Any Under 40 Survivors?
David
Hillsboro, OH
Comments
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PLEASE send me an e-mail. WeArchTB said:I really hope so!
Hi David,
I really hope there are quite a few of them out there! My husband is 37 and we are fighting to be among the survivors. He has stage 3.
Olya
PLEASE send me an e-mail. We should talk.
-David
dwhite0002@aol.com0 -
@ Dwhite0002: hello, wanted
@ Dwhite0002: hello, wanted to first say that I am a guy posting under my wife's account since I only check this site maybe twice a week, she's on here more than I am...
but I just wanted to let you know that I am 30 and a survivor, I am 6 months removed from my esophogectomy, and almost a year removed from my initial diagnosis.0 -
How is it going?petals007 said:@ Dwhite0002: hello, wanted
@ Dwhite0002: hello, wanted to first say that I am a guy posting under my wife's account since I only check this site maybe twice a week, she's on here more than I am...
but I just wanted to let you know that I am 30 and a survivor, I am 6 months removed from my esophogectomy, and almost a year removed from my initial diagnosis.
How is it going?0 -
Decent at the moment. Like adwhite0002 said:How is it going?
How is it going?
Decent at the moment. Like a lot of cancer survivors that I have met recently, 90% of the time I'm happy as hell to simply be alive.
Anytime you think of Cancer it's always a sad occasion because it's a killer, but I was extra sad when I got diagnosed with E.C. because after reading about it, it sounded like one of the more deadly and rare cancers.
So I'm happy that mine was caught early, I'm happy to have survived the surgery as well. My only (minor) gripes are that I lost about 65 lbs and I'm now a string bean, and I believe it contributed to the loss of my job as well.
It's also a little difficult I think for any guy to get used to being less than 100%. Most guys are raised to be self sufficient and capable, and when you need to rely on other people for help it can be a bit of a shock.
So, on the whole I'm just happy. I can eat about 85% of the things I used to before my surgery, my weight has settled at 118 ~ 120 lbs instead of continuing to drop, and I just feel like I have a new lease on life.
I could certainly complain about the negative stuff but I just feel like that would be a mis-use of my time.
How are things with you?0 -
a few questions for youpetals007 said:Decent at the moment. Like a
Decent at the moment. Like a lot of cancer survivors that I have met recently, 90% of the time I'm happy as hell to simply be alive.
Anytime you think of Cancer it's always a sad occasion because it's a killer, but I was extra sad when I got diagnosed with E.C. because after reading about it, it sounded like one of the more deadly and rare cancers.
So I'm happy that mine was caught early, I'm happy to have survived the surgery as well. My only (minor) gripes are that I lost about 65 lbs and I'm now a string bean, and I believe it contributed to the loss of my job as well.
It's also a little difficult I think for any guy to get used to being less than 100%. Most guys are raised to be self sufficient and capable, and when you need to rely on other people for help it can be a bit of a shock.
So, on the whole I'm just happy. I can eat about 85% of the things I used to before my surgery, my weight has settled at 118 ~ 120 lbs instead of continuing to drop, and I just feel like I have a new lease on life.
I could certainly complain about the negative stuff but I just feel like that would be a mis-use of my time.
How are things with you?
My husband is recuperating from the surgery (MIE)(3 wks) and it really concerns me when I read how so many people drop so much weight. How long were you on the j-tube and did they give you enough calories to maintain your weight? Did you eat food while you were still on the tube? My husband lost about twenty lbs when going through the chemo & radiation, but I got that weight back on him before surgery. He is back down fifteen lbs and holding at the moment. He is on the j-tube 14 hrs a day. He doesn't have much of an appetite but I fix homemade potatoes & gravy, jello, Carnation Instant Breakfast with whole milk, and now we can start adding some other foods.
It was helpful for me to read that it is hard not to be 100%. My hubby is the self sufficient, capable, wants to do for me kind of guy and is having a hard time being so weak & helpless. He is going through a bit of what I have "diagnosed" as post surgery depression. On one hand he is so happy to be alive and cancer free, but right now doesn't see much light at the end of the tunnel in getting back to normal. He has never been sick his whole life until now, and is 68.
Thank you for sharing, even though it was for someone else, I needed to read that tonight.
Linda0 -
I continue to deal withlinda1120 said:a few questions for you
My husband is recuperating from the surgery (MIE)(3 wks) and it really concerns me when I read how so many people drop so much weight. How long were you on the j-tube and did they give you enough calories to maintain your weight? Did you eat food while you were still on the tube? My husband lost about twenty lbs when going through the chemo & radiation, but I got that weight back on him before surgery. He is back down fifteen lbs and holding at the moment. He is on the j-tube 14 hrs a day. He doesn't have much of an appetite but I fix homemade potatoes & gravy, jello, Carnation Instant Breakfast with whole milk, and now we can start adding some other foods.
It was helpful for me to read that it is hard not to be 100%. My hubby is the self sufficient, capable, wants to do for me kind of guy and is having a hard time being so weak & helpless. He is going through a bit of what I have "diagnosed" as post surgery depression. On one hand he is so happy to be alive and cancer free, but right now doesn't see much light at the end of the tunnel in getting back to normal. He has never been sick his whole life until now, and is 68.
Thank you for sharing, even though it was for someone else, I needed to read that tonight.
Linda
I continue to deal with weight loss, because I simply cannot eat well. Now...it DOES get better, than at first.
Choices for me are to drink four cans of Carnation VHC (very high calorie: 560 cals. each) or to run it overnight through a tube.
I find that I do not drink the cans, eventhough I set out to do so. I have to drink them so slowly to aavoid nausea and "dumping" that I end up NOT doing it.
So for me, I do better with a j-tube. I know that I will get enough calories overnight and can eat as much (or as little) as I want during the day.
