any stage 4 signet ring cell survivors out there

kapper48
kapper48 Member Posts: 85
edited February 17 in Colorectal Cancer #1
Would love to talk to someone who has this type of cancer, I am pretty scared of what I am reading and what my Dr says about this cancer. Feeling pretty lonely right now
Pat
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Comments

  • trish07
    trish07 Member Posts: 138
    more backround..
    I'm so sorry to hear of your diagnosis. Could you give some more backround?
    What did your Dr. say? Where did your cancer start,what have you been through so far?
    Most importantly,where are you being treated?
    I know you feel lonely but you will start getting responses/ sometimes it takes a bit.
    Bless you, trish
  • mommyof2kds
    mommyof2kds Member Posts: 519
    I am not familiar with that
    I am not familiar with that type of cancer, but I did want to welcome you to the board. You will find the people here are very supportive and very knowledgeable. Hope you get some responses soon... Take care.
  • dianetavegia
    dianetavegia Member Posts: 1,942
    Saw some on....
    I have seen some with your tumor type on www.colonclub.com .

    Wishing you well.
    Diane
  • Janet3
    Janet3 Member Posts: 59
    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
  • jheadley
    jheadley Member Posts: 1
    Hey
    I was diagnosed on 8/5 with Signet Ring Cell Carsinoma -- I am trying to fing the right Oncologist as I recover from surgery... My only course of action seems to be Chemo at this point..
  • tnstudent
    tnstudent Member Posts: 45
    jheadley said:

    Hey
    I was diagnosed on 8/5 with Signet Ring Cell Carsinoma -- I am trying to fing the right Oncologist as I recover from surgery... My only course of action seems to be Chemo at this point..

    Signet Ring cell
    My husband was diagnosed with Stage IV signet ring cell cancer on 8/10. We have an oncologist but not sure what to expect at this point. He is only 47 and healthy other than the tumor that they found and removed and then they found it had spread to his small intestines and surrounding areas. He has 35 staples right now and is sore and weak. The doctor has said chemo. We don't know what to expect. We will be meeting with him on September 1st to learn more.
  • kapper48
    kapper48 Member Posts: 85
    tnstudent said:

    Signet Ring cell
    My husband was diagnosed with Stage IV signet ring cell cancer on 8/10. We have an oncologist but not sure what to expect at this point. He is only 47 and healthy other than the tumor that they found and removed and then they found it had spread to his small intestines and surrounding areas. He has 35 staples right now and is sore and weak. The doctor has said chemo. We don't know what to expect. We will be meeting with him on September 1st to learn more.

    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 [email protected] 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
  • DoriW
    DoriW Member Posts: 12 Member
    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 [email protected] 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

    Stage IIIC signet ring cell
    I was diagnosed with Stage IIIC signet ring cell colon cancer in May, 08'. Fourteen out of the eighteen lymph nodes they removed had cancer in them, so my cancer was quite advanced for stage III. I had a resection right away after diagnosis, followed by 12 treatments of FOLFOX. I am still NED, which is not what I expected after everything I read about signet ring. My next scan is in five weeks, so we'll see how that goes.

    I completely understand about this cancer being so scary. There is so little information available, and everything you read is so dire sounding.

    My oncologist said she has a few other patients with signet ring. She treats it the same as any other high grade colon cancer--meaning, basically, the same chemo drugs and aggressive follow-up.

    My best wishes to you. I know it is aweful. I have an almost eight year old daughter, and the thought of dying while she's still a child terrifies me.
  • tnstudent
    tnstudent Member Posts: 45
    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 [email protected] 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

    Kapper48
    Pat,

    Thanks for the reply. My husband has been recovering from his resection very well. The incision is healing nicely. He got his powerport on 9/4. His visit with the surgeon last week went well he returns in 3 months. He went for his PET scan on Thursday we are awaiting the results. :| He had a visit with a cardiologist and a stress test and they said this his heart was strong, healthy, good blood flow and no blockages. He has to return to them in 3 months. He goes for his first chemo treatment tomorrow 9/15. Getting a little nervous.

