Tom Galli

Glad you joined us. Interesting you mentioned your expectations on learning of your cancer diagnosis. Mine took some time to develop, then while in treatment they varied based on what I was experiencing. It took me some time to realize that although treatment had many ill side effects, it had one principal effect I often forgot about - life. Read in to our malady here - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 Feel free to ask questions or express frustration here also. There will likely be a multitude of both. Hope the winter in Minnesota is mild. Stay the course. Tom

Cindy, I plan on attending but I live about an hour away in Rockwall. Tom

Christine, Yes - any cancer diagnosis is overwhelming. Lung cancer results in a special form of overwhelming. Still hoping the PET scan shows localized disease. Let us know the results. Stay the course. Tom

Christine, The PET scan should answer a lot of questions. Am really hoping for a good outcome. Stay the course. Tom

Christine, I'm a member of the six months to live diagnosis club and good Lord willing, on February 4th of next year, will have lived 12 years after diagnosis. First step - get acquainted with the disease. Start your reading here: http://www.lungevity.org/about-lung-cancer/lung-cancer-101 There are two very important words missing from your description of your dad's cancer - stage and type. The MRI should have been definitive enough to suggest a stage. Perhaps your sister might have the information. The type will be determined after the biopsy by the pathology investigation. Normally, a type and stage are determined before physician suggests a prognosis. They are necessary elements of information before a treatment means can be determined. You'll have many questions and this is a good place to ask away. Stay the course. Tom

Elizac, Sorry, I overlooked your post on October 11th. I do recall the flushing solution giving me a rush also. Also, it had an anesthesia like smell. I never asked about this and perhaps I'll ask my doc on my next consult. I hope you've shared the bad symptoms during infusions with the chemo nurse. Everyone experiences side effects but these usually take a couple of days to settle in. Bad symptoms during the infusion are serious and should be reported immediately to your chemo nurse. I was scared and I also felt like a "lab rat" test subject many times. I wish I had a solution on how to deal with these feelings. Don't do what I did. I bottled them up and ended up with a full blown case of deep depression that required medication and counseling to address. Find a support group in your local area to attend and share your feelings. Believe New Eagle, PA is near Pittsburgh and there should be many in the area. You might try LUNGevity LifeLine Support at www.lungevity.ort/lifeline Direct answers about how treatment is affecting disease, especially during chemotherapy, are hard to come by. You'll get maybe three or four infusions, then have a scan. After the scan, you may get answers. But, I've had many scans when clear answers were not given. The extent of change in tumor size was just not noticeable. This, unfortunately, is what makes cancer treatment so frustrating. We have this expectation of getting sick, taking a pill (undergoing treatment), and getting better. Then we get cancer, undergo treatment, and don't. We don't even know if we are going to get better. I know my oncologist well after nearly 12 years of association. He still doesn't give me direct answers. For what it is worth, I am still scared! Stay the course. Tom

Eric, Nice! Celebrate indeed. Stay the course. Tom

Oh my! I'm not a doctor but my mother had congestive heart failure, severe rheumatoid arthritis, and COPD. Thankfully not cancer. She had circulator problems and these led to neuropathy symptoms like your reported foot drop. The reason our doc gave was mom would sit long periods and her weight would compress nerves against bone causing a temporary neuropathy. Mom would also get Prednisone particularly when she had a bad chest cold. ​No doubt there is a lot going on and a lot of doctor opinions floating around. I'd find a single doctor I'd trust and try and get and understanding of the complex symptoms. My general practitioner (GP) is the quarterback of my health care team. He gets all the reports on tests ordered by various specialists, knows me, and I trust him. If it were me or my mother (sadly she passed in February just after her 88th birthday), we'd lay this all out to our GP. It sounds like you are getting lots of confusing advice and putting the ball in a single doctor's hand might yield a reasonable explanation of symptoms and relief. Stay the course. Tom

Michelle, Glad you found us. MD Anderson is a wonderful resource but it is sometimes hard to arrange timely appointments. A stage 4 diagnosis generally means tumors are located in several places throughout the body. That rules out surgery and conventional radiation. I was treated with taxol carboplatin which I believe is the standard of care for squamous cell, non small cell lung cancer. Is she going to start her chemo while waiting to get an Anderson consult? Have you read into your mom's disease? Here is a good resource - Lung Cancer 101 - http://www.lungevity.org/about-lung-cancer/lung-cancer-101 You'll have lots of questions and feel free to ask. Stay the course. Tom

