Tom Galli

I also had a successful cyber knife treatment and it fried my tumor. I didn't talk much about my cancer either but did find comfort in blogging about it, especially during the very bad middle week in my three week chemo cycle. It was an outlet, a means of broadcasting how bad I felt without actually having to talk about it. Feel free to tell us about you future treatment. Most of us have been where you are and we're a receptive and concerned audience. Stay the course. Tom

Cindy, Sorry I didn't respond to your March post. Sounds like you had a good first line treatment result and are now suffering what I call "Scanziety" - that special kind of anxiety known only to cancer patients sweating our results or experiencing "a little smaller...a little larger" radiology reports. I think you are right in wanting an answer to the new nodule issue. I'd sure want that answer! I had a particularly confusing run of scan results and my oncologist noticed a new radiologist was interpreting my scans. So he was seeing and remarking on long identified nodules but identifying them as new findings. My doc made a quick call to the radiologist and straightened him out. Is your doctor treating your cancer as chronic disease with the Alimta infusions? When I was in active treatment, I made the mistake of trying to tough out depression and fright feelings I had. I mean, soldiers don't get depressed! That didn't work and when I told my GP I was depressed he said: "of course you are, who wouldn't be." I started counseling and medication, then attended my first cancer support group. These worked for me. Glad you've reached out to someone. Stay the course. Tom

Sherie, Welcome here. It sounds like you've had a complete diagnostic work-up. So your scanned, biopsied, typed and staged. Strap in, lock and load, and proceed purposefully with treatment to kill your cancer. Here are a couple of pointers. Medical practitioners can tell you what treatments are going to do and how they will effect you but only survivors can give you insight into how you'll feel during treatment. Few practitioners have actually had cancer and consequently have little experience in how it feels to go through treatment. We do and you'll have questions and concerns. Ask away! I also encourage you to find a cancer support group near your home. Generally they meet at or near treatment centers and it has been my experience that they welcome all in treatment, whatever stage or type. I surmise you'll be starting your first line treatment of radiation and concurrent chemotherapy and it sounds very much like my first line treatment but the chemo drugs are different. I had Taxol Carboplatin, then the standard of care in 2004, and you are receiving Alimta. I've read good things about Alimta's effectiveness and side effect mitigation but expect some. Here is a resource that may be instructive in explaining our disease - Lung Cancer 101 here - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 I wrote a "Ten Steps to Surviving Lung Cancer" years ago. I'll attach it (if possible) but if attaching doesn't work, you can find it on the web here -http://www.redtoenail.org/tensteps This may give you insight to what radiation and chemotherapy will feel like. Most important in surviving cancer, I believe is your attitude toward treatment. You face a tuff fight. In your 3-week cycle of treatment, you'll experience repetitive unpleasantness on a recurring schedule and mentally the nature of treatment will test your coping skills. Let people know when you're approaching your limit. It was the most difficult struggle in my life. Don't try this alone. Expect to be depressed. But, amid all this treatment mayhem is a very possible but often forgotten side effect of first line treatment - extra life. If you've committed to treatment, then you are committing to living longer. Embody that expectation. Stay the course. Tom Ten Steps to Surviving Lung Cancer.pdf

Welcome here. Your dad is going to the right place - MD Anderson. I certainly can't interpret the bronchoscopy (and biopsy) findings but I'm the doctors at MD Anderson can and will. Take time to read into information about cancer care givers and pass it along to other family members. Here is some information you might find helpful - www.lungevity.org/caregivers Stay the course. Tom

Karen, I can't answer all your specific questions on Opdivo because it is a new drug and I never received it. Literature says there are minimal side-effects, but when reading the fine print, reports some nasty side effects for a small percentage of patients. Your dad must be in that percentage. From your post, I conclude your dad's first line chemo did not arrest the disease (not an uncommon outcome by the way). Thus Opdivo was selected as a second line treatment. You report a CT scan showed the cancer was stable after taking Opdivo. To your third questions: "can you come back from side effects?" Yes. Moreover, if Opdivo is working, it is doing what it is designed to do - arrest the cancer and provide extended life. Assume you or another family member are with your dad when he has consultations with his physicians, and the scope of side effects are completely discussed and understood. I say that because during my chemo, I wasn't lucid enough to ask TPQs (terribly preceptive questions) about my treatment and that job was handled by my wife. Stay the course. Tom

