VTE ? Blood clotting issues in CLL

[Guest guest]

Hi all'

I've been following several topics and see some of the best

brains at work here.

I am a 48yr old male, W & W, Trisomy 12, dx Feb 2010, Binet B,

ALC low, from 8 to 13.6( last six months) other counts

still ok BM 45% one year ago, no other marker info yet, much

bone/joint discomfort/drenching/gastric discomfort/ fatigue

( arthritis diagnosed within last 24 months has progressed

rapidly) reduced mobility and long bone pain worst at night.

Muscle spasms and morning cramps. VitD 22

I thought it was time for me to re-address my concerns about

my recent stroke history. I have had a few replies, stating

that VTE and other blood clot related issues are under

reported in CLL patients. Yes it may be a coincidence that

my CLL diagnosis coincided with a stroke to my cerebellum.

And that the essential hypertension discovered (which was

the only factor explainable) was the cause? And that there

is an underlying condition that all the stroke experts can't

find. Or I was one of the many that suffer a stroke who fall

into the bracket of unexplainable. My concern is not that it

may have been linked to my CLL. But how this may affect my

future journey with CLL.

I have read 's recent article and am therefore aware of

the greater risk of these conditions in CLL patients, and as

I have history, deduce that potentially I am at greater risk

of a future event. Understanding that inflammation caused by

CLL or treatment may be a factor. How may this affect a

patient who because of history and current medication is

instructed not to use anti-inflamatories. Hypertension is

now managed.

Also I am aware that care has to be taken during treatment

and the intervention of drugs if required. In the lead up to

and post treatment, how is this likely to affect my quality

of life? For as my ALC increases and my immunity is

inevitably compromised before or during and after treatment,

a " normal " (if there is such a thing) CLL patient may

require the intervention of IVIG, but from what I gather,

this may be off the table for me?

As lymphocytes increase and the balance of cells in relation

to fluid changes, am I at greater risk of an event before

treatment (regardless of thinning agents)? If so does this

add to a possibility of a need for early intervention? Or

does this ad a greater risk to treatment? A tricky one eh?

Can anyone shed any light? I am currently sourcing available

marker or mutation status testing.

Has anyone got any further information in this area, or have

they also had to investigate this because of their own

history? I can carry on wading through information, but it

would be a great help if some one has information to hand.

Perhaps on sites in the link below, or other papers:

http://www.cllsupport.org.uk/sources.htm

Nick (UK)