Hairy Cell Leukaemia - Chemo and Liver Function tests !
1 minute read time.
FormerMember
Hi
I have been a member on this site for a while but haven't posted anything before, I was diagnosed with Hairy Cell Leukaemia in July this year and following two different treatments I am having problems with the results of my Liver Function blood tests.
Perhaps I should provide a little more background, I have just turned 40, married with two children - following a blood test in May last year it was noticed that my blood counts were irregular and so the chain of events began which led to my diagnosis and with out doubt the biggest shock of my life !
The main thing I remember from that day is when my consultant told me ' That if you are to get Leukaemia then this is the one to get ' !! - this was the only crumb of comfort and I remind myself of his words on a regular basis.
I started treatment on Cladribine in September but this was stopped after 3 treatments as my ALT and AST Liver function tests were too high.
I was then moved to Pentostatin which I started in November and after 2 treatments I have suffered the same problems with my Liver Function Tests and they have postponed treatment again - I am scheduled to undergo further specialist blood tests this week but I am unclear what they are for as I haven't yet been able to speak to my consultant.
The main thing I am really struggling with is that we were assured this was a very treatable disease and yet I have now had the main two treatments and was unable to complete either - This is emotionally draining for not only me but my wife and family as the uncertainity of not knowing what will happen next is really hard.
I would be interested to hear from anyone with experience of the LFT problems or any HCL experiences which would give us some positive thoughts on the future ahead.
Thanks
Jamesy
FormerMember
I was diagnosed with HCL in January 08.
A typical male ignoring all symptoms. Breathing difficulties, very anaemic, bruising & cold in my fingers & toes.finding excuses for all the symptoms.
The catalyst was a blood vessel bursting in my right eye.
To cut a long story short, I went to the opticians who referred me to the hospital the next day. Blood test on a friday morning, rushed into hospital that night via the police calling at the house & an ambulance to A&E.
Blood transfusions, bone marrow biopsy followed by the diagnosis. Probably the most memorable moment I will have in my life time.
Due to my condition I had to inject Interferon for what I was told would be for atleast a couple of months, but actually I only had to inject in the end for three weeks. I was told that if I had chemo straight away that it would harm me by attacking my organs, making me even sicker. Over the next six months I had two courses of Cladribine & a four week course of Rituximab. My spleen enlarged to twice it's normal size.
Went back to work at the end of August. Found it hard at first, mainly being tired. Gradually got over it & life has gone back to normal.
During this time I have got engaged & I will be getting married on the 9th May this year. Life is good & long may it continue.
Now when I look back, I can't believe what had happened to me & sometimes I wonder if it is only a dream, but I know it isn't. All through my treatment & recovery I had nothing but positive thoughts which I feel has held me in good sted. Family support is important & you don't realise how important family are until you need them.
When I go & see my consultant, he tells me how well I am doing & to just get on with life. At first it was hard as when diagnosed I was told that it would come back, but there is no timescale. This is probably the only issue that I have, but I will have to get my head around it. Reading some of the experiences other people have had it will get easier with time.
I was told in December 08 that I am now in remission & I am currently seeing my consultant every three months.
I was diagnosed with HCL yesterday, March 27, 2009. I'm volunteering for a clinical trial at NIH (outside Washington DC) which will use 24/7 2-cda in conjunction with Rituximab, so I'm very interested in Tony's experience with Rituximab. The side affects and warnings have me concerned -- specifically PML. Is there a test for JC virus which is performed prior to administering Rituximab?
I'm interested in knowing how many people with HCL work in the electronics industry or have had exposure to Xylene. When I first graduated college and worked at Unisys 18 years ago, I was exposed to xylene from a Kepro photo-etching developer for circuit cards on a periodic basis for about 2 years.
