Diagnosed May 9th-stage 2a (t3,n0,m0)
On May 9th, I went to the doctor's for some difficulty swallowing and had a scheduled endoscopy. Doc said I had cancer of the esophagus and I needed a catscan. Immediately went for the catscan and the same doc called me the next AM and said it was in my liver and lung. He said I needed to see an oncologist (no kidding...really?). The oncologist sent me for a petscan, which revealed that it HAD NOT spread to any other organs. He told me I was probably a surgical candidate, and that I should find a surgeon and have an endoscopic ultrasound at the facility where I planned to have the surgery.
I chose Fox Chase and the endoscopic Ultrasound showed no Lymph node involvement or invasion. I then had my cath and feeding tube (precautionary) put in as well as a "laproscopic staging" which confirmed everything. Doc said my abdomen was "pristine" and he didn't even take any lymph nodes. Surgeon sent me home for treatment with an eye toward MIE in September. (Prashant Shah is his name)
I am starting week 3 of chemo (taxol and carboplaten) and I have radiation five times a week. I'm still working about 6 hours a day (nothing too stressful), and I am managing to get some excercise in. I can still eat OK, but I need to really chew my food.
I am extremely sensitive to some of the sad stories on this site. Having said that, I am looking for some reassurance and kind words. I have a wonderful wife and two kids, and this experience is taking it's toll on all of us.
Comments
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Sorry you're here; Glad you found us
You will be hearing from many on this discussion board. We run the gamut from young to old; male and female; married, etc. My husband was Dx in December 2009, age 70, with Stage IIB 0n0m. He had pre-surgery chemo and radiation and then the invasive Ivor Lewis. He continued to work throughout although as he neared his last radiation sessions, it was hard on him. He was very fatigued. He had a jtube which was a godsend, and I could even operate it. Watch to be sure you don't dehydrate. I believe if we had understood symptoms of dehydration, he wouldn't have been fatigued. The oncology nurses caught it and scheduled hydration. Really perked him up. His surgeon did a fellowship at Fox Chase several years ago after completing his thoracic surgery residency. He is also trained in the DiVinci robot surgery. He's really great. However, for my husband for his reasons, he chose not to do MIE but the Ivor Lewis. It is much more risky and takes longer to recover. So, I am happy for you to get your treatment and MIE. I understand Fox Chase is a highly ranked cancer center and has something to do with the national cancer institute or whatever. There are adjustments after surgery but minor in comparison to no surgery. While it took my husband some seven months to feel like most of his ol' self, I understand the MIE gets you up and going very soon. Of encouragement, he has regained most of his strength; kept the weight off that he lost (he needed to lose anyway); has a good appetite and is maintaining weight; his vitals are better than mine; practices and is at his office everyday; is enjoying being alive, and humble to have the opportunity to have the surgery. There are several on here that are many years post op and still no evidence of disease. We also have friends/family we know of personally that have remained cancer free for over eight years. All the best to you. Please keep everyone here informed as we all are in this fight together and want to be of support wherever we can. Good luck!0 -
Hi jthomas,BMGky said:Sorry you're here; Glad you found us
You will be hearing from many on this discussion board. We run the gamut from young to old; male and female; married, etc. My husband was Dx in December 2009, age 70, with Stage IIB 0n0m. He had pre-surgery chemo and radiation and then the invasive Ivor Lewis. He continued to work throughout although as he neared his last radiation sessions, it was hard on him. He was very fatigued. He had a jtube which was a godsend, and I could even operate it. Watch to be sure you don't dehydrate. I believe if we had understood symptoms of dehydration, he wouldn't have been fatigued. The oncology nurses caught it and scheduled hydration. Really perked him up. His surgeon did a fellowship at Fox Chase several years ago after completing his thoracic surgery residency. He is also trained in the DiVinci robot surgery. He's really great. However, for my husband for his reasons, he chose not to do MIE but the Ivor Lewis. It is much more risky and takes longer to recover. So, I am happy for you to get your treatment and MIE. I understand Fox Chase is a highly ranked cancer center and has something to do with the national cancer institute or whatever. There are adjustments after surgery but minor in comparison to no surgery. While it took my husband some seven months to feel like most of his ol' self, I understand the MIE gets you up and going very soon. Of encouragement, he has regained most of his strength; kept the weight off that he lost (he needed to lose anyway); has a good appetite and is maintaining weight; his vitals are better than mine; practices and is at his office everyday; is enjoying being alive, and humble to have the opportunity to have the surgery. There are several on here that are many years post op and still no evidence of disease. We also have friends/family we know of personally that have remained cancer free for over eight years. All the best to you. Please keep everyone here informed as we all are in this fight together and want to be of support wherever we can. Good luck!
