Diagnosed May 9th-stage 2a (t3,n0,m0)

birdiequeen

better within months
This experience does take a toll. But, you are not alone. We too found hope in meeting a 10 year survivor who had the same surgeon. When word of the cancer got out at my husband’s office one of his co-workers shared her husband’s story with him. It was the first long term survivor we had heard of. This site has provided the other survivors. We are very grateful to the survivors to take the time to encourage others. I’m sure it would be much easier to just move on and put this behind you. I like to think that is why we do not hear of many more survivor stories. Tom, my husband was diagnosed T1b and went to surgery within a month, no pre or post chemo or radiation. He is 9 months post diagnose and feeling good. The whole family is starting to breathe again. So hang in there it will get better!

jthomas233

birdiequeen said:

better within months
This experience does take a toll. But, you are not alone. We too found hope in meeting a 10 year survivor who had the same surgeon. When word of the cancer got out at my husband’s office one of his co-workers shared her husband’s story with him. It was the first long term survivor we had heard of. This site has provided the other survivors. We are very grateful to the survivors to take the time to encourage others. I’m sure it would be much easier to just move on and put this behind you. I like to think that is why we do not hear of many more survivor stories. Tom, my husband was diagnosed T1b and went to surgery within a month, no pre or post chemo or radiation. He is 9 months post diagnose and feeling good. The whole family is starting to breathe again. So hang in there it will get better!

Thank You
Birdiequeen-

Thank you for the kind words! I appreciate anything positive at this point and I am glad that things are working out so well for you! I am hoping that there is more good news out there than this (and other) sites would lead us to believe.

I met another guy who was a 2B and is 4 years removed from chemo/rad/surgery...back at work and on his feet all day. I know for a fact that he wants to "put the whole thing behind him" as well. he would never post on a site like this and maybe there ARE more out there..

Thanks for the post and good luck with your progress!

Jeff

TerryV

jthomas233 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,

I'm brand spanking new here. My 48 year old husband was diagnosed on 05/19/2011 with a tumor in the lower esophagus - we've since learned Stage 3 with some lymph node involvement. I'm sorry but I don't know the T, N, or other info...

Anyway, by chance, my husband has found that icing the radiation target site about an hour before treatment helps. He was icing the J-tube site before one of his radiation treatments and realized that night that he didn't have the familiar "glow" or burn that he normally has following radiation.

I hope this helps you! You're in our thoughts. Best wishes to you and your family!

Unknown

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.

This comment has been removed by the Moderator

Laura23

NikiMo said:

Good to know!!
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!!

Niki

Philly area
Hi Niki,

I am the caregiver to my husband Luis. We live northwest of Philly in upper Montgomery county. I have been reading on this site for a few weeks but only recently started posting. My husband was diagnosed on April 11, 2011 with stage 3 T3N1M0. It is a pretty steep learning curve. He has received 5 treatments of chemo - carboplatin and paclitaxel. He has 4 radiation treatments left for a total of 28. This past week has been the most difficult in terms of eating and tiredness. And of course, he is a stubborn man who refuses to take his pain meds as often as he should.

Feel free to private message me if you want to talk more. I don't have answers, just commiseration.

Laura

Peg59

Laura23 said:

Philly area
Hi Niki,

I am the caregiver to my husband Luis. We live northwest of Philly in upper Montgomery county. I have been reading on this site for a few weeks but only recently started posting. My husband was diagnosed on April 11, 2011 with stage 3 T3N1M0. It is a pretty steep learning curve. He has received 5 treatments of chemo - carboplatin and paclitaxel. He has 4 radiation treatments left for a total of 28. This past week has been the most difficult in terms of eating and tiredness. And of course, he is a stubborn man who refuses to take his pain meds as often as he should.

Feel free to private message me if you want to talk more. I don't have answers, just commiseration.

Laura

Philly
Niki, Laura and Jeff,

We are close to you too, In Schuylkill County about an hour fifteen minutes from Philly. Mo is originally from Philly, and lived in Mongemery County just before we met.

I also understand about this site making you feel good and bad at the same time. I had to stop reading for a couple of days. It feels so helpless that treatment hasn't even started for us and am anxious to get something started yet dread for it to start. He is feeling really good right now, he has no symptoms, yet we know that treatment will make him sick eventually but can save him. If I could just freeze today, a wonderful day for us, I would give anything for that.

I haven't been able to get Mo to read any of this. He seems to being taking everything so well (but that is very like him.) Today I said to him that I didn't know how he does it, and he said he has his private moments.

