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any stage 4 signet ring cell survivors out there

kapper48's picture
kapper48
Posts: 85
Joined: Aug 2008

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

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

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's picture
mommyof2kds
Posts: 522
Joined: Mar 2009

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's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I have seen some with your tumor type on www.colonclub.com .

Wishing you well.
Diane

Janet3
Posts: 61
Joined: Aug 2009

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
Posts: 1
Joined: Aug 2009

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's picture
tnstudent
Posts: 45
Joined: Aug 2009

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's picture
kapper48
Posts: 85
Joined: Aug 2008

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

DoriW's picture
DoriW
Posts: 12
Joined: Feb 2009

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's picture
tnstudent
Posts: 45
Joined: Aug 2009

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

Trubrit's picture
Trubrit
Posts: 1411
Joined: Jan 2013

Mistake. Sorry!

babs8855
Posts: 1
Joined: Oct 2009

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 bserbu@aol.com

Barb

forrest hoekstra
Posts: 6
Joined: Jul 2011

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
Posts: 6
Joined: Jul 2011

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

jk2628
Posts: 1
Joined: Mar 2011

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
Posts: 1
Joined: Mar 2011

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's picture
lisa42
Posts: 3663
Joined: Jul 2008

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

Sundanceh's picture
Sundanceh
Posts: 4281
Joined: Jun 2009

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

kurtis's picture
kurtis
Posts: 17
Joined: Feb 2011

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
Posts: 21
Joined: Apr 2007

I am a stage 4 survivor since 2006.

You may contact me at HANRSC@YAHOO.COM

forrest hoekstra
Posts: 6
Joined: Jul 2011

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

HANRSC
Posts: 21
Joined: Apr 2007

I just sent an email but forgot to mention my name. My name is Charles and I live in Germany. My email address is HANRSC@Yahoo.com...on online daily.

Charles

John23
Posts: 1832
Joined: Jan 2007

I am/was a stage 4 signet cell victim since 2006;
I chose imported Chinese herbs rather than chemo.

I wish you well regardless of your choice; there are
no guarantees with any!

Best of health,

John
--------------------

OOOOPS

Sorry gang, I didn't realize this was a repost from the past!

Why Do People Do This?

ugh.

Best to all!

John

mmikesell
Posts: 8
Joined: Jun 2010

My name is Mitch, 48 and I was diagnosed last July with appendix cancer. Stage 3c. It has both Goblet Cell and Signet ring cell cancers, very rare I've since found out. The appendix hadn't exploded yet so they were able to take it out. Had 24 lymph nodes taken 5 had cancer growing. I've had folfox for the 6 months and then nothing detected. At my 6 months my CEA was at 15 (from 4) and after lots of scans a 3/4 inch tumor was found on my abdomen wall. Just completed surgery to have that removed. They found nothing else. The pathology said it was all signet ring cell adenocarcenoma. I go see my oncologist on Wednesday to find out what the next plan is.

My best thoughts and prayers for you!

laurettas
Posts: 372
Joined: May 2011

Good luck, Mitch! My husband, 58, was just diagnosed with stage 4 signet ring cell cancer of the colon. He had surgery and is now just past halfway on his first chemo treatment. He has cancer in his peritoneum, many lymph nodes and possibly lungs but has responded well to the chemo. Many of the spots are gone and the rest are smaller, CEA down to 13 from a high of 40 after surgery. He has had to leave Folfox after a severe reaction to Oxalyplatin and can't use Avastin because it gave him blood clots. He just had his first shot of Irinotecan last week and is waiting to see if he is a candidate for Erbitux. This is quite a roller coaster ride isn't it?!

mmikesell
Posts: 8
Joined: Jun 2010

yeah, quite a ride. On treatment 7 of 12, I went into the bathroom directly after they started the Oxy, locked the door and went into anaphylactic shock. The alarm on my chemo dispense went off and they rescued me from the bathroom. From there on, I was able to take the Oxy at half the speed with a double adult dose of benadryl and 4 times the "ants-in-the-pants". So the first day of the chemotherapy would take me a little over 8 hours to complete. But I was able to stay on it.

laurettas
Posts: 372
Joined: May 2011

Oh my goodness! How long were you passed out in the bathroom? You were very fortunate to have survived that! Interesting that your onc kept you on oxy. My husband's said no more because his reaction was too severe--even though it was not a full-blown anaphylactic shock since he could still breathe.