    Amy
  • babs8855
    babs8855 Member Posts: 1
    Me too
    I was diagnosed on 8/3 with signet ring adenocarcinoma of the appendix. What happens with this is the appendix explodes and spews tumor all over the abdomen. It ends up on the exterior of every organ in the abdomen and the wall of the abdomen. It is then called PMP. The standard treatment is FOLFOX chemo, a complete cytoreduction surgery, otherwise known as MOAS (the mother of all surgeries) followed by HIPEC, a hot abdominal chemo wash. Signet ring is the most agressive of all PMP. Google PMP, MOAS and HIPEC.

    Helpfull links:

    Yahoo group PMPBellyButtons
    www.surgicaloncology.com
    www.appendix-cancer.com

    I can be reached directly at [email protected]

    Barb
  • jk2628
    jk2628 Member Posts: 1
    my wonderful husband
    My husband, Jim had never been sick or in a hospital and then one day he got sick he went to the ER and was admitted and in 3 days we had a stage 4 SIGNET RING cancer and the surgeon told us he had weeks to months to live. That was 13 1/2 months ago. When the oncologist came in to see Jim he told him if he was ready to give up then his time would be short but if he was a fighter he couldn't give him a time but he would do all he could and he has.

    The cancer is inoperable and no radiation can be done but Jim takes chemo 5FU every 2 weeks and he feels very tired for a couple of days but he is doing well. The small intestine was completely blocked and Jim could not eat anything but he not eats and the small intestine is open from the chemo shrinking the tumors.

    We know it is a bad and rare cancer but he was told very little chance but he has been given that and he believes our doctor is the best. We are in NW Indiana and even though we are close to Chicago my husband wants to stay with our doctor because he has faith in him and he is such a fighter. Doctor told him just a few ago that he is doing amazing and has astounded all the doctors that have seen him in the past year.

    Jim was diagnosed 1/19/2010 and is still alive, doing OK and back to work part time. He was a truck driver on local routes.

    We hope for you the best and there is a God and he is still performing miracles everyday.
  • Imran08863
    Imran08863 Member Posts: 1
    jk2628 said:

    my wonderful husband
    My husband, Jim had never been sick or in a hospital and then one day he got sick he went to the ER and was admitted and in 3 days we had a stage 4 SIGNET RING cancer and the surgeon told us he had weeks to months to live. That was 13 1/2 months ago. When the oncologist came in to see Jim he told him if he was ready to give up then his time would be short but if he was a fighter he couldn't give him a time but he would do all he could and he has.

    The cancer is inoperable and no radiation can be done but Jim takes chemo 5FU every 2 weeks and he feels very tired for a couple of days but he is doing well. The small intestine was completely blocked and Jim could not eat anything but he not eats and the small intestine is open from the chemo shrinking the tumors.

    We know it is a bad and rare cancer but he was told very little chance but he has been given that and he believes our doctor is the best. We are in NW Indiana and even though we are close to Chicago my husband wants to stay with our doctor because he has faith in him and he is such a fighter. Doctor told him just a few ago that he is doing amazing and has astounded all the doctors that have seen him in the past year.

    Jim was diagnosed 1/19/2010 and is still alive, doing OK and back to work part time. He was a truck driver on local routes.

    We hope for you the best and there is a God and he is still performing miracles everyday.

    My Wife was diagnosed with
    My Wife was diagnosed with appendecial cancer in Nov 2010 , she was supposed to undergo debulking surgery on Dec 27, 2010, The surgeon could not perform the surgery as the tumor was spread all over her abdomen and small intestine and doctors thought that her quality of life would significantly suffer due to the surgery so they did not remove the tumor. She is now undergoing chemotherapy , today was her third one and this would be a six chemo cycle.

    her type of cancer is signet ring which is the rarest in appendix cancer and unfortunately not curable. she is being treated at Memorial Slone Ketering Cancer Center in New York City which is supposedly amongst the best cancer center in the country, Doctors are not very hopeful as they say not a lot of research is available due to the rarity of the cancer. We were looking at the heated chemo during surgery which is actually done in DC by a Dr Sugarbaker , but when he looked at the operative notes he declined to do the surgery as well.

    she is feeling pretty good but when i read about this cancer i only see bad news, i am so grateful for your experience , it gives me something to look upto please do keep posting on his updates and i will do the same
  • lisa42
    lisa42 Member Posts: 3,625

    My Wife was diagnosed with
    My Wife was diagnosed with appendecial cancer in Nov 2010 , she was supposed to undergo debulking surgery on Dec 27, 2010, The surgeon could not perform the surgery as the tumor was spread all over her abdomen and small intestine and doctors thought that her quality of life would significantly suffer due to the surgery so they did not remove the tumor. She is now undergoing chemotherapy , today was her third one and this would be a six chemo cycle.