Post where ever you wish. You don't need to use another board. Very sorry about your brother's pain. Many skip or postpone chemo because of quality of life concerns. There is no formula for treatment. Stay the course. Tom

Elizac, Denzie said it all. Here is how you get in touch Lungevity LifeLine support - www.lungevity.org/lifeline. Please make contact so you can converse with someone who has experience navigating the mayhem that is lung cancer. Try and write down your questions as they arise and have someone go to your treatment consultations with you so you get answers. I was so affected by the thought of lung cancer that I couldn't formulate rational questions but my wife did and she attended every consultation to ensure questions were answered. Stay the course. Tom

Beth, Glad the port area is healing. You've already experienced the benefit I note. I ask my doc to prescribe a Xanex before I have long scans - PET or MRI. You might think about that to eliminate future stress. Keep us posted and stay the course. Tom

Roxanne, An ax never falls on its own accord. You've had the right conversation with your doctor; you've got a plan, and Cindy's idea is a good one. Connect with someone you can talk to about this nightmare we share. And, there is always hope, always. I well recall my chemo conversation with my oncologist. I remember that time when every other scan would show tumors a little bigger, then a little smaller, then a little bigger. He didn't know if my second line taxol - carboplatin hardened with Tarcevia was having an effect. It was maddening! Tarcevia was causing the worlds worse kind of acne ever seen that was magnified by my bald head, then nausea, and diarrhea, and joint pain, and long bone pain from Neulasta and on and on and on. You know the drill! He believed I was having a good enough response to consider my disease chronic and perhaps controllable for some time with chemo. And that was the course we were on when the FDA approved cyber knife radiation for lung tumors. I went from hope to NED (no evidence of disease) in 3 days. I pray you have a post scan consult with your oncologist and the doctor questions if the radiologist looked at the right scan for this one is NED! And its the right scan. Stay the course. Talk to a Lungevity mentor. Go to a support group. Tom

bjackson - absolutely correct. I do not enjoy the beach. Eric - I question appearance in the Scottish Opera.

Welcome here. It is indeed a strange circumstance. Normally after a biopsy a pathologist generates a report. Ask for a copy (your surgeon's office staff should be able to quickly get you a copy), then take it to an oncologist and ask for clarification. I've never heard of a situation where a tumor was not cancer and a surgeon still wanted to remove a lung. Something does not add up.

Teresac, You are so right, cancer especially lung cancer, does indeed suck! I wish I had a magic wand to waive this horrible disease from your mother. I don't. When my treatment options were narrowing, I had a great deal of difficulty sharing what I was feeling. I was afraid. That is likely what is affecting your mother also. You have time. Spend it recalling memories, funny stories, the family holiday that went wrong (everyone has one of those BTW). Help your mother understand that palliative treatments can ease pain and discomfort so she'll have time to gather the clan and remember the good times. Holiday season is upon us. Plan a family gathering. I felt like a kid around my mom until the day she passed. I suppose that is a universal feeling. Stay the course, Tom

Welcome here. Excepting motherhood, I've been exactly where you are now. At diagnosis, my surgeon told me I was not a surgical candidate. But my oncologist figured out a way to shrink the tumor to allow surgery. I had a years worth of post surgical complications from removing my right lung and during that period, the cancer migrated to my left lung. I was then right where you are - on the 20% five-year survival curve. Come February 4th, good Lord willing, I will have survived 12 years from non small cell, squamous cell, lung cancer. It took all kinds of treatment, most of that was unsuccessful. I had lots of nervous time anticipating and waiting for scans, so much so, I coined a term for the special anxiety we lung cancer patients experience - "Scanziety"! I was absolutely afraid, then depressed, then afraid and depressed. But I believed I'd be one of the 20% and if I could live one year, why not five? When I got to five, why not ten? After you digest this, I've got some information on understanding survival statistics that you may find comforting. But for right now, I'll keep it simple. You've got to want to survive to survive. You've got to believe you will live to live. I believe attitude is of ultimate importance in arresting your disease. And, you can influence your attitude about survival, treatment and life. You are in charge of your feelings and beliefs. They are about the only thing you can control during lung cancer treatment, so grab the control and believe you are going to make that 20%. Believe you are going to make the 1% or the 1/2% who go on to have lengthy lives after treatment. Show up to treatment armed with this positive attitude and unshakable belief in life and tell the doctors to "bring it on"! Stay the course. Tom