Your story and
Hi jthomas,
Your story and mine are very similar with the exception that I was diagnosed 10 months before you and I had one lymph node involved. The local node was spotted on the initial PET scan and then confirmed with an ultrasonic endoscope with fine needle aspiration. My final pre-treatment stage was T2N1M0. We have many things in common. I was 49 years old when diagnosed, have two children, a fantastic wife, always took care of my physical health and never dreamed I would get EC. Even our treatment plans are the same. I had six rounds of Taxol & Carboplaten (one a week for six weeks) and 28 rounds of radiation (every week day for 28 days). I find it interesting that you are also being treated with Taxol & Carboplaten. I see many that are treated with the time proven 5FU and of course asked my oncologist why my treatment was different than what most others received. According to my oncologist that some of the latest studies showed Taxol & Carboplaten may be the most effective chemo treatment to date for EC. I’m not sure if that’s true but it seemed to work well for me. My post treatment/pre-surgery PET was clean and my post surgery pathology on both the tumor site and the involved node came back clean.
OK, now for some encouragement. The MIE is no cake walk but it’s sure easier to recover from than the open approach. Also the fact that you are young and strong is very much in your favor. As for me I’m 7 months out and feeling pretty darn good. For example the wife and spent this past weekend in the mountains of NH doing some hiking and then had a great time enjoying some fine craft beers at a brew-fest.
If you would like to PM me we can set up a time to talk about what to expect. Or you can ask as many questions as you like on this board and all will be willing to help.
Best regards,
Joel0 -
THANK-YOU for the reply!BMGky said:Sorry you're here; Glad you found us
You will be hearing from many on this discussion board. We run the gamut from young to old; male and female; married, etc. My husband was Dx in December 2009, age 70, with Stage IIB 0n0m. He had pre-surgery chemo and radiation and then the invasive Ivor Lewis. He continued to work throughout although as he neared his last radiation sessions, it was hard on him. He was very fatigued. He had a jtube which was a godsend, and I could even operate it. Watch to be sure you don't dehydrate. I believe if we had understood symptoms of dehydration, he wouldn't have been fatigued. The oncology nurses caught it and scheduled hydration. Really perked him up. His surgeon did a fellowship at Fox Chase several years ago after completing his thoracic surgery residency. He is also trained in the DiVinci robot surgery. He's really great. However, for my husband for his reasons, he chose not to do MIE but the Ivor Lewis. It is much more risky and takes longer to recover. So, I am happy for you to get your treatment and MIE. I understand Fox Chase is a highly ranked cancer center and has something to do with the national cancer institute or whatever. There are adjustments after surgery but minor in comparison to no surgery. While it took my husband some seven months to feel like most of his ol' self, I understand the MIE gets you up and going very soon. Of encouragement, he has regained most of his strength; kept the weight off that he lost (he needed to lose anyway); has a good appetite and is maintaining weight; his vitals are better than mine; practices and is at his office everyday; is enjoying being alive, and humble to have the opportunity to have the surgery. There are several on here that are many years post op and still no evidence of disease. We also have friends/family we know of personally that have remained cancer free for over eight years. All the best to you. Please keep everyone here informed as we all are in this fight together and want to be of support wherever we can. Good luck!
Thanks for the prompt post. I can't tell you how much it means to me! I am hopeful that I tolerate the chemo and radiation well (which I seem to be doing) and I will deem the surgery a real privelige if I am fortunate enough to get there.0 -
sure sounds familiar!Joel C said:Hi jthomas,
Your story and
Hi jthomas,
Your story and mine are very similar with the exception that I was diagnosed 10 months before you and I had one lymph node involved. The local node was spotted on the initial PET scan and then confirmed with an ultrasonic endoscope with fine needle aspiration. My final pre-treatment stage was T2N1M0. We have many things in common. I was 49 years old when diagnosed, have two children, a fantastic wife, always took care of my physical health and never dreamed I would get EC. Even our treatment plans are the same. I had six rounds of Taxol & Carboplaten (one a week for six weeks) and 28 rounds of radiation (every week day for 28 days). I find it interesting that you are also being treated with Taxol & Carboplaten. I see many that are treated with the time proven 5FU and of course asked my oncologist why my treatment was different than what most others received. According to my oncologist that some of the latest studies showed Taxol & Carboplaten may be the most effective chemo treatment to date for EC. I’m not sure if that’s true but it seemed to work well for me. My post treatment/pre-surgery PET was clean and my post surgery pathology on both the tumor site and the involved node came back clean.
