CancerCompass message board discussion started by Jjberg on 1/5/2007 http://www.cancercompass.com/message-board/message/all,8643,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello Everyone: I've had surgery already wherein they removed the right side of my Colon together with the Omentum and some affected Lymph Nodes, hence I'm in Stage 4 with Signet Ring Cell. What's unusual in my case is that they discovered a separate cancer comprised of over 100 small tumors on the inside lining of my small intestine, also of the Signet Ring Cell genre.  Because it is on the inside of my small intestine, it is growing in reverse of the typical cancer which grows inward from the outside of the small intestine.  The result of this is difficulty in doing an appropriate test to develop the base line from which to monitor the progress of the Chemo.  Between the Oncologist and Radiologist, they have come up with a test called the small bowel follow through; however, this test is apparently done very rarely and the effectiveness of it is questionable. I'm wondering if anyone out there is familiar with cancer in the small intestine, growing from the inside out, and of a signet ring cell type and how they might have monitored the progress of their chemo.I've had one chemo session so far with 11 more to go.  My main ingredient is Oloxyplatin (or something like that), something else that they put in me at the infusion center and 5FU which they send me home with using a pump for two days.  My primary question here is about what anyone might know about the test to establish a baseline.  If anyone has any thoughts on the chemo regimen, please feel free to comment.  Jjberg Fri, 05 Jan 2007 00:00:00 GMT I also have Signet Ring Carcinoma. My cancer was found in my appendix with a tumor on my right ovary. I was on Oxciliplatin, Leukevorin, and 5FU for about 10 months until I had an allegic reacation (difficulty breathing). But it did work for me, at least for a while. I have been off chemo for three years and just recently have the doctors seen an increase in my CEA level. That is the tumor marker they are using to monitor my cancer. I return to the Mayo Clinic in Minnesota in February for another CEA test and a PET scan. If nothing shows and my CEA is still high, then I will have exploritory surgery.Would love to hear more about your experience.  Cansurvivor Mon, 08 Jan 2007 00:00:00 GMT I was diagnosed with stage 4 - small bowel signet cell adenocarcinoma 5/30/05 following emergency surgery for a bowel obstruction.  I had the right side of my large intestines, 2 foot of small intestines,  lymph nodes, and my right ovary removed.  All were positive for malignancy.  My cancer started inside my small intestines then ruptured the intestinal wall and covered the exterior of my ascending colon and metastisized to my ovary.  I'm told this is a very rare cancer (lucky me). I did 6 months of FOLFOX - (oxciliplatin, leucovorin and 5FU) and Avastin.  My follow-up is a Pet Scan and abdominal CT every 6 months.  I do not have any markers - my CEA level never was over 4.  I had clear scans January 06 however when I had a follow-up CT in June the cancer had returned.I had additional surgery in August full (abdominal hysterectomy and debulking as well as several biopsisies other areas in my abdomen) I went back on chemo in Sept - this time on Folfiri (camptosar, leucovorin & 5FU) plus Avastin.  I just had my Pet Scan and Cat scan last week and will get the results tomorrow.   I've had small bowel follow through but the abdominal CAT scans with contrast seems to give a better view of what is going on.I'm putting up a good fight but this disease is somewhat unpredictable. I don't know if my information is of any help but if you have additional questions or want more detailed information just let me know.Best of luck to you,Aleda  Aleda Mon, 08 Jan 2007 00:00:00 GMT Thank you cansurvivor. I'll keep you posted on this message board as I progress, with progress being the operative word, hopefully.   Best wishes,  Jjberg Tue, 09 Jan 2007 00:00:00 GMT Thank you for your reply Aleda.I will mention your experience with the small bowel follow through to my doctor as I still have not established a baseline because this procedure is apparently only rarely done and they don't have all of the chemicals necessary to do it in a timelymanner.  