of survival. Is there relief? Not that I've found. Here is what I do to ease the discomfort. I wear wool lined slippers to bed and this guards my toes from the bed covers. I also wear wool lined shoes (wool under the toes and heal) and this reduces the discomfort when I walk. I've tried gabapentin and Lyrica but neither worked for me. I tolerate the pain during the day and take Xanax (1 mg) that makes me drowsy enough to fall asleep. Occasionally, my wife cuts lidocaine patches that she applies to my toes and first joints of my feet and I put on a wool sock to hold the patches in place. I've never received Opdivo so I can't help you there. I hope you receive clean scans and NED after your forthcoming CT scan. Stay the course. Tom

Welcome here Rickoehn! If there is any celebration possible with a lung cancer diagnosis it is a stage I discovery. I know there are stage I discoveries but I hear about so few that I can't begin to predict how long surgical recovery might be. What type of surgery is to be performed? Is your doctor including post surgical chemo in the 4 to 6 week recovery projection? Is post-surgical chemo even prescribed for stage I lung cancer (question to myself....)? I was diagnosed stage IIIB and had pre-surgical radiation and chemo to shrink the tumor to allow the surgeon to completely remove my right lung. Even given the seriousness of that surgery, I was discharged to home 5 days after surgery and advised to avoid strenuous activity for 2 weeks. I was on track to return to work until I caught an infection that landed me back in the hospital. So my plan with a complete pneumonectomy was return to work in 3 weeks. Knowing what I know about lung cancer, I'd advise strict adherence to your doctor's suggestions. It is a nasty disease and your stage of discovery yields the best possible treatment outcome. But, it is still nasty! Stay the course. Tom

Welcome here ryansmith. Unfortunately, I know what you are going through. I've survived more than 12 years since diagnosis with late stage non small cell lung cancer. I've had many surgeries, radiation treatments and too many chemotherapy infusions. The bottom line is if I can live, so can your wife. Lauren's told you about read-in resources for adenocarcinoma and I suggest you spend some time learning about your wife's disease. Fortunately, new treatments are emerging rapidly for people with adenocarcinoma because of exciting developments in the filed of molecular profiling. So learn about these new developments and ask your wife's doctor if her treatment can benefit from one of these new therapies. You will have a ton of questions and this is a good place to ask away. Many of us here have been where you are right now, and the important take-away for you is that we are still here! Stay the course. Tom

Welcome here Apoorvamaniktala, It saddens me to hear of your father's diagnosis. It may be helpful to tell us the type of lung cancer your father has. There are two basic types: small cell lung cancer and non-small cell lung cancer. Non-small cell cancer has subtypes associated with it. The reason this is important is this site is for all lung cancer survivors but the treatment and treatment availability varies for types and subtypes. So folks here will be better able to assist you in understanding your father's treatments if we know the type. Here is some information to assist you in understanding lung cancer types: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer What kind of radiation treatment is your father having? There is standard external beam radiation therapy, and 3 newer methods of image guided radiation. I've had two of the methods - standard external beam radiation and stereotactic radiation. Here is a good resource to help you understand the types of radiation therapy: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/radiation-therapy My standard external beam radiation was performed over a period of 30 days. Each session took about 15 minutes from the time I entered the clinic till the treatment was complete. For the first 10 or so days, I experienced no discomfort. Then the skin on my chest became red, like a bad sunburn, and I developed a dry cough. My doctor gave me medication to assist with these problems. By about the 15th day, I started to feel very tired after each treatment. I felt like treatments were reducing my energy levels. During my last 5 treatments, I spent much of my time in bed because I was very tired. I quickly recovered my energy level and returned to normal after treatment was over. My stereotactic radiation was only 3 days long but each treatment was about a half hour long. I experience no side effects from this radiation at all. I hope your father's treatments are progressing well. Feel free to ask any further questions. Stay the course. Tom