OK, now for some encouragement. The MIE is no cake walk but it’s sure easier to recover from than the open approach. Also the fact that you are young and strong is very much in your favor. As for me I’m 7 months out and feeling pretty darn good. For example the wife and spent this past weekend in the mountains of NH doing some hiking and then had a great time enjoying some fine craft beers at a brew-fest.
If you would like to PM me we can set up a time to talk about what to expect. Or you can ask as many questions as you like on this board and all will be willing to help.
Best regards,
Joel
Joel-
Thanks for the note. It sure does sound like we have alot in common. I'm going to PM you (as soon as I figure out how...)and take you up on the opportunity to talk. Having just some idea of what you have recently been through, I can imagine that this past weekend must have been positively wonderful for you and your wife! Here's hoping for many more!
Jeff Thomas0 -
I forgot to mentionjthomas233 said:THANK-YOU for the reply!
Thanks for the prompt post. I can't tell you how much it means to me! I am hopeful that I tolerate the chemo and radiation well (which I seem to be doing) and I will deem the surgery a real privelige if I am fortunate enough to get there.
Don't read the statistics!!! They have not kept pace with advancements. They do not separate other contributing factors that may have led to poor survival. The best statistic is this site and similar ones (I'm not familiar with a lot of them) that tell you how well they are doing. This site doesn't sugar-coat. We get emotional. But we tell it like it is and are pulling for every single discussion board member to keep on being survivors. Every time I read any of the online medical sites, I got a chill clear to my heart. Then, I would talk to friends who knew survivors, found this site and found more survivors, and would recover my hope. I have never gone back to those "old news" sites again. Just wanted to mention.....0 -
We are right with youjthomas233 said:THANK-YOU for the reply!
Thanks for the prompt post. I can't tell you how much it means to me! I am hopeful that I tolerate the chemo and radiation well (which I seem to be doing) and I will deem the surgery a real privelige if I am fortunate enough to get there.
I just joined here a couple of days ago and we are about where you are, only a few weeks behind. Mo was just staged yesterday at 2B (T3 N1 M0) and the T may drop to a 2 after the EUS (i could wish). We have our first consult with oncologist and radiologist tomorrow.
Mo is also a healthy, active (in shape) person and only 54. We have so very much in common. Yes, this is stressful on everyone and it as taken priority over all else but we find strength in the fact that today is good and we are in this together no matter what tomorrow brings.
I look forward to getting to know you. Seems we will be going through much of the same, at the same time.0 -
Hi, You're blessed to have
Hi, You're blessed to have caught it at this early stage. I was T3No1M0 when dxed in nov. 2007. I didn't have radiation and my chemo was different than yours. After chemo I had the ivor lewis surgery. From what I've learned it is a lot harder recovering. I did have some side effects, but Mine was a picnic compared to some others.Every one is different and respond differently, but someone on here will probably have exprienced anything you might go through. I was 64, overweight, diabetic and high blood pressure.. Since my surgery in May 2008, I lost 99 pds (gained 10 back, and still skinny),But I'm healthier than I was before cancer. Because of the weight loss, I'm no longer diabetic, nor do I have high blood pressure.
The journey was a very difficult one. There is no way it could ever be sugar coated,. After surgery i had to learn a new way of eating and I do still have some side effects. I thank God for the knowledge of the doctors,that have gotten me to where I am today. The treatment is well worth it. Life is good!
We have had some sadness with the loss of several friends on here recently, but there is still a lot of positive things happening. Keep us posted,
My prayers will be with you, Sandra0 -
Tough but promising
Hi Jthomas,
Sorry you ended up on this site, but luckily for you it is a good place to get useful information, support and encouragement.
It is a scary diagnosis and all of us here went through this initial shock. It is particularly devastating when young and otherwise healthy people get the shocking news. But this also puts you at an advantage:
- you have been diagnosed at an early stage, when the disease is still very localized. And you will be able to have a surgery!
- you are relatively young, healthy and in good physical shape. This will be definitely helpful in dealing with chemotherapy and radiation, and would reduce the risk of complications going forward.
You are also blessed to be able to eat. When my husband started chemo, after just a few treatment he noticed a substantial improvement in his ability to swallow. I am not sure if this would be the case in your situation since you are also getting radiation, which creates scarring that usually adds to the swallowing difficulties.
I am not going to lie to you, this is going to be hard and bumpy, but you are on the right track. Focus on getting calories (if you are health fanatic, like my husband, go for shakes, bananas, avocado, whole wheat bread with organic peanut butter - these are all good fats and would help you to at least maintain weight). Also, do not ignore how you feel and write it off as side effects of the treatment. Talk to your doctors, even if it is something minor and silly. If you feel any discomfort in your legs - tell your doctor, if you have any reason for concern, insist on ultrasound check: blood clods are common with chemo. Don't be shy to ask friends and family for help. If it is getting hard to keep working while dealing with the treatment, apply for disability leave. Seriously, the work will be there when you get back!
