any stage 4 signet ring cell survivors out there

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Comments

  • NewHere
    NewHere Member Posts: 1,427 Member

    Stage 4 Signet Ring Cell

    Hi I see that you were diagnosed with stage 4 in June 2009.  I'm very interested to see how you are doing.  I was orignally stage 3b in 2014 but the cancer came back exactly one year later and is my retropertineal and subclivicular lymph node.  I completed six months of chemo for the recurrence.  Getting scans every three months.  Enjoying the break but have no idea when it's going to start growing again.  Right now all I know is that I am terminal and that I will probably be in and out of treatments for the rest of my life.  I'm being treated at Johns Hopkins in Baltimore.  Medical Oncologist says it's a mystery nobody knows how long it's going to take to come back.  I've had chemo three times and third of my stomach removed.  Diagnosed when I wa 45 years old I'm now 48.  So scary!!!  Would like to know how you are doing?  I realize everyone is different but we are close to the same age.

    Long Time Thread

    You should start a new thread and introduce yourself.  This is an old thread and it seems that there were many threads bumped recently that are old.  Sorry you are here, but it is a great place to meet a ton of good people to laugh wtih, yell with, joke with and carry on with this all - Stage IIIB from 2014, you are going to help others.  And John Hopkins kicks butt with medicine. None of us know when this will start again ...  But for the record.  Many of us here are IVB.  And we are not considered terminal.  I am IVB, older than you, no one calls me terminal and says based on my age (mid 50s) and good health I am going to be around for quite awhile.  We are all terminal, it is life, and if you are more terminal according to doctors, looks for some more opinions.  Hopkins is good, but never hurts to hear other thoughts in all this.

  • ruby13
    ruby13 Member Posts: 2
    kapper48 said:

    tnstudent please respond
    You didn't leave your name so I dont know who I am talking to. I was also diagnosed with stage 4 signet ring cell in June of this year. It also spread to my small Intestines and my pelvic area. I started my chemo treatments on Monday of this week and got the pump off today I dont feel to bad other than a little headache, the meds they gave me seem to be working pretty good. If your husband would like to talk I would love to have someone to go through this journey with you can email me at patkapper@jbmarineco.com if you want we can exchange phone numbers and talk also. I am 49 years old with a loving wife and 5 daughters and 5 grand kids so as you can see I have alot to live for. I cant offer much but I know that being able to talk to someone else with the same cancer would be nice
    Yours truley
    Pat

    Hi! I'm new to this site.

    Hi! I'm new to this site. Wanted to ask you what type of chemo you had? Thank you!

  • ruby13
    ruby13 Member Posts: 2
    Trubrit said:

    Mistake

    Mistake. Sorry!

    What was a mistake? Saying

    What was a mistake? Saying kapper has passed?

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited May 2017 #45
    ruby13 said:

    What was a mistake? Saying

    What was a mistake? Saying kapper has passed?

    Double post

    If you hit the back button, then you end up with a double post. So, my mistake was a double post. 

    It would be a good idea if you start your own post, as this post is 16 years old, and many members here are no longer alive or not posting. 

    Here is a link to the forum home page.   https://csn.cancer.org/forum/128  Start a new link and introduce yourself, and ask your question. 

    Tru

  • vivtokki
    vivtokki Member Posts: 2

    "Survivor"

    just turned 38.  Diagnosed at 37 - 3 months out with chemo headed to Houston for follow up.  Yeah - it's scary but I've built quite a support group.  My work terminated me a week after diagnosis - they found out through transmission of records not authorized.  

     

    You oy are not alone.  i feel I have yet to live

    Also diagnosed at 37

    Hi I was wondering how you are doing? That's terrible they terminated you.

    How are you these days?

    I was diagnosed with stage 4 signet ring adenocarcinoma in stomach recently. I'm onto cycle 2 of chemo.

    I was told 12 months which I intend to outlive every bit and live into my 70's.

