Any Under 40 Survivors?

ArchTB

Apurva32 said:

Survivor at 33!!!
I was diagnosed with stage II N0 M0, back in October 2009, had 8 rounds of Chemo (Irinotican & Cisplatin) and 28 cycles of Radiation at Memorial Sloan Hospital. Had the Ivor Lewis surgery on April 5th, 2010, and I have had 2 scans since and all NED. I have an endoscopy coming up soon, but honestly I feel and am ddoing great. I will be hitting the 1 Yr mark since my Surgery and even though the first 6 months were tough it gets better as time passes by. Its wonderful to read and hear about survivors that are young and what really re-enforced a lot of confidence in me was when I spoke to more and more long term survivors. Having come so far, I am almost busy with my routine life again now, though I try to eat healthy and avoid all the things that could make life miserable for people like us with some of the plumbing missing inside.

Wishing every one luck in their fight against the beast. I will be more than happy to discuss my expereince etc if any one would like to talk.

Why Ivor Lewis
Hi, glad to hear you are doing well and wishing you to stay disease-free! My husband is being treated at MSK as well. he is stage 3 (T3 N1 M0). Who were your oncologist and surgeon? How do you feel about them? Also, what was the reason for Ivor Lewis and not MIE?

Thanks,
Olya

dwhite0002

ArchTB said:

Why Ivor Lewis
Hi, glad to hear you are doing well and wishing you to stay disease-free! My husband is being treated at MSK as well. he is stage 3 (T3 N1 M0). Who were your oncologist and surgeon? How do you feel about them? Also, what was the reason for Ivor Lewis and not MIE?

Thanks,
Olya

Clarification
I was unclear in my explanation the other day about the type surgery I had in '06.

My tumor was unusually high in the esophagus, so I believe my only option was a traditional esophagectomy. The tumor was not near the stomach. The doctors do not believe it was caused by acid reflux or Barrett's.

-DW

Apurva32

ArchTB said:

Why Ivor Lewis
Hi, glad to hear you are doing well and wishing you to stay disease-free! My husband is being treated at MSK as well. he is stage 3 (T3 N1 M0). Who were your oncologist and surgeon? How do you feel about them? Also, what was the reason for Ivor Lewis and not MIE?

Thanks,
Olya

MSKCC
Hi Olya,

I am glad your husband is undergoing treatment at MSKCC, my team of specialist included Dr. David Ilson (Oncologist), Dr. Manjit Bains (Surgeon) and Dr. Goodman (Radiology Oncologist). the reason why I went with Ivor Lewis was because I had the utmost faith in Dr. Bains my surgeon. I did my research with regards to speaking with other patients etc, and came to the conclusion, that ultimately its the experience of the surgeon that makes a hell lot of difference of the outcome, and I have no complains. Dr. Bains is amazing, he is humble man of few words but with an enormous experience. He is very well regarded and respected not only at MSKCC but world over for his expertise with Thoracic surgery.

If you have or would like to talk/discuss anything feel free to email me, I would be more than happy to even talk to your husband, because that really helped me a lot (talking to other survivors).

Apurva

ArchTB

Apurva32 said:

MSKCC
Hi Olya,

I am glad your husband is undergoing treatment at MSKCC, my team of specialist included Dr. David Ilson (Oncologist), Dr. Manjit Bains (Surgeon) and Dr. Goodman (Radiology Oncologist). the reason why I went with Ivor Lewis was because I had the utmost faith in Dr. Bains my surgeon. I did my research with regards to speaking with other patients etc, and came to the conclusion, that ultimately its the experience of the surgeon that makes a hell lot of difference of the outcome, and I have no complains. Dr. Bains is amazing, he is humble man of few words but with an enormous experience. He is very well regarded and respected not only at MSKCC but world over for his expertise with Thoracic surgery.

If you have or would like to talk/discuss anything feel free to email me, I would be more than happy to even talk to your husband, because that really helped me a lot (talking to other survivors).

