38 and diagnosed with stage 4 esophageal cancer

124

Comments

  • 1979bmg
    1979bmg Member Posts: 47 Member
    edited April 2020 #62
    31 month update: Bad news and good news

    Well, the honeymoon is over. In February, I went in for another scope and to attempt to do Mucosal resection removal on a small nodule in the low esophagus. My swallowing problems were getting worse since the fall  and I knew something was wrong. The nodule was the least of my problems, the tumor has returned on the stomach side of the GE junction, in the gastric cardia.

     

    The good news is, my CT and PET scans show that it hasn't come back anywhere else. That is very fortunate considering that the Immunotherapy I was taking is no longer working, and we have likely been treating this with very expensive water since last July.

     

    After a long discussion with a surgeon at Mayo, and several medical and radiation oncologists at Mayo and 2 different facikities, they all agree that it is very promising that there has been no regional or distant metastasis or recurrence in over 2 years. Being that the only visible cancer came back at and around the GE junction, I am now a potential surgical candidate.

     

    I restarted Folfiri chemotherapy last week, three more treatments of that until May. Just to try and kill and rogue cells that may be setting up shop somewhere.

     

    If the scan after that looks good, I can do carbo/taxol chemo weekly for 5 weeks, combined with 25 proton radiation treatments. Every node that was infected before will have to be radiated, from the left shoulder to the kidneys, and everywhere in between including the esophagus and stomach.

     

    If the scan after that looks good, I can proceed with surgery. Any recurrence of cancer at all in local or regional nodes, or in any organs, and surgery will likely be off the table indefinitely.

     

    I know it will be rough and brutal, but this is my best chance for a cure.  Thee will likely be some long lasting or permanent side effects from all the radiation, but it would be a means to an end to all of this. My odds of surviving another 5 years without surgery are near zero. With surgery those odds increase to about 20 to 40 percent.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    1979bmg said:

    31 month update: Bad news and good news

    Well, the honeymoon is over. In February, I went in for another scope and to attempt to do Mucosal resection removal on a small nodule in the low esophagus. My swallowing problems were getting worse since the fall  and I knew something was wrong. The nodule was the least of my problems, the tumor has returned on the stomach side of the GE junction, in the gastric cardia.

     

    The good news is, my CT and PET scans show that it hasn't come back anywhere else. That is very fortunate considering that the Immunotherapy I was taking is no longer working, and we have likely been treating this with very expensive water since last July.

     

    After a long discussion with a surgeon at Mayo, and several medical and radiation oncologists at Mayo and 2 different facikities, they all agree that it is very promising that there has been no regional or distant metastasis or recurrence in over 2 years. Being that the only visible cancer came back at and around the GE junction, I am now a potential surgical candidate.

     

    I restarted Folfiri chemotherapy last week, three more treatments of that until May. Just to try and kill and rogue cells that may be setting up shop somewhere.

     

    If the scan after that looks good, I can do carbo/taxol chemo weekly for 5 weeks, combined with 25 proton radiation treatments. Every node that was infected before will have to be radiated, from the left shoulder to the kidneys, and everywhere in between including the esophagus and stomach.

     

    If the scan after that looks good, I can proceed with surgery. Any recurrence of cancer at all in local or regional nodes, or in any organs, and surgery will likely be off the table indefinitely.

     

    I know it will be rough and brutal, but this is my best chance for a cure.  Thee will likely be some long lasting or permanent side effects from all the radiation, but it would be a means to an end to all of this. My odds of surviving another 5 years without surgery are near zero. With surgery those odds increase to about 20 to 40 percent.

    Sorry to Hear

    Jeebus, that sucks.  Sorry to hear that you're finding yourself there.  I've had two stage 4 recurrences and I'm currently clean, so it's not like you're the only one out there.  You've done so well for a couple/few years now, you've got to have at least one more win in you.  I'm rooting for you.

    Best of Everything,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member

    Sorry to Hear

    Jeebus, that sucks.  Sorry to hear that you're finding yourself there.  I've had two stage 4 recurrences and I'm currently clean, so it's not like you're the only one out there.  You've done so well for a couple/few years now, you've got to have at least one more win in you.  I'm rooting for you.

    Best of Everything,

    Ed

    Thanks for the reply, I do

    Thanks for the reply, I do not consider my current situation that bad. The docs find it very promising that there has so far been no recurrence outside of the GE area.

     

    The downside is I am HER2 negative and PDL1 negative. So the only other Immunotherapy that might work is ramucirumab in combination with chemo (Cyramza). They do feel that my cancer is very chemo-sensitive. I hope I m not getting ahead of myself, but I feel like once again there is some swallowing improvement after only 1 treatment. 3 more to go before we rescan. 