I am currently 6'4'' and about 150 lbs. Without the tube, I had dropped to 137 lbs this past fall and felt awful.
With the tube back in, I am slowly gaining weight. My goal is to up to 160 in a few months.
We are never trutly "normal" again, but we can learn to enjoy food in small portions, and get used to living. I am thankful that I am in the 15% that survives this terrible type of cancer.
-David0 -
You and I should talk,petals007 said:Decent at the moment. Like a
Decent at the moment. Like a lot of cancer survivors that I have met recently, 90% of the time I'm happy as hell to simply be alive.
Anytime you think of Cancer it's always a sad occasion because it's a killer, but I was extra sad when I got diagnosed with E.C. because after reading about it, it sounded like one of the more deadly and rare cancers.
So I'm happy that mine was caught early, I'm happy to have survived the surgery as well. My only (minor) gripes are that I lost about 65 lbs and I'm now a string bean, and I believe it contributed to the loss of my job as well.
It's also a little difficult I think for any guy to get used to being less than 100%. Most guys are raised to be self sufficient and capable, and when you need to rely on other people for help it can be a bit of a shock.
So, on the whole I'm just happy. I can eat about 85% of the things I used to before my surgery, my weight has settled at 118 ~ 120 lbs instead of continuing to drop, and I just feel like I have a new lease on life.
I could certainly complain about the negative stuff but I just feel like that would be a mis-use of my time.
How are things with you?
You and I should talk, sometime. I think it would do us both some good to hear each other's stories. I am married and have 3 children and teach vocal music full-time and work in church music, part-time. I, too, am used to be totally in control and 100%. If you look below, you will see I am a string been (LOL). Sounds like you are in the club!
Seriously, though, let's talk sometime...
-DW0 -
@ Linda1120: I understandlinda1120 said:a few questions for you
My husband is recuperating from the surgery (MIE)(3 wks) and it really concerns me when I read how so many people drop so much weight. How long were you on the j-tube and did they give you enough calories to maintain your weight? Did you eat food while you were still on the tube? My husband lost about twenty lbs when going through the chemo & radiation, but I got that weight back on him before surgery. He is back down fifteen lbs and holding at the moment. He is on the j-tube 14 hrs a day. He doesn't have much of an appetite but I fix homemade potatoes & gravy, jello, Carnation Instant Breakfast with whole milk, and now we can start adding some other foods.
It was helpful for me to read that it is hard not to be 100%. My hubby is the self sufficient, capable, wants to do for me kind of guy and is having a hard time being so weak & helpless. He is going through a bit of what I have "diagnosed" as post surgery depression. On one hand he is so happy to be alive and cancer free, but right now doesn't see much light at the end of the tunnel in getting back to normal. He has never been sick his whole life until now, and is 68.
Thank you for sharing, even though it was for someone else, I needed to read that tonight.
Linda
@ Linda1120: I understand how you feel. My wife was worried about everything under the sun after researching the cancer and people's accounts of fighting it.
She was worried about the low survival rate of the cancer itself, the low survival rate of the surgery, and then the enormous amount of stress the recovery puts on the body.
I was on the J-Tube only post-surgery, for about four weeks. I was fed Osmalite (not sure if I spelled that right) and no, it really did not provide enough calories to maintain my weight. It just did enough to keep me alive as I dropped about 58 ~ 65 lbs in the following weeks. Like with your husband, I lost about 15 lbs or so while going through chemo / radiation, but I gained it back before the surgery. Immediately after the surgery I was on the J-Tube about 18 hours a day, but as time went on and my stomach became stronger I was on it about 12 hours a day right before it was time to take it out.
I couldn't eat food while on the J-Tube because of the esophagectomy. Immediately after the surgery I had to do a "swallow study" where the doctors use some sort of X-ray machine to see how the "new throat" has healed, and unfortunately I failed my swallow test twice.
They make you drink some fluids (the only one I remember is barium and that is because it was really nasty) and then watch it go down your throat on a X-ray machine. The first two times I did that they noticed a small leak, so I was not allowed to drink / eat anything until that healed which took some time. Even after I was able to pass the third swallow test, I was only allowed to drink a small amount of liquids (about 1 tablespoon) until I was taken off the J-Tube weeks later.
If your husband is able to eat while on the J-Tube, that is a small bit of positive news. Because for the weeks I was unable to eat / drink were possibly the most difficult days of my life. I was losing weight rapidly, weak as hell from the surgery, it was summer time (June, July) and extremely hot and I couldn't drink anything, and every commerical on TV seemed to be about food. I hated Pizza Hut and T.G.I.F. for a long time. And whenever I went outside for some fresh air I hated anyone that was eating or drinking anything. hehehe.
I'm glad reading my story was helpful. Like I mentioned to Dwhite, my wife is the one that found this board and she visits here more than I do. She is the one that pointed out DWhite's post to me and urged me to speak up. But I'm a stereotypical guy in that I don't really speak much about my problems. That has to do with what I mentioned about "most" guys being raised to be self-sufficient and capable.
I hope he is able to cheer up because I was in his shoes not too long ago. Just a year ago I was 29, was 5ft. 9in. tall and 180lbs.... and then post surgery I went down to 114 at the lowest, I didn't have enough energy to walk longer than 3 minutes while getting tired, and I couldn't eat anything at all without having dumping pains.
Now, I'm still only 120lbs but my appetite is crazy, I can't eat as much as I used to in one sitting, but now I'm always eating. All day long. That might have to do with the way my stomach is now, or it might have to do with me hating not being able to eat / drink for those weeks and I'm just food crazy, I have no clue. I can also eat about 85% of the stuff I used to eat pre-surgery.
