Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Hi Stevie, I don't want to be an alarmist, but at the same time I don't want to say nothing. My CA19-9 has also been elevated, but only to 39 (with normal being less than 35). So I started reading about cholangiocarcinoma (CCA) & CA19-9. From what I've read, anything over 100 is a clear warning sign of cancer. The unfortunate thing is that once the CA19-9 goes over 100 (or 129), the cancer is not only probably present, but it's well advanced (not a good thing at all). If your boy has not yet had a CT scan or ERCP then I'd insist on it. I would even consider taking him to the Mayo Clinic to be evaluated. Once cancer (CCA) is present (and advanced), it is very difficult to get a liver transplant. Let the group know if you want more information on this, or more guidance. -Marie > >Reply-To: >To: >CC: >Subject: Re: CA19-9 >Date: Wed, 20 Jun 2007 13:05:12 -0500 > > >Coincidentally, they have been monitroing my little boys cA-19 tumor marker >which can be elevated if there is cancer in the ducts. I believe the >normal range is under 35 at least for children. Tyler's was 97 and has >increased to 117. They say that this can be eleavated because of >inflammation and that they are not too concerned at this time. We are >re-testing in two-three months. They say that when cancer is present it >normally is in the high 100's......That was our experience anyway.. Hope >it helps..... > > > > > _________________________________________________________________ Picture this – share your photos and you could win big! http://www.GETREALPhotoContest.com?ocid=TXT_TAGHM & loc=us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 I would consider getting a second opinion from the Mayo Clinic. There are 3 locations for the Mayo: Rochester, MN; ville, FL & one in Arizona. You can look up the Mayo Clinic on line, and specifically for PSC liver cholangiocarcinoma. There should then be a way to contact one of the hepatologists. Hope this helps. -Marie > >Reply-To: >To: >Subject: Re: CA19-9 - Stevie >Date: Fri, 22 Jun 2007 12:36:34 -0500 > >You are not being an alarmist!!! I appreciate it. What they told me was >that if it is elevated in adults, it is a real concern but with children >not soo much. The doctors claim it is from inflammation. But, I have been >reading up on it too and it does concern me. He did have an ERCP in >February and a recent cat scan but I am not sure they were looking for that >in particular. The ERCP was to daignose the PSC and the cat scan to look >for a tumor in his bellybecause his UC was not under control. Perhaps, I >need to request another one but what am I asking them to look for if I >insist? Any more info would help...Thanks so very much!!! > > > >sgedgaud@... > > > > " Marie Nilsson " > <marie_nilsson17@ > msn.com> To > Sent by: > @yahoo cc > groups.com > Subject > Re: CA19-9 - Stevie > 06/21/2007 09:03 > AM > > > Please respond to > @yahoo > groups.com > > > > > > >Hi Stevie, > >I don't want to be an alarmist, but at the same time I don't want to say >nothing. My CA19-9 has also been elevated, but only to 39 (with normal >being >less than 35). So I started reading about cholangiocarcinoma (CCA) & >CA19-9. >From what I've read, anything over 100 is a clear warning sign of cancer. >The unfortunate thing is that once the CA19-9 goes over 100 (or 129), the >cancer is not only probably present, but it's well advanced (not a good >thing at all). If your boy has not yet had a CT scan or ERCP then I'd >insist >on it. I would even consider taking him to the Mayo Clinic to be evaluated. > >Once cancer (CCA) is present (and advanced), it is very difficult to get a >liver transplant. > >Let the group know if you want more information on this, or more guidance. > >-Marie > > > > > >Reply-To: > >To: > >CC: > >Subject: Re: CA19-9 > >Date: Wed, 20 Jun 2007 13:05:12 -0500 > > > > > >Coincidentally, they have been monitroing my little boys cA-19 tumor >marker > >which can be elevated if there is cancer in the ducts. I believe the > >normal range is under 35 at least for children. Tyler's was 97 and has > >increased to 117. They say that this can be eleavated because of > >inflammation and that they are not too concerned at this time. We are > >re-testing in two-three months. They say that when cancer is present it > >normally is in the high 100's......That was our experience anyway.. Hope > >it helps..... > > > > > > > > > > > >_________________________________________________________________ >Picture this – share your photos and you could win big! >http://www.GETREALPhotoContest.com?ocid=TXT_TAGHM & loc=us > > > > > Quote Link to comment Share on other sites More sharing options...
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