Tom K
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Posts posted by Tom K
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Welcome and don’t hesitate to ask questions.
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I also did the same treatments and just like Heather, the radiation was over the esophagus so that was painful and made if difficult to eat. Other than that, I had some joint pain and became anemic which made me very tired. I received arensp shots for the anemia which helped with the tiredness. They gave me drugs with my chemo to prevent nauseousnes and it seemed to work pretty well. I did have hiccups the day after chemo but they alwasy went away after the first day. My hair didn't fall out during the first 8 week sessions but it did when they added more chemo a month later. I also developed neuropathy in my feet during the consolidation chemo (which I still have today). Let me know if you have any questions.
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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.
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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
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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.
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Hi Sharon,
I don’t have experience with any of the drugs you mentioned but I am so sorry to hear about the liver mets. Have your doctors considered a biopsy just to be sure? When all the imagining studies indicated I had liver mets, it was the biopsy that provided the definitive answer. Doing the biopsy was somewhat controversial because the other doctors thought the imaging studies were sufficient evidence. But my primary Onc argued my case before the tumor board and the surgeons and radiologists finally agreed. The surgeon had me sign a release to allow him to resect my liver because he fully expected to find cancer. So I am a pretty big proponent of getting biopsies whenever possible.
I hope you enjoy your trip to Florida. Like the rest of the East Coast we have been unusually warm this winter, so the temperatures will likely be in the mid eighties when you visit next month.
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This is fantastic. It is so great reading good news. I hope it keeps coming for you and Carlton.
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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.
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Kasey,
Glad to hear you are feeling better. I am sure your scans will come back NED. After all, you have been through, you should be one of our poster children for survivorship.
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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.
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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.
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Congratulations!! You are one of my idols and I want to be just like you someday (getting ready for my 60th).
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I am so happy for you. I know what a relief those results must have been for you.
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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.
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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.
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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.
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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.
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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.
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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.
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I did not have the same drugs as you, but I also did not have many side effects at first. My onc told me the extent of side effects or lack of them, are not related to the effectiveness of the treatment one way or the other. You should ask your Onc if the same thing applies to the drugs you are being given.
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I didn’t get one. I guess at 5'6" I don’t qualify has a “little bit higher height”.
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Thinking of you Rich. I guess it’s a good thing we all live so far apart, or that hospital room would be very crowded about now.
Frank Lamb Update// Dead Man Walking 01/27/2007
in LC SURVIVORS
Posted
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.