    her type of cancer is signet ring which is the rarest in appendix cancer and unfortunately not curable. she is being treated at Memorial Slone Ketering Cancer Center in New York City which is supposedly amongst the best cancer center in the country, Doctors are not very hopeful as they say not a lot of research is available due to the rarity of the cancer. We were looking at the heated chemo during surgery which is actually done in DC by a Dr Sugarbaker , but when he looked at the operative notes he declined to do the surgery as well.

    she is feeling pretty good but when i read about this cancer i only see bad news, i am so grateful for your experience , it gives me something to look upto please do keep posting on his updates and i will do the same

    sad to see this post
    I was sad to see this post of Pat's (original post day 8/17/09). Pat is no longer with us- it brought a sad smile to my face to see his smiling picture.
    To Imran08863... I'm sorry your wife is doing so poorly & I do wish you and her the best- take care-

    Lisa
  • kurtis
    kurtis Member Posts: 17
    Hi
    I have stage IV signet ring cell mucinoid adenocarcinoma,which is rare, but I'm still here to talk to if you need it.
  • HANRSC
    HANRSC Member Posts: 21
    Hello
    I am a stage 4 survivor since 2006.

    You may contact me at [email protected]
  • HANRSC
    HANRSC Member Posts: 21
    Hello Pat
    I just sent an email but forgot to mention my name. My name is Charles and I live in Germany. My email address is [email protected] online daily.

    Charles
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    lisa42 said:

    sad to see this post
    I was sad to see this post of Pat's (original post day 8/17/09). Pat is no longer with us- it brought a sad smile to my face to see his smiling picture.
    To Imran08863... I'm sorry your wife is doing so poorly & I do wish you and her the best- take care-

    Lisa

    Agreed
    Made me think of Pat again too, Lisa. I miss the guy; we were going to sit on the porch and discuss the mysteries of life, but things got away....

    -Craig
  • forrest hoekstra
    forrest hoekstra Member Posts: 6
    babs8855 said:

    Me too
    I was diagnosed on 8/3 with signet ring adenocarcinoma of the appendix. What happens with this is the appendix explodes and spews tumor all over the abdomen. It ends up on the exterior of every organ in the abdomen and the wall of the abdomen. It is then called PMP. The standard treatment is FOLFOX chemo, a complete cytoreduction surgery, otherwise known as MOAS (the mother of all surgeries) followed by HIPEC, a hot abdominal chemo wash. Signet ring is the most agressive of all PMP. Google PMP, MOAS and HIPEC.

    Helpfull links:

    Yahoo group PMPBellyButtons
    www.surgicaloncology.com
    www.appendix-cancer.com

    I can be reached directly at [email protected]

    Barb

    Me too
    I just found out last week , burst appendix , signet Ring Cells all through my abdomen.

    I feels like a dealth sentence, waiting for an OKay from Dutch Hipec specialist, scared lonely, and trying to put up a strong presence for my kids

    Anyone out there with a treatment suggestion , I can take to my Dutch specialist

    Signet seams to be resistant to normal treatments,
    I feel the life going out of me.

    GOD Bless everyone on the board.
    Forrest
  • forrest hoekstra
    forrest hoekstra Member Posts: 6
    HANRSC said:

    Hello
    I am a stage 4 survivor since 2006.

    You may contact me at [email protected]

    How
    How did you survive so long , please tell me the treatment you followed

    Signet Ring cell cancer is an orphaned desease, all info is very welcome
  • forrest hoekstra
    forrest hoekstra Member Posts: 6

    Me too
    I just found out last week , burst appendix , signet Ring Cells all through my abdomen.

    I feels like a dealth sentence, waiting for an OKay from Dutch Hipec specialist, scared lonely, and trying to put up a strong presence for my kids

    Anyone out there with a treatment suggestion , I can take to my Dutch specialist

    Signet seams to be resistant to normal treatments,
    I feel the life going out of me.

    GOD Bless everyone on the board.
    Forrest

    still around
    Sorry to heard that Pat has passed on, I hope his family can live further in peace

    This board has not furnished any replies so I quess Pat is not the only one.

    I wish everyone success in their own battle, even up hill battle know success

    God bless and keep you

    Forrest