Henk & Ellen, Wonderful news! Long survivors bring much needed hope to our community. Enjoy life! Stay the course. Tom

Lginther, I do indeed know a woman who has stage 4 NSCLC and is being administered Avastin every 2 weeks. She has tumors but they have not been active for several years and soon she turns 85 years old. Her doctors describe her disease as chronic but controlled. She also traveled. Even managed an overseas flight with oxygen bottles. Email me on this site if you want me to put you in touch with her. Stay the course. Tom

B, Stage 1A is indeed good news. Early lung cancer finds are rare. The CT assisted, likely needle biopsy, shouldn't be that difficult. With 1A, the time estimate they gave you sounds odd but when they did my biopsy, my surgeon kept snipping lymph nodes to confirm my stage. So mine was an extended process also but access was through the trachea. Let us know how things turn out. Stay the course. Tom

Beth, Here are some ideas for improvement in breathing. Does he have an RX for rescue inhalers? I have a sustaining RX for Advair HFA that I use morning and evening but my doc suggested a rescue inhaler (Combivent) for times when I faced challenging breathing environments (like now with rag weed high). Doc suggested I use the rescue inhaler before venturing outside and it works. Perhaps a dose before bed would ease his breathing. I also use a CPAP machine normally prescribed for sleep apnea. It takes getting use to but it really helps breathing. He'd need an RX for the device but I suggest buying online. Private message me if you are interested in sources I use because buying from a store can be really expensive. I had an oxygen concentrator in my bedroom for a while but found I didn't need it. I'm not sure I became reliant on oxygen. Recall well the 'roid rush. Stay the course. Tom

Xingxing, Here is an idea to help with the expense for ALK targeted treatments. Try a direct appeal for financial support to the companies that make the drug. Tell them you are from Cambodia and cannot afford the treatments. Here is where you can send your email request: Xalkori is made by Pfizer. Email Pfizer with your request for financial assistance here: http://www.pfizer.com/contact/contact_us_support Zykadia is made by Novartis. They have a global patient assistance program called Novartis Oncology Access (Shared Contribution). Novartis uses the Max Foundation for charitable dispensing of its cancer drugs. I found the Max Foundation network partners for both Cambodia and Thailand here: http://www.themaxfoundation.org/maxglobalnetwork/networkpartners.aspx# You would need to compose a request that explained your mom's diagnosis (provide information on type and stage) and your financial information (income). You might also need to identify a charitable partner in Cambodia or Thailand that would provide medical support while the drug is administered. I do not have any experience in international requests for support but I hope this information assists you and your mom. Stay the course. Tom

Welcome here! Lung cancer patients, caregivers, family and even medical practitioners struggle to keep life moving. But, every once-in-a-while we get a win. Lung cancer survival statistics are indeed bleak. I found hope in a Stephen J. Gould's essay called "The Median isn't the Message." You can listen to it here: When diagnosed with inoperable cancer, I was given about 6 months to live. My disease is non-small carcinoma but the difference at late stage is academic. I survived because of the push I got from wife and family and because I had a superb oncologist who noticed a good response during my chemotherapy. In 2004, there were few chemo drugs available so my first line chemo failure did not get a change in recipe. We repeated taxol carboplatin through second and third line failures. Then the FDA approved Cyber Knife radiation for certain types of lung cancer tumors and mine just happened to be the certain type. I'd stayed alive just long enough for my cure to emerge from research. If I can live, so can your mom! In February, Good Lord willing, I'll have lived 12 years beyond diagnosis. I encourage you to read-in to the disease. Knowledge is power and there is a wealth of information about small cell carcinoma at Lungevity.org Here is a link you might find helpful as a caregiver - www.lungevity.org/caregivers You will likely have lots of questions and folks here might have answers, so ask a way. Stay the course. Tom