There are a lot of knowledgeable people on this site who will be able to offer advice and share experience. Good luck to you!
Olya0 -
As strange as this sounds you are very lucky
After hearing the things from your doctors you have heard in the last few weeks I am sure the last thing you would think is that you are “lucky”. But the reality is; that compared to many people diagnosed with EC; you are.
Why?
You are young and in excellent health, the “typical” EC patient is between 65 and 75 with a least one other major health issue.
It appears that you were diagnosed at an early stage,and are therefore an excellent candidate for surgery. Because the symptoms of EC are so subtle many patents are not diagnosed until the disease has spread to other organs.
You are getting treatment at a facility that is recognized for leadership in cancer diagnosis and treatment.
In short; the grim statistics you may have been reading probably don’t apply to you.
I know there have been some sad stories on this site lately. It has been a difficult month for all of us as we have had to say goodbye to some wonderful friends and we are praying for some others who are fighting a grim battle. But there are also many “success” stories here. People who are enjoying life after making the adjustments required after treatment and surgery.
I will not suggest to you that chemotherapy, and surgery are easy or without risks, but your are fortunate to be in a position to make the journey. I remember when I met with my oncologist after my EUS that showed I was Stage IIB he said “you are very lucky, you are a candidate for surgery”. “Once you have that behind you, you can go on and enjoy your life.”
I thought, is this guy nuts!!! I have cancer!!!!
It has been a year and a half since my surgery. I am doing well and enjoying my life again. Of course there have been some adjustments. I eat smaller meals and eat about six times a day. Sugar is not a part of my diet. I sleep in an adjustable bed in an elevated position. But I have adjusted to the changes and it is now my new normal.
There are lots of things I could tell you about changes you will make as you complete your treatment and surgery. But better that we cover those things like diet changes and exercise changes when you are ready and the information is valuable. When you are ready we will be here to say “yeah I had that….this is what you do.”
So once again, I know you may think I sound nuts….but you really are lucky.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
Good Luck today!Peg59 said:We are right with you
I just joined here a couple of days ago and we are about where you are, only a few weeks behind. Mo was just staged yesterday at 2B (T3 N1 M0) and the T may drop to a 2 after the EUS (i could wish). We have our first consult with oncologist and radiologist tomorrow.
Mo is also a healthy, active (in shape) person and only 54. We have so very much in common. Yes, this is stressful on everyone and it as taken priority over all else but we find strength in the fact that today is good and we are in this together no matter what tomorrow brings.
I look forward to getting to know you. Seems we will be going through much of the same, at the same time.
Peg-
First off, I hope everything goes well at your appointments today, and you get the T 2 (or lower!) from the EUS!
I have chemo and radiation today and while it is no fun, it is certainly something I can handle so far. I'm sure Mo will get through it as well. I have been a member of this site for a whopping 32 HOURS, and have already found the messages to be both inspirational and informative. I'm more hopeful than I have ever been since my diagnosis.
I'll be keeping a good though for you guys all day!
Jeff0 -
WELCOME
Sorry to hear about your diagnosis. I am 58 y/o male staged at T3N0M0 on 04/07/11. I have 4 more radiation treatments and then wait for another PET scan prior to surgery......asumming I'll still be a candidate. I had Cisplatin and Xeloda (a pill form of 5 FU) for my chemo treatments. Managed pretty well. Fatigue started showing up in week two to present but I've still been able to work, albeit at a few less hours a week. Some nausea but the meds they gave me kept that pretty much under control. I was having difficulty swallowing and was pretty much on a liquid diet for weeks 2-4 but the swallowing has improved in the past week.
Everyone varies on their side effects but my experience hasn't been that tough. Nothing is appetizing to me yet......don't know if it's a side effect that may improve after the radiation is done or not. I just have to keep pounding down the protien shakes, milkshakes and I eat a lot of yougurt and ice cream and candy.....anything to try and keep my weight up (calorie count). I've gone from about 205 to 180 since April.....about 20-25 of that needed to go anyway.
Lots of good info on this site. Good luck and I'll be praying for you
Michael Daniels
Brandon, FL0 -
I know what you mean!BMGky said:I forgot to mention
Don't read the statistics!!! They have not kept pace with advancements. They do not separate other contributing factors that may have led to poor survival. The best statistic is this site and similar ones (I'm not familiar with a lot of them) that tell you how well they are doing. This site doesn't sugar-coat. We get emotional. But we tell it like it is and are pulling for every single discussion board member to keep on being survivors. Every time I read any of the online medical sites, I got a chill clear to my heart. Then, I would talk to friends who knew survivors, found this site and found more survivors, and would recover my hope. I have never gone back to those "old news" sites again. Just wanted to mention.....
