Husband just diagnosed - advice needed please!

Topic Made On: Sep 14, 2009 12:14pm

Gender: Female
Posts: 16
My husband is 61 and generally very fit for his age. He had a routine blood test and it came back that he has CLL. We then discovered that it had shown up 18 months earlier in a blood test but had not been picked up on. His white cell count is 60, it has trebled in those 18 months. He has Stage B, his liver is twice as big as it should be, and yet they say he needs no treatment. Is this correct?
We are also wondering if it could be linked to work that he did with dangerous substances 4-5 years ago. He operates excavators and had to clear a site contaminated with all kinds of dangerous chemicals including arsenic. Does anyone know anything about this? Thanks.

Replied On: Sep 15, 2009 08:44pm

Gender: Female
Posts: 27
Hi, don't know about the dangerous substances. In view of the enlarged liver, I would be asking what my prognostic indicators are. If you have the worst indicators it also means that you will not react well to treatment in later stages and it is better to have it earlier. If your indicators are good then watch and wait is all they do - its very frustrating. Try clltopics, its a good site which will give you a lot of info - even if it is American! Best of luck

Replied On: Sep 16, 2009 01:55pm

Gender: Female
Posts: 11
About 8 years ago, our community was exposed to very high levels of Benzine. My husband was diagnosed with CLL almost two years ago, aged 49. We asked the consultant whether she thought the two could be linked and her answer was that the benzene could have been the trigger for the CLL. She went on to say that the potential to get the CLL in the first place would have already been there, and the Benzene could then have triggered it off. There are a further 69 properties in our area, and as far as we know, my husband is the only one with CLL (at the moment). We would have a devil of a job trying to prove a link - and it's just not worth it. I don't believe we could ever manage it. There is man with CLL (diagnosed this year), living in the neighbouring Authority, just short of two miles away. He's another relatively young guy.

By the way, my husband was diagnosed as Stage iv, (or C), and he didn't start treatment right away either! To be honest, it was all really scary, and it took a while to sink in that he was so ill. Although the consultant wanted him to start immediately he was diagnosed, she understood our feelings and went with us on it.

When my husband gets his remission (fingers crossed!) we are going away on a holiday of a lifetime. He's finished his chemo, and waiting to see if the NHS will fund Campath for him...

Jackie xx

Replied On: Sep 17, 2009 07:55am
Robert Cork

Gender: Male
Posts: 160
There has been much discussion over the years regarding exposure to chemicals and the possible link to CLL, but I have never seen any specific evidence that would stand up in court.

Regarding treatment, if your husband feels well, has no specific CLL symptoms and his HB and Platelets are at reasonable values (above 11 and above 100 respectively) then I personally would not take treatment.



Replied On: Sep 21, 2009 10:32am

Gender: Female
Posts: 16
Thanks for the replies, they are very helpful.
I agree that it would be impossible to prove any link regarding the chemicals.
We don't know what his HB and Platelet counts are, so will find that out. The only symptoms he has is weight loss (20lbs over two months) and painful joints in his feet and hands, as well as getting tired quicker. He has another hospital appointment in December so will see what happens then. At the last one he was told it will probably be 2011 before it is severe enough for treatment to start.

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