Bob, I am sorry you experienced this treatment setback. It is not unusual. I've known many who've gone from infusion to the ER for various problems including a heart attack. Infusing any chemotherapy along with drugs given to ward off side-effects always comes at a risk. I've had many infusions and saw the extensive precautions that nurses and pharmacists used to ensure the right chemicals were mixed in the right proportions and given to the right patient. That may not satisfy your sister and of course there is always the possibility of a mistake. Cancelling a radiation treatment for me just meant I had an extra one added on extending my radiation by a day. I had to cancel one because I was too ill and rescheduling was no problem. Be sure and consult your doctor about your concerns with your kidney and heart. Before every infusion, I had a blood draw and they checked certain elements of the blood to ensure kidneys, liver and heart were not affected by treatment. But, you should ask just to be sure. I hope you have recovered from your ER experience. Let us know how you are doing. Stay the course. Tom

Julie, Any news on the timing of the start of your treatment? Stay the course. Tom

Marc, My wife has undergraduate and masters degrees in nutrition (dietetics). She is my caregiver and her two sustaining messages during my treatment were: eat something (during chemo side-effects) and eat lean protein, whole grain, fresh fruit and vegetable at every meal. There were times during chemotherapy when I completely lost my appetite. This period lasted about 3 days and Martha went to great lengths to get something into me. She made ice cream that actually tasted pleasant during chemo - Mint Chocolate Chip Ice Cream. (It is not one of my favorites now so chemo likely altered by taste buds). It was about the only thing I'd eat during this period. Calories were very important with my body struggling to make red and white blood cells that were wiped out by chemo. When I felt well enough to eat, breakfast became a spinach omelet, and a cup of Cheerios with fruit (no sugar) . (There are hundreds of vegetable omelet combinations - try sautéed asparagus tips). Lunch was a cup of vegetable soup and a turkey bacon BLT with whole wheat bread and sliced fruit (apple, pear, banana, or peach). Dinner was lean roasted pork with wild rice, and green peas with onions and mushrooms and sliced fruit for dessert. There is something about presenting sliced fruit at the dinner table that makes it more appetizing. To give flavor for the lean meats (chicken, turkey and pork) she'd sear and caramelize one side of the meat in a very hot cast iron skillet, turn and then finish cooking in a hot oven in the skillet. Sometimes she'd make a pan sauce using the skillet drippings with water and seasoning or white or red wine. She placed the meat on toasted whole wheat bread and spoon on the pan sauce! She encouraged me to snack on lightly salted peanuts or almonds (for my chemo induced Magnesium deficiency) and or fresh fruit. Martha also loosened the rules and allowed the occasional pizza or spaghetti and meatballs! She also charted my weight twice a day, morning and evening, and we could see variation during the periods of dull appetite. I could loose 5 to 8 pounds during this period. There is a lot of advertising on organic, fat free, diets and the like. I like Martha's simple solution - lean protein, whole grain, fresh fruit and vegetable at every meal. It worked for me. Stay the course. Tom

LUNGevity Forum Folks, We are getting a new version of our forum software. We are uncertain of the date of new version release (but it is soon) and when we get a projected install date, we'll let you know. Installation could take from a couple of hours to a day or so. Stay tuned for more information. Tom

Welcome here KS. I've not heard of a lung cancer diagnosis consisting of just enlarged lymph nodes. That doesn't mean it can't happen. I'm also not a doctor so my opinion counts for little. Chest congestion from infection will cause enlarged lymph nodes, but you indicate your last illness was early March. I've had persistent lung infections (since achieving a NED status) with scans after and these scans showed enlarged lymph nodes. I recall one event where the illness was over for about 6 weeks and I still had enlarged lymph nodes. As to what to expect, an EBUS is a very common procedure and is minimally invasive. You'll have anesthesia; perhaps not general but you shouldn't feel anything. A preliminary pathology report should be available shortly after completion of the procedure. You'll normally be kept under anesthesia till the pathologist determines if the sample is definitive enough for identification. It is my experience that one is told the results of the preliminary pathology report prior to discharge from the procedure. The results should be conclusive. I hope things go well for you next Friday. Stay the course. Tom