     

    What would you do in my shoes? Do you think I should go for the surgery if I qualify? I'm only 40, otherwise healthy. Been through a lot of treatment already. Even if chemo keeps working a body can only take so much.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Surgery

    Hello,

    An esophagectomy is a pretty big deal surgery.  It's major, no doubt about it.  I had it on my first occurence of EC.  I had already had chemo & radiation and the surgery was what was recommended to give me the best chance to beat it.  So I went through with it because I wanted to do everything in my power to live.  I've wound up with two recurrences in my lung anyway, but I would still have the surgery again because at the time that was what gave me the best chance.  I was 41 when I had the surgery and being relatively young & strong made dealing with the effects easier, I think.  I'm sure you've read about the common side effects that folks have to deal with.  Hopefully your stuff is contained in just the one area and they can kill it with radiation and can remove all of it with surgery.

    Wishing You the Best,

    Ed

  • annie4145
    annie4145 Member Posts: 218 Member
    This is an  uneducated advice

    This is an  uneducated advice (totally without knowing pros and cons), but you are so young.  I personally would be aggressive if it gave me a better chance long-term.   Is there a reason why the doctor's wouldn't recommend it?  (They wouldn't do surgery on my boss' colon cancer because they said it wouldn't statistically extend his life, so if they are willing to do it, it means that it statistically probably is better for you.  )

     

     

  • 1979bmg
    1979bmg Member Posts: 47 Member
    edited May 2020 #67
    33 month update

    After my recurrence, 4 treatments of Folfiri chemo has shrunk the tumor a bit, and the SUV on the PET scan has gone down from 15.7 to 6.0 at the GE junction and gastric cardia. Other than 1 slightly suspicious node in the mediastinal/paratracheal region, nothing else is lighting up anywhere else.

     

     

    This morning I got tatooed and simulated for proton beam radiation, we are radiating the tumor and every group of lymph nodes that was previously infected. 25 treatments beginning June first, with weekly chemo.

    If surgery happens it will likely be sometime in August. Also, the surgeon believes he can save most of my stomach, but over half of my Esophagus has to go. So we are more than likely talking esophagectomy instead of gastroesophagectomy if surgery happens. My surgeon is Dr. Stephen Cassivi, he is vice-chair of surgery at Mayo clinic.

    33 months ago it was doubtful and questionable whether I would survive for a year. Yesterday the decision was made by me and my medical team to attempt to CURE this. I have about a 20 to 40 percent chance of long term survival after surgery. 3 years ago those odds were zero.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Sounds Good!

    Hello,

    So, three years into it, you're right where I started in 2008.  Chemo/radiation and surgery.  Awesome that you're eligible for this course of treatment, you weren't looking for a cure a while ago.  And as far as a cure goes, 20-40% might not sound too good, but in 2008 I was stage III and had a 15% chance of five year survival.  In 2011, I was stage IV and terminal with 7-8 months of life expectancy.  In 2019, I was stage IV for a second time and when my wife asked the surgeon about my prognosis, he told her, "well Mrs. Deathorglory, I don't want to speculate about your husband, he's clearly an anomaly."  Bad odds can be beaten.  And you have a track record of doing exactly that.  Just keep on winning.  There really isn't any other option.  

    Best Wishes, 

    Ed

  • LouSean68
    LouSean68 Member Posts: 1
    edited June 2020 #69
    EC survivor here

    So glad to hear you are alive and kicking, 1979.  I just registered and found this forum today, and read through this string from 2017 with bated breath, hoping to hear a success story at the end, and although your plight continues, you're still on this Earth and I'm confident you'll beat this in the end!!  I will post greater detail on the go-forward, but here is my CliffsNotes summary to start: 

    *eating problems began in Feb 2019

    *saw a GI doctor in Mar..."cancer is a slight possibility but not likely"

    *canceled my endoscopy later that month due to business travel

    *endoscopy finally performed on July 10th - yes JULY

    *"we found a malignancy" as I'm coming out of anesthesia

    *stage 3 EC adenocarcinoma with stomach spread + one adjacent lymph node

    *"15% survival odds" per local cancer center

    *Memorial Sloan Kettering 2nd opnion: "no, we want to cure you"

    *insert 10,000 pages here

    *Folfox/radiation/durvalub clinical trial/resection (insert another 20,000 pages)

    *Saturday 6/8 I kayaked a one-mile lake down and back; Sunday I biked a forest trail 5K while my oldest son ran it and my younger son biked by my side

    *I hope to fill in the blanks with the rest of my story! (as time and motivation permits)

    P.S. I very much appreciate everyone's comments and detail around their treatment, related emotions, and quite frankly your life stories.  I appreciate you all and understand what you're going through.  Take care all-

  • mardigras
    mardigras Member Posts: 207
    edited June 2020 #70
    Survivor- Just checking in!