This is amazing because I live in one of the largest cities in the country! Good luck to you too, Jjberg  Jjberg Tue, 09 Jan 2007 00:00:00 GMT  On 1/5/2007 Jjberg wrote:Hello Everyone: I've had surgery already wherein they removed the right side of my Colon together with the Omentum and some affected Lymph Nodes, hence I'm in Stage 4 with Signet Ring Cell. What's unusual in my case is that they discovered a separate cancer comprised of over 100 small tumors on the inside lining of my small intestine, also of the Signet Ring Cell genre.  Because it is on the inside of my small intestine, it is growing in reverse of the typical cancer which grows inward from the outside of the small intestine.  The result of this is difficulty in doing an appropriate test to develop the base line from which to monitor the progress of the Chemo.  Between the Oncologist and Radiologist, they have come up with a test called the small bowel follow through; however, this test is apparently done very rarely and the effectiveness of it is questionable. I'm wondering if anyone out there is familiar with cancer in the small intestine, growing from the inside out, and of a signet ring cell type and how they might have monitored the progress of their chemo.I've had one chemo session so far with 11 more to go.  My main ingredient is Oloxyplatin (or something like that), something else that they put in me at the infusion center and 5FU which they send me home with using a pump for two days.  My primary question here is about what anyone might know about the test to establish a baseline.  If anyone has any thoughts on the chemo regimen, please feel free to comment.  My closest friend was also just diagnosed with this type of cancer only in her large intesting with spread to her ovary and omentum.  She is on a hunt for any doctor who will give her some hope of a cure or who may be doing any new research.  Any ideas?  She has sent her info to Mayo and MD Anderson and is working on getting in contact with a doctor who is doing some radical surgery in DC invovling removing a great deal of the omentum and organs deemed "not neccessary."  If you have any thoughts please advise.  I wish you well with your treatment. Angiern76 Wed, 31 Jan 2007 00:00:00 GMT Hello,I have been following this post for the last few days and have been hoping someone would post an update on their status.  My sister was just recently, this past Monday (Feb 05), diagnosed with Signet Cell Adenocarcinoma of her Colon.  They removed the right side of her colon, and in the process, both of her ovaries.  The surgery also revealed that the cancer had spread to other lymphnodes around her colon, so she is a stage 4.  The real kicker is that she is only 22!  My family has been in pieces since they have told us.  I have drastically been trying to find every little bit of information I can about this particular type of cancer.  The doctors feel it could be genetic because of her age; the results for this should be coming in the next few days.  If anyone has any more information on this, and their respective treatments, please let me know.  If you also have any knowledge of financial assitance, that would help as well.  She is currently not covered by any insurance, but I am hoping all that will change.  My father has a federal job, as do I, and apparently with a federal job, any children you have are only covered until they're 22, no exceptions!  I think that is just plain ridiculous, especially since she was a full time student.  I am trying to put her in for Medical/Medicare due to the disability factor of a Stage 4 Colon Cancer.  Still, finances is not somethign I want her to be worrying about.  She is still recovering from the surgery, and has already started eating clear liquids as well as jello.  I'm the oldest son, at 25, and am the reassurance for the family.  My parents are first generation immigrants from Cambodia, so their English is a little broken to say the least.  I am just trying to find out any information about this "rare" disease that I can find.  I appreciate any assistance what-so-ever.  Thank you everyone on this board, I have learned quite a bit the past few days of lurking. Concernedbrother Mon, 12 Feb 2007 00:00:00 GMT Cansurvivor,My question to you and anyone else is: how do you go about getting a second opinion?  My mother, aged 75, just had a hysterectomy and appendectomy after having been diagnosed with signet ring. Primary in appendix, spread to ovaries and uterus. Her incision from the hysterectomy won't heal (3 weeks out) due to fluid in a small pocket beneath the incision.  It could take a month. This cancer is said to be aggressive, and I don't believe she can start chemo until it heals. Catch 22. We live in Kentucky, really greater Cincinnati, Ohio. How does one decide where to seek a second opinion?  