     

  • dinaselva
    dinaselva Member Posts: 1
    Janet3 said:

    I don't know much but....
    Here's my story. My mom complained of a stomach ache, normally not a complainer so we took this seriously. No other symptoms. My mom was dx Stage IV colon cancer signet cell adenocarcinomatosis 30JUNE09 at 61 yrs old. Perfectly healthy otherwise. Dr says very rare. I haven't been successful in locating much info about it. We consulted with oncologist here in San Antonio who recommended we get second opinion at M D Anderson in Houston, TX which we did. The 2 oncologists came up with a plan. My mom started started chemo 3AUG09, had 2nd chemo 17AUG09. She feels crappy, nausea/extreme fatigue for about 4 days after chemo. The surgeon who discovered the cancer stated my mom had 3 months to live. When we told the oncologist this, they couldn't believe it, said he had no right nor the knowledge/expertise to make such a statement. The oncologists have said that with the chemo they feel confident that 5 years is reasonable to expect. My mom's faith and extremely confident attitude says she has much more than that. I only recently joined this discussion board but I will say this - there are some very brave, courageous people here that are willing to share their stories and whatever knowledge/insight they have. Do not give up. Fight the good fight. Be your own advocate or find a trusted friend or family member to be your advocate. Learn everything you can. Do NOT believe everything you read on the internet. I would also receommend that you find a support group in your area - others in your situation can provide support and a wealth of information. Things you didn't even know you should ask. I will certainly update you on anything I learn. I am a maniac about research. Even though I am a nurse, I don't know much about cancer and all that it involves. Continue to read this board and contribute, ask questions. Above all, remain positive. I believe attitude is 75% of the battle and I think others would agree. You will remain in my thoughts and prayers.
    Janet

    update?

    i know it's been a long while since your post but I am just starting research for my friend just diagnosed with Signet Cell Ring Carcinoma and wondering how your mom did?   Any information you can give about your journey and doctors you saw would be greatly appreciated.  We are in San Antonio as well and considering going to MD Anderson.   Please help...

  • Jfire
    Jfire Member Posts: 1
    edited August 2017 #48
    Stage iV SURVIVOR

    I was 44 on Nov 14,2014 when I got the news that I had stave iv cignet ring cell colon cancer...I was in a terrible accident 2 years prior and shattered my ankle and leg...I had symptoms but NOTHING could compare to the pain I was going through so I ignored it... I was diagnosed on a Monday and had surgery the VERY next day...I had 9 inch tumor on my right ovary; which turned out to be colon cancer that had spread throughout my organs.

     I did 12 months of chemo and was scheduled to continue for another 6; which I opted out of due to CHEMO was KILLING ME!  I turned to cannabis CBD oils and THC caps.  I do my scans every 3 months (doctor still will not remove my port due to the rate of this returning is not good).  BUT I AM STILL HERE!! I still need my leg to be fixed and will probably opt for amputation as 11 surgeries later I still am unable to walk…BUT I AM STILL HERE!!!

    NOBODY should give up and DO NOT be scared to challenge your doctor!  He told me he didn’t give me 4 months to live when I opted to STOP CHEMO to get my ankle operations…but guess what? I AM STILL HERE!! I have never stopped working (Except for one week after surgery when diagnosed)…I try to live as much a normal life as possible because I AM STILL HERE!!

     

  • Stonybrook
    Stonybrook Member Posts: 6
    Thank youtinue

    hello dear Jfire,

    thanks for the post. Your story inspire my husband and it gives us hope to continue fighting with this stupid cancer. 

     

    Thank you

  • Macquillin
    Macquillin Member Posts: 2
    Jfire said:

    Stage iV SURVIVOR

    I was 44 on Nov 14,2014 when I got the news that I had stave iv cignet ring cell colon cancer...I was in a terrible accident 2 years prior and shattered my ankle and leg...I had symptoms but NOTHING could compare to the pain I was going through so I ignored it... I was diagnosed on a Monday and had surgery the VERY next day...I had 9 inch tumor on my right ovary; which turned out to be colon cancer that had spread throughout my organs.

     I did 12 months of chemo and was scheduled to continue for another 6; which I opted out of due to CHEMO was KILLING ME!  I turned to cannabis CBD oils and THC caps.  I do my scans every 3 months (doctor still will not remove my port due to the rate of this returning is not good).  BUT I AM STILL HERE!! I still need my leg to be fixed and will probably opt for amputation as 11 surgeries later I still am unable to walk…BUT I AM STILL HERE!!!

