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Melanoma Recurrence in the Small Intestine

Forums Cutaneous Melanoma Community Melanoma Recurrence in the Small Intestine

  • Post
    kd4cht
    Participant

      I was diagnosed with a melanoma skin cancer on my abdomin back in May 2006.  I had a kidney transplant in April 1999.  When Dr.  Ollilla did surgery to remove the melanoma and 1 cm of skin around the melanoma he also removed a lympthnode.  The patholegist report showed that he got all of the melanoma and the lympthnode was negative.  Now in December 2010 my kidney doctor(Dr. Dunmire) noticed that I might be anemic.  So he did a blood test and sure enough I was very anemic.

      I was diagnosed with a melanoma skin cancer on my abdomin back in May 2006.  I had a kidney transplant in April 1999.  When Dr.  Ollilla did surgery to remove the melanoma and 1 cm of skin around the melanoma he also removed a lympthnode.  The patholegist report showed that he got all of the melanoma and the lympthnode was negative.  Now in December 2010 my kidney doctor(Dr. Dunmire) noticed that I might be anemic.  So he did a blood test and sure enough I was very anemic.  He sent me home with stool sample cards and when I returned them they all 3 tested positive for blood in the stool.  I contacted my transplant coordinator and UNC Hospitals and she got me an appointment with the G.I. Clinic.  They examined me and set me up for an endoscopy and colonoscopy.  Those tests did not find any cancer.  At my follow up appointment I was told that the biopsies came back as normal.  So next they had me do a small bowel endoscopy.  That found something.  They had me admitted to the hospital.  They took X-rays, did a PET/CT scan, and another endosocpy.  The PET/CT scan showed a hotspot in my small intestine area.  The endosocpy did not find any cancer.  The G.I. doctors don't think they got biopsies of the right area.  So I get to have another colonoscopy, and they are going to try to get to the area from the colon to get biopsies.

      The head of G.I. clinic said that melanoma could come back to the bowles, but it was rare.  After reading some on this web site I am starting to wonder how rare it is.

      The doctors will not say one way or the other if it is cancer, but I have a feeling it is.  The weird thing is I have had no pain.  Just the anemia.  I imagine that I will have to have surgery on my small intestine to remove the tumor, but the doctors have not said much about that yet.

      Has anyone had a similar experience?

       

      Thanks,

       

      Alan

    Viewing 7 reply threads
    • Replies
        MichaelFL
        Participant

          I can't recall that this has been discussed here recently, but if you go to:

          http://forum.melanomaintl.org/toastforums/toast.asp?action=posts&sub=search&fid=-1&author=ian09&subject=&message=&dayprune=-1&submit.x=31&submit.y=17

          you will find many posts by someone called Ian09 who has dealt with similar issues and is currently on Ipilimumab (also known as MDX010 or MDX-101).

          Good luck,

          Michael

          MichaelFL
          Participant

            I can't recall that this has been discussed here recently, but if you go to:

            http://forum.melanomaintl.org/toastforums/toast.asp?action=posts&sub=search&fid=-1&author=ian09&subject=&message=&dayprune=-1&submit.x=31&submit.y=17

            you will find many posts by someone called Ian09 who has dealt with similar issues and is currently on Ipilimumab (also known as MDX010 or MDX-101).

            Good luck,

            Michael

            Jim M.
            Participant

              I had a weird last couple of weeks( I'm stage 3C and the tumor was in the right axillary). First something was identified in the end of the small bowel (ileum). It was described as , "a distended tubular structure filled with soft tissue density". Then nothing showed up on the small bowel follow through. Next the PET Scan was negative. All the time I'm experiencing bloating after every meal. Tomorrow I will see the surgeon who did the lymph node dissection on me. My oncologist wants his opinion. Should be interesting. I can't imagine he would want to cut on me.

               God Bless,

               Jim M.

                kd4cht
                Participant

                  I had the colonoscopy done last Monday.  The doctors wanted to get into the small intestine via the colon.  They found the narrowing that the small bowel endoscopy showed.  It was at the end of my small intestine where it connects to my colon.  They could not get the scope through it, but they were able to get a ton of biopsies on both sides.  I got a call from my doctor last night with some good news.  The biopsies did not show cancer.  She thinks it is just inflammation.  The team still doesn't know what exactly is causing this, but they are still looking into it further.  I have to get a C.T. scan done sometime next week.

                  kd4cht
                  Participant

                    I had the colonoscopy done last Monday.  The doctors wanted to get into the small intestine via the colon.  They found the narrowing that the small bowel endoscopy showed.  It was at the end of my small intestine where it connects to my colon.  They could not get the scope through it, but they were able to get a ton of biopsies on both sides.  I got a call from my doctor last night with some good news.  The biopsies did not show cancer.  She thinks it is just inflammation.  The team still doesn't know what exactly is causing this, but they are still looking into it further.  I have to get a C.T. scan done sometime next week.

