Stage 4 survivor

Callaloo
Callaloo Member Posts: 135
edited May 2011 in Esophageal Cancer #1
Sorry for the rant, but.... I wish people would stop resurrecting that old post of Katanna from 2008. First, her doctors probably were mistaken in telling her she was stage 4 and then proceeding to remove all the cancer in her surgery, with no mention of chemo or radiation. That doesn't happen in stage 4. But we'll never know the details of her treatment or her diagnosis. And that's why that old thread is less and less helpful each time it pops up. It's also somewhat misleading.

And Katanna, if you're out there, I hope you're doing well. Yours is certainly one for the record books. I'd like to personally apologize to you.

BUT-- there are other actual bona fide stage 4 survivors of esophageal cancer here who I wish would post an update, though. I'm thinking of Jan's (oriontj) husband Tom, who at 22 months is possibly the longest surviving stage 4 on this forum. I think they just got back from a trip, so I'm hoping hard that Tom's doing well.

And ChiefTom, haven't heard from Liz, but her husband hopefull will hit the one year mark in a couple weeks.

Thanks to Sangora for posting. I know how hard it is to visit this board when you have a diagnosis of stage 4.

But positive news is always good to hear. We can all use a genuine ray of hope.

Lu

Comments

  • fredswilma
    fredswilma Member Posts: 185
    #2
    Hi Lu
    I can understand the
    Hi Lu
    I can understand the rant, my hubbie was told to think in months not years, we are now at 10 months and doing OK, oh you know a few ups and downs but definately on track to surpass that one year mark, and then who knows!!!
    I know for stage 4 and their carers the positive is different to that of stage 3 and under so my ray of hope is that even though Doctors have to give you some pretty dismal news based on their knowledge, not even they know the exact day and time, we just hope for our loved ones that they live as long as they can and as well as they can.
    Ann
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • Daisylin
    Daisylin Member Posts: 365
    #4
    unknown said:

    This comment has been removed by the Moderator

    Maybe, but.......
    That is the exact google search (and posting) that led me to this most helpful website! So although it is an old post and possibly misleading, it still has likely brought more members to this fantastic site! My husband is stage iv, and fighting hard. I have just recently became a member of these discussion groups, and am finding many of the other members inspiring and informative. So although Katanna may be a thorn in your side, I'm thankful to have found her.... and all of you!
  • Callaloo
    Callaloo Member Posts: 135
    #5
    OK, I didn't think of Google as being the culprit
    It's just that early on, whenever I saw this post pop up, I would get excited -- (OMG!, a 5-year survivor of stage 4, maybe there's hope for me!), then I would realize it was the phantom Katanna, and what a let down. I began to think of it as a cruel hoax.

    But if it is successful in bringing people to this wonderful site, then I can tolerate it. My resentment of Katanna has been vanquished. (Come to think of it, that's probably the post that got me here too ;-)

    Lu, a 14-month survivor of stage 4 EC
  • jojoshort
    jojoshort Member Posts: 230 Member
    #6
    Callaloo said:

    OK, I didn't think of Google as being the culprit
    It's just that early on, whenever I saw this post pop up, I would get excited -- (OMG!, a 5-year survivor of stage 4, maybe there's hope for me!), then I would realize it was the phantom Katanna, and what a let down. I began to think of it as a cruel hoax.

    But if it is successful in bringing people to this wonderful site, then I can tolerate it. My resentment of Katanna has been vanquished. (Come to think of it, that's probably the post that got me here too ;-)

    Lu, a 14-month survivor of stage 4 EC

    Stage 4 wife
    Hi all, I'm a Stage 4 wife/caregiver of a fantastic, beautiful husband with Stage 4 EC. T3N1M1 in Sept of 2010. Diagnosed with mets to the lungs in October 2010.

    I've found this discussion board to be very caring and informative. I know our time together is limited, but finding others who understand the journey to be very helpful.

    Right from the get-go, our cancer-doc was upfront about the prognosis. Seeing others here who have gone beyond the expected times is inspiring.

    Tomorrow we go for a barium swallow to see if a stent is in his future. He's had 6 sessions of FOLFOX6 and one session of platinol and irinotecan (or, as the nurses on the chemo ward call it, "I run to the can"). One session of just Irinotecan as the platinol has affected his kidneys, which weren't 5-star kidneys to begin with. He's just 54, and he's got adenocarcinoma in the distal region, with Barrett's esophagus as the culprit. Funny, he never complained (much) about acid reflux.

    While I realize a 5-year survival time is pie-in-the-sky, it's helpful for me to see others who have been fighting and "staying alive" for so long. We're hoping for a nice summer.

