Any Under 40 Survivors?

preacherchad said:

Linda, i am not sure. When I
Linda, i am not sure. When I talk with Dr. Reed in March, we, my wife and I are going to talk to her in depth about this procedure. I have read some pros and cons to both and think the MIE would be the best. I will follow through with her recommendations.

I enjoy reading the post of older ones here. I have come to realize that people that are older than me, wheather it be 50 or above, you truly have a passion for helping. You are much more indepth about issues and not afraid to let others know what is on your mind and what is best for them.

Thanks for the welcome, I have been a member for a couple of months, but yesterday was my first post.

chad

Dr. Reed was my surgeon at MUSC
Chad,

Welcome to our group, and congratulations on completing your chemotherapy!!!! I had the same basic regimen and I know the side effects can be a challenge.

I had my Ivor Lewis surgery done at MUSC, and Dr. Reed was my surgeon. I am sure you know she has an excellent reputation. In fact when I was diagnosed, the GI doctor I had at the time said; "if I were going to have the surgery you are going to need I would go see Dr. Reed at MUSC". Of course, I would discuss the potential for minimally invasive esophagectomy with her as well as a potential option. You will find her to be a kind but straightforward person who takes the time to be sure you have all your questions answered.

A little tip, The Hollings Cancer center where you will have your ESU and meet with Dr. Reed is located in a very busy part of Charleston. Parking can be an issue. However, if you pull up to the front door of the center, they have valet parking for $5. It is $5 well spent. You can leave your car, walk a few feet to the elevators and have minimal issues with parking and walking. If they schedule your ESU at the main hospital rather than the Hollings center, they have valet parking as well.

I hope you get good news from your tests.

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

Life may not be the party we hoped for, but while we are here we might as well dance!

linda1120 said:

Thank you
Hi Anthony, Yes, Jim is truly a fighter, that is for sure. He is very fatigued and if he isn't better by tomorrow they are going to put him in the hospital. I pray that the new anti-biotic is working. He has been coughing up more today and that is a good sign. Jim has often told me he has always been a fighter in life, but this is a different kind of fight! I think he is doing a great job of it! I tease him and tell him I love him more, and that got a smile and a I love you more out of him. There isn't much I can do but love him, massage his feet, drive him for hydration, take care of his feeding tube and give him his meds. He isn't eating anything, but is holding his weight being on the jtube. He is getting over 1600 calories a day, so I am very thankful for the feeding tube.

I enjoyed your story about Ayana and Anthony. I went to his website and read some of it and saved it to share with Jim. When Jim gets down I share stories about others who have not been as fortunate as him to have surgery.

Are you able to eat regular food now? Do you have to eat in small portions? I want to cook for Jim but with the pneumonia he has no appetite. Hopefully once that passes he will want regular food.

Linda

@ Linda1120: I'm a few days
@ Linda1120: I'm a few days late reading your letter, so I'm hoping that Jim is in better spirits and not in the hospital. I saw that you said they would put him back in there if he didn't feel better.


I do agree that him coughing up more is a good thing. I went through similar issues immediately after my surgery, and then when I had to have my new throat dialated. I ended up having massive fluid build up in my lungs and I would cough it up all relentlessly for a few days. I really hated that.


It's also awesome to hear that he's maintaining his weight on just the J-tube alone. When I was on the J-Tube that was when I lost the most weight during the whole ordeal.


I hope that Jim is o.k. with reading the story about Ayana and Anthony. I had a hard time reading it sometimes because of course Anthony died, but like you said it is a reminder that we are fortunate for every minute, hour, and day that we are allowed to spend with our loved ones.


Truth be told, I could complain about the way things are now. I'm so small now-a-days a strong wind could blow me over, I'm now unemployed, and depending on what I eat, my stomach hurts for hours. But on the other hand, I am still able to spend time with my wife, see my mom, see my niece, and enjoy the small things in life like hot showers, warm sunshine on my skin, and even goofy stuff like watching Americas Funniest Home Videos.


I am able to eat most regular foods, I would say about 80% of what I used to eat. Pasta, mashed potatoes, creamed corn, and lasangna are what I eat most now-a-days because I can eat tons of it before I get dumping pains. Other normal stuff like hot dogs, pizza, carrots, fish, chicken I can eat that stuff but in small portions at a time before my stomach starts hurting.


Other things that are super high in salt, sugar, or foods that make you really gassy.... I take no more than 3 to 4 bites out of that stuff before I get sick. A milkshake now-a-days is like kryptonite. Some chinese foods (depending on the store I get it from) make me really sick while others don't. And I can't eat tough / dry foods because they are hard to swallow / get down. Broccoli, steak, peanut butter, etc. etc. All of that stuff gets stuck in my throat and depending on the amount I ate I can gag really easily, so I just stay away from that stuff.