But I guess what I'm trying to say is that eventually it gets better. It just takes awhile. My wife told me that she read most people that go through a esophagectomy report that it takes them 1 ~ 2 years to get back to 80% of their normal energy levels depending on the individual.0 -
@ Dwhite0002: I understanddwhite0002 said:I continue to deal with
I continue to deal with weight loss, because I simply cannot eat well. Now...it DOES get better, than at first.
Choices for me are to drink four cans of Carnation VHC (very high calorie: 560 cals. each) or to run it overnight through a tube.
I find that I do not drink the cans, eventhough I set out to do so. I have to drink them so slowly to aavoid nausea and "dumping" that I end up NOT doing it.
So for me, I do better with a j-tube. I know that I will get enough calories overnight and can eat as much (or as little) as I want during the day.
I am currently 6'4'' and about 150 lbs. Without the tube, I had dropped to 137 lbs this past fall and felt awful.
With the tube back in, I am slowly gaining weight. My goal is to up to 160 in a few months.
We are never trutly "normal" again, but we can learn to enjoy food in small portions, and get used to living. I am thankful that I am in the 15% that survives this terrible type of cancer.
-David
@ Dwhite0002: I understand what you mean. While I wont say I continue to deal with weight loss because my weight has stabalized.... I guess I can say I still deal with the fact that I'm now the same size I was in the 8th grade, lol.
I'm amazed that you are still on the J-Tube after four years. Your dumping pains must be really bad, or perhaps it is just hard eating with the smaller "throat" from the surgery.
My main problems with eating are of course the dumping issues, and I really have to pay attention and cut everything up into extremely small pieces so that the food does not get stuck going down. I avoid peanut butter, steak, broccoli, and other "dry, tough" foods like the plague. But I can do soft foods a lot better. I eat ribs, some fish, lasanga, spaghetti, pasta, etc. etc. with ease.
I also don't like those protien drinks either because they taste funny and because they give me terrible dumping pains as well. I can only drink about 1/4 of Ensure, Boost, or Muscle Mile safely. Anything more than that and I will end up curled into a ball from the pain. I also can't drink milk (one of my favorite things to drink pre-surgery) or have milkshakes. Those are like kryptonite right now.
But, I do drink the shakes.... just one a day. When I wake up, I sip 1/4 a can, and then every 4 to 5 hours after that I sip some more. That helps me lessen the dumping pains. Or, if I'm feeling creative I'll puree / blend some food together and then pour some of the Boost, Ensure, Muscle Milk in there as well.
My favorite concoction to make is to put mashed potatoes, lasanga, Boost / Ensure, and a little bit of Indian chicken curry sauce in there for flavoring and blend it up until it's semi-thick like a milkshake.
I make about 4 cups worth of that and eat / drink 2 cups worth at a time. Because the Boost / Ensure is mixed with that other stuff, the dumping isn't too bad. The symptoms are still there, but just not nearly as strong as drinking the Boost / Ensure straight up.
I know how you feel regarding feeling aweful having lost all of that weight too. My dad was 6'5'' and about 235 when he was alive, so I can imagine what it's like to be down to 137 and then 150. Hell, I'm nowhere near 6'4'' but at 120 I'm relatively the same size as far as how thin we are. I used to be able to lift weights, run, shovel snow for my wife, and just be physically active. Now I can walk up about 2 flights of stairs before being tired, and I didn't even try shoveling snow this year when we got some. I'm hoping in due time I'll regain some more weight and energy as well.
I'm not too worried about getting back up to 180 again though. So long as I can breath o.k. and continue to eat (even with dumping) I'm happy. I just keep thinking about the few weeks post surgery and how aweful that was.
I had a tube up my nose and down my throat to suck up excess fluid, which sucked because it made breathing hard. And I couldn't eat or drink anything.... and just being in the hosptial for an extended period of time sucks.
But like you, I am just happy to be home, breathing fresh air (away from that "hospital smell), eating foods, and spending time with family / friends. 15% is definitely too low of a survival rate, but we are definitely proof that this type of cancer is beatable.
If you ever want to talk, we can always chat here, or you can e-mail me at my Yahoo. address. I don't have a cell phone anymore as it's one of the things I had to let go when my job fired me after the surgery.0 -
job?petals007 said:@ Dwhite0002: I understand
@ Dwhite0002: I understand what you mean. While I wont say I continue to deal with weight loss because my weight has stabalized.... I guess I can say I still deal with the fact that I'm now the same size I was in the 8th grade, lol.
I'm amazed that you are still on the J-Tube after four years. Your dumping pains must be really bad, or perhaps it is just hard eating with the smaller "throat" from the surgery.
My main problems with eating are of course the dumping issues, and I really have to pay attention and cut everything up into extremely small pieces so that the food does not get stuck going down. I avoid peanut butter, steak, broccoli, and other "dry, tough" foods like the plague. But I can do soft foods a lot better. I eat ribs, some fish, lasanga, spaghetti, pasta, etc. etc. with ease.
I also don't like those protien drinks either because they taste funny and because they give me terrible dumping pains as well. I can only drink about 1/4 of Ensure, Boost, or Muscle Mile safely. Anything more than that and I will end up curled into a ball from the pain. I also can't drink milk (one of my favorite things to drink pre-surgery) or have milkshakes. Those are like kryptonite right now.
But, I do drink the shakes.... just one a day. When I wake up, I sip 1/4 a can, and then every 4 to 5 hours after that I sip some more. That helps me lessen the dumping pains. Or, if I'm feeling creative I'll puree / blend some food together and then pour some of the Boost, Ensure, Muscle Milk in there as well.
My favorite concoction to make is to put mashed potatoes, lasanga, Boost / Ensure, and a little bit of Indian chicken curry sauce in there for flavoring and blend it up until it's semi-thick like a milkshake.