Roxanne, Welcome. You've been through a lot. I share your diagnosis: NSL Squamous Cell Lung Cancer. My infusions of taxol carboplatin, at that time the standard of care, occurred in 2004 through 2006. This timeframe is well before the approval of Opdivo and Gemzar so I've no direct experience with either drug. A good friend who shared our diagnosis and treated with taxol carboplatin as first line therapy, was given Gemzar in combination with carboplatin as second line therapy. He experienced far fewer side effects but treatment was not successful. I've read great things about Opdivo and you've obviously done well despite your recent progression. You've asked really tough questions and unfortunately I can't give detailed answers. But, you've stated a desire to make the right choice and so this is how I'd approach the choice. Consider, the primary effect of chemotherapy is extra life. This is hard to remember while in the mayhem of treatment, but despite first, second, and third line taxol carboplatin failures, I lived another 2 years. Just long enough, in fact, for Cyber Knife radiation to become FDA approved for lung cancer patients. That saved my life. Cancer is just plain hard to kill with chemotherapy alone. But, I was having a good response and my oncologist was trying to keep me around until something hatched out of a trial or research. Might you be on the same path? Stay the course. Tom

BigBrowne, Welcome here. I'll take a stab at answering your questions. "Am I looking to deeply into the process?" Assume you refer to conventional and alternative treatment methods and if so, my answer would be no. I believe information is your ally that will allow you to make important decisions about your treatment alternatives. "Does anyone have any great solid advice or leads that I can look into?" Again, assume you are referring to treatment methods, then Lungevity.org is a good source of information and there are many good web-based information tools available. Beware however those that forecast or tout a "miracle cure". There are no miracle cures but there are miracles. I am one having survived unsuccessful surgery, first, and second line chemotherapy. I lived long enough for an experimental "Cyber Knife" procedure to be approved for lung cancer patients and that saved my life. That I lived that long was indeed a miracle. "... about the success of medical marijuana...." What I've read about medical marijuana is its success in pain management. "Am I wrong?" Only you can make the treatment decisions for your cancer so a decision you make cannot be wrong. It may not be the decision others might make but that will not make your decision wrong. Here is some information I'd read to supplement your research into alternative cancer treatment methods: http://www.quackwatch.org/00AboutQuackwatch/altseek.html and here - https://www.sciencebasedmedicine.org/medical-marijuana-as-the-new-herbalism-part-3-a-cannabis-cures-cancer-testimonial/ Stay connected and let us learn about your treatment decisions. Tom

Sting, I was 54 when diagnosed also with late state NSCLC, but with a single large tumor in the main-stem of my right lung. First prognosis was inoperable. But my General Practitioner pushed the oncologist and thoracic surgeon toward aggressive treatment. Like you, I didn't know anything about cancer when diagnosed. I didn't even know what an oncologist was. I also experienced clinical shock and became irrational. A bit of the shock returns after my semi-annual scan and oncology consult. I call it scanziety. You are indeed blessed to have people who care about you in your corner as you go through treatment. Family support and wife caregiving was an essential aspect of my treatment. Let us know how your treatment progresses and if you have questions we might answer. Stay the course. Tom

Beth, I hope you and your father are adjusting to the news of the diagnosis. I am a seasoned cancer survivor but the news of diagnosis still shocks me, partly because I know the nature of the disease but mostly because it drudges up unpleasant memories I'd rather forget. At least you know the drill. Suite up, lock and load, and proceed purposefully to engage the beast. Keep us appraised of how he and you are doing. Stay the course. Tom

Sounds like things are headed in the right direction. Now for some challenges down the treatment road. Your encouragement about joining a support group is spot on. The radiation and chemo will physically wear him down but the pondering of the possible consequences of his disease combined with treatment debilitation will test his (anyones) coping skills. No one is prepared for this and he needs to get to a place where he can share his experiences and frustrations with people going through the same process. Blogging for me was a way I could share my feelings and relieve stress. But joining an on line support forum like Lungevity has an additional benefit of experiencing lung cancer from the patient prospective. Although we may have different variations of the same disease, lung cancer patients have much in common when it comes to treatment, side effects, and life after treatment. Your interest in his treatment and outcome suggests you are a caregiver and I encourage you to stay in touch as he progresses through treatment. Ensure you are familiar with all the resources of the LUNGevity Foundation (www.lungevity.org). Someone will always be here to address your questions. Stay the course. Tom

