CancerCompass message board discussion started by 2ndtimer on 9/6/2007 http://www.cancercompass.com/message-board/message/all,15926,0.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/ There is no category on this site for small bowel cancer, although I have found a forum on it at another site.  Is it possible to open a new category for small bowel cancer?  It is rare and patients are searching for answers and support.  If anyone reading this is interested please post a message and perhaps consideration will be given to adding small bowel cancer to this site.  I believe there is a need for it.Thanks.2ndtimer 2ndtimer Thu, 06 Sep 2007 00:00:00 GMT My husband is waiting for his biopsy to come back on suspected cancer in his duodenum.  They say it is rare.  He also has a rare form of lung cancer!  You are so right there is very little written on small intestine cancer.  Keeping fingers crossed that the blockage is benign. Iqfem Sun, 28 Oct 2007 00:00:00 GMT Hi lqfem,I hope you have received a good result from your husband's biopsy.  If you need more info on it I know of a site with a message board containing lots of information from other patients with small bowel cancer.  But hopefully it is benign and you won't need to go there.  People care so let us know how things are going.Lynn  2ndtimer Mon, 19 Nov 2007 00:00:00 GMT My husband was diagnosed in Aug of 06 with cancer of the terminal ileum.  There is very little info out there.  The oncologist even said that he had difficulty.  He treated it like colon cancer, since the terminal ileum (last third of the small bowel) is right before you get to the colon.We are now on round two.  A recurrence was found last week, in basically the same place, but now outside the ileum.  What I have found is that small bowel cancers are very rare, about 2% of cancers reported are small bowel.  The most common sbc is adenocarcinoma, which most often occurs in the duodenum (first third of the sb).  So, since my husband's is in the ileum, it must be even rarer than most?They are also very aggressive.I would love a small bowel category on this site.  I have been posting mainly to and reading in colon cancer category.LeeAnne Sickofitall Sun, 08 Jun 2008 00:00:00 GMT  On 6/8/2008 Sickofitall wrote:My husband was diagnosed in Aug of 06 with cancer of the terminal ileum.  There is very little info out there.  The oncologist even said that he had difficulty.  He treated it like colon cancer, since the terminal ileum (last third of the small bowel) is right before you get to the colon.We are now on round two.  A recurrence was found last week, in basically the same place, but now outside the ileum.  What I have found is that small bowel cancers are very rare, about 2% of cancers reported are small bowel.  The most common sbc is adenocarcinoma, which most often occurs in the duodenum (first third of the sb).  So, since my husband's is in the ileum, it must be even rarer than most?They are also very aggressive.I would love a small bowel category on this site.  I have been posting mainly to and reading in colon cancer category.LeeAnneLeAnne,I have requested a category for small bowel cancer on this site, too, but don't know what is required before one will be established.  Try doing a google search for rare cancers or small bowel cancer and you might find Rare Cancer Alliance which has a forum for small bowel cancer.  I hope I'm able to mention another site here, afterall, this is all about helping people, and the info we need is not offered on this site.Sorry about your husband's recurrence.  Having a rare cancer is extremely frightening.  I was diagnosed with sbc almost 2 years ago (adenocarcinoma near the duodenojujunel junction, however it is spelled).  I now have either an ulcer or tumor in the sb, in the lower part they think.  It did not show up on scans and they can't tell from the capsule endoscopy (pillcam) exactly where it is located.  I'm seeking a 2nd opinion before having surgery since I have now found out how dangerous the surgery is.   Did your husband have surgery again and what kind of chemo is he taking this time?  You'll both be in my prayers as you go through this a 2nd time.Lynn          2ndtimer Sun, 08 Jun 2008 00:00:00 GMT i would like to discuss about duodinal adeno carcinoma. thalayur Mon, 14 Jul 2008 00:00:00 GMT  On 7/14/2008 thalayur wrote:i would like to discuss about duodinal adeno carcinoma.I had it 2 years ago.  I had surgery and 6 months of Folfox.  