I make about 4 cups worth of that and eat / drink 2 cups worth at a time. Because the Boost / Ensure is mixed with that other stuff, the dumping isn't too bad. The symptoms are still there, but just not nearly as strong as drinking the Boost / Ensure straight up.
I know how you feel regarding feeling aweful having lost all of that weight too. My dad was 6'5'' and about 235 when he was alive, so I can imagine what it's like to be down to 137 and then 150. Hell, I'm nowhere near 6'4'' but at 120 I'm relatively the same size as far as how thin we are. I used to be able to lift weights, run, shovel snow for my wife, and just be physically active. Now I can walk up about 2 flights of stairs before being tired, and I didn't even try shoveling snow this year when we got some. I'm hoping in due time I'll regain some more weight and energy as well.
I'm not too worried about getting back up to 180 again though. So long as I can breath o.k. and continue to eat (even with dumping) I'm happy. I just keep thinking about the few weeks post surgery and how aweful that was.
I had a tube up my nose and down my throat to suck up excess fluid, which sucked because it made breathing hard. And I couldn't eat or drink anything.... and just being in the hosptial for an extended period of time sucks.
But like you, I am just happy to be home, breathing fresh air (away from that "hospital smell), eating foods, and spending time with family / friends. 15% is definitely too low of a survival rate, but we are definitely proof that this type of cancer is beatable.
If you ever want to talk, we can always chat here, or you can e-mail me at my Yahoo. address. I don't have a cell phone anymore as it's one of the things I had to let go when my job fired me after the surgery.
You were fired??? I didn't think that was legal...0 -
Yupdwhite0002 said:job?
You were fired??? I didn't think that was legal...
@ Dwhite: yeah, I used to sell cars for a Honda dealership for almost five years. I was one of their top salesman too.
but I went to work a.s.a.p. after my surgery... I think about 6 weeks after. I was extremely weak still but I went anyway because I had exhausted all of my savings due to not making a lot of money with the recession and then being off of work for 6 months due to fighting the cancer.
and when I went back to work, my immediate supervisor told me I could make up my own schedule, come / go as I please since he knew my situation and because I had been there for so long.
but that lasted like all of 3 weeks when my supervisor told me that the owner of the dealership wanted me fired for not selling enough cars.
I knew that was just B.S. because at the time of my firing the entire month was not completed and I had 5 cars sold. Our quota at the time was 7 cars a month. So I had another week to sell 2 cars. I actually had two cars due to be delivered from the manufacturer that week for customers that left deposits for them at the beginning of the month, so I know I would have achieved that goal. Even if those two cars were not delivered, it was still possible that I could have sold two cars in the remaining week as that I had already accomplished that the first and third week of that month.
My other gripe was of course, I was told I could make up my own schedule and come / go as I please, but nothing was ever mentioned about me still having to meet our quota. Last but not least, at the time of my firing I was in 4th place out of 15 salesman. So if they were sticking by the quota rule there should have been 11 other salesman that should have been fired before me.
My immediate supervisor told me that he even believed that the owner was firing me because I couldn't work as many hours as I used too; I went from working 44 ~ 60 hours a week down to 10 ~ 20 a week. My immediate supervisor said that he felt I should take a few months off to heal up and then re-apply when I'm stronger and can work more hours.
Everyone that I've spoken too has said that what they did was illegal and that the owner was just hiding behind the quota policy to cover his ****. The people I used to work with there, all of the Human Resource managers I've spoken too when I went job hunting, etc. etc.0 -
Thank youpetals007 said:@ Linda1120: I understand
@ Linda1120: I understand how you feel. My wife was worried about everything under the sun after researching the cancer and people's accounts of fighting it.
She was worried about the low survival rate of the cancer itself, the low survival rate of the surgery, and then the enormous amount of stress the recovery puts on the body.
I was on the J-Tube only post-surgery, for about four weeks. I was fed Osmalite (not sure if I spelled that right) and no, it really did not provide enough calories to maintain my weight. It just did enough to keep me alive as I dropped about 58 ~ 65 lbs in the following weeks. Like with your husband, I lost about 15 lbs or so while going through chemo / radiation, but I gained it back before the surgery. Immediately after the surgery I was on the J-Tube about 18 hours a day, but as time went on and my stomach became stronger I was on it about 12 hours a day right before it was time to take it out.
I couldn't eat food while on the J-Tube because of the esophagectomy. Immediately after the surgery I had to do a "swallow study" where the doctors use some sort of X-ray machine to see how the "new throat" has healed, and unfortunately I failed my swallow test twice.
They make you drink some fluids (the only one I remember is barium and that is because it was really nasty) and then watch it go down your throat on a X-ray machine. The first two times I did that they noticed a small leak, so I was not allowed to drink / eat anything until that healed which took some time. Even after I was able to pass the third swallow test, I was only allowed to drink a small amount of liquids (about 1 tablespoon) until I was taken off the J-Tube weeks later.
If your husband is able to eat while on the J-Tube, that is a small bit of positive news. Because for the weeks I was unable to eat / drink were possibly the most difficult days of my life. I was losing weight rapidly, weak as hell from the surgery, it was summer time (June, July) and extremely hot and I couldn't drink anything, and every commerical on TV seemed to be about food. I hated Pizza Hut and T.G.I.F. for a long time. And whenever I went outside for some fresh air I hated anyone that was eating or drinking anything. hehehe.
I'm glad reading my story was helpful. Like I mentioned to Dwhite, my wife is the one that found this board and she visits here more than I do. She is the one that pointed out DWhite's post to me and urged me to speak up. But I'm a stereotypical guy in that I don't really speak much about my problems. That has to do with what I mentioned about "most" guys being raised to be self-sufficient and capable.