Again, I wish Jim the best with everything. I have a healthy respect for pneumonia because I've known it to take down people that are 100% healthy before having a serious surgery. Tell him from a fellow survivor that he is doing a great job and that he is not alone.

preacherchad said:

This site is so wonderful. I
This site is so wonderful. I have learned so much here, especially from William and Paul, not to meaning to take away form anyone. It is great to hear from others around my age. I am 40 years old, T2N3M0 diagnosed Nov. 11. 2010. (Originally stage 4 T4N7M1)(This is a testimony in it'self with what God can do, my doctors still can not believe it) I started cisplatin, 5FU and radiation on Jan. 3 2011. I finished my final round of chemo today, and have 5 radiation treatments left. (Pre-surgery) I am scheduled for ESU and consultation with Dr. Reed at MUSC in Charleston SC on March 8. I have found that once I started Nexium the effects of radiation are not nearly as bad. The Chemo is totally different. I had all the side effects stated in previous post.

I will say this is a very scary time in life, especially when you have a wonderful wife, 3 great kids and use to being in total control. I will say, even though I am a pastor, this has brought me even closer to God.

Keep posting everyone, this is such a blessing to so many

chad

@ Preacherchad: i am sorry
@ Preacherchad: i am sorry to hear that you are going through this, but also glad to hear about your good news regarding the treatments having a positive effect.


I wish you the best of luck and please let everyone know how things are going from time to time!

linda1120 said:

Thank you and a update
Dear Anthony,

I want to thank you for writing me back. I have been very busy taking care of Jim with his recovery and pneumonia. He is definitely getting better, but is still very weak. I read your e-mail to him and he told me to thank you for sharing about the food issues and also letting him know he is doing a great job and that he is not alone. We all need to hear that, but especially from someone who has been there.

I have not shared the site of Anthony and Ayana. He was really hit hard by the loss of Sherri's Jim, so I didn't think now was the time.

Jim's attitude is better, but he is still having a bit of an issue with being down. I think the hardest thing for him is that he has always been the macho guy that is strong and can take care of everything. He knows he can't do that now and it is such a change for him. I am very supportive and tell him it takes a pretty strong man to go through chemo, radiation, hospitalizations, surgery, and then pneumonia! He has to work through this and I know being a cancer survivor that it does a real number on you emotionally. He still isn't eating, occasionally he will have yogurt, instant breakfast, and one day 1/2 of a scrambled egg. He doesn't have any problems with eating and keeping it down. He just doesn't have any appetite. Even smells bother him and I have to be careful what I cook. The feeding tube food was upped to 1900+ calories per day to help him gain a few pounds that he lost during surgery. His weight has been holding and I am thrilled with that.

Again thank you, and keep eating and getting stronger! Cancer free is the best part for all three of us!

Linda

@ Linda: no problem, I may
@ Linda: no problem, I may be a few days late myself when responding to letters since I am not on the board daily. I also understand you are busy taking care of Jim and tending to other matters so don't worry if you can't respond quickly as well.


I'm glad I was able to make Jim feel better. It can definitely feel like you are sort of by yourself when you are going through this. For me now-a-days it is when I hang out with my wife and friends and they are all moving at 100mph and I'm slowly walking along because I still don't have the energy or muscle mass that I used too. I get tired walking up 2 flights of stairs or up a hill so when I'm in a group and everyone is speeding along, I feel like a anchor of sorts.


I realize that they aren't doing it on purpose and that it's all in my head, but just the same I can sort of understand how Jim is. To go from being healthy to being less than 100% while everyone else still seems to be healthy.


I told my wife maybe two days ago that I miss being healthy because we recently got some snow and I was unable to do much to help. I shoveled snow from around our cars for about 10 minutes, and after that I had to call it quits. Before all of this, I could shovel snow for at least an hour if not more, and I used to like going around the neighborhood helping neighbors shoveling snow and digging their cars out. I can't do that anymore, lol.


Yes, it does take a strong person to go through all of this. I know a lot of people that would die if they couldn't have their morning coffee, much less having to go weeks and months without eating anything at all.


About his eating, have you guys tried blending / pureeing his food? That's what I had to do for weeks after the surgery after my doctors said I could get off of the J-Tube. It was really hard to swallow food since I hadn't had a dialation yet, and I had severe dumping pains as well. So the nutritionist that my oncologist suggested said that I try blending my foods so I could just sip it a little at a time.



Even though his issue is appetite, he could just sip some of the blend from time to time which would still be effective. Hopefully that helps!

mkww said:

Hey David-
I'm doing fine -
Hey David-

I'm doing fine - currently in graduate school in san diego. I'm doing alright - I was diagnosed with hypothyroidism about 2 and a half years ago - I have a thin left ventricle due to radiation and a couple nodules in my thyroid. Other than that I'm pretty good. Most people can't tell I've been through esophageal cancer. I try and eat healthy - I avoid really spicy food and stop eating a few hours before I go to bed. I also avoid acidic foods at night - but as far as I'm concern I can eat almost anything. Sometimes I choke on my food if I eat too fast.

Are there any other childhood esophageal cancer survivor out there? Or anyone diagnosed before 20? 30? I've always felt a bit alone with this because I've never met anyone else whose had it anywhere as young as I did.