BlueWolf, Now I understand. Her sustaining problem is shortness of breath on minimal exertion despite a O2 saturation above 90%. Also noted are complications of Heart Disease and COPD. The latter might be driving the problem with the added complication of the patchy areas. You reported snoring as a symptom. Might she have a sleep apnea? My pulmonary medicine doc said my use of a CPAP for apnea was helping with O2 counts. Your sister might not even need a sleep study to get a prescription for a CPAP machine. If you get one, buy one on line (they are far less expensive) and buy a nasal pillow mask. I've found CPAP-Supply.com to be a good online source. You'll need a script for your first order but your GP or any doctor, even the oncologist, can provide that. Is she using O2? Doctors have told me O2 is in my future because I also suffer from shortness of breath on mild exertion and as I get older, it gets more pronounced. I've only got about 40% lung function and in the summer I get asthmatic symptoms that make breathing difficult. Stay the course. Tom

BlueWolf, I read your post history of your sister's treatment. On 13 August, you posted a radiologist's description of a recent CT scan and asked what the description meant. Here is a website that I've used in the past to understand my radiology impressions - http://www.radiologyassistant.nl/en/p50d95b0ab4b90/chest-x-ray-lung-disease.html I've had all kinds of unusual CT and PET scan findings. One CT reported by a radiologist in a local hospital on emergency admission scared the daylights out of the ER physician. A quick doctor-to-doctor consult with my oncologist calmed things down a lot. Radiographic interpretation is indeed difficult. The PET scan would have clarified the situation but for Medicare. Sadly, lung cancer has this unfortunate stigma of self-inducement that tamps down diagnostics and treatment that other cancer survivors normally benefit from. I wrote my congressman and senators a nasty letter about Medicare'd denial of PETs. It didn't change things, but perhaps if we all start pinging our elected officials, things might change. They did approve low dose CTs for at risk lung cancer patients. Now for some suggestions. My after scan consultations with my oncologist consisted of my oncologist reading and explaining the radiologist written report. No film was ever used. I once had an area of concern in my empty right cavity (post pneumonectomy) after a CT that the radiologist report suggested new metastatic disease. The word "opacification" was used in the radiologist interpretation. My oncologist called me before the consult and told me the opacification area was located in proximity to my incision scars - a site of chronic pain. We asked him to obtain the film for the consult. During the consult, my wife and I with the oncologist and senior scan technician looked at the film and concluded the reported area was indeed in the immediate area of my incision scars. So, sometimes asking your oncologist to obtain the actual film as an explanation vehicle is helpful. It did earn me another CT and the opacification was no longer present. Stay the course. Tom

I can't give a medical opinion; I'm a patient not a doctor. I can also only offer an opinion based on my experience. Given that understanding, I would suggest a focus on finding a medical oncologist your step father trusts and is comfortable with. I don't know if his disease is metastatic or not (the spots close to his heart are presumably in or on his lung) but it is late stage disease and if surgeons have declined to operate, then a medical oncologist becomes the quarterback of your step father's treatment team. One more thing is relevant. If surgery and radiation are ruled out, then your step father will likely receive a type of chemotherapy that is called "the standard of care". This is a National Cancer Institute endorsed formulation that almost everyone with your step father's stage and type of cancer will receive. If this is the case, then where the chemotherapy infusion occurs is almost immaterial. So if your step father found a medical oncologist in the Huntsville area he was comfortable with, and the doctor practiced at a small clinic, he'd receive exactly the same formulation that he'd receive at MD Anderson. Important to understand is this first series of treatments is called first line treatment. If first line treatment arrests his disease then celebrate, but it often doesn't. When it doesn't, second and third line treatments depend more on the skill and intuition of the medical oncologist rather than a standard of care. This is when you might consider obtaining treatment at a well known cancer treatment center. Moreover, sometimes experimental treatments emerge and your step father may benefit from such a treatment. Again these are found at larger cancer treatment centers. So, if surgery and conventional radiation with adjunct chemotherapy are ruled out by his doctors now, then I suggest finding a medical oncologist your step father trusts and is comfortable with. I found mine through my General Practitioner. A doctor close to home also holds the advantage of having family to help him through chemotherapy. He'll need help because side effects can be a challenge. I've attached "Ten Steps to Surviving Lung Cancer" that I wrote years ago. Some of this information may be helpful. Stay the course. Tom

I've read good things about Vanderbilt-Ingram Cancer Center. Assuming a Vandy-Ingram thoracic surgeon declined to operate, might you get a second opinion from a different thoracic surgeon associated with Vandy. MD Anderson consult in three weeks is fast. I live in Texas and many local survivors have waited months to be seen at Anderson. Assume he's had a biopsy and type of adenocarcinoma (non small cell?) is known. Also assume from your post the tumor is confined to a single location, so stage 3A. I think what is doctors are saying by recommending radiation and adjunct chemotherapy is they want to keep the single tumor from metastasizing to another location (second lung, lymphatic system, other organs). I can't suggest a better treatment center than Vanderbilt-Ingram in Tennessee.