I hope he is able to cheer up because I was in his shoes not too long ago. Just a year ago I was 29, was 5ft. 9in. tall and 180lbs.... and then post surgery I went down to 114 at the lowest, I didn't have enough energy to walk longer than 3 minutes while getting tired, and I couldn't eat anything at all without having dumping pains.
Now, I'm still only 120lbs but my appetite is crazy, I can't eat as much as I used to in one sitting, but now I'm always eating. All day long. That might have to do with the way my stomach is now, or it might have to do with me hating not being able to eat / drink for those weeks and I'm just food crazy, I have no clue. I can also eat about 85% of the stuff I used to eat pre-surgery.
But I guess what I'm trying to say is that eventually it gets better. It just takes awhile. My wife told me that she read most people that go through a esophagectomy report that it takes them 1 ~ 2 years to get back to 80% of their normal energy levels depending on the individual.
Thank you for sharing your ec history with me. It is good talking to a "guy" since being a woman it is difficult to put myself in my husband's shoes.
You have really been through a lot and I agree with the others, you were illegally fired, and also from a moral point of view I think they could have worked with you better. Cancer complicates life, but the end result is what it is about, and you and my husband are survivors!
I figured out why my husband was so down, and it all makes sense now. He has pneumonia, right after going through his MIE surgery. His immune system is shot after chemo, radiation, and surgery. I really feel for him and I am having lots of patience and understanding. I am hoping he doesn't have to go back into the hospital again.
Please keep writing, we love hearing from you.
Linda0 -
Did not hear back from youdwhite0002 said:You and I should talk,
You and I should talk, sometime. I think it would do us both some good to hear each other's stories. I am married and have 3 children and teach vocal music full-time and work in church music, part-time. I, too, am used to be totally in control and 100%. If you look below, you will see I am a string been (LOL). Sounds like you are in the club!
Seriously, though, let's talk sometime...
-DW
Hey David,
I sent you an email a week or so ago but did not hear back. I was wondering if you and petals007 (sorry I don't know your name) could share your experience on pre-surgery treatment. What chemo treatment did you get? for how long? Did you get radiation and how often/how long? How did you handle all of these?
Tom has done 4 rounds of cisplatin and irinotecan (weekly IV) and now taking a 2-week break before doing another 5 weeks of the same chemo treatment + daily radiation. All in all, I think he has been handling it ok. The side effects have been quite minor, mostly feeling tired and having a bit of stomach discomfort. But he did develop blood clot in his leg that we caught early. He now needs to get blood thinners shots twice a day. Docs say they would switch him to pills after the surgery.
He was quite healthy before starting having problems, 6'4 and 175 lbs. He lost 25 pounds before he got his diagnosis (Stage 3 T3 N1 M0). When his swallowing got better after the first chemo, he started eating insanely unhealthy fattening stuff and gained about 8 lbs back. I am sort of scared that his diet consists of bacon, mac&cheese, potato mash, all sorts of sausages and other cholesterol bombs. But doctors say it's ok...
Last blood work showed some "increased chemical activity in liver" whatever that is. The oncologist said it has nothing to do with probability of mets. Looks like as if Tom had few too many drinks or something. But he had not had a sip of alcohol for months. This only makes me more concerned with the food choices.
By the way, did you have to get any chemo after the surgery? Did you get PET scan? I know they would do CT scan, but I am not happy with CT scan inability to catch minor residuals.
Sorry to bombard you with questions.
Olya0 -
@ Linda1120: Sure nolinda1120 said:Thank you
Thank you for sharing your ec history with me. It is good talking to a "guy" since being a woman it is difficult to put myself in my husband's shoes.
You have really been through a lot and I agree with the others, you were illegally fired, and also from a moral point of view I think they could have worked with you better. Cancer complicates life, but the end result is what it is about, and you and my husband are survivors!
I figured out why my husband was so down, and it all makes sense now. He has pneumonia, right after going through his MIE surgery. His immune system is shot after chemo, radiation, and surgery. I really feel for him and I am having lots of patience and understanding. I am hoping he doesn't have to go back into the hospital again.
Please keep writing, we love hearing from you.
Linda
@ Linda1120: Sure no problem, if you have any questions that I can be of help with, I'll try to do my best although I really don't feel like I know much in comparison to some of the other posters on here.
I agree about the firing. Even if the month ended and I was below the quota, I STILL felt it was wrong considering I was a top salesman there for five years, and because my immediate supervisor encouraged me to reduce my hours since he knew I was recovering from the surgery. But, that is in the past, and I try not to dwell on negativity anymore. I appreciate the time I spent there because I met a lot of people, and I'm looking forward to the next stage of my life.
I'm really sorry to hear that your husband has pneumonia. I have a healthy respect for that as I know it can take down people when they are healthy, and if your husband is fighting pneumonia after getting an esophagectomy done then all I can say he is one hell of a fighter. I don't know where he gets all of his energy to fight from but if he could loan me some that would be awesome, lol.
I'm not too sure what else to write about regarding myself, but I do have an interesting story of sorts.... it affected me anyway...
About the 10th day that I had gone back to work, I met a customer named Ayanna Dougherty. She wasn't 100% sure what kind of vehicle she was interested in, but after asking her a few questions about how she planned on using the vehicle, I suggested the Honda Civic.
We took a vehicle out for a test drive, and she mentioned that she indeed thought the vehicle would serve her needs. I then asked her if she would like to have her husband see the vehicle as well, because it's been my experience that most couples want to share making big decisions. When I asked the question, I didn't even know if she was married, I just assumed she was because she told me earlier she was looking for a car big enough for her and her daughter.