The statistic sites are chilling indeed. Fortunately, I know a gal right here in my hometown who is a 5 year ec survivor. She was a T3,n0,m0 and she had trouble with the chemo and rad, so she went to surgery pretty early. She had a trans-hiatal esophajectomy and she has been NED ever since. She looks great and she has some limitations like everyone else, but she certainly gives a guy cause for hope. Your story does as well!
Jeff0 -
Hi Jeff,
I wanted to reach
Hi Jeff,
I wanted to reach out for two reasons, first to say I am sorry about your diagnosis, and my thoughts and prayers go out to you and your family. The second is that my husband diagnosis is very similar and we are practically neighbors (Philly area). My husband whose name is also Jeff was diagnosed on May 24th with stage 2b (T2N1M0), he is 48 and is in very good health outside of the EC. He did suffer for years from acid reflux, but no one ever mentioned how serious that could end up being. We are from the suburbs south of Philadelphia, we met with doctors from both Fox Chase and PENN. We decided to go with PENN because it is more convenient for us to get to everyday for treatment and at the end of the day both are NCI designated. Jeff has just finished his second week of radiation and chemo, he is on continuous 5fu and oxylaplatin. He did not get the feeding tube but does have the porto cath. I understand that Fox Chase has a support group, wondering if you and your wife have checked that out.
Again just wanted to reach out and let you know there is someone else fight the good fight just like you, with the small number of EC cases diagnosed each year it is easy to feel like you are all alone in this. I wish you the best with your treatment and future surgery! We have a consult with the cheif of thoracic surgery at Hopkins, I can send you the contact info for him if you would like it.
Best,
Niki0 -
Thanks for the note!NikiMo said:Hi Jeff,
I wanted to reach
Hi Jeff,
I wanted to reach out for two reasons, first to say I am sorry about your diagnosis, and my thoughts and prayers go out to you and your family. The second is that my husband diagnosis is very similar and we are practically neighbors (Philly area). My husband whose name is also Jeff was diagnosed on May 24th with stage 2b (T2N1M0), he is 48 and is in very good health outside of the EC. He did suffer for years from acid reflux, but no one ever mentioned how serious that could end up being. We are from the suburbs south of Philadelphia, we met with doctors from both Fox Chase and PENN. We decided to go with PENN because it is more convenient for us to get to everyday for treatment and at the end of the day both are NCI designated. Jeff has just finished his second week of radiation and chemo, he is on continuous 5fu and oxylaplatin. He did not get the feeding tube but does have the porto cath. I understand that Fox Chase has a support group, wondering if you and your wife have checked that out.
Again just wanted to reach out and let you know there is someone else fight the good fight just like you, with the small number of EC cases diagnosed each year it is easy to feel like you are all alone in this. I wish you the best with your treatment and future surgery! We have a consult with the cheif of thoracic surgery at Hopkins, I can send you the contact info for him if you would like it.
Best,
Niki
Niki-
Thanks for introducing yourselves.
I finished up week three of chemo this week, (two more to go...). I have had 13 out 0f 24 scheduled radiation treatments. The fatigue is starting to be more apparent. I'm eating all right and I seem to have less trouble swallowing. I was told to keep my weight up, and I have actually gained 6 pounds over the past three weeks by forcing foods I don't normally eat.
I have not gotten involved in the Fox Chase support group because they meet monthly and the last one happened to be on one of my chemo days. It's a two hour drive and I wasn't sure it would be a good idea.
I would also appreciate the contact info for the guy at Penn if you wouldn't mind.
This site is kind of a mixed blessing for me. There are wonderful survival stories mixed in with tragic, sad stories. Oftentimes, it seems they offset each other. Sometimes, I log off feeling worse than when I logged in...
I have a friend in town where I live who was t3,n0,m0 back in 2005. She had trouble with chemo and rad, and went to surgery early. She has been cancer free for 5 years, and she looks fabulous. I hang on to stories like that.
Tell Jeff I'm pulling for him and please keep me posted!
Jeff0 -
I know the feeling!jthomas233 said:Thanks for the note!
Niki-
Thanks for introducing yourselves.
I finished up week three of chemo this week, (two more to go...). I have had 13 out 0f 24 scheduled radiation treatments. The fatigue is starting to be more apparent. I'm eating all right and I seem to have less trouble swallowing. I was told to keep my weight up, and I have actually gained 6 pounds over the past three weeks by forcing foods I don't normally eat.