Mimi

@ Mimi: I was diagnosed at
@ Mimi: I was diagnosed at 29. No where near as young as you, but it fits your before 30 criteria / question.


on the other hand, while I was going to the hospital for my radiation treatments, there was a young girl there that had EC that was only 6.


I didn't get her name / information as you can imagine, but I heard her crying as she came out of the radiation room and I asked the machine operator how old she was because she looked young to have cancer and he told me.

Susie_Brendon said:

Hello,
My husband is 38 and
Hello,
My husband is 38 and recently diagnosed stage IIIA. We start chemo and radiation on Monday and then surgery after treatment. Would love to hear from survivors!!

David - what stage were you in when you were diagnosed? what was your treatment plan?

Thanks,
Susie

survivors
Hi Susie, I am sorry you have to go through this, but you definitely found the right place. My husband is 68 and was diagnosed with stage III and went through the exact chemo plan your husband is going to and 27 IMRT radiation sessions. He even had celiac node involvement which is more advanced. The chemo and radiation completely shrunk the cancer and tumor and he had his esophagus removed, along with twenty lymph nodes. His stomach was made into a new esophagus January 5th this year and he is completely cancer free. He is still on a feeding tube and has only lost 15 lbs during the surgery process. He is holding his own with the feeding tube. Lots of people lose massive amounts of weight on it, but he is doing well. He has no appetite. We live in Coeur d'Alene, Idaho and went to Oregon Health and Science Hospital in Portland, Oregon. They have an incredible team of surgeons that specialize in this surgery. Jim had complicating heart issues and he was able to have the MIE and has done very well. He did get pneumonia after surgery, but had issues with having to be on the respirator twice while in ICU. This can be a complication and it made his recovery slower, but he is starting to do better.

Do remember the stats on the internet are old, the staging isn't updated with what the doctors use, and everyone reacts differently. The will to survive can be a huge part of the battle. I am a adv. ovarian cancer survivor that according to the stats had a 10% chance of surviving ten years (and that is according to today's stats!) and I am over 12 years out! Keep the faith!

Again I am sorry that you are going through this, I remember back on September 6th and then researching and feeling such a bleakness. The doctors told us my husband prognosis is 39% for five years, and he is going to be part of that 39%!

Linda

Susie_Brendon said:

Hi Linda
WOW!! First of all...congrats to both you and your husband for both being survivors!! That is an inspiration in itself.

We live in Kansas City and are going through the doctors at Kansas City North Hospitals...so far, I'm very happy with them. Brendon had his j-tube put in last week and started his actually "feedings" two nights ago on it. His tumor is 6 cm in size and he has been having a lot of issues eating. He has already lost about 18 lbs. I get so worried and I feel like I am constantly nagging him about trying to eat more and more. Sometimes I feel like a broken record, but he informed me yesterday that he appreciates the reminders and the pushing.

I guess we will know more this week as to whether or not the chemo treatments are going to make him real sick. He will have 28 days of radiation and 2 sessions of chemo. The surgery your husband had...do all doctors do the MIE or is this something I need to talk to the surgeon about? What's the difference in that surgery or something else? Brendon has one lymph node that they plan to remove with the tumor...luckily, this is the only one that they found that looked cancerous... Will your hubby have chemo again after the surgery?? I have read on here that some do...and some don't..?!?!

I'm sorry that you are going through the same thing we are...it sucks...but like you said....they are going to be survivors in the end and we will get to be the lucky wives beside them!!!

Thanks so much for your letter...
Susie

MIE
Not all doctors do the minimally invasive surgery, but it is the preferable surgery to have. The recovery is so much faster and yet it is still a tough surgery. They do remove the entire esophagus, because even if the chemo and radiation destroy the tumor, all it takes is one cancer cell to come back. They make a new esophagus with the stomach. William will send you links to see how this is done and also the other Ivor Lewis surgery that is done that is such an invasive and major surgery that is no longer necessary. It is the old way of handling esophageal cancer. Even though Brendon only has one lymph node involved, they will remove many to make sure there is no cancer in any others. This is standard procedure. Jim had 20 removed as well as the esophagus and there was no cancer. That is why he didn't have to have chemo after the surgery. Some people have cancer cells and have to have chemo after.

I read that you aren't able to be with him all of the time. I do hope that you can get a second opinion from a major cancer center that handles esophageal cancer. We live in an area that did not do the MIE and I did a lot of research and found an excellent hospital in Portland and we made two trips there after sending our records. It saved Jim's life by going to this hospital. The surgeon here wanted to do the Ivor Lewis open surgery and told me the MIE's were not effective. I believe he did that because he didn't know how to do the MIE. William really helped me and encouraged me to get Jim to a more specialized hospital. It was hard traveling and we don't have small children, so I know this will be very difficult for you, but this is his life. This is VERY serious! It is so important to get him to the correct hospital and surgeon.

You can e-mail me through the private e-mail and I will give you my phone number if you need someone to talk to.

Linda
p.s. I understand about the nagging about eating. I am glad he has the j-tube now!

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.