Last week was hard learning that what we thought was stage 2b is really 4a. This week we have is EUS on Wednesday, and thursday is our meeting with Geisinger's team. It's at that meeting that I believe we'll find out where we are headed.

I am glad we have met you. We have a strong support group here but having people who do understand what your feeling and what you will be facing, is reassuring.

TerryV

Peg59 said:

Philly
Niki, Laura and Jeff,

We are close to you too, In Schuylkill County about an hour fifteen minutes from Philly. Mo is originally from Philly, and lived in Mongemery County just before we met.

I also understand about this site making you feel good and bad at the same time. I had to stop reading for a couple of days. It feels so helpless that treatment hasn't even started for us and am anxious to get something started yet dread for it to start. He is feeling really good right now, he has no symptoms, yet we know that treatment will make him sick eventually but can save him. If I could just freeze today, a wonderful day for us, I would give anything for that.

I haven't been able to get Mo to read any of this. He seems to being taking everything so well (but that is very like him.) Today I said to him that I didn't know how he does it, and he said he has his private moments.

Last week was hard learning that what we thought was stage 2b is really 4a. This week we have is EUS on Wednesday, and thursday is our meeting with Geisinger's team. It's at that meeting that I believe we'll find out where we are headed.

I am glad we have met you. We have a strong support group here but having people who do understand what your feeling and what you will be facing, is reassuring.

I understand your anxiety and dread
My husband is only 2 weeks into his treatment - I have the same anxiety and dread that you mention. Fear of the known and unknown, dread of not having any positive guarantees, just overwhelming to me.

Nick and I trust his team - we are in Central Iowa and using Stoddard Center. He, like Mo, doesn't want to read about his cancer. He just wants to get through this - head in the sand is his method of keeping his good spirits. After seeing some of what is generally available on the Internet, I can understand. Thankfully, this site does have survivor stories as well as loss stories - that balance keeps me hopeful.

Again, like your Mo, Nick felt great prior to beginning treatment. Thankfully these two weeks of treatment haven't been terribly bad, so it's easier to keep a positive head. But I know we are going into a rough period now just coming out of a week of in-patient cisplain and 5fu. Again, the dread creeps up on me....

The survivor stories are inspirational and our goal to be among them. Thank you to the membership here for sharing your journey.

Best of luck to you, Peg & Mo!

NikiMo

Peg59 said:

Philly
Niki, Laura and Jeff,

We are close to you too, In Schuylkill County about an hour fifteen minutes from Philly. Mo is originally from Philly, and lived in Mongemery County just before we met.

I also understand about this site making you feel good and bad at the same time. I had to stop reading for a couple of days. It feels so helpless that treatment hasn't even started for us and am anxious to get something started yet dread for it to start. He is feeling really good right now, he has no symptoms, yet we know that treatment will make him sick eventually but can save him. If I could just freeze today, a wonderful day for us, I would give anything for that.

I haven't been able to get Mo to read any of this. He seems to being taking everything so well (but that is very like him.) Today I said to him that I didn't know how he does it, and he said he has his private moments.

Last week was hard learning that what we thought was stage 2b is really 4a. This week we have is EUS on Wednesday, and thursday is our meeting with Geisinger's team. It's at that meeting that I believe we'll find out where we are headed.

I am glad we have met you. We have a strong support group here but having people who do understand what your feeling and what you will be facing, is reassuring.

Network
Hi Peg,

I am sorry to hear about your husband's diagnosis, I am sorry to hear about anyone diagnosis really. EC seems to come as a complete shock to most, which I am chalking up to the lack of awareness out there for this type of Cancer.

I am starting to feel like we are the freshman class, so many of us recently diagnosed, while I hate that any of us are going through this it will be nice to have someone to talk to as we make progress. I know it has been helpfull to hear that other people are progressing through chemo and rad without the terrible side affects that they warn you about. I remember the day before Jeff started I too just wanted to freeze that day. But, to beat this thing we have to move forward. I can tell you that Jeff had a rough first week, but that was becuase we had to find the right mixture of nausea meds. Week two was uneventful for chemo, but the radiation has started to irritate him (he only feels the burning when he drinks something with citric acid in it...now he is drinking milk based products or apple juice). We just started week three, so far so good.

Please keep us updated on Mo's progress, best of luck with the EUS.

