My father has CLL for 5 years now and he has n... - CLL Support

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My father has CLL for 5 years now and he has never moved to the next stage (he is on 0 level). What does it mean about the progress of CLL?

oplatka profile image
13 Replies
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oplatka profile image
oplatka
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13 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

That is GREAT! CLL is obvious indolent in his case.

It could well remain like this for another 5 years or more. Lets hope so...

But,

He needs medical observation on a regular basis, he can't let down his guard.

~chris

oplatka profile image
oplatka

Yes, indeed. He visits the hospital every three months for medical observation in the special department for CLL.

corgi profile image
corgi

I am 71 and have had a stable WBC for 11 years now. Be optimistic, it might not progress at all.

Gartshore profile image
Gartshore in reply to corgi

I love to hear cheery news. That's wonderful!

anaturallearner profile image
anaturallearner

Apparently about a third of people with CLL do not progress and their disease remains stable without symptoms. Let's hope your father is one of the lucky ones. :-)

Gartshore profile image
Gartshore in reply to anaturallearner

More positive news - thank you. I have my second hospital appointment tomorrow (10 Dec) with haematology consultant and am a wee bit nervous about blood results which will probably come in a letter a few weeks thereafter.

Halcyon profile image
Halcyon in reply to Gartshore

I don't quite understand why blood results would follow in a letter in weeks as you put it, although this might depend on what tests were done and why you have seen the consultant. As your appointment was three days ago all may now be clear. As a general rule, if the results are available, expect to see them straight away when seeing the consultant - mine always shows me although the first one I saw was very unforthcoming as if it was some kind of secret. Don't put up with this if it occurs - be polite but firm as it's your body!

Gartshore profile image
Gartshore in reply to Halcyon

Thank you - you are right. I did just get a finger stab and the results were given to me during the consultation. It was only my second visit so I didn't know the procedure. My B lymphocytes were 8.6 on Monday. They were 8.8 a couple of months ago. So that'll mean they are stable at the moment. I know they are around 4 in 'normal' people. I don't know my other results. My next appointment is in June.

oplatka profile image
oplatka

Thanks, but I am not quite sure this will be the case forever as his WBC is not stable as I hope it would be - after 5 years it is now 64,000, but the Hemoglobine is around 12 and the PLT is in the normal range. Anyway, it's lovely to hear everyone's own experience and hope.

Eastbourne profile image
Eastbourne

I, too, have had very little movement for a number of years. My Heamotologist says I will die of something else, not CLL. I am 84 years old and expect to be dormant for another 84 years

Gartshore profile image
Gartshore in reply to Eastbourne

Wonderful!

corgi profile image
corgi

Gartshore, I think you will get your results there and then. From experience a blood sample is taken and within 30 mins. the results are on the consultants computer. I am given a readout which over the years (in my case) is very useful to see.

Marisa profile image
Marisa

I think that when you are a lot older your body slows down and so does the cancer. A friend of mine who is in her seventies has only had one lymph gland appear in her neck and it has not grown now for 2 years.