I'll be happy to share with you, either openly here or you can send a private reply.  Your choice.  This site still does not have a separate category for small bowel cancer.  I do know of another board that has a section for small bowel cancer and you can gets lots of info and support there.  Are you the patient or caregiver?  Hope to hear from you.Lynn   2ndtimer Mon, 14 Jul 2008 00:00:00 GMT thank you for the response,i am the care giver. my husband had whipples surgery for duodinal adeno carcinoma(T4 N1 MX) 2 months ago. since node involvement he is on chemo now. oxaliplatin  IV 3 weekly, coupled with XELODA 1 gm twice daily for two weeks. 2nd of 6 courses over. i would like to here from u all possible details regarding prognostic expectations and news from survivers. also kindly send me the link providing detaila of this rare situation              waiting to here from you                                                 thalayur  thalayur Fri, 18 Jul 2008 00:00:00 GMT Hi Thalayur,My chemo was Folfox (oxaliplatin and 5fu), 12 treatments that ran for 48 hours every other week, taking approximately 6 months.  Side effects were cold sensitivity which worsened as treatment progressed, but went away totally after chemo ended.  Another side effect is numbness and tingling in hands and feet.  Watch for that, too.  Mine did not start until after chemo ended.  It usually goes away, too, but in my case it improved but did not completely go away.  I also developed some lung problems after chemo ended, which is not normal, but it went away and is no longer a problem.  I understand your curiosity about stats for survival.  Small bowel cancer is rare so there are not that many cases to study and since testing for it is difficult, quite often the disease has progressed before it is found, resulting mostly in poor prognoses.  I looked up the survival rates when I was first diagnosed and it was not good, so I put it out of my mind and don't remember the rates.  I decided to focus on the possibility of being a survivor and not let negative numbers and negative thoughts take over.  There are always exceptions to the statistics - therein lies our hope.  If you really need to know your husband's prognosis ask his doctor.  He can give you a better idea based on your husband's specific case.  The other board that has a section specifically on small bowel cancer is Rare Cancer Alliance.  Do a google search and it should be there.  You will need to register but it is free and there are lots of caring and supportive people there, just like on this Cancer Compass site.  There are success stories that might give you hope and also some posts by people who have had successful whipple surgery.  Good luck to both of you.Lynn  2ndtimer Fri, 18 Jul 2008 00:00:00 GMT hai Lynn,             I had send details regarding my husband's condition. that messege is not seen here,hence repeating--  he had wipples surgery for adeno ca of duodinam, 2 months ago. now on chemo, he had 'T4-N1-Mx' stage. i would like to here from survivers of such condition, also help me with any links to guide me through this rare condition and it's possibilities. hope you are doing well.                                         yours with prayers thalayur  thalayur Sat, 19 Jul 2008 00:00:00 GMT Thank you very much, Lynn, though I heard only negatives from his doctors,I feel charged after reading your message. exceptions are there always, and let us hope we will be in the success percentage. after all God is ultimate, just like how it grew so much without any hint ,he can keep it away,if he wills. still we should look for the human possibilities and put in our effort. thank you once again and hoping to here from you often                                                          thalayur  thalayur Sat, 19 Jul 2008 00:00:00 GMT Hi Thalayur,Glad the info helped.  You are so right that God can heal and while He is doing His work we need to be doing our part to stay positive, have treatment and follow-up testing, pray, and get well.  I'm just now starting on my 3rd year since diagnosis.  There are others on Rare Cancer Alliance who have been longer than me.  I hope treatment isn't too hard on your husband.  From what I hear Whipple surgery can be pretty hard on a person so it's a good sign that your husband has gotten through that.  Remember to take care of yourself, too.  It can be stressful on the caregiver, too.  