Niki

NikiMo

TerryV said:

I understand your anxiety and dread
My husband is only 2 weeks into his treatment - I have the same anxiety and dread that you mention. Fear of the known and unknown, dread of not having any positive guarantees, just overwhelming to me.

Nick and I trust his team - we are in Central Iowa and using Stoddard Center. He, like Mo, doesn't want to read about his cancer. He just wants to get through this - head in the sand is his method of keeping his good spirits. After seeing some of what is generally available on the Internet, I can understand. Thankfully, this site does have survivor stories as well as loss stories - that balance keeps me hopeful.

Again, like your Mo, Nick felt great prior to beginning treatment. Thankfully these two weeks of treatment haven't been terribly bad, so it's easier to keep a positive head. But I know we are going into a rough period now just coming out of a week of in-patient cisplain and 5fu. Again, the dread creeps up on me....

The survivor stories are inspirational and our goal to be among them. Thank you to the membership here for sharing your journey.

Best of luck to you, Peg & Mo!

Here to listen
Hi Terry,

Looks like our husbands are in the same boat, Jeff just started his third week. Fear of the unknown has kept me up at night, but I am stating to settle into the routine of chemo and rad. I just pray that Jeff can get through the next three weeks and that the cancer is eradicated or reduced significantly and then onto surgery. I know that where we sit right now is a long way from the end of treatment, but at least we are two weeks closer to being healed.

What stage is your husband? Is he a candidate for the surgery?

Niki

sandy1943

jthomas233 said:

Thank You
Birdiequeen-

Thank you for the kind words! I appreciate anything positive at this point and I am glad that things are working out so well for you! I am hoping that there is more good news out there than this (and other) sites would lead us to believe.

I met another guy who was a 2B and is 4 years removed from chemo/rad/surgery...back at work and on his feet all day. I know for a fact that he wants to "put the whole thing behind him" as well. he would never post on a site like this and maybe there ARE more out there..

Thanks for the post and good luck with your progress!

Jeff

Hi,
When I was diagnosed I
Hi,

When I was diagnosed I had my head in the sand a lot, but when I did search the internet, it was always grim.I didn't find a site like this one until I was well into recovery. The cancer was very much a part of my and my families life and it still is . They all get scaniety when I go for my test just like I do.

I continue to read and post, because I want people to know, there is hope and life after a diagnoses . I am three years NED after treatment for stage three. I hurt for the stage fours and follow their journey, because I don't know what the future holds, but today life is good. I will not let this beast take my joy away. And if the beast surfices again I know where I can come to , to get the help emotionally ,and knowagebly from so many people that have experienced it.

I want to be of any help I can, My prayers are with you all,
Sandra

jthomas233

sandy1943 said:

Hi,
When I was diagnosed I
Hi,

When I was diagnosed I had my head in the sand a lot, but when I did search the internet, it was always grim.I didn't find a site like this one until I was well into recovery. The cancer was very much a part of my and my families life and it still is . They all get scaniety when I go for my test just like I do.

I continue to read and post, because I want people to know, there is hope and life after a diagnoses . I am three years NED after treatment for stage three. I hurt for the stage fours and follow their journey, because I don't know what the future holds, but today life is good. I will not let this beast take my joy away. And if the beast surfices again I know where I can come to , to get the help emotionally ,and knowagebly from so many people that have experienced it.

I want to be of any help I can, My prayers are with you all,
Sandra

I appreciate your posts!
Sandy-

I appreciate your posts...they are very uplifting. I have made an effort to find some survivors through some other channels and on Wednesday, just after my fourth chemo treatment, I got a call from a guy who got diagnosed t3,n1,m0 when he wass 49. He had chemo, rad, and surgery and nowhe's 62 and works full time and plays alot of golf. he lives 45 miles away. He said he could not start giving back right away, and he didn't start volunteeering until he was 5 years NED. (maybe that's how some of the other survivors feel). I feel like I have to stay in "warrior" mode right now, and some of the posts shake my resolve.

I have 5 rad treatments left and one chemo (getting 5 weekly Taxol/Carboplaten). I have very little in the way of problems as far as eating is concerned. I had 2 peanut butter waffles, a large glass of orange juice, and a banana with coffee for breakfast..I feel like food is getting by the tumor site much better than it was, though I can tell my whole esophagus is slightly constricted. I have managed to actually gain some weight..diagnosed at 214....finally staged at 199 (stess). I weigh 207 now. I am well aware of the fact that I am tolerating the treatments better than most, but I am also aware that there is no way to tell who does well with this surgery.

