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
Welcome to our little club of rare HCLers!!! As your doc said....best one to get! You'll find more of us on the HCL Forum here lots of stories, some sailing through their treatment others finding things a little harder. Also, visit Rob's site in the USA - www.network54.com/Forum/263810/ some knowledgeable people on there WAID, Tim etc both of whom have struggled with treatment. There are other options not just 2cda and Pento. I had 2cda worked fine for me, now 4 years since treamtent and life is great...NORMAL!! Honest! I guess they need to just sort out your liver problem. Did you have 2cda once a week (like I did) or daily I wonder. The other thing to consider is getting a 2nd opinion, in the UK I think Prof Cawley at Liverpool Haemotology Dept is one of the most knowledagable and does research into HCL....might be worth you or your doc consulting with him....just google him.
Keep in touch, go on the FORUM here as the BLOGs tend to disappear from view after a while.
I too have HCL, diagnosed June 2006. Started with Cladribine and we had to stop the course as I could not tolerate it. I too started liver issues (amongst other things). I too went onto Pentostatin and whilst I should have had 6 treatments, I only tolerated 2 of them. I was also very concerned about not completing the original plan, I was assured by the consultant that this was suffice. My bone marrow test confirmed this too. I struggled to understand until she explained that whilst they start with a suggested course, I'd simply had sufficient. She simplified it for me (simple is good for me) to taking paracetamol. Everyone follows the recommended dose - take 2 etc. But everyone is different, taking one may suffice. We're all unique - and so dosage is personal. She also suggested taking more than I needed would add no value. I think what my waffle is trying to say is - if the treatment you've had is suffice, going through the routine is not the important thing. I hope also you realise you’re not alone - this happened to me too. Plus I have been in remission for 2 years and 2 months!
Liver wise I started to see massive improvements when all my treatment stopped. I had pickled it with all the medication and chemo. It's an amazing organ though - it heals itself. Just looked after myself really well - food and drink was the key.
I really hope this helps - and you're doing well now.
Thanks Wendy - Its been a while since I have been on so apologies for not replying.
Congratulations on your remission !
I have seen my consultant today and my liver is now tolerating the Pentostatin since I moved to a 3 week cycle, although apart from my Paltelets improving my Nuetrophils and WBC are still very low and I haven't really seen much improvement from when I first started.
I am told this can be normal and that we will continue until I have had 8 treatments ( 3 to go ) and then review the results and have a bone marrow biopsy ... I cannot help but feel that the Pento isn't working as I have already been taken off the Cladribine and my bloods don't seem to be improving although they haven't got any worse.
In one form or another I have been having treatment since Sept last year with a two month break whilst I was ill over the New Year ..... I just want to see some improvement so I can feel that I am moving towards remission !!
My doctor doesn't seem concerned and I am sure that I am putting 2 and 2 together and coming up with 5 but its hard to remain positive and carry on as normal when you just don't know what's going on inside your body.