Well, Ayana told me that it wasn't necessary that her husband see the vehicle, and that he wouldn't mind. We went back to the dealership and began filling out the paperwork and it was about that time I asked her to please bear with me because I cannot move very fast since I just went through surgery. When I told her about the surgery itself and my fight against cancer, she was amazed. She then told me that her husband is named Anthony (which is also my name), and that he died of Leukemia and Lymphoma two years ago. He was 34. She gave me the address to his personal blog / website (http://howcancerhealedme.com/index.html) which I read.
It was really sad to read because of course the gentleman didn't make it, but it touched me just the same because of the timing that I met Ayana and of course her husband passed away fighting a disease that could have very well killed me. He was also just a few years older than me as well. So we shared quite a few similarities. Anthony wrote blogs and updates when he could, and his thoughts and feelings were very similar to mine while I was going through my treatments.
I took my meeting Ayana as a positive sign that I was meant to live, if at least for a little while longer. Because things could have easily turned out differently. My cancer was caught early by complete accident and had that not been the case then we might not have found it until later when it would have been too late.0 -
@ ArchTB: Hello, my name isArchTB said:Did not hear back from you
Hey David,
I sent you an email a week or so ago but did not hear back. I was wondering if you and petals007 (sorry I don't know your name) could share your experience on pre-surgery treatment. What chemo treatment did you get? for how long? Did you get radiation and how often/how long? How did you handle all of these?
Tom has done 4 rounds of cisplatin and irinotecan (weekly IV) and now taking a 2-week break before doing another 5 weeks of the same chemo treatment + daily radiation. All in all, I think he has been handling it ok. The side effects have been quite minor, mostly feeling tired and having a bit of stomach discomfort. But he did develop blood clot in his leg that we caught early. He now needs to get blood thinners shots twice a day. Docs say they would switch him to pills after the surgery.
He was quite healthy before starting having problems, 6'4 and 175 lbs. He lost 25 pounds before he got his diagnosis (Stage 3 T3 N1 M0). When his swallowing got better after the first chemo, he started eating insanely unhealthy fattening stuff and gained about 8 lbs back. I am sort of scared that his diet consists of bacon, mac&cheese, potato mash, all sorts of sausages and other cholesterol bombs. But doctors say it's ok...
Last blood work showed some "increased chemical activity in liver" whatever that is. The oncologist said it has nothing to do with probability of mets. Looks like as if Tom had few too many drinks or something. But he had not had a sip of alcohol for months. This only makes me more concerned with the food choices.
By the way, did you have to get any chemo after the surgery? Did you get PET scan? I know they would do CT scan, but I am not happy with CT scan inability to catch minor residuals.
Sorry to bombard you with questions.
Olya
@ ArchTB: Hello, my name is Anthony and my wife's name is Jacqueline and I'm using her account to post.
I'll try my best to answer your questions about pre-surgery treatment.
** What chemo treatment did you get?
I recieved five weeks of chemotherapy. I had a "port" installed on the right side of my chest, not too far underneath my collarbone. And through that I was given the drug Fluorouracil (or 5FU for short) during the week, Mondays through Friday. I had to carry around a pouch of sorts that slowly pushed the drug into my body through the port.... 24 hours a day.
I also had 3 infusions of Oxaliplatin. I had those every other week.... only on Mondays. For those sessions I had to go to the hospital and sit in their oncology ward to have the drug infused. That usually took about 3 hours or so if I remember correctly.
The radiation I had for four weeks... Mondays through Fridays.
** How did you handle all of these?
I didn't have much of a choice, hehe. I just suffered through it and told myself I could suffer now for a few short weeks and hopefully beat this thing or not endure the treatment and for sure die later. When I had the energy, I did anything I could to get my mind off the effects of the treatment. I walked as much as I could, read books, played video games, tried to keep up with the news. And when my wife was home I followed her like a lost puppy because it was nice listening to her talk about anything at all.
The 5FU wasn't bad at all. On the weeks where I just had to receive that, life was good. I didn't have any effects what-so-ever from that.
The Oxaliplatin on the other hand was no fun at all. On the day I took it, I didn't have any effects. But by late Tuesday or early Wednesday, it would start kicking my butt.
I got feelings of fatigue, nausea, vertigo, Neuropathy, loss of appetite, headaches, thrush, random flashes of pain through my body, and trouble keeping my food down when I did eat. The effects of the Oxaliplatin would last anywhere from 3 ~ 5 days and then slowly go away until the next infusion.
I ended up sleeping half the time when the symptoms were really bad and when I was awake I would try to walk around the house to stay active... or at least play video games if I feeling too bad to even do that. Video games helped me think about something else other than feeling like crap.
The radiation was not so bad for the first week and a half. By the middle of the second week though, I started feeling the effects of that as well. It literally felt like my esophagus and throat had been burned / singed and it made eating / swallowing really hard. If I burped or coughed that hurt like hell too.
By the middle of the third week and for all of the fourth week the burning was bad enough so that I really did not look forward to eating. I mostly had warm soups and similar foods because solids would hurt pretty bad going down, and anything cold would make my hands, mouth, and tongue go numb from the oxaliplatin. Sometimes I would eat spaghettie or creamed corn if I got tired of soup, but that's about it.
I think I lost about 10 ~ 15 lbs at the end of the five weeks.... but gained it all back in two weeks before I had my surgery. That sounds in line with your husband's weight loss considering he is 6'4'' and I'm about 5'9''.
I did not have chemo after the surgery. I was prepared for it as my oncologist said it might be a possibility, but fortunately I had both a CT and a PET scan done after the surgery and the doctors could not find any signs of remaining cancer.
So far I've had two check ups after my surgery, both CT and PET scans and they have all come back negative.
