6 replies to this topic

[roamingdoc83]

[I moved this from where I'd posted it previously, and incorrectly - I am demented - I'll let Beth bring her's over]

Hi All,

Feel like I'm dying. Came home from work Tuesday the 1st with cough (brought that up here in discussion

about allergic response to Gleevec, cough, etc)... stayed home with aches and cough Wed, felt better and

went to work Thrusday. Weak. Thought it might be the CML?? But now? Well.

Just laid low Friday.

Saturday had to attend a relicensing seminar on 'nutrtion' (of all things ) and the aches and weak feelings were

intense. Drank lots of water, ate some vegetable soup... was 9 hours. When we left my wife (she came along)

almost had to carry me to the car... I was shaking, so weak (felt like a baby), had to really "suck it up" to walk a quarter

mile to the car. Wife had to drive home (bless her!)

Temp was 102 upon arriving home. Coughing terribly, sputum was "not" discolored but more whitish and thick.

Temp was 102 all night long, seemed to break (99) with a sweat at 10AM but is back up to 101 now.

HOW MUCH does CML effect the immune system?

I doubt this is Gleevec but I've got some major chest or pericardial pain (b/p is good) right around the sternum

and I'm achy.

So it sounds like pneumonia aside from no discolored sputum... could be the flu it an xray rules out lung

involvement but CAME ON so fast. DOES CML kill ones immune system? Does Gleevec?

Update - I thought of the old Swine flu but having nothing like nausea - but do have some pericardial pain so we'll call the

good doctors tomorrow. I do fall OUT of the 'base' group getting this stuff and my temp is moderate vs. high..

Will advise (thanks Beth), delerious is out.

Doc

[PhilB]

Hi Doc,

When I was first diagnosed and started on treatment I was advised to contact my haemetologist immediately for any fever over 98 so were I in your position I would definitely be getting on the phone.

There are various things that could be going on and you may well just have some bug that would have done this to you even were you otherwise healthy.  Two options I'd want to get checked out though are 1) could it be a reaction to the Gleevec - I don't believe they've yet discovered any sympton which ISN'T a possible Gleevec side effect; and 2) Has Gleevec caused your counts to tank so rapidly that your immune system is compromised and you are having problems fighting infection.

We all vary greatly in how quickly G knocks out the bad cells vs how quickly the remaining good cells multiply to take up the slack.  Quite a few people end up needing a Gleevec 'holiday' early in treatment to give the good cells more time to recover before you start again on attacking the bad cells (which are actually still good when it comes to fighting infection).

All the best

Phil

[BethG]

(and here's my reply):

Hi Doc,

I'm no doctor, nor do I play one on TV, but your symptoms sound a lot like H1N1...hits hard and fast with the achiness and the high fever. What a serious bummer.

I did get a lot of colds, etc. my first year after diagnosis (but then I was also busy failing Gleevec, so that might have made a difference!)

BTW--you posted this in the CLL forum, not the CML forum. You must be delirious!

Take care and hope you kick this bug quickly.

Beth

----------------------------------------------

Please do contact your doctor and see what he says! It sucks to be that sick, especially when you are already "sick"!

[Trey]

The immune system for folks with CML can be "suppressed" under certain conditions (very low absolute neutrophil count -- below 1.0) but is not "compromised".  So it can still respond when needed.  It is also redundant (granulocytes and lymphocytes).

You are indeed "really sick", as you put it.

[roamingdoc83]

Finally out of the hospital... admitted Monday and XRays showed the pneumonia pretty wide in the

left lung, middle lobes. Anyway you are right Trey, I 'am very sick'... but amazingly the lung was

about 'clear' (to the suprise of everyone) on Thursday monring, Could not see the infiltrates, etc.

Of interest, last Blood work showed "no" immature wbcs? Diff was about normal with some mild

variation for the pneumonia. I had take a holiday from the Gleevec mostly because I was too sick

to take much and most of the meds were coming in IV. So that was strange, Totat WBC was

a litlt under 18 but the pneumonia can account from some high WBCs.

So resting up and looking at the gleevec... dreaming.

Doc

[Trey]

I think Beth was right about H1N1.  This should also serve as a gentle reminder to folks: don't blame the CML or drugs for everything or you might end up ignoring a different illness.

[roamingdoc83]

Basic lobar pneumonia... cultures did not return the 'dreaded' swine.

But the pneumonia was sufficient and I'd like to stay away from it all.

As you mentioned, and my onc confirmed, the overall 'drop' in immune

function is not great with our CML. So must've just been run down or

ran into a virulent 'live' bug.

Taking it easy. All be safe and get well.

Doc