Tom K

You should probably contact your oncologists and let them know about these symptoms. The doctors might be able to give you something to alleviate the discomfort. I had very similar treatments and I do not recall having a fever or a great deal of pain in my chest. My radiation was right in the center of my chest on my esophagus, so it did hurt a lot when I ate, but only when I ate. That lasted about 2 to 3 months. I did have a cough and I was given steroids and cough medicines to control it. That also took several months for it to resolve itself. The fever and the pain seem unusual compared to what I and others have experienced so I recommend you let your doctor know about it. I am glad you are back to work. It will do wonders for your peace of mind.

I started this note trying to be gentle, but that is not how I feel. I am angry. Very angry. Frank’s courage and humor was an inspiration and it is not fair that he be taken from us. Damn this disease. I can only imagine how his family must feel. I hope they draw some comfort knowing how much we loved him as well and that we share their grief.

Hi Frank, I hope you are comfortable and that they find a way to make you a little more mobile. I am also hoping the meds won’t prevent you from enjoying a beer or 2 while watching the game tomorrow. BTW, who are you rooting for?

I am not an expert, but I understand everybody with stage 4 lung cancer is eligible for Social Security regardless of age. You may want to contact them.

It does indeed seem like things are moving very slowly for you. You can see from my time line that it was exactly 2 weeks from the date of my first symptom to surgery. During those 2 weeks my PCP arranged for me to have a CT scan, a biopsy, a PET scan and a PFT (Pulmonary Function Test) as well as multiple meetings with the pulmonologist and the surgeon. My PCP was a real powerhouse driving things for me. He was pretty insistent that the other doctors should move quickly while I was still a stage 1. As it turned out I was actually a stage IIIa but that was not evident until a month after the surgery. One of the things I have learned at this site is the squeaky wheel definitely gets the grease. You may want to go back to you doctors and start complaining loudly. Particularly since it sounds like you may also be a candidate for surgery if they move fast enough.

I am a couple of hundred miles to the north of you and my car thermometer told me it was 28 degrees at 6 AM this morning. This afternoon, it is in the mid 50s.

I also gained about 20 lbs. My appetite has increased tremendously since I finished treatment. I don't know if my taste buds changed because of the chemo or because I quit smoking, but food is definitely more enjoyable these days.

Frank, I am so sorry to hear this. I hope the hospice team is able to make you comfortable and alleviate the pain, acid reflux and other discomforts you are dealing with.

Welcome and don’t hesitate to ask questions.

I think it is part of the fight. I went through a chemo-radiation treatment plan similar to yours. I worked part-time throughout treatment. Mondays were Chemo and radiation days so I did not work on those days. The rest of the week, I worked 6 hours each day then I would go to my radiation treatment and then home from there (where I usually took an afternoon nap). I think it helped me a lot because it gave me something to do each day and a reason for getting out of bed. It also helped to keep me from worrying too much. I was very anemic so there were a few days I was just too tired to go into work. You will have to decide how much you are capable of doing, but I recommend you work if you want to. It will help keep your head in the right place.

Kasey, No need to feel guilt at your good fortune. Even when the doctors say incurable there is hope, and you are the proof. When I was restaged to 3A, I was very scared and your story was one of the ones I latched onto as a source of hope. Your initial situation was far more serious than mine and you still beat it. That meant I could survive also. Thanks for all you have done and all the encouragement you have given and continue to give

I also drank lots of milkshakes. Here is my recipe for a 1200 to 1400 calorie shake. It helps that I am a chocoholic. 3 scoops chocolate ice cream 2 chocolate boost, 1 scoop chocolate carnation instant breakfast Squirt in a whole bunch of Hershey chocolate syrup and run through the blender A couple of shakes a day helped me keep the weight on. If they were too cold, my wife would put them in the microwave for about 15 seconds. She also bought me lots of those pudding and Jell-O cups to snack on. Meats were too painful to swallow and putting them through the blender made me loose what ever appetite I had. She made me lots of eggs (mostly over easy) for a good source of protein. Well cooked pasta with cheese sauces was tolerable (Marinara was untouchable). Fresh vegetable salads were hard to swallow but fresh steamed spinach became one of my favorites. I am not sure what your doctors told you but mine were very insistent that I maintain my weight. The kept reminding me that a feeding tube was an option.

Try not to worry. There are lots of reasons for unusual sounds and most of them are not serious. As I learned last summer, it is always better to wait until you have definitive test results.

I too was surprised by how long it took for the esophagus to heal. As I recall, it was very sore for about 2 months after the radiation was completed and it was 3 months before I could really enjoy food again.

Ask your doctor if he is treating this cancer with “curative intent”. If not, you may want to seek another opinion. The “Squeaky Wheel” cliché is defiantly true when being treated for cancer. If it is only one lymph node on the same side of the chest as the original cancer, you should seek and ask for aggressive treatment (assuming your partner is otherwise healthy enough to tolerate the treatment). From the little you have told us, it sounds like you and your partner have lots of reasons to be hopeful that this will be resolved. There are a lot of survivors posting on this site because they found a physician who was willing to be aggressive in their treatment. Good luck to both of you.

Congratulations!! You are one of my idols and I want to be just like you someday (getting ready for my 60th).

I am so happy for you. I know what a relief those results must have been for you.

Congratulations. Celebrate and enjoy.

Joe, Thank you for sharing this spectacular news, it brought a big smile to my face and brightened my day. I so love reading stories about victory over cancer.

I am still getting used to the idea that I am going to live longer than the stats said I would. But every day, I wonder if today will be day the reoccurrence surfaces. My doctor and I did discuss the follow up protocols in terms of scans and frequency and what symptoms I should report to him etc. But there were no discussions about nutrition or the anxiety issues that come with survivorship.

Lilly, None of us knows how strong we are until we have faced something like this. And you are one of the strongest. I doubt many of us would have been in the mood for a large family get together after going through what you did. You should be applauded for handling things as well as you have. I hope your PET scan provides good news but even if it doesn’t, remember, it could be a false alarm. A biopsy usually provides the definitive evidence. If you look at my history, you will see that I too had CTs, MRIs and PETs that all indicated the cancer had metastasized to my liver. I am glad to say that all the impressive wiz bang medical imaging technology was completely wrong. So don’t let the test results worry you until you have all the facts and options in front of you.

Glad to hear the good news. Congratulations. Now go out and celebrate!

This site is a source of so much hope for so many. Thank You - doesn’t seem to be enough for all that you have done.

I also enjoyed your post. I agree with your comment about the macho mystique, it totally melts in the face of this diagnosis. Please do not hesitate to ask if you have any questions. For me, it was easier to deal with things because this group gave me some indications of what to expect from the various drugs and treaments.

Thank You Dr. West. It will be great having a site mediated by an oncology professional with more timely and accurate information available. Again, Thank You.