                  Jim M.
                  Participant

                    I had a weird last couple of weeks( I'm stage 3C and the tumor was in the right axillary). First something was identified in the end of the small bowel (ileum). It was described as , "a distended tubular structure filled with soft tissue density". Then nothing showed up on the small bowel follow through. Next the PET Scan was negative. All the time I'm experiencing bloating after every meal. Tomorrow I will see the surgeon who did the lymph node dissection on me. My oncologist wants his opinion. Should be interesting. I can't imagine he would want to cut on me.

                     God Bless,

                     Jim M.

                    ockelly
                    Participant

                      Alan

                      If this does turn out to be a melanoma recurrence in the small bowel you should know that there is strong evidence that a successful small bowel resection can keep you NED for a long long time (I hesitate to say forever but I was told that by a highly regarded melanoma research onc at UW).  So choose your surgeon carefully and get it out of there asap!!!

                      Kelly

                      ockelly
                      Participant

                        Alan

                        If this does turn out to be a melanoma recurrence in the small bowel you should know that there is strong evidence that a successful small bowel resection can keep you NED for a long long time (I hesitate to say forever but I was told that by a highly regarded melanoma research onc at UW).  So choose your surgeon carefully and get it out of there asap!!!

                        Kelly

                        CKasper
                        Participant

                          In December of 2009 I had a PET scan which showed a "hot spot" in my small intestine.  I/m melanoma Stage IIIB,  when they did the upper colonoscopy it came back clear.  PET scans while very very expensive are not always correct.

                          What happend next is…..I somehow contracted candida and it went from y throat all the way into my stomach and it took six months before that was resolved.  It just goes with have this rotten disease.

                           

                          C.

                            TimG
                            Participant

                              Back in 2003 I had 2 percent of the small intestine removed.  Then in 2008 had tumor in the bowl and had it removed.They told me in 2008 it was not common, but with melanoma you never know where it goes.  Since 2008 I have had tumors removed from the Neck, top of head under the skin, and the Brain.  Currently have a few tumors.  I was at NCI in Bethesda, MD in 2010.  I did TIL with Dr Rosenberg. In Dec 2010 I showed signs of  tumor growth so I started Yervoy ( Ipilimumab) in Jan.  My Last dose is Wed march 30, then in 2 weeks scans to see.

                              There is now so much in the pipeline for melanoma.  We need to stay positive. 

                              Living with melanoma since 1984, I have many options today.  There is hope.

                               

                              Tim               

                              TimG
                              Participant

                                Forgot to add that I was anemic from 2003 to 2008.   I had many Blood and Iron Transfusions.   After the surgery 2008, I have not had a problem with  anemia .

                                 

                                Tim

                                TimG
                                Participant

                                  Forgot to add that I was anemic from 2003 to 2008.   I had many Blood and Iron Transfusions.   After the surgery 2008, I have not had a problem with  anemia .

                                   

                                  Tim

                                  CKasper
                                  Participant

                                    I contracted Melanoma in 1984 too!  When I had my recurrence my doctor was shocked at how long I have had this disease.  Its nice to know that are others out there with longevitiy….I hope it gives hope to the new people who are now dealing with this disease. 

                                    Since my recurrence I have had so many many things go wrong and so many procedures its mind boggling, but I'm still  here.

                                     

                                    C

                                    CKasper
                                    Participant

                                      I contracted Melanoma in 1984 too!  When I had my recurrence my doctor was shocked at how long I have had this disease.  Its nice to know that are others out there with longevitiy….I hope it gives hope to the new people who are now dealing with this disease. 

                                      Since my recurrence I have had so many many things go wrong and so many procedures its mind boggling, but I'm still  here.

                                       

                                      C

                                      TimG
                                      Participant

                                        Back in 2003 I had 2 percent of the small intestine removed.  Then in 2008 had tumor in the bowl and had it removed.They told me in 2008 it was not common, but with melanoma you never know where it goes.  Since 2008 I have had tumors removed from the Neck, top of head under the skin, and the Brain.  Currently have a few tumors.  I was at NCI in Bethesda, MD in 2010.  I did TIL with Dr Rosenberg. In Dec 2010 I showed signs of  tumor growth so I started Yervoy ( Ipilimumab) in Jan.  My Last dose is Wed march 30, then in 2 weeks scans to see.

                                        There is now so much in the pipeline for melanoma.  We need to stay positive. 

                                        Living with melanoma since 1984, I have many options today.  There is hope.

                                         

                                        Tim               

                                      CKasper
                                      Participant

                                        In December of 2009 I had a PET scan which showed a "hot spot" in my small intestine.  I/m melanoma Stage IIIB,  when they did the upper colonoscopy it came back clear.  PET scans while very very expensive are not always correct.

                                        What happend next is…..I somehow contracted candida and it went from y throat all the way into my stomach and it took six months before that was resolved.  It just goes with have this rotten disease.

                                         

                                        C.

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