Keep us posted, take care and God bless.Lynn  2ndtimer Sat, 19 Jul 2008 00:00:00 GMT Dear Lynn,             Releaved to be in touch with you.very encouraging in my desparate situation i am registering in rare cancer group as well. sorry for my language problem. but I feel basic human mind is communicative than the language!                                   thalayur   thalayur Sun, 20 Jul 2008 00:00:00 GMT Lynn,Thanks for your reply.  I haven't been checking this particular thread, so I didn't realize that you had posted.Brian did have surgery...turned out to be a waste of time.  He was first diagnosed in Aug 06.  That surgery removed the cancer.  He underwent the chemo in order to reduce the chance of recurrence.  That was a waste of time, too.  Cancer recurred even faster than it was supposed to if he didn't have the chemo.The recurrence was first noticed on a PET in Jan 08.  At that time it was 6 mm, and was monitored..not confirmed as cancer.  In Mar it had doubled in size.  At that time endoscopy was ordered.  Nothing found.  Then exploratory surgery was scheduled for May 29.  The surgery found that it was now golf ball size, and attached to the femoral artery.  They couuldn't remove it.   July 7th he started a combo chemo/radiation treatment five days a week for five weeks.  The chemo was too strong for his heart.  So, he was taken off of it until they decided what new dose to put him on.  He continued radiation during that time.  Tomorrow (Jul 21) he re-starts the lower dose of chemo.He is supposed to finish radiation in 3 weeks.  Then they will PET again to see how effective it was.  After that time he is supposed to switch to iv chemo.Thank you for your reply... What did your 2nd opinion find?LeeAnne Sickofitall Sun, 20 Jul 2008 00:00:00 GMT  On 7/20/2008 Sickofitall wrote:Lynn,Thanks for your reply.  I haven't been checking this particular thread, so I didn't realize that you had posted.Brian did have surgery...turned out to be a waste of time.  He was first diagnosed in Aug 06.  That surgery removed the cancer.  He underwent the chemo in order to reduce the chance of recurrence.  That was a waste of time, too.  Cancer recurred even faster than it was supposed to if he didn't have the chemo.The recurrence was first noticed on a PET in Jan 08.  At that time it was 6 mm, and was monitored..not confirmed as cancer.  In Mar it had doubled in size.  At that time endoscopy was ordered.  Nothing found.  Then exploratory surgery was scheduled for May 29.  The surgery found that it was now golf ball size, and attached to the femoral artery.  They couuldn't remove it.   July 7th he started a combo chemo/radiation treatment five days a week for five weeks.  The chemo was too strong for his heart.  So, he was taken off of it until they decided what new dose to put him on.  He continued radiation during that time.  Tomorrow (Jul 21) he re-starts the lower dose of chemo.He is supposed to finish radiation in 3 weeks.  Then they will PET again to see how effective it was.  After that time he is supposed to switch to iv chemo.Thank you for your reply... What did your 2nd opinion find?LeeAnneLeeAnne,Sorry for what you and your husband are going through.  It can be so discouraging, but just keep fighting and don't give up.  You never know when the next test might come out clean and clear and you'll then know that they found a treatment combo that is working for him.  Keep thinking of the possibility of the radiation shrinking the tumor and the next chemo finishing it off and killing any stray cells lurking around.  I had my surgery 4 weeks ago.  It turned out to be a bleeding ulcer in the small bowel.  They removed that section and then scoped the whole small bowel looking for anything suspicious, since my small bowel cancer was 2 year ago.  They assumed it was back.  The surgeon had planned a liver biopsy as well, but didn't do it because the surgery had already taken 6 hours.  Guess he'll do a needle biopsy later if my liver enzymes continue being elevated.  I was lucky that the chemo was effective for me and I hope and pray that they find an effective combination for your husband.Have I mentioned Rare Cancer Alliance to you?  It has a separate category for small bowel cancer as well as colon cancer.  Please excuse my memory, or lack of it!Lynn  2ndtimer Tue, 22 Jul 2008 00:00:00 GMT Lynn,I did get your message about Rare Cancer Alliance and signed up on Sunday night.  Thanks for that. While a bleeding ulcer is not fun, it is good that it was not anything worse than that.  I will continue to pray for your health. LeeAnne Sickofitall Tue, 22 Jul 2008 00:00:00 GMT