Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Hi I was diagnosed with CLL in 2003 and probably had the disease since 2000. I have multiple nodes and enlarged spleen but since contracting Gilberts my WBC is down to 14, some of the nodes are getting smaller and my spleen has reduced in size. I have not had a cold or infection for 3 years and my Dr is thinks I should start Chemo but I am reluctant since I have been so well and my WBC is lower now than 2 years ago. Gilbert's Syndrome > > Dear Group: > I was dx'd with CLL in '96, and fortunately have remained Stage 0 since > then (so far !!) > I also have an heriditary non-disease called " Gilbert's Syndrome, " which > means my billirubin is mildly elevated. > Some new research has suggested that billirubin is a strong antioxidant, > with properties of cell protection. > I am wondering how many other CLL patients may have Gilbert's, and if this > has had a bearing on their CLL status. > I would welcome hearing from others concerning this topic. > Thanks, and I wish good health to all ! > -----Bill > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 Hi , Thanks for your reply. I'm glad your CLL symptoms are improving. I was motivated to put my inquiry to this CLL Research Group because my doctors seem defensive when I bring up my Gilbert's Syndrome and tend to discount my questions. But all the new research on bilirubin has made me very interested in how this may be affecting my own CLL/Gilbert's status. I certainly would like to hear from others about this topic. Meanwhile I'm going to include the address of a site and article explaining the new bilirubin research for those who may be interested. Also, others may want to check their own labs to see if they may have a persistent mildly elevated bilirubin, which their doctors could check to see if they have Gilbert's Syndrome. I welcome all information and responses about this. Thanks, --Bill http://www.eurekalert.org/pub_releases/2002-11/jhmi-lym112202.php Gilbert's Syndrome > > >> >> Dear Group: >> I was dx'd with CLL in '96, and fortunately have remained Stage 0 since >> then (so far !!) >> I also have an heriditary non-disease called " Gilbert's Syndrome, " which >> means my billirubin is mildly elevated. >> Some new research has suggested that billirubin is a strong antioxidant, >> with properties of cell protection. >> I am wondering how many other CLL patients may have Gilbert's, and if >> this >> has had a bearing on their CLL status. >> I would welcome hearing from others concerning this topic. >> Thanks, and I wish good health to all ! >> -----Bill >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2005 Report Share Posted April 9, 2005 Maybe you guys with Gilbert's Syndrome should ask these questions on the ACOR Listserve you could also ask Dr Hamblin for some advice. I feel you would stand a better chance of an informed answer. Be well, Jim McVey Gilbert's Syndrome > > Dear Group: > I was dx'd with CLL in '96, and fortunately have remained Stage 0 since > then (so far !!) > I also have an heriditary non-disease called " Gilbert's Syndrome, " which > means my billirubin is mildly elevated. > Some new research has suggested that billirubin is a strong antioxidant, > with properties of cell protection. > I am wondering how many other CLL patients may have Gilbert's, and if this > has had a bearing on their CLL status. > I would welcome hearing from others concerning this topic. > Thanks, and I wish good health to all ! > -----Bill > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 I'm interested in the recent comments regarding Gilbert's Syndrome, the benign inherited condition of mildly elevated bilirubin which affects 1% of the population, and how it might have a protective effect on CLL. I have both CLL and the harmless Gilbert's syndrome. The Gilbert's was only diagnosed by my haematologist a few months after my CLL diagnosis three years ago because he queried my elevated bilirubin after oral chemotherapy had restored all other counts except the bilirubin. Now my baseline bilirubin is about 35-45 umol/L. Normal range is 2-20. If it goes over 50 then my haem-onc monitors the liver function blood tests more carefully. I also believe my late mother who had CLL and died of a Richter's transformation to acute lymphoblastic leukaemia might also have had Gilbert's syndrome because we both have/had off-white eye colouring and off-white slightly yellowish teeth, which I think might be characteristic of Gilbert's syndrome. It's just my guess based on the yellowish look of my mild jaundice - I feel that it also shows up in teeth and whites of eyes. Of course there are also many people in the community with the harmless Gilbert's who do not have CLL, and other reasons for slightly yellowish teeth. Most Gilbert's in the community would remain undiagnosed unless people had reason to have regular liver function blood tests. I remember this query about Gilbert's syndrome coming up a couple of years ago and the ACOR CLL Archives would have a few more comments/incidences. Jeanette in Melbourne, Australia Currently having FCR treatment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 I am a little late responding about Gilbert's Syndrome. Mine was detected some 15 years before I was diagnosed (no one gave it a name at the time). It's as good a time as any to remind list members that we do not have an accurate count of CLL incidence and that is the reason for the CLL Patient Database (http://patientdatabases.org). We have a good chance of making the CLL PDB reflect a far more representative sample than is presently possible. Once we do that we would ask statistical experts to help us explore possible relationships with the Syndrome, prognostic markers, treatment, etc. Volunteer to help, register if you have not, and update that blood and treatment data. Peace and health to all, Irene (L ) (President, Patient Databases) Quote Link to comment Share on other sites More sharing options...
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