    NOBODY should give up and DO NOT be scared to challenge your doctor!  He told me he didn’t give me 4 months to live when I opted to STOP CHEMO to get my ankle operations…but guess what? I AM STILL HERE!! I have never stopped working (Except for one week after surgery when diagnosed)…I try to live as much a normal life as possible because I AM STILL HERE!!

     

    SRCC stage 4 - Colon

    Hi Jfire,

    It is truly inspiring to hear. I have been diagnosed on this yesterday. Just got my Coleen removed. Wanted to check on what achemo was applied to you.

     

    My prayers and regards, Macqy

  • Macquillin
    Macquillin Member Posts: 2
    edited August 2017 #51
    laurettas said:

    What wonderful news,
    What wonderful news, deddlem! Do you know your dad's chemo history--what he took when and for how long? My husband has responded well to the chemo so far but he has had to drop a couple of drugs due to side effects. Hope the new drugs work as well for him.

    Hows your hubby doing?

    Hello Laurettas, 

    I was diognised with stage 4 Signet ring cell a couple of days back. Just wanted to check what needs to be done further and how effective this chemo on SRCC cells.

     

    My warm regards, 

    Macqy

  • robinson94
    robinson94 Member Posts: 1

    SRCC stage 4 - Colon

    Hi Jfire,

    It is truly inspiring to hear. I have been diagnosed on this yesterday. Just got my Coleen removed. Wanted to check on what achemo was applied to you.

     

    My prayers and regards, Macqy

    SRCC S4 - Colon, is not that aggressive

    Contrary to what you may read on Google, SRCC S4 is not very aggressive. It all depends on how your body reacts to Chemos, Intra-Peritoneal Chemos and of course there is HIPEC.

    Here is a link to all SRCC S3, S4 long-term survivors - http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=56546

  • MAW.2020
    MAW.2020 Member Posts: 1
    edited November 2020 #53
    Jfire said:

    Stage iV SURVIVOR

    I was 44 on Nov 14,2014 when I got the news that I had stave iv cignet ring cell colon cancer...I was in a terrible accident 2 years prior and shattered my ankle and leg...I had symptoms but NOTHING could compare to the pain I was going through so I ignored it... I was diagnosed on a Monday and had surgery the VERY next day...I had 9 inch tumor on my right ovary; which turned out to be colon cancer that had spread throughout my organs.

     I did 12 months of chemo and was scheduled to continue for another 6; which I opted out of due to CHEMO was KILLING ME!  I turned to cannabis CBD oils and THC caps.  I do my scans every 3 months (doctor still will not remove my port due to the rate of this returning is not good).  BUT I AM STILL HERE!! I still need my leg to be fixed and will probably opt for amputation as 11 surgeries later I still am unable to walk…BUT I AM STILL HERE!!!

    NOBODY should give up and DO NOT be scared to challenge your doctor!  He told me he didn’t give me 4 months to live when I opted to STOP CHEMO to get my ankle operations…but guess what? I AM STILL HERE!! I have never stopped working (Except for one week after surgery when diagnosed)…I try to live as much a normal life as possible because I AM STILL HERE!!

     

    My friend was diagnosed with stage 4

    hopefull you can share some experience with me...I was wondering if you were on any speci kind of diet? Was chemo helping? have you tried any new trial drugs....please help

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited November 2020 #54
    MAW.2020 said:

    My friend was diagnosed with stage 4

    hopefull you can share some experience with me...I was wondering if you were on any speci kind of diet? Was chemo helping? have you tried any new trial drugs....please help

    Welcome MAW

    This is a very old thread, started in 2009.  Kapper has passed, along with many others who have posted; but there are Stage IV's with stories to tell, on the forum..

    If you post a new thread here https://csn.cancer.org/forum/128 then folks will be sure to come along and share their stories. 

    Tru

  • mahendra1987
    mahendra1987 Member Posts: 1 *

    What is mean by signet ring morphology in colon.