    Anyways, thanks for keeping us all informed. I hope to be posting for some time as a Stage 4 wife.
  • zinniemay
    zinniemay Member Posts: 522
    #7
    jojoshort said:

    Stage 4 wife
    Hi all, I'm a Stage 4 wife/caregiver of a fantastic, beautiful husband with Stage 4 EC. T3N1M1 in Sept of 2010. Diagnosed with mets to the lungs in October 2010.

    I've found this discussion board to be very caring and informative. I know our time together is limited, but finding others who understand the journey to be very helpful.

    Right from the get-go, our cancer-doc was upfront about the prognosis. Seeing others here who have gone beyond the expected times is inspiring.

    Tomorrow we go for a barium swallow to see if a stent is in his future. He's had 6 sessions of FOLFOX6 and one session of platinol and irinotecan (or, as the nurses on the chemo ward call it, "I run to the can"). One session of just Irinotecan as the platinol has affected his kidneys, which weren't 5-star kidneys to begin with. He's just 54, and he's got adenocarcinoma in the distal region, with Barrett's esophagus as the culprit. Funny, he never complained (much) about acid reflux.

    While I realize a 5-year survival time is pie-in-the-sky, it's helpful for me to see others who have been fighting and "staying alive" for so long. We're hoping for a nice summer.

    Anyways, thanks for keeping us all informed. I hope to be posting for some time as a Stage 4 wife.

    Don't know if this helps
    I am not sure how to word this but here goes. My hubby Greg Dx Jan 2009 T4n1Mo now I think it was stage four but would have to go back look at records. I know they said no sugery tumor to big. They gave him very little hope of ever talking again like 30% , he had Rads and Chemo 7 weeks cisplatin March to May1 2009. Dec 2009 they noticed small spots on his lungs. By March 2010-Stage 4 Larynx cancer mets to both lungs, they had grown so back to Chemo this time 8 rounds of Carboplatin, While doing the Chemo the tumors did get smaller but about 40%. Once the Chemo stopped the tumors grew but they waited. He started Chemo again April 26 this time Docetaxol and a trail drug called AT101. He had his second round of Chemo . June 8 we he will have ct scan to see what is going on. This Chemo he is lossing his hair . He weight is good and except for a few days (5)he is pretty heathly . He is going and doing things. I think hope is what we have. Prayer is what we need. As much as I love all you I hate this club The dues are to high.
    Well as some will tell you I am the Debbie cake queen.
    Jennie
  • Prismpunk
    Prismpunk Member Posts: 25
    #8
    zinniemay said:

    Don't know if this helps
    I am not sure how to word this but here goes. My hubby Greg Dx Jan 2009 T4n1Mo now I think it was stage four but would have to go back look at records. I know they said no sugery tumor to big. They gave him very little hope of ever talking again like 30% , he had Rads and Chemo 7 weeks cisplatin March to May1 2009. Dec 2009 they noticed small spots on his lungs. By March 2010-Stage 4 Larynx cancer mets to both lungs, they had grown so back to Chemo this time 8 rounds of Carboplatin, While doing the Chemo the tumors did get smaller but about 40%. Once the Chemo stopped the tumors grew but they waited. He started Chemo again April 26 this time Docetaxol and a trail drug called AT101. He had his second round of Chemo . June 8 we he will have ct scan to see what is going on. This Chemo he is lossing his hair . He weight is good and except for a few days (5)he is pretty heathly . He is going and doing things. I think hope is what we have. Prayer is what we need. As much as I love all you I hate this club The dues are to high.
    Well as some will tell you I am the Debbie cake queen.
    Jennie

    My dad lived 8.5 months as a
    My dad lived 8.5 months as a Stage IV survivor. At the end he hated all of the pain. He wanted to die. I saw it in the way he talked and the physical state of his body.
  • Prismpunk
    Prismpunk Member Posts: 25
    #9
    Prismpunk said:

    My dad lived 8.5 months as a
    My dad lived 8.5 months as a Stage IV survivor. At the end he hated all of the pain. He wanted to die. I saw it in the way he talked and the physical state of his body.