Bruce, Sounds wonderful to me.... I have my semi-annual oncology visit on 7/25 with a CT of the chest before and am dreading the scanziety! Guess we're all in the same boat! Stay the course. Tom

Julie, It is hard not to be mindful of survival statistics. When I got my news, 12 years ago, I was undone and stayed that way until I read an essay by Stephen J. Gould called The Median is Not the Message. Here is an audio version of the essay that gave me so much solace: http://www.youtube.com/watch?v=cH6XuiOBbkc At this point in time, it is best to focus on your treatment. You are young, have a form of lung cancer that responds to targeted therapy, and have a loving family to assist you during treatment. Like Gould, I believe one's attitude toward treatment and outcomes is vital to success. Proof? I'm alive. If I can live, so can you. Here is some information about adenocarcinoma and EJFR targeted therapy that may be helpful: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy My chemotherapy was taxol and carboplatin. During my third line treatment, my doctor added the newly approved Erlotinib or Tarceva but in those early days before genetic tumor testing, doctors didn't understand how or why it worked. I have squamous cell carcinoma and we now know Tarceva is ineffective for squamous cell. But I know a woman who survived (she did more than survive, she thrived) 10 years taking Tarceva and in fact, she passed away with a heart attack. So it is effective. It can arrest your cancer. Try and let this bad news settle in. You'll have many questions and we are here for you. Stay the course. Tom

Bob, Welcome here. I'm glad your doctors are so confident about your treatment. It may be helpful to share your type of lung cancer and the names of the chemotherapy drugs you are receiving. Many here may have had the medications you are receiving and can offer recommendations based on their experience. Advice. I'd read into our disease. Here is a good place to start - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 Radiation for me at the start was a piece of cake until the middle of the third week. Then, it sapped the energy right out of me and I spend a lot of time sleeping. Also I experienced sunburn-like skin pain. My doctor was quick to prescribe heavy duty topical lotion that took care of the pain. Six days in the infusion chair! Wow, that is a grueling schedule. By contrast, I had one infusion every three weeks for a total of 6 infusions. This is a good place to ask questions so feel free to fire away. Stay the course. Tom

Ruthie, Have seen several of your posts and now note your introduction and I say - welcome! You've had a tough treatment time but from the sound of things, it was worth it. Great news on the needle biopsy results. A silver mini-mohawk hair style sounds interesting. Perhaps it will start a trend! Now you'll settle down to a period of scheduled scans to monitor your condition. Here is hoping they all reveal NED! Stay the course. Tom

Susan, Wonderful, marvelous, and superb news. Ensure that thyroid issue is nailed down after an extensive and well deserved celebration! Stay the course. Tom

Marc, I have second hand experience about MD Anderson that may be of value. I knew well two lung cancer patients who received treatment at the hospital. In both cases, the treatment delivery was superb. But, in both cases, navigating the administrative process to get to care givers was complex, frustrating and lengthy. These incidents occurred perhaps 3 years ago so perhaps MD Anderson has improved its patient administration services. I suggest you have a lengthy conversation with your medical insurance provider to validate coverages and limits. In both cases, admission difficulty occurred because of "insurance coverage gaps". MD Anderson does a lot of procedures that do not match up with insurance recognized procedure codes and that was part of the problem. I suggest you try and have your insurance provider coordinate with MD Anderson ahead of your scheduled admission, if possible, to smooth your admissions process. Stay the course. Tom

Marc, Here is a link that gives information on Dallas area support groups. I know of none that are lung cancer only. That said, I've heard good things about Gilda's Club - North Texas, and UT Southwestern's support group. Contact points are on the link. http://www.dmagazine.com/publications/d-magazine/2009/special-report-dallas-medical-directory/cancer-support-group-listing Stay the course. Tom