    Hello Everyone,

    I don’t post here often, but check in once in a while to spread some positive news about beating this horrible beast.

    My husband was diagnosed with adenocarcinoma in Summer 2011 Prior to his operation he had three rounds of Chemo, but it was ineffective. He had the Ivor Lewis op in January 2012 with a pull up. The surgeon removed a huge amount of nodes during the op.  He was not given any further treatment after his operation.

    The first year of recovery was problematic, and his weight had dropped dramatically, but he eventually got into a routine where he could eat most of the things he liked in moderation.

    He had check-ups for the next five years and they were all clear.

    Fast forward to today and he really does eat anything he likes. Sometimes too much.  Occasionally he might wake with heartburn, but he has a Renne and a small glass of milk and it goes off  quite quickly.

    He is keeping well. Has regained much of the weight he had lost and is now slim rather than skinny. He does pretty much whatever he wants to do. He gets bouts of dumping, but even they have lessened over the years. He visits the GP once a year for his Flu Jab and he is a very lucky man.

    There is an enormous amount of hope out there for those people unlucky enough to be diagnosed EC, and treatments are moving forward every year.

    Good luck to you all and God Bless.

    Marci x

    ps. Hello again Paul. So pleased to see you here still messaging. My goodness you really are the EC oracle of wisdom. Your words gave me so much strength in the early days when fear was all I could feel. God bless you for that.

    Best wishes to you and the family. Kindest regards. 

     

     

     

  • paul61
    paul61 Member Posts: 1,379 Member
    edited June 2020 #71
    mardigras said:

    Survivor- Just checking in!

    Hello Everyone,

    I don’t post here often, but check in once in a while to spread some positive news about beating this horrible beast.

    My husband was diagnosed with adenocarcinoma in Summer 2011 Prior to his operation he had three rounds of Chemo, but it was ineffective. He had the Ivor Lewis op in January 2012 with a pull up. The surgeon removed a huge amount of nodes during the op.  He was not given any further treatment after his operation.

    The first year of recovery was problematic, and his weight had dropped dramatically, but he eventually got into a routine where he could eat most of the things he liked in moderation.

    He had check-ups for the next five years and they were all clear.

    Fast forward to today and he really does eat anything he likes. Sometimes too much.  Occasionally he might wake with heartburn, but he has a Renne and a small glass of milk and it goes off  quite quickly.

    He is keeping well. Has regained much of the weight he had lost and is now slim rather than skinny. He does pretty much whatever he wants to do. He gets bouts of dumping, but even they have lessened over the years. He visits the GP once a year for his Flu Jab and he is a very lucky man.

    There is an enormous amount of hope out there for those people unlucky enough to be diagnosed EC, and treatments are moving forward every year.

    Good luck to you all and God Bless.

    Marci x

    ps. Hello again Paul. So pleased to see you here still messaging. My goodness you really are the EC oracle of wisdom. Your words gave me so much strength in the early days when fear was all I could feel. God bless you for that.

    Best wishes to you and the family. Kindest regards. 

     

     

     

    Great to see your post

    Hi Marci,

    It is so nice to see your post; and to see that both of you are doing well.

    People who are just starting this journey love to see posts like yours that assure them that "old timers" like us are still here years after treatment.

    May there be many more positive years for you both!

    Best Regards,

    Paul

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    mardigras said:

    Survivor- Just checking in!

    Hello Everyone,

    I don’t post here often, but check in once in a while to spread some positive news about beating this horrible beast.

    My husband was diagnosed with adenocarcinoma in Summer 2011 Prior to his operation he had three rounds of Chemo, but it was ineffective. He had the Ivor Lewis op in January 2012 with a pull up. The surgeon removed a huge amount of nodes during the op.  He was not given any further treatment after his operation.

    The first year of recovery was problematic, and his weight had dropped dramatically, but he eventually got into a routine where he could eat most of the things he liked in moderation.

    He had check-ups for the next five years and they were all clear.

    Fast forward to today and he really does eat anything he likes. Sometimes too much.  Occasionally he might wake with heartburn, but he has a Renne and a small glass of milk and it goes off  quite quickly.

    He is keeping well. Has regained much of the weight he had lost and is now slim rather than skinny. He does pretty much whatever he wants to do. He gets bouts of dumping, but even they have lessened over the years. He visits the GP once a year for his Flu Jab and he is a very lucky man.

    There is an enormous amount of hope out there for those people unlucky enough to be diagnosed EC, and treatments are moving forward every year.

    Good luck to you all and God Bless.

    Marci x

    ps. Hello again Paul. So pleased to see you here still messaging. My goodness you really are the EC oracle of wisdom. Your words gave me so much strength in the early days when fear was all I could feel. God bless you for that.

    Best wishes to you and the family. Kindest regards. 