I'm not too sure what to say about your husband eating tons of fatty food. All I can say for sure is that if he has not had his surgery yet, and if the doctors are not worried about him eating fatty food and putting on weight..... then I wouldn't worry as well because no matter how much weight he puts on now he'll lose all of it and then some after the surgery..... at least if he reacts to it like I did and most other people.
DWhite seems to be the same height as your husband and in an above post he mentioned that he dropped as low as 137 lbs. I myself hovered between 175 ~ 180 when I was healthy and at my lowest after the surgery I was down to 114 lbs.
I would also say to let him go nuts and eat his favorite foods now because if he has the same issues I did after the surgery, it might be a month...or months until he is able to eat and drink again. That royally sucked for me and was worse than the actual treatment itself.
Everyone has different experiences from what I understand though, so I'm hoping that your husband has a better time of it than I did.0 -
Thanks!petals007 said:@ ArchTB: Hello, my name is
@ ArchTB: Hello, my name is Anthony and my wife's name is Jacqueline and I'm using her account to post.
I'll try my best to answer your questions about pre-surgery treatment.
** What chemo treatment did you get?
I recieved five weeks of chemotherapy. I had a "port" installed on the right side of my chest, not too far underneath my collarbone. And through that I was given the drug Fluorouracil (or 5FU for short) during the week, Mondays through Friday. I had to carry around a pouch of sorts that slowly pushed the drug into my body through the port.... 24 hours a day.
I also had 3 infusions of Oxaliplatin. I had those every other week.... only on Mondays. For those sessions I had to go to the hospital and sit in their oncology ward to have the drug infused. That usually took about 3 hours or so if I remember correctly.
The radiation I had for four weeks... Mondays through Fridays.
** How did you handle all of these?
I didn't have much of a choice, hehe. I just suffered through it and told myself I could suffer now for a few short weeks and hopefully beat this thing or not endure the treatment and for sure die later. When I had the energy, I did anything I could to get my mind off the effects of the treatment. I walked as much as I could, read books, played video games, tried to keep up with the news. And when my wife was home I followed her like a lost puppy because it was nice listening to her talk about anything at all.
The 5FU wasn't bad at all. On the weeks where I just had to receive that, life was good. I didn't have any effects what-so-ever from that.
The Oxaliplatin on the other hand was no fun at all. On the day I took it, I didn't have any effects. But by late Tuesday or early Wednesday, it would start kicking my butt.
I got feelings of fatigue, nausea, vertigo, Neuropathy, loss of appetite, headaches, thrush, random flashes of pain through my body, and trouble keeping my food down when I did eat. The effects of the Oxaliplatin would last anywhere from 3 ~ 5 days and then slowly go away until the next infusion.
I ended up sleeping half the time when the symptoms were really bad and when I was awake I would try to walk around the house to stay active... or at least play video games if I feeling too bad to even do that. Video games helped me think about something else other than feeling like crap.
The radiation was not so bad for the first week and a half. By the middle of the second week though, I started feeling the effects of that as well. It literally felt like my esophagus and throat had been burned / singed and it made eating / swallowing really hard. If I burped or coughed that hurt like hell too.
By the middle of the third week and for all of the fourth week the burning was bad enough so that I really did not look forward to eating. I mostly had warm soups and similar foods because solids would hurt pretty bad going down, and anything cold would make my hands, mouth, and tongue go numb from the oxaliplatin. Sometimes I would eat spaghettie or creamed corn if I got tired of soup, but that's about it.
I think I lost about 10 ~ 15 lbs at the end of the five weeks.... but gained it all back in two weeks before I had my surgery. That sounds in line with your husband's weight loss considering he is 6'4'' and I'm about 5'9''.
I did not have chemo after the surgery. I was prepared for it as my oncologist said it might be a possibility, but fortunately I had both a CT and a PET scan done after the surgery and the doctors could not find any signs of remaining cancer.
So far I've had two check ups after my surgery, both CT and PET scans and they have all come back negative.
I'm not too sure what to say about your husband eating tons of fatty food. All I can say for sure is that if he has not had his surgery yet, and if the doctors are not worried about him eating fatty food and putting on weight..... then I wouldn't worry as well because no matter how much weight he puts on now he'll lose all of it and then some after the surgery..... at least if he reacts to it like I did and most other people.
DWhite seems to be the same height as your husband and in an above post he mentioned that he dropped as low as 137 lbs. I myself hovered between 175 ~ 180 when I was healthy and at my lowest after the surgery I was down to 114 lbs.
I would also say to let him go nuts and eat his favorite foods now because if he has the same issues I did after the surgery, it might be a month...or months until he is able to eat and drink again. That royally sucked for me and was worse than the actual treatment itself.
Everyone has different experiences from what I understand though, so I'm hoping that your husband has a better time of it than I did.
Thank you Anthony! It is very helpful and encouraging to listen to other people's stories. Looks like a lot of reactions are similar. Including the video game obsession
Three wii games in 4 weeks! But I am glad that it keeps Tom's thoughts off his condition.
Please do stay on the board. I am sure I would have more questions as we go forward with the treatment. He will probably (hopefully!) have the surgery in the end of April. But for now we have to live through the radiation.
All the best to you! Pass my regards to your wife - I am sure she had to go through some emotional roller coaster as well.
Olya0 -
Thank youpetals007 said:@ Linda1120: Sure no
@ Linda1120: Sure no problem, if you have any questions that I can be of help with, I'll try to do my best although I really don't feel like I know much in comparison to some of the other posters on here.
I agree about the firing. Even if the month ended and I was below the quota, I STILL felt it was wrong considering I was a top salesman there for five years, and because my immediate supervisor encouraged me to reduce my hours since he knew I was recovering from the surgery. But, that is in the past, and I try not to dwell on negativity anymore. I appreciate the time I spent there because I met a lot of people, and I'm looking forward to the next stage of my life.