I played in a golf tournament yesterday (I had to skip four holes to run into town for a radiation treatment...and it's hard to swing with a cath and j-tube). The tournament was for a place called "Candie's Place", which is a local place where all cancer patients can go for solace, counseling, recreation and fellowship. One of the volunteers was a 5 year ec survivor and she looks great. She has been very helpful to me so far. She turned me on to Coconut Juice, which has more potassium than 2 bananas and is very soothing to the throat. It also has less sugar than most other juices.

My mother got breast cancer in 1986. She had treatment, surgeries, and two recurrences since then. I used to take her to chemo three years ago. Ironically, she visited me during my treatments at the same place with the same Onc staff. She still works in my office (she's 75) and keeps an eye on things when am not there. Yesterday, when I started feeling sorry for myself on the phone, she said;

"Jeff, you're not the first person to ever get cancer. Let's talk about something else."

It's great that I still have my mom around to give me some perspective!

jthomas233

NikiMo 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

Thanks
Thanks for the Hopkins Surgeon info. I'm gonna call him.

NikiMo

jthomas233 said:

Thanks
Thanks for the Hopkins Surgeon info. I'm gonna call him.

No problem
Hey Jeff,

We met Dr. Yang yesterday, we are probably going to book our surgery with him. Looking towards the end of August, God willing. We really liked him, he was very confident (should be he is the Chief of Thoracic Surgery at the #4 hospital in the US!), came in had a plan presented to us and then let me ask 101 questions. Be warned though he does not do the MIE, so if that is the approach you are going for stick with Fox Chase or you can look into Dr. Luketich at UPMC. I spoke with his office as well and I was extremely impressed (very low mortality rate...so is Dr. Yangs but again no MIE). If you want to speak with him let me know, I have that number as well. Ultimately I think my husband is going to choose Hopkins, he had a surgery last year for a hernia which makes him a more complicated case, as well as the size of the tumor and placement. After speaking with Dr. Yang he feels MIE will not work for him (he has heard that from two different surgeons now), he will choose the open surgery and go with the guy he thinks is best, in his opinion Dr. Yang. Your case is probably very different from ours.

How did week 4 treat you? My Jeff sailed right through week 3, still eating and getting in his calories. I hope everything with you is going well

jthomas233

NikiMo said:

No problem
Hey Jeff,

We met Dr. Yang yesterday, we are probably going to book our surgery with him. Looking towards the end of August, God willing. We really liked him, he was very confident (should be he is the Chief of Thoracic Surgery at the #4 hospital in the US!), came in had a plan presented to us and then let me ask 101 questions. Be warned though he does not do the MIE, so if that is the approach you are going for stick with Fox Chase or you can look into Dr. Luketich at UPMC. I spoke with his office as well and I was extremely impressed (very low mortality rate...so is Dr. Yangs but again no MIE). If you want to speak with him let me know, I have that number as well. Ultimately I think my husband is going to choose Hopkins, he had a surgery last year for a hernia which makes him a more complicated case, as well as the size of the tumor and placement. After speaking with Dr. Yang he feels MIE will not work for him (he has heard that from two different surgeons now), he will choose the open surgery and go with the guy he thinks is best, in his opinion Dr. Yang. Your case is probably very different from ours.

How did week 4 treat you? My Jeff sailed right through week 3, still eating and getting in his calories. I hope everything with you is going well

Week four was fine!
Niki and Jeff

I had very little trouble with week four...just had a complete Japanese Hibachi dinner (Filet and Lobster...ate every single thing including soup and salad...). My son leaves for Sydney, Australia tomorrow for a Study Abroad program through Cornell University, where he is an Engineering student. That's gonna be tough!

I get my chemo on Wed and played in a golf tournament Thursday (had to skip four holes to go get Rad). Did 2 miles on the treadmill this afternoon... My swallowing seems to really be improving by where the tumor site is, but I can tell the whole esophagus is getting narrower. I'm sitting at 206, which is up from a low of 199 or so...

I have my last chemo Wednesday and I am gonna spend some time with my Oncologist to REALLY make a decision on the TYPE of surgery I pick. (That may depend on the last PET scan anyway) I LOVED my surgeon at Fox Chase, but I can't find any volume of patients that have used him. After our initial consult, we met a 72 year old who had the surgery 8 days prior (he invited us to his room...) and he looked great....talked our ear off!