Do you just call the Mayo Clinic? Is there a list of specialists in this form of cancer somewhere?  Do you need a referral? It's all pretty new and confusing. Brenda444 Tue, 20 Feb 2007 00:00:00 GMT  On 2/12/2007 Concernedbrother wrote:Hello,I have been following this post for the last few days and have been hoping someone would post an update on their status.  My sister was just recently, this past Monday (Feb 05), diagnosed with Signet Cell Adenocarcinoma of her Colon.  They removed the right side of her colon, and in the process, both of her ovaries.  The surgery also revealed that the cancer had spread to other lymphnodes around her colon, so she is a stage 4.  The real kicker is that she is only 22!  My family has been in pieces since they have told us.  I have drastically been trying to find every little bit of information I can about this particular type of cancer.  The doctors feel it could be genetic because of her age; the results for this should be coming in the next few days.  If anyone has any more information on this, and their respective treatments, please let me know.  If you also have any knowledge of financial assitance, that would help as well.  She is currently not covered by any insurance, but I am hoping all that will change.  My father has a federal job, as do I, and apparently with a federal job, any children you have are only covered until they're 22, no exceptions!  I think that is just plain ridiculous, especially since she was a full time student.  I am trying to put her in for Medical/Medicare due to the disability factor of a Stage 4 Colon Cancer.  Still, finances is not somethign I want her to be worrying about.  She is still recovering from the surgery, and has already started eating clear liquids as well as jello.  I'm the oldest son, at 25, and am the reassurance for the family.  My parents are first generation immigrants from Cambodia, so their English is a little broken to say the least.  I am just trying to find out any information about this "rare" disease that I can find.  I appreciate any assistance what-so-ever.  Thank you everyone on this board, I have learned quite a bit the past few days of lurking.HelloI could't believe reading your story I am in the same situation.  My brother was diagnosed just 1 week ago with signet ring cancer of the colon, his has spread through the small and large bowel and into the stomach. He is only 26 years old. The doctors said they cant operate at all and that he has 1 - 2 months life expectancy. He has a permanent colostomy bag.  They are going to try chemo next week. We are all still in shock. I hope you sister is doing ok. As you did, I am trying to research as much as possible on this terrible disease. Did your sister find out if it was genetic? Did she go through chemo? Was she given a time frame? Did she follow a strict diet (natural organic foods)? I would really appreciate hearing how your sister is going and any other information, as I havn't really been able to find much.Thanks Louise      Louise29 Sat, 03 Mar 2007 00:00:00 GMT My boyfriend was recently diagnosed with signet ring in his colon at 22 years old!!  It's crazy to see so many people posting about this cancer at such young ages.  He has no family history of cancer either which confuses the doctors.  He's currently going through chemo and Avastin and it seems to be working since his acites hasn't built up and his pain is decreasing.  We're just all praying for surgery now. Sensi Sun, 11 Mar 2007 00:00:00 GMT I am sorry to hear about your boyfriend.  We are in the same situation my brother inlaw just started chemo last week but he still has a lot of pain. Was your boyfriend given a time frame? He was told 1 to 2 months. The doctors told us there was no chance of operating, we dont understand, if the chemo shrinks the cancer surely they can operate. The doctors say that its hereditry but there is no one in the family with any cancer. My husband is having a colonoscopy in three weeks to get checked out. Hopefully all is ok, he is 29. Louise29 Mon, 12 Mar 2007 00:00:00 GMT He was given 6 months. The doctors also said they thought its hereditary but no one else has cancer - everyone got a colonoscopy and there was no sign of anything.  After a laprascopy they said that they can't operate because it had spread in his abdominal lining but that if chemo goes well he may still have surgery.  Just keep hoping for it.   Sensi Tue, 13 Mar 2007 00:00:00 GMT Thanks that helps hearing that they are going through the same things and it sound like you are a great support.  