I'm really sorry to hear that your husband has pneumonia. I have a healthy respect for that as I know it can take down people when they are healthy, and if your husband is fighting pneumonia after getting an esophagectomy done then all I can say he is one hell of a fighter. I don't know where he gets all of his energy to fight from but if he could loan me some that would be awesome, lol.
I'm not too sure what else to write about regarding myself, but I do have an interesting story of sorts.... it affected me anyway...
About the 10th day that I had gone back to work, I met a customer named Ayanna Dougherty. She wasn't 100% sure what kind of vehicle she was interested in, but after asking her a few questions about how she planned on using the vehicle, I suggested the Honda Civic.
We took a vehicle out for a test drive, and she mentioned that she indeed thought the vehicle would serve her needs. I then asked her if she would like to have her husband see the vehicle as well, because it's been my experience that most couples want to share making big decisions. When I asked the question, I didn't even know if she was married, I just assumed she was because she told me earlier she was looking for a car big enough for her and her daughter.
Well, Ayana told me that it wasn't necessary that her husband see the vehicle, and that he wouldn't mind. We went back to the dealership and began filling out the paperwork and it was about that time I asked her to please bear with me because I cannot move very fast since I just went through surgery. When I told her about the surgery itself and my fight against cancer, she was amazed. She then told me that her husband is named Anthony (which is also my name), and that he died of Leukemia and Lymphoma two years ago. He was 34. She gave me the address to his personal blog / website (http://howcancerhealedme.com/index.html) which I read.
It was really sad to read because of course the gentleman didn't make it, but it touched me just the same because of the timing that I met Ayana and of course her husband passed away fighting a disease that could have very well killed me. He was also just a few years older than me as well. So we shared quite a few similarities. Anthony wrote blogs and updates when he could, and his thoughts and feelings were very similar to mine while I was going through my treatments.
I took my meeting Ayana as a positive sign that I was meant to live, if at least for a little while longer. Because things could have easily turned out differently. My cancer was caught early by complete accident and had that not been the case then we might not have found it until later when it would have been too late.
Hi Anthony, Yes, Jim is truly a fighter, that is for sure. He is very fatigued and if he isn't better by tomorrow they are going to put him in the hospital. I pray that the new anti-biotic is working. He has been coughing up more today and that is a good sign. Jim has often told me he has always been a fighter in life, but this is a different kind of fight! I think he is doing a great job of it! I tease him and tell him I love him more, and that got a smile and a I love you more out of him. There isn't much I can do but love him, massage his feet, drive him for hydration, take care of his feeding tube and give him his meds. He isn't eating anything, but is holding his weight being on the jtube. He is getting over 1600 calories a day, so I am very thankful for the feeding tube.
I enjoyed your story about Ayana and Anthony. I went to his website and read some of it and saved it to share with Jim. When Jim gets down I share stories about others who have not been as fortunate as him to have surgery.
Are you able to eat regular food now? Do you have to eat in small portions? I want to cook for Jim but with the pneumonia he has no appetite. Hopefully once that passes he will want regular food.
Linda0 -
This site is so wonderful. I
This site is so wonderful. I have learned so much here, especially from William and Paul, not to meaning to take away form anyone. It is great to hear from others around my age. I am 40 years old, T2N3M0 diagnosed Nov. 11. 2010. (Originally stage 4 T4N7M1)(This is a testimony in it'self with what God can do, my doctors still can not believe it) I started cisplatin, 5FU and radiation on Jan. 3 2011. I finished my final round of chemo today, and have 5 radiation treatments left. (Pre-surgery) I am scheduled for ESU and consultation with Dr. Reed at MUSC in Charleston SC on March 8. I have found that once I started Nexium the effects of radiation are not nearly as bad. The Chemo is totally different. I had all the side effects stated in previous post.
I will say this is a very scary time in life, especially when you have a wonderful wife, 3 great kids and use to being in total control. I will say, even though I am a pastor, this has brought me even closer to God.
Keep posting everyone, this is such a blessing to so many
chad0 -
Welcome Chadpreacherchad said:This site is so wonderful. I
This site is so wonderful. I have learned so much here, especially from William and Paul, not to meaning to take away form anyone. It is great to hear from others around my age. I am 40 years old, T2N3M0 diagnosed Nov. 11. 2010. (Originally stage 4 T4N7M1)(This is a testimony in it'self with what God can do, my doctors still can not believe it) I started cisplatin, 5FU and radiation on Jan. 3 2011. I finished my final round of chemo today, and have 5 radiation treatments left. (Pre-surgery) I am scheduled for ESU and consultation with Dr. Reed at MUSC in Charleston SC on March 8. I have found that once I started Nexium the effects of radiation are not nearly as bad. The Chemo is totally different. I had all the side effects stated in previous post.
I will say this is a very scary time in life, especially when you have a wonderful wife, 3 great kids and use to being in total control. I will say, even though I am a pastor, this has brought me even closer to God.
Keep posting everyone, this is such a blessing to so many
chad
Chad, even though my husband is 68, we older ones love reading and sharing with you younger people. God is truly in control, I've always known that, but after reading your post it is so great to see it in black and white. I am so thankful that your diagnosis is now T2N3MO! Is your surgery going to be a minimally invasive esophagectomy? My husband is currently recovering from his MIE January 5th. He had complications with his aortic valve and it was a very difficult time. Jim now has pneumonia and is very weak. We are so pleased that his weight has been maintained since surgery to now by the jtube feedings. He dropped 15lbs with the surgery, but I can get that back on him once he starts eating again.
I agree that the postings are such a blessing. I look forward to reading every post daily.
I am grateful that the Lord saved you from a stage 4 diagnosis, and you will be able to enjoy that great family.
Linda0
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