I'm a little nervous about the effects of the last week of RAD, but I got the magic mouthwash stuff...haven't used it yet. I actually ate two Reese's cups while I was writing this.

The whole thing is still so surreal...but we are doing our best.

Good luck with week 4! We're pulling for you!

Jeff

json_2011

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.....

I am SO glad of this sight
I am SO glad of this sight in more ways than not. My fiance' is a survivor , and now my mother is up against ec. I am grateful for all knowledge given. She has her Endoscopy test next week for stageing I guess. The Pet scan did light up the Esphagus and a knot above her right collarbone , the spot she noticed first a month ago. She went to the dermatologist and the same office building had someone take a sample and had pathology test all in the same day. The stupid pathologist said she would probebly die from this! As it did come back positive the knot on above her collarbone. I thought this was not for him to decide!! As a docter told me , there was no way he had the full report that quick. The Pet scan showed no other organs were affected. We are on this jounrey togeather. Will sure keep you posted as you do the same.

NikiMo

jthomas233 said:

Week four was fine!
Niki and Jeff

I had very little trouble with week four...just had a complete Japanese Hibachi dinner (Filet and Lobster...ate every single thing including soup and salad...). My son leaves for Sydney, Australia tomorrow for a Study Abroad program through Cornell University, where he is an Engineering student. That's gonna be tough!

I get my chemo on Wed and played in a golf tournament Thursday (had to skip four holes to go get Rad). Did 2 miles on the treadmill this afternoon... My swallowing seems to really be improving by where the tumor site is, but I can tell the whole esophagus is getting narrower. I'm sitting at 206, which is up from a low of 199 or so...

I have my last chemo Wednesday and I am gonna spend some time with my Oncologist to REALLY make a decision on the TYPE of surgery I pick. (That may depend on the last PET scan anyway) I LOVED my surgeon at Fox Chase, but I can't find any volume of patients that have used him. After our initial consult, we met a 72 year old who had the surgery 8 days prior (he invited us to his room...) and he looked great....talked our ear off!

I'm a little nervous about the effects of the last week of RAD, but I got the magic mouthwash stuff...haven't used it yet. I actually ate two Reese's cups while I was writing this.

The whole thing is still so surreal...but we are doing our best.

Good luck with week 4! We're pulling for you!

Jeff

Awesome!
Jeff,

So glad week four was easy for you, and also great to hear that you can feel the tumor site getting smaller. It makes me feel more confident going into week four with my Jeff. When we met the surgeon at Hopkins he walked in the room looked at Jeff and said "looks like your doing well with chemo". If you didn't see his 5fu pack you would never know he is in treatment. I have told Jeff that I think he is a super human really I think he is doing so well because he is in good health and he works on his feet all day so he is not sedentary. Sounds like you are having the same positive exp. due to a healthy life style.

Your son must be so excited to study abroad, I had a friend in college who studied in Australia it was an exp. of a lifetime for sure. I can only imagine that it was hard to say goodbye for both of you. But, you must feel proud and just think when he gets back you can be EC free

Is this your last week coming up for both chemo and rads? Jeff has 5 and 1/2 weeks of treatment in total. I need to ask the oncologist when he will be removed from the 5fu. We are still a little unclear. If this is your last week you must be VERY excited. I know they have the bell at Fox Chase...so ring the heck out of that thing!!!!

Let us know how it goes...keeping you and your family in prayers.

Niki and Jeff

jthomas233

NikiMo said:

Awesome!
Jeff,

So glad week four was easy for you, and also great to hear that you can feel the tumor site getting smaller. It makes me feel more confident going into week four with my Jeff. When we met the surgeon at Hopkins he walked in the room looked at Jeff and said "looks like your doing well with chemo". If you didn't see his 5fu pack you would never know he is in treatment. I have told Jeff that I think he is a super human really I think he is doing so well because he is in good health and he works on his feet all day so he is not sedentary. Sounds like you are having the same positive exp. due to a healthy life style.

Your son must be so excited to study abroad, I had a friend in college who studied in Australia it was an exp. of a lifetime for sure. I can only imagine that it was hard to say goodbye for both of you. But, you must feel proud and just think when he gets back you can be EC free

Is this your last week coming up for both chemo and rads? Jeff has 5 and 1/2 weeks of treatment in total. I need to ask the oncologist when he will be removed from the 5fu. We are still a little unclear. If this is your last week you must be VERY excited. I know they have the bell at Fox Chase...so ring the heck out of that thing!!!!