I have not gotten involved in the Fox Chase support group because they meet monthly and the last one happened to be on one of my chemo days. It's a two hour drive and I wasn't sure it would be a good idea.
I would also appreciate the contact info for the guy at Penn if you wouldn't mind.
This site is kind of a mixed blessing for me. There are wonderful survival stories mixed in with tragic, sad stories. Oftentimes, it seems they offset each other. Sometimes, I log off feeling worse than when I logged in...
I have a friend in town where I live who was t3,n0,m0 back in 2005. She had trouble with chemo and rad, and went to surgery early. She has been cancer free for 5 years, and she looks fabulous. I hang on to stories like that.
Tell Jeff I'm pulling for him and please keep me posted!
Jeff
Hey Jeff,
I hear you about logging off of the site feeling worse than when you logged on! It is getting better for me though, I think something snapped in my brain recently and I have decided that cancer doesn't get to rule how I feel every minute of my life. I think we all need to hold onto hope. One: you and Jeff are young Two: Both of you are healthy and Three: Your cancer was caught at a fairly early stage!! I am a little worried about Jeff having lymp node involvement (but they didn't light up in the PET) so they are 'suspicious'. It is great that you have met a survivor in person, I wish I could meet someone that has hit the 5 year mark. There are many things that could go wrong....but we need just a FEW things to go right!!! Please choose HOPE, cancer shouldn't get to rule you, you rule it!!
Ok let me step off of my soapbox..haha. Here is the info I have for you:
Med Onc at PENN is Dr. Weijing Sun
Rad Onc at PENN is Dr. Metz
Don't really think you need these folks as you already have your team at Fox...is it Dr. Burtness?
The people I think you might want to speak with are the surgeons (PENN actually uses a team approach you would have two surgeons in the room)
Dr. Williams is the gastric surgeon and Dr. Kucharczuk is the thoracic surgeon.
Call the main number 1-800-789-PENN (7366) but tell them you have EC and want to speak with Dr. Kucharczuk's office.
We are getting a second opinion with Dr. Stephen Yang at John Hopkins. He is the Chief of Thoracic surgery there and I have been told he does about 2 surgeries a week...which is impressive and what you need when you are having someone remove your esophagus!!
The number is 410-933-1233 ask for Dr Yangs office. You might want to call this guy soon...it took us awhile to get an appointment.
You probably know the drill...be prepared to fax copies of your reports and they will also request copies of the cds with your EUS, CT, and PET scans, as well as your blood work results.
Hope you are enjoying the long weekend
Niki0 -
Delayed replyhopper52 said:WELCOME
Sorry to hear about your diagnosis. I am 58 y/o male staged at T3N0M0 on 04/07/11. I have 4 more radiation treatments and then wait for another PET scan prior to surgery......asumming I'll still be a candidate. I had Cisplatin and Xeloda (a pill form of 5 FU) for my chemo treatments. Managed pretty well. Fatigue started showing up in week two to present but I've still been able to work, albeit at a few less hours a week. Some nausea but the meds they gave me kept that pretty much under control. I was having difficulty swallowing and was pretty much on a liquid diet for weeks 2-4 but the swallowing has improved in the past week.
Everyone varies on their side effects but my experience hasn't been that tough. Nothing is appetizing to me yet......don't know if it's a side effect that may improve after the radiation is done or not. I just have to keep pounding down the protien shakes, milkshakes and I eat a lot of yougurt and ice cream and candy.....anything to try and keep my weight up (calorie count). I've gone from about 205 to 180 since April.....about 20-25 of that needed to go anyway.
Lots of good info on this site. Good luck and I'll be praying for you
Michael Daniels
Brandon, FL
Mike-
Thanks for the note. I actually thought I replied to you already, but maybe I screwed it up. I'm glad to hear your treatments are going well and that you are able to eat better. I have been eating ok, but I'm getting a burning sensation which, I assume, is from the radiation. Today is actually the first day I really feel it. I have had 13 of 24 scheduled rad and 3 of 5 sched chemos. I was about 211 when I was diagnosed...went down to 199 from pure stress...back up to 206 once the surgeon said I had to keep my weight up...haven't had to use my j-tube yet, but I won't hesitate if my weight falls off...
BTW, I had that problem where nothing was appetizing for me and I think it had something to do with an an tidepressant they prescribed. I took it for three days and everything I ate tasted salty. Stopped it and food looks better (not great). You aren't chewing pills to get them down, are you? My Onc said that will screw up your taste buds...
Good Luck and stay in touch!
Jeff Thomas0 -
Docs at PennNikiMo said:I know the feeling!