Bob, Yours is a hard case. Thought a lot on how to respond. I conclude a treatment or no treatment decision is very personal. I did not make a no treatment decision and that achieved two outcomes: extended life at the price of debilitation during treatment and chronic pain after. Yet, for me the outcome of extra life was worth the cost. Some I've known decline treatment and their quality of short life avoids the cost of treatment induced debilitation. Unfortunately we share a disease with few available treatment options for late stage diagnosis. If you choose treatment, then I'm sure the professionals at MD Anderson will help you choose between conventional chemotherapy and immunotherapy. Having said all that, I've figured out my meaning of life since my diagnosis and extended treatment. It is joy. When I experience joy I am happy. Before diagnosis, I can't recall many times in my life where I experienced joy. After diagnosis, there are many. So my purpose for living is to experience joy. I spent 54 years living with few joyful experiences and more than 11 years living with many. Cancer changed my outlook on life. Find joy in living for either a treatment or no treatment decision. Stay the course. Tom

How can we help?

Stacy, I'm not a radiologist but the impression suggests an inability to classify the discovered nodules as cancer or not. A PET-CT appears to be the next test ordered. Here is a explanation of what that test consists of and how it determines metastatic disease (cancer). http://www.lungevity.org/about-lung-cancer/lung-cancer-101/diagnosing-lung-cancer/imaging-tests Stay the course. Tom

After surgery, tumors appeared in my left (remaining) lung and chemotherapy (I received both first and second line) was the only available tool. But, after second line failure, my oncologist learned cyber knife procedures used to treat brain tumors were being performed on a trial basis for certain types of lung cancer tumors. That bit of knowledge and his connections to get me into that trial program saved my life. I'm a Texan and well acquainted with the reputation of MD Anderson. I know many who were treated successfully and knew many who were not. The advantage of a large cancer research hospital is availability of trials or experimental procedures that might make a difference. What was (is) most important to me is the opinion of my medical oncologist. He practices in a small but complete treatment center but is well acquainted with emerging trials and methods of treatment. Likely, your Dad's first treatments will be what is called a "standard of care." That means all patients with the same type and stage of cancer receive the same (or nearly the same) chemotherapy routine. The PET and MRI along with the biopsy report should yield a definitive type and stage diagnosis. So a good question to ask his Chicago medical oncologist after scan results are revealed is what is the standard of care for my Dad's disease. He'll likely get that standard care prescription in Chicago or MD Anderson. If he doesn't respond to the standard of care, you might consider second line treatment at a large cancer research hospital. I failed second line also but the knowledge and intuition of my oncologist saved my life. I believe the skill of my medical oncologist was the most important factor in arresting my disease. Most importantly, please do not believe anyone advertising a miracle cure or significantly improved cure rates. Stay the course. Tom

It is so hard when parents pass or encounter complex health problems. From what you posted, I conclude late stage diagnosed lung cancer with metastasis. PET results should show the extent of metastasis and doctors can then formulate a treatment plan. Jefferson University Hospital (U Penn) has a stellar reputation, but again from the information you shared, the diagnosis is hard to dispute. I'd wait until you learn the current medical team's treatment plan and if you feel it is inadequate, then seek the second opinion on treatment. Strap in and be patient because treatment may not be pleasant and results may not show timely improvement. My disease took 3 years of near constant treatment to arrest and to this day, I'm not sure which was more difficult to endure, the treatment or the disease. But treatment did yield extended life - more than 11 years for me. Note I said extend life not cure. The objective of treatment is to achieve a no evidence of disease (NED) state. In my oncology consult in July, my doctor still declined to use the cure word. You can be a real help to your Dad by reading into the disease at this site (http://www.lungevity.org/) so you can explain all the jargon and medical terminology you'll encounter. As an example: non small cell, squamous cell, carcinoma. This forum is a good place to ask questions and you'll have many. Stay the course. Tom