    He was diagnosed in
    He was diagnosed in September of 2010 and he died April 16th, 2011.
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #10
    just short of 2 years
    Lu, My husband Charlie passed away March 15, 2011.....just 10 days shy of beging dx 2 years prior. It was a tough road.....but I think he would say it was worth it. I know another caretaker's husband made it past 3 years. There is also another gentleman that I follow on another site that has just passed his 5 year mark.....also stage iv. So there is hope.....
    God Bless you. I continue to pray daily for everyone fighting this awful disease.
    Jane
  • Callaloo
    Callaloo Member Posts: 135
    #11
    JaneE2366 said:

    just short of 2 years
    Lu, My husband Charlie passed away March 15, 2011.....just 10 days shy of beging dx 2 years prior. It was a tough road.....but I think he would say it was worth it. I know another caretaker's husband made it past 3 years. There is also another gentleman that I follow on another site that has just passed his 5 year mark.....also stage iv. So there is hope.....
    God Bless you. I continue to pray daily for everyone fighting this awful disease.
    Jane

    I always thought of Charlie as one of the success stories
    He will be remembered, Jane. I followed your posts closely. I was inspired by how bravely the two of you fought this.

    From where I am now, I can see my 2-year anniversary. That may not seem like such a big deal, but most stage IVs are given 12-14 months at diagnosis, some even less. So I feel blessed.
  • mrsbotch
    mrsbotch Member Posts: 349
    #12
    Callaloo said:

    I always thought of Charlie as one of the success stories
    He will be remembered, Jane. I followed your posts closely. I was inspired by how bravely the two of you fought this.

    From where I am now, I can see my 2-year anniversary. That may not seem like such a big deal, but most stage IVs are given 12-14 months at diagnosis, some even less. So I feel blessed.

    I miss you
    Hi Lu

    So glad to see your post. How is Xeloda doing for you? I think of you so often. Last time we spoke you were working so I hope that is still the case. How is your husband doing?

    It is now almost 3 months since Vince's passing and I miss him everyday.
    It seems there are a lot more Stage 4's on here now than before. You are truly blessed to be having a 2 year anniversary. Must be those beautiful Asian genes.


    Much love
    Barb
  • tallulah2230
    tallulah2230 Member Posts: 1
    #13
    My mom was originally diagnosed in Sept 2008
    Reading some of these posts I wanted to post my mom's story. She was diagnosed w/stage 4 ec in Sept 2008. She had mets to the celiac node. Her esophagus was blocked 99% and was inoperable. After 3 rounds of chemo (cisplatin & 5fu) and radiation she was able to have an esophajectomy. According to her drs she is a miracle. All her scans have been NED. She is @ almost 3 yrs fro diagnosis!

    So that is the good news, now the bad. She had a pet scan wednesday there are new spots. Not good. Mets to her mediastinum, abdominal wall & liver. She will start chemo again next week.
  • Unknown
    Unknown
    #14
    tallulah2230 said:

    My mom was originally diagnosed in Sept 2008
    Reading some of these posts I wanted to post my mom's story. She was diagnosed w/stage 4 ec in Sept 2008. She had mets to the celiac node. Her esophagus was blocked 99% and was inoperable. After 3 rounds of chemo (cisplatin & 5fu) and radiation she was able to have an esophajectomy. According to her drs she is a miracle. All her scans have been NED. She is @ almost 3 yrs fro diagnosis!

    So that is the good news, now the bad. She had a pet scan wednesday there are new spots. Not good. Mets to her mediastinum, abdominal wall & liver. She will start chemo again next week.

    This comment has been removed by the Moderator
  • sangora
    sangora Member Posts: 213
    #15
    unknown said:

    This comment has been removed by the Moderator

    Lu we are neck and neck
    I think I am a month ahead of you in dx, so I feel that we are running this race neck and neck. Not being frivolus, but I am a horse person. Anyway the things you have shared have been helpful to me and the fact that we are on a similiar treatment program going to 2 different centers gives me even more confidence in my medical team here. Know that I am doing fine though I will be off the site as I travel in the Everglades and points south of there. I'll catch up on my return. Sam
  • oriontj
    oriontj Member Posts: 375
    #16
    My husband
    Tom was diagnosed with ec August 09 but we knew it was ec in July. After all the big guns and radiation in the fall of 90, he was clear in December 09. His cancer returned Dec 2010 in the same place, very small and only there. He started chemo in Jan 11' and when the cabroplation and taxotere caused sensory perhiphal neuropthh..they gave him only the taxol derivative. He has been doing that for 8 weeks this Wed.. every week.

    He still can golf, it's a lot harder than last summer. After this last chemo he will have a CT scan to see where he's at. Truthfully when he was first diagnosed I didn't expect he would still be with us, but he is. He does it on his terms. Makes all the decisions and doesn't ask for help from anyone. That's just him. I get to be his legs often now. Not a problem after three knee replacements for two knees, he did it for me. Now it's my turn.

    We sure don't know what's ahead but we do know, it's almost two years and that's a lot longer than we hoped for. Know we hope for more of course.

    jan

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