A couple of questions--what is "ants in the pants"? And what is your chemo schedule? You said that your first day of chemo took 8 hours. My husband gets one chemo treatment every two weeks. He was on FOXFOX plus Avastin but has had to drop the oxy due to the reaction and the Avastin due to blood clots.

mmikesell
Posts: 8
Joined: Jun 2010

with the details of what my regimine was.

lovegmf@verizon.net
Posts: 1
Joined: Aug 2011

I was diagnosed in april, 2011 at age 48 with signet ring cell cancer in sigmoid. they tried to operate but it spread in peritoneum. It is scarry at our age. I have chosen not to get chemo at this time. It is Stage IV. Also, my sister was just diagnosed with rectal cancer but not signet ring cell. She has started radiation with chemo pills. Then IV chemo.

Mrs. B.
Posts: 7
Joined: Oct 2011

I am 68 years old and was diagnosed with Stage IV Signet ring cell in January 2011. Started in appendix, no other health problems. Surgery removed appendix, hemicolectomy removing 5" of both intestines/colon. Cancer had spread to peritonea. Prognosis was 1 1/2 to 2 years with chemo; 6 to 9 months without chemo. Oncologist said "treating in the dark", 40% chance of responding to chemo, very rare, aggressive..." I chose to not have chemo. I became vegan, do extensive juicing etc. My lab work is all normal and I do not have any symptoms. I see the oncologist every 3 months.

deddlem
Posts: 1
Joined: Aug 2011

Hi, My Dad is a stage IV signet ring cell cancer survivor (colon). He was diagnosed 3 full years ago and the cancer has not progressed since then due to his chemo. He even started getting chemo breaks! I understand this is rather unusual but with cancer, like a lot of things, you just never know. One day at a time...I hope you are doing well and found the support you need!

laurettas
Posts: 372
Joined: May 2011

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.

Sundanceh's picture
Sundanceh
Posts: 4281
Joined: Jun 2009

Hey Guys

You guys want might want to open your own thread from scratch to discuss this topic.

This post is a couple of years old and Kapper48 is no longer with us, having lost his fight. He was a good friend, husband and father. Seeing his picture evokes alot of strong feelings.

julesio
Posts: 24
Joined: Jun 2011

Hi everyone, I just found out that my partner has this kind of cancer, any suggestions or advice would be appreciated, they have tried folfox on him already and it didn't work and now he is getting bowel obstructions from peritioneal mets. Things I read are all very depressing so any help would be appreciated. Thanks!

John23
Posts: 1832
Joined: Jan 2007

Please start a new thread, this is a 2009 thread,
and some just wil not be able to respond anymore.

Thank you, and best wishes,

John

Krebs
Posts: 4
Joined: May 2013

Hello, how are you? Hope all is well. My father was diagnosed with signet ring cell cancer stage 4 in March and it has spread to the abdominal walls. They said surgery is not possible. Started chemo with Oxciliplatin in March. Will have the 5th cycle on Wednesday and a check up soon. He is in his late 60s.

His state of mind is scared. Naturally we all are. Can you please based on your own experience and fact finding tell me what is most effective to kill off this type of cancer? Is there any realistic chance at a cure? Anything particular helpful that you came across? Any additional advice would be greatly appreciated.

Thank you so much.

Michael

John23
Posts: 1832
Joined: Jan 2007

Please start a new thread regarding your question.

 

The thread you are answering to is originally from 2009, with the last post from 2011; Many of the individuals have passed on, making it very difficult for them to answer you.

 

Those of us that remain on Earth will be happy to offer suggestions, but on a new thread.

 

Thanks.

 

Best wishes,

 

John

 

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