     

     

     

    Awesome News

    I'm glad you guys find yourselves doing so well.  It took me eight years to gain the weight back.  And now I'm 8-10 pounds over that.   But I don't mind having a bit of a gut even a little bit.  Folks like you just offer hope to people just starting on this journey.  It's not all gloom & doom.  People do come out the other side.  Glad to hear how well you guys are doing.

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member
    Surgery is done

    My PET scan on 8/4 showed no metastatic disease, and my transhiatal esophagectomy was done on 8/5. I was released from the hospital on 8/11. I am NPO and on feeding tube until the 1st week of September. 

     

    Surgery went well and no real issues so far. They took about 80% of my esophagus and 50% of my stomach. The stomach tumor was still there but had shrunk quite a bit. Clean surgical  margins and no other cancer detected or seen. 

     

    I am really missing food and eating at the moment, 14 more days to go.

     

     

    I have been off of all pain and other medication for nearly a week. 

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Awesome News

    Well, that sounds like you're doing about as well as possible.  Hopefully, you stay clean for a good long while.  Recovering from the surgery is enough garbage, so hopefully you're clean.  And permanently.  

    All the Best,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member
    edited November 2020 #75
    39 month update

    I continue to heal well from the surgery. I can take long walks, jog, and go to the gym.

     

    I can eat whatever I want, in smaller quantities within reason.

     

    I made the decision to do some post-op chemotherapy beginning in October. The reason being my distal surgical margin in the stomach showed cancer at intial pathology. The actual staple line was re examined and showed negative. I restarted FOLFIRI in October. I made it through 3 treatments, the plan was to do at least 4 but it was just too rough on me this time. I struggled with severe nausea, lack of appetite and severe fatigue. All last week I struggled to get 500 calories a day down. My Oncologist said no more chemo unless the cancer comes back.

     

    My CT scans yesterday, 13 weeks post-op, show no evidence of disease.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    edited November 2020 #76
    1979bmg said:

    39 month update

    I continue to heal well from the surgery. I can take long walks, jog, and go to the gym.

     

    I can eat whatever I want, in smaller quantities within reason.

     

    I made the decision to do some post-op chemotherapy beginning in October. The reason being my distal surgical margin in the stomach showed cancer at intial pathology. The actual staple line was re examined and showed negative. I restarted FOLFIRI in October. I made it through 3 treatments, the plan was to do at least 4 but it was just too rough on me this time. I struggled with severe nausea, lack of appetite and severe fatigue. All last week I struggled to get 500 calories a day down. My Oncologist said no more chemo unless the cancer comes back.

     

    My CT scans yesterday, 13 weeks post-op, show no evidence of disease.

    Glad to Hear Your News

    Hello,

    I'm glad to hear your news.  Hopefully you got the full benefit of the Folfiri.  3 out of 4 isn't bad at all.  The chemo can be brutal on us.  13 weeks post-op and no evidence of cancer is a good place to be.  You've just got to finish up with your healing and get stronger.

    Keep on getting stronger,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member
    edited February 2021 #77
    42 Month update

    Just over 6 months since surgery, CT scans yesterday show no evidence of disease. I eat well, and my weight is maintaining just over 180. My only real problems lately are night time reflux and aspiration.

  • Lisa_Mac
    Lisa_Mac Member Posts: 1
    1979bmg said:

    42 Month update

    Just over 6 months since surgery, CT scans yesterday show no evidence of disease. I eat well, and my weight is maintaining just over 180. My only real problems lately are night time reflux and aspiration.

    1979bmg Just Checking In

    Ive been following your story on the blog and wanted to check in. My husband had surgery on May 10th, 2021 and is starting to feel better everyday. Hoping you are feeling well and the cancer stays away for good this time!

  • 1979bmg
    1979bmg Member Posts: 47 Member
    Still N.E.D.

    My 9 month and year follow-up scans after surgery still show no evidence of disease. The one year scan shows the scarring in the lungs (from radiation) slightly decreased.

     

    It's now been 4 years since my original diagnosis.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    Good on You

    Hello,

    Good on you that you're still NED.  Four years in and you're going strong.  Keeping all of your posts on one thread has been a great idea.  Folks can get a full picture of your journey.  You are providing both education and inspiration to those following you.  Thank you for that.

    All the Best to You,

    Ed

  • 1979bmg
    1979bmg Member Posts: 47 Member
    edited September 2021 #81

    Good on You

    Hello,

    Good on you that you're still NED.  Four years in and you're going strong.  Keeping all of your posts on one thread has been a great idea.  Folks can get a full picture of your journey.  You are providing both education and inspiration to those following you.  Thank you for that.

    All the Best to You,

    Ed

    How have you been Ed? 

    How have you been Ed? 

     

    Sorry I just don't check this very often.