Let us know how it goes...keeping you and your family in prayers.

Niki and Jeff

Sending my son to Australia...
Niki and Jeff-

First off, let me say that sending my son to a study Abroad program in Australia is NOTHING like sending a child into harm's way in Iraq or Afghanistan. I can't IMAGINE how difficult that must be, and my heart goes out to every parent who evern had to do that!

Still, his leaving while knowing I face a daunting surgery was difficult for him. And from a purely selfish standpoint, it was hard to give him that last hug, knowing that I'm in a battle here at home. I raised my son to be a tough kid. Let me share with you how tough--

In 2005, his Freshman year, he was a district wrestling champ. The first meet of his sophmore year, he got a ride home from at meet from a teammate who was texting while driving and hit a tree. The seatbelt pushed down on his stomach and forced the entire contents out a tear in his DISTAL ESOPHAGUS into his chest cavity....collapsing both lungs. Because the accident happened at night, the catscan was read by a doctor in SYDNEY AUSTRALIA...he diagnosed the 2.5 inch tear. he had emergency surgery for 12 hours at a trauma center...had the equivalent of the Ivor Lewis ...right down the front and from the right side all the wayaround the back nearly to his spine. They had to repair the tear and get all the contaminated stomach contents out of the chest cavity, and reinflate the lungs. He was in the hospital for two weeks and had to go back four days later for two chest tubes when one lung recollapsed. The accident happened December 6, 2006. By April 15 2007, we were running laps around the Eiffel Tower park on a family trip to Paris. In September of 2009, he finished fourth in the Conference in the County Cross Country championships. During his recovery, I kept reminding him that he was lucky that he had been diagnosed and treated so quickly and that this whole experience would make him tougher. You can barely see the scars!

So, what kind of dad would I be if I broke down and confessed to him the real extent of my fears? I teared up when I hugged him, but then I broke down and sobbed like a baby when I rounded the corner.

I have 5 Rads and on chemo and that's it...should be done by Friday...I'm praying for you guys as well!

On another note, there was a commercial on TV during our party this morning about Hospice st. John...the lady was talking about her sister who had esophageal cancer, and how well she was taken care up until she died...I had 25 people in the house who were well aware of my diagnosis, as well as a 15 year old son who was watching. TALK ABOUT A DOWNER! I'm gonna call them and tell them there in no need to mention specific cancers when advertising their product! It was horrifying!

Jeff

TerryV

NikiMo said:

Here to listen
Hi Terry,

Looks like our husbands are in the same boat, Jeff just started his third week. Fear of the unknown has kept me up at night, but I am stating to settle into the routine of chemo and rad. I just pray that Jeff can get through the next three weeks and that the cancer is eradicated or reduced significantly and then onto surgery. I know that where we sit right now is a long way from the end of treatment, but at least we are two weeks closer to being healed.

What stage is your husband? Is he a candidate for the surgery?

Niki

Glad (word seems odd here) to meet you
Hello Niki

Week 3 down so 1/2 through. Radiation is still going well for Nick. Chemo wasn't bad - at least not the horror stories that we had heard. 3 more weeks + 2 days of radiation, plus one of those weeks to include in-patient chemo. Not that much longer - yet it seems like it's so far away.
Nick is Stage 3 with some lymph node involvement. We don't know the "scoring" yet - the official T or N numbers, but I do know that he is M0. Small favors appreciated.

He is a candidate for surgery. A medi-port and J-Tube were placed a few weeks before radiation started. I don't know yet if Stoddard Cancer Center offers MIE or if Nick is a candidate for MIE. If MIE is recommended, I know that it is available through Mayo, just a few hours up the road. We have great faith in our medical team though and will follow their recommendations.
an FYI for the radiation "burn" - Nick has found using an ice pack prior to radiation about an hour reduces the burn. Friday isn't as painful for him using this method.

Our thoughts & prayers are with everyone here.

sammy123

unknown said:

This comment has been removed by the Moderator

We were going to go to Johns
We were going to go to Johns Hopkins as well but they don't do the MIE. Consider Pittsburgh, Dr. Luketich. You and your husband at least deserve a call (it's free) for a consultation with a wonderful team approach. We received the chemo/radiation and now heading to Pittsburgh for the MIE. Dr. Luketich pioneered the procedure. Please consider.

As far as the burn goes in the esophagus secondary to the radiation/chemo. Try the magic mouthwash frequently throughout the day. Has lidocaine, soothing. God Bless.