Apurva

Different surgeon
Hi Apurva,
Thank you for your response. I am glad you are feeling good and wishing you to stay this way. We have the same oncologist and radiologist, but the surgeon is Dr. Rizk. I did my research on him and he appears to be highly experienced. He also performs MIE type of surgery, so I hope Tom will be in good hands.
How did you do by the time of the surgery? How large was your tumor and how did you feel after chemo-radiation?
Thank you for offering to talk to my husband. He is very strange about this whole situation, as if it does not concern him at all. He never initiates any conversation with other patients, but listens to me if I tell him about something I've read or heard. Men are weird creatures

Apurva32

ArchTB said:

Different surgeon
Hi Apurva,
Thank you for your response. I am glad you are feeling good and wishing you to stay this way. We have the same oncologist and radiologist, but the surgeon is Dr. Rizk. I did my research on him and he appears to be highly experienced. He also performs MIE type of surgery, so I hope Tom will be in good hands.
How did you do by the time of the surgery? How large was your tumor and how did you feel after chemo-radiation?
Thank you for offering to talk to my husband. He is very strange about this whole situation, as if it does not concern him at all. He never initiates any conversation with other patients, but listens to me if I tell him about something I've read or heard. Men are weird creatures

Surgery!
At the time of my diagnosis I was like stage II with no lymph nodes involved, after the surgery they were able to remove 31 or 33 lymph nodes and even though there was a tumor at the original site, there were no cancer cells found at the primary tumor site, also all the nodes were clean.

I got operated on April 5th, 2010. The first six months after the surgery were rough to say the least, not trying to scare you but my situation was further complicated because I developed Fissure and the Fistulas etc...long story short I was back to work first week of June and all of my issues were resolved by October.

I feel and am doing great and I hands down have to say it’s due to the care, attention and experience of MSKCC.

Let me know if you have any more questions.

alexander22

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.

my fear
i went into hospital satarday for slight shortness of breath came out monday totaly shocked i had a small problem swallowing then it went away two days ago but now i get reflux feels like im bloted havent been sick yet but i no somthings up feels like always halve indigestion only last week ive felt like this they say i have a shadow on my x ray and endoscopy ct booked for friday im very worried as it galls me i can sycle 5 miles a day no probs

alexander22

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.

my fear
i went into hospital satarday for slight shortness of breath came out monday totaly shocked i had a small problem swallowing then it went away two days ago but now i get reflux feels like im bloted havent been sick yet but i no somthings up feels like always halve indigestion only last week ive felt like this they say i have a shadow on my x ray and endoscopy ct booked for friday im very worried as it galls me i can sycle 5 miles a day no probs

alexander22

Apurva32 said:

Survivor at 33!!!
I was diagnosed with stage II N0 M0, back in October 2009, had 8 rounds of Chemo (Irinotican & Cisplatin) and 28 cycles of Radiation at Memorial Sloan Hospital. Had the Ivor Lewis surgery on April 5th, 2010, and I have had 2 scans since and all NED. I have an endoscopy coming up soon, but honestly I feel and am ddoing great. I will be hitting the 1 Yr mark since my Surgery and even though the first 6 months were tough it gets better as time passes by. Its wonderful to read and hear about survivors that are young and what really re-enforced a lot of confidence in me was when I spoke to more and more long term survivors. Having come so far, I am almost busy with my routine life again now, though I try to eat healthy and avoid all the things that could make life miserable for people like us with some of the plumbing missing inside.

Wishing every one luck in their fight against the beast. I will be more than happy to discuss my expereince etc if any one would like to talk.

hi symtoms
can you tell me who you found out about your cancer did you feel unwell for a long time before going to the docs or can you take me threw your lead up to diagnosis cheers

ArchTB

alexander22 said:

hi symtoms
can you tell me who you found out about your cancer did you feel unwell for a long time before going to the docs or can you take me threw your lead up to diagnosis cheers

Anemia and trouble swallowing
Hi Alexander,

My husband got diagnosed on December 8, 2010.

It is hard to figure out when he first started to feel sick. He had a lot of problems at work in August-September, he was working long hours and was stressed and tired all the time. Around the same time he decided to eat more healthy, gave up meat altogether, switched to salads and lost quite a bit of weight. So, I do not know if I can contribute his tiredness and loss weight to cancer or not. But in October he started mentioning food getting stuck in his throat.

By mid-October, when he finally quit his stressful job, he still felt tired and weak all the time. We started to suspect anemia, and since he stopped eating meat it sort of made sense.

In early November he finally got an appointment with his physician, who confirmed anemia and suspected that there must be something more serious causing it than lack of meat. He sent Tom to a gastroenterologist (many thanks to him for this!), who then scheduled an endoscopy. The rest is a typical story most of the people here went through.

Tom was diagnosed with T3 N1 M0
He is 37 y.o. and had no history of acid reflex, drinking or smoking