How long since your boyfriend was diagnosed? How often does he have the chemo? My brother inlaw is only getting one full day chemo every three weeks for three treatments. Does he have a colostomy bag and if so is it permanent? He does and its there for good. Sorry for all the questions but I am trying to research as much as possible into this terrible disease.  Its been really hard for my husband but to hear other positive stories does help him a little bit and gives us a bit more hope.  Louise29 Tue, 13 Mar 2007 00:00:00 GMT This is very similar to my husband's situation.  He was diagnosed in August of last year.  His is signet ring cell and mucinous adenocarcinoma of the terminal ileum.  Yuck.  Round one of chemo over next week, but with the PET I insisted on because his CEA's were rising, we have a recurrence (or perhaps it was ever all taken out with surgery?).  NOW WHAT???????  Sickofitall Mon, 19 Mar 2007 00:00:00 GMT hey, I replied to you personally. Just check your personal messages part for all the info.Good luck!  Sensi Tue, 20 Mar 2007 00:00:00 GMT Hi wondering how you are doing and hope this finds you doing well.  My 30 year old niece is dealing with appendix adenocarcinoma/signet ring cell.  She has been dealing with horrific rare disease for 2 years and just had her 2nd major surgery.  When you were treated did you do any alternative or complentary treatment?  Before, during, after?  Have you heard anything abour cancer treatment centers of america?  Does your oncologist open to complimentary treatment?  I have much information and many, many websites.  Please share any information you can.Thank you so much.  Gemini2 Wed, 03 Oct 2007 00:00:00 GMT  On 1/8/2007 Cansurvivor wrote:I also have Signet Ring Carcinoma. My cancer was found in my appendix with a tumor on my right ovary. I was on Oxciliplatin, Leukevorin, and 5FU for about 10 months until I had an allegic reacation (difficulty breathing). But it did work for me, at least for a while. I have been off chemo for three years and just recently have the doctors seen an increase in my CEA level. That is the tumor marker they are using to monitor my cancer. I return to the Mayo Clinic in Minnesota in February for another CEA test and a PET scan. If nothing shows and my CEA is still high, then I will have exploritory surgery.Would love to hear more about your experience. Dear Cansurvivor,  Thanks so much for your message, my Mom was recently (9/2007) diagnosed with signet cell cancer in the right of large instentines and found in the lymph in blood flow to this part of her colon.  there were 2 small tumors in the stomach cavity found.  All this has been removed.  To prevent any further tumor growth, the oncologist was certain that there were cancer cells around which would start growing, anyway to prevent tumors from growing the oncologist has recommended fulfox (48 hr drip, 12 treatments, every other week), plus a 2 hour drip (not sure what the is) and then a cell inhibitor.  She starts her first one this coming Monday in the hospital for at least 48 hours plus the time to get a port planted.   I see that you discuss CEA tests, do you have any information regarding these tests.  The oncologist stated that there was no test to monitor how the chemo was working.  I am so glad that things have been going well for you and all the best in your upcoming tests.  Sending good thoughts and energy.  Thank you so much Brownie  HelpHope Thu, 25 Oct 2007 00:00:00 GMT JJberg is my Dad, this last Tuesday he had to undergo surgery again and the cancer has spread thru his Bile Ducts planted itself in his stomach and is all over his intestines.  It has come back more aggressive than ever and the surgeon advised it was time to get things in order.  My  Dad is in a lot of pain and is having a more difficult time with healing from this surgery.  My Dad has had an amazing year since first diagnosed with Stage 4 Signet Ring Cell Carsinoma with two seperate cancers intenstinal and colon. My Dad wants to do Chemo again, what a fighter and trooper.  Can anyone outthere tell me if there's any hope that My Dad will be able to survive another year or more.  I don't know much of cancer and I know I'm grasping at straws but I'd like to hear others experiences.  I just want my Dad to have quality life and to get some relief from the pain he's been in the last several months.     Dads girl Fri, 16 Nov 2007 00:00:00 GMT The first posting was my jjberg Jeff Eisenberg it is with great sadness that I post he lost his battle with cancer on April 07 2008.Thank you to everyone that replied to his posting, my thoughts are with all of you and your loved ones.   Dads girl Fri, 02 May 2008 00:00:00 GMT