Hey Jeff,
I hear you about logging off of the site feeling worse than when you logged on! It is getting better for me though, I think something snapped in my brain recently and I have decided that cancer doesn't get to rule how I feel every minute of my life. I think we all need to hold onto hope. One: you and Jeff are young Two: Both of you are healthy and Three: Your cancer was caught at a fairly early stage!! I am a little worried about Jeff having lymp node involvement (but they didn't light up in the PET) so they are 'suspicious'. It is great that you have met a survivor in person, I wish I could meet someone that has hit the 5 year mark. There are many things that could go wrong....but we need just a FEW things to go right!!! Please choose HOPE, cancer shouldn't get to rule you, you rule it!!
Ok let me step off of my soapbox..haha. Here is the info I have for you:
Med Onc at PENN is Dr. Weijing Sun
Rad Onc at PENN is Dr. Metz
Don't really think you need these folks as you already have your team at Fox...is it Dr. Burtness?
The people I think you might want to speak with are the surgeons (PENN actually uses a team approach you would have two surgeons in the room)
Dr. Williams is the gastric surgeon and Dr. Kucharczuk is the thoracic surgeon.
Call the main number 1-800-789-PENN (7366) but tell them you have EC and want to speak with Dr. Kucharczuk's office.
We are getting a second opinion with Dr. Stephen Yang at John Hopkins. He is the Chief of Thoracic surgery there and I have been told he does about 2 surgeries a week...which is impressive and what you need when you are having someone remove your esophagus!!
The number is 410-933-1233 ask for Dr Yangs office. You might want to call this guy soon...it took us awhile to get an appointment.
You probably know the drill...be prepared to fax copies of your reports and they will also request copies of the cds with your EUS, CT, and PET scans, as well as your blood work results.
Hope you are enjoying the long weekend
Niki
Hi Niki,
We checked out the docs at Penn as well as Fox Chase and Jefferson. Dr. Kucharczuk does NOT do the MIE. He only does the open surgery. You might want to find someone close to you that can do the MIE. From what I understand, the open surgery has a lot more risk of complications and a much longer recovery time.
We are going to be using Dr. Walter Scott at Fox Chase. We expect my husband's surgery to take place in mid August. I understand that Dr. Ernest Rosato at Jefferson also does the MIE but only rejoins in the neck area. But EC is not his primary surgery area.
Good luck.0 -
Good to know!!Laura23 said:Docs at Penn
Hi Niki,
We checked out the docs at Penn as well as Fox Chase and Jefferson. Dr. Kucharczuk does NOT do the MIE. He only does the open surgery. You might want to find someone close to you that can do the MIE. From what I understand, the open surgery has a lot more risk of complications and a much longer recovery time.
We are going to be using Dr. Walter Scott at Fox Chase. We expect my husband's surgery to take place in mid August. I understand that Dr. Ernest Rosato at Jefferson also does the MIE but only rejoins in the neck area. But EC is not his primary surgery area.
Good luck.
Hi Laura,
When we met with the PENN surgeons they said Jeff couldn't have the MIE because of his previous surgery, I didn't think to ask if they perform the MIE on anyone. We did meet with Dr. Scott at Foxchase and he said Jeff could have the MIE but we chose to go with PENN for the chemo and radiation. I have already told the med onc and rad onc at PENN that we are looking around for another opinion on the surgery. I feel very confident with our team, but we probably will go elsewhere for the surgery.
Are you Jeff's wife or a caregiver to another patient in the Philly area? I have been searching boards for about a month now and hadn't found anyone in the Philly area, just curious.
Best of luck to you as well!!
Niki0 -
Sorry I didn't reply soonerpaul61 said:As strange as this sounds you are very lucky
After hearing the things from your doctors you have heard in the last few weeks I am sure the last thing you would think is that you are “lucky”. But the reality is; that compared to many people diagnosed with EC; you are.
Why?
You are young and in excellent health, the “typical” EC patient is between 65 and 75 with a least one other major health issue.
It appears that you were diagnosed at an early stage,and are therefore an excellent candidate for surgery. Because the symptoms of EC are so subtle many patents are not diagnosed until the disease has spread to other organs.
You are getting treatment at a facility that is recognized for leadership in cancer diagnosis and treatment.
In short; the grim statistics you may have been reading probably don’t apply to you.
I know there have been some sad stories on this site lately. It has been a difficult month for all of us as we have had to say goodbye to some wonderful friends and we are praying for some others who are fighting a grim battle. But there are also many “success” stories here. People who are enjoying life after making the adjustments required after treatment and surgery.