Welcome here. We can help you with that two ways. First, you can share your questions or concerns in this forum. Second, we have a LifeLine Support Program that can match you to a person who is experiencing or has experienced your disease and treatment. To participate in LifeLine, navigate to this link and fill out the online application. www.lungevity.org/lifeline Stay the course. Tom

Welcome here. We share a disease and an experience - a port. I also experienced discomfort from my port. There was bruising for several days and pain when I repositioned my chest or moved my left arm. Those were told to me before installation and I was further told if I developed a fever, to report that to my doctor immediately. So, I'd say your discomfort matches mine and mine did pass in a couple of days. Having a port for chemo was so much better that the IV stick battle that ensued during my first and second line treatments. I used up chemo nurses like the interest rising on the national debt. Once, I used every nurse in the clinic and they needed to bring a CT scan technician to find a cooperating vein. Hydrocodone caused me sleep difficulties. I get itching sensations all over my body. I find Tramadol HCL a better pain medication for me. Stay the course. Tom

Cindy - My guess is you don't enjoy tomatoes. Here are mine: 1. I enjoy cooking 2. I enjoy cruise vacations 3. I enjoy time on the beach Which is not true of me?

Do stick together ladies. And, attitude does make a significant difference. Stay the course. Tom

Barb, Put on your battle dress, lock and load, and proceed purposefully to destroy the cancer. I assume either a resection of the tumor or a lower lobectomy (the right lung has 3 lobes, the left 2). Your surgeon may not know which till he opens you up. After surgery and recovery, you'll likely have a course of chemotherapy - informally called dust-up chemo. It is designed to kill anything in your blood stream that might have been dislodged during surgery. Might be a good idea to consult with a medical oncologist before surgery to coordinate the chemo. UT Southwestern is a good place. Right about the arterial blood test. Ask for a lidocaine injection to lesson the considerable discomfort. The pulmonary function test is a piece of cake. You breath hard into a device for 3 times and then they give you a does of inhaler and you repeat the test. It is designed to see if you have adequate lung capacity to afford losing some capacity due to surgery. Your primary care physician is a hero! Stay the course. Tom

Cindy, So glad you are feeling better and really crossing my fingers about your 9 Oct scan. Hope those little nodules just disappear. Stay the course. Tom

Susan, Glad you found us. I don't read "all about me" in your post. True, cancer affects individuals but because of its level of devastation and limited treatment, it has substantial impact on families as well. My wife relates many examples of helplessness and fear as she guided me through treatment. She had to suffer in silence, afraid that if she told me of her feelings, I might grow even more despondent. Only years later, after my disease was well arrested is Martha opening up and discussing the affects my disease and treatment had on her. She shouldered a heavy burden. You are lifting that burden also even given your geographic separation. Your mention of being "overwhelmed and out of control" is typical and more importantly very understandable. It is your mother after all and we only get one of those a life time to love. As for dealing with work and other obligations, you might try seeking out local cancer support groups and expressing your feelings among a group of survivors and caregivers. I attend several in my area and we often have family members join to express their frustration and disillusionment with the treatment process. One thing for certain, everyone in a cancer support group will understand and has experienced what you are dealing with, so you'll fit right in. Here is an online resource that might be of use as you read in to the role of being a caregiver, even a remote one - www.lungevity.org/caregivers Stay in the course. Tom

Welcome here. There is always hope. It took just over 4 years of near continuous treatment before I achieved a finding of no evidence of disease or NED. I had 3 failed surgeries, 4 failed stent insertions, 1 failed session of conventional radiation with adjunct chemotherapy, 2 failed sessions (6-cycles each session) of conventional chemotherapy, a failed session of oral chemotherapy, and finally a successful cyber knife that brought me to NED. I lived on hope for 4 years. My treatment timeframe was in the dark ages where few alternatives of chemotherapy were available. My oncologist kept trying to keep me alive till something hatched out of trial or research that would save my life and that is exactly what happened. There will be disillusionment, despair, and disappointment in the extreme but there will always be hope. Killing cancer cells with chemicals is so daunting, it is like "finding some agent that will dissolve away the left ear and leave the right ear unharmed." In spite of this, there is always hope. No I don't know of a treatment your brother should be considering save for the next idea his oncologist has. Encourage your brother to have his oncologist suggest options, limited they may be. If this doctor runs out of options, consult another for there is always hope. Stay the course. Tom