Laralyn, Welcome here. What can I offer on how to decide between conventional treatment or clinical trails? My experience is dated - 2004 to be exact but we declined a chemotherapy clinical trial and decided on treatment that was the standard of care at the time. My wife and I spend hours pouring over the literature and also consulted with our general practitioner. He explained what standard of care meant. And, it worked, but not for long. My lung cancer's been very persistent. Here is some information about clinical trials you may find useful: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/clinical-trials I've read about some scams related to US citizens trying to gain access to the Cuban developed CimaVax, so be careful and do your due diligence. If treatment is administered in Cuba, remember it is a third world country and the living is not easy. I also suffer from chemo induced neuropathy but my doc told me that additional chemo would not add to the damage. But, everyone is different. I think the choice between trial and conventional comes down what has the best chance to work. I'm sure you've asked your doctor that question. Stay the course. Tom

Marc, I think your question evolves to a choice - conventional chemo and targeted therapy and if it is wise to choose only targeted therapy. If your tumor cancer displays characteristics that make it vulnerable to target therapy, then I would be inclined to choose targeted therapy. In the past, targeted therapies have been administered concurrently with conventional chemo. But, there have been studies that have shown that the targeted therapy alone is the effective agent and therefore the standard of care protocol has been changed to administration of the targeted therapy alone as first line treatment. I can't cite the studies but your oncologist should be able to discuss these. But, if the targeted therapy drug is approved for first line treatment without combination therapy (other drugs), then it falls into a new standard of first line treatment. If it were me, I'd chose it. Can it shrink or eliminate tumors? From what I've read, yes. And in some, it only keeps them stable. Each person is different so the drug will respond differently. There will be an in-process scan performed (generally 2 months into treatment) that will assess effectiveness and that is when you'll know how the targeted therapy drug is working on your cancer. One more thing to ask your doctor about is your cancer's ability to mutate against the targeted therapy agent. I've read that this is a possibility for some targeted therapy formulations. Stay the course. Tom

Scooter, Yes, the radiation I'm talking about is different. Believe Scott started with conventional radiation. This is very effective and powerful and normally a part of most first line treatment. Here is a reference that describes the different types of radiation used to treat cancer - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/radiation-therapy I had two types: Standard External Beam Radiation Therapy as part of my first line treatment, and Stereotactic Body Radiation Therapy as part of my fourth line treatment. Another name for Stereotactic Body Radiation Therapy is CyberKnife. Sometimes, I hear it is used to address tumors that are in hard to reach locations, or in those tumors that are causing difficulty for breathing or eating. Give the reference a look and discuss it with Scott's doctor during his next consultation. Stay the course. Tom

Susan, We had a wonderful time. In fact, on mentioning your scanziety to my wife, she asked if you scheduled a vacation. She reminded we often would go somewhere between the scan and results revealed or while waiting for a scan. Let us know about the results. Stay the course. Tom

Scooter, Great news on weight gain and pain reduction. Understand how tumors can effect the esophagus and make swallowing hard. Have they suggested stereotactic radiation (CyberKnife) to shrink the tumor. Sometimes this is possible but tumors in this location are also close to the heart and major blood vessels. Still it may be worth asking about. Keep us posted. Stay the course.

Marc, I don't know I've ever read about D3's usefulness in fighting cancer. Not sure I've ever read anything scientific about supplements and their effect on cancer. If you start chemo, however, ensure you disclose all supplements you are taking to your oncologist. Some maybe counter productive to your treatment or enhance side effects. My blood was taken and chemistry analyzed before each infusion and oncology consult. I developed a problem with low Magnesium and my oncologist prescribed a 500mg daily dose that I still take. That is my only supplement. Stay the course. Tom

Welcome here. I have high hopes for his treatment also. Might his type of cancer be adenocarcinoma? The reason I ask is that there are many members who using oral chemotherapy drugs as targeted treatment for cancer cells that display certain genetic markers. In your next blog, you might mention the name of the oral drug he is taking and the type of adenocarcinoma he has. That will inform members who have experience with targeted therapy and they can sign on and report their experience. I was diagnosed in 2004, well before the age of targeted therapy. Mine was the old fashioned way and it worked for me. Tell your husband that I'm alive now more than 12 years after diagnosis and if I can live so can he. Stay the course. Tom

Donna, I didn't know children that young suffered from LC. 12 rounds of chemo is a lot for an adult! Tom