I will not suggest to you that chemotherapy, and surgery are easy or without risks, but your are fortunate to be in a position to make the journey. I remember when I met with my oncologist after my EUS that showed I was Stage IIB he said “you are very lucky, you are a candidate for surgery”. “Once you have that behind you, you can go on and enjoy your life.”
I thought, is this guy nuts!!! I have cancer!!!!
It has been a year and a half since my surgery. I am doing well and enjoying my life again. Of course there have been some adjustments. I eat smaller meals and eat about six times a day. Sugar is not a part of my diet. I sleep in an adjustable bed in an elevated position. But I have adjusted to the changes and it is now my new normal.
There are lots of things I could tell you about changes you will make as you complete your treatment and surgery. But better that we cover those things like diet changes and exercise changes when you are ready and the information is valuable. When you are ready we will be here to say “yeah I had that….this is what you do.”
So once again, I know you may think I sound nuts….but you really are lucky.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!
Paul-
Thank you for the words of encouragement! I could swear your post was one of the first I replied to, but I don't see it anywhere here or in the email section. I can't tell you how much the words of encouragement mean to me. You mentioned in your note that you would help me with questions as the arose. I have one..
I have finished 13 out of 24 radiation treatments and yesterday I have what can only be described as a "slight" burning in my esophagus that extends down the whole way to where I imagine my tumor to be. Ironically, the food seems to be passing the tumor site with less difficulty, so I am hoping that is a good sign. the pain is not there today, and I don't have another radiation treatment until Tuesday because of the holiday.
With 11 radiation treatments to go, I can imagine that this burning will get worse. Did they give you anything do drink to "numb the site" during eating? I have been maintaining my weight quite well, but, like you, I can't stand the sweet, high calorie drinks (though I will drink them all day if I have to...). I can still eat things like tuna sandwiches and meat/potatoe/vegetable dinners as long as I chew them well and use liquids in very limited quantities while I am eating.
Did you experience any improvement in eating after you finished your rad/chemo? If so, how long did it take?
Thanks for any advice you can give me and I hope you are enjoying your weekend!
Jeff Thomas
PS...I heard from someone else on this site that you play alot of golf...is that true???0 -
Yes I am a avid although not "good" golferjthomas233 said:Sorry I didn't reply sooner
Paul-
Thank you for the words of encouragement! I could swear your post was one of the first I replied to, but I don't see it anywhere here or in the email section. I can't tell you how much the words of encouragement mean to me. You mentioned in your note that you would help me with questions as the arose. I have one..
I have finished 13 out of 24 radiation treatments and yesterday I have what can only be described as a "slight" burning in my esophagus that extends down the whole way to where I imagine my tumor to be. Ironically, the food seems to be passing the tumor site with less difficulty, so I am hoping that is a good sign. the pain is not there today, and I don't have another radiation treatment until Tuesday because of the holiday.
With 11 radiation treatments to go, I can imagine that this burning will get worse. Did they give you anything do drink to "numb the site" during eating? I have been maintaining my weight quite well, but, like you, I can't stand the sweet, high calorie drinks (though I will drink them all day if I have to...). I can still eat things like tuna sandwiches and meat/potatoe/vegetable dinners as long as I chew them well and use liquids in very limited quantities while I am eating.
Did you experience any improvement in eating after you finished your rad/chemo? If so, how long did it take?
Thanks for any advice you can give me and I hope you are enjoying your weekend!
Jeff Thomas
PS...I heard from someone else on this site that you play alot of golf...is that true???
Jeff,
Yes I am a frequent golfer. I love to play; although I am by no means a "good" golfer. But I enjoy it and since I am retired I get to play several times a week. When I was recovering from surgery and going through chemotherapy I used to wonder if I would ever be able to play again. But through the grace of God here I am "stinking up the golf course again".
I did not have radiation therapy and I had my chemotherapy after my surgery. They originally thought I was Stage 1 so I went straight to surgery. The post surgery pathology showed cells in one of the lymph nodes removed so I was re-staged as 2B and had adjuvant chemotherapy.
I have however read a number of posts on our board that dealt with post radiation burning issues. Many folks here have had "Magic Mouthwash" prescribed (it is a mixture of lidocaine and Mylanta http://www.drotterholt.com/magicmouthwash.html ) other folks have used more traditional pain medications. I would suggest you discuss with your oncologist next time you see him.
Most people report an improvement in their ability to swallow after a few cycles of treatment as the tumor that is causing the obstruction shrinks. And of course post surgery things get remarkably better.
Most people report the burning sensation subsides several weeks after radiation therapy ends and your oncologist should be able to help you with the side effects during the treatment.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED
Life may not be the party we hoped for, but while we are here we might as well dance!0
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