7 replies to this topic

[pammartin]

So as I travel down this mysterious CML road, I become more confused than ever about what is supposed to happen, what does happen, and what could happen.  Today's labs revealed my platelets have climbed 50,000 in three days, and white count has hit a pot hole, not moved a bit. sitting very soundly at 500.  My unknowable mind wants to believe the platelets are once again going to sky rocket to the few million mark, like they did a few weeks ago without the Sprycel and Hydrea, but even if they did I can't take the meds with the white count so low.  Do the platelets rebound quickly, or is the CML rearing it's ugly head.  I am lost to most of this, but still believe if I would have been pulled from at least 1000 mg of Hydrea half way through this mess, the bottom may not have happened.  So now, the white count is down, by the way, I was once again told to stay out of the public places and avoid contact with others, does it rebound as quickly as the platelets, or does it take it's good ole time heading back up the ladder?

I have read so much about beginning treatments, the meds and side effects, results less than positive because the meds work too well and a break is given till things begin to align themselves inside the body, but still confused about all of the happenings, not to mention how and why they happened.  I am not even sure I have an intelligent question or two above, I just know I am discouraged with the events, and perhaps a bit nervous about not being on the Sprycel, it has been a week now.

Speaking of meds, no one, I mean no one told me to stop taking the aspirin, even when platelets were around 30,000, of course I did, I knew that much, but I have not been on the Sprycel for a week and no one has told me to stop taking the allipurinol.  It is to wash the uric acid from the body and dead platelets, correct?  Any advice if I should be taking it, I should ask, but get so annoyed I forget until after I hand up the phone. 

[Trey]

The platelets are the last thing to normalize.  Until they do, they will bounce up and down.  This is what I call the "Spleen's Revenge".  The spleen regulates the platelet count to a large degree, and it is still pissed that you let it get so deformed.  It will mess with you for a while.

If it were me, I would definitely have stopped the aspirin and the allopurinol already. 

[pammartin]

Thanks, although I will put in an offical call today, I have stopped the allipurinol after reading your advice. 

[pammartin]

Trey, I heard back from doctors, any reason you can think of why they want me on the allipurinol?  The word from Pitt was to continue taking it.    I still think of the idea, had I not known to stop the aspirin, I would have been taking two full strength when the platelets were at 38,000.  Thanks

[PhilB]

I wouldn't worry too much about the allopurinol.  I've been on it for some years for gout.  Side effects are very rare and it doesn't interfere with CML meds, so even if you are taking it needlessly it shouldn't be doing you any harm. 

Phil

And don't let Trey get you frigthened about your spleen being angry with you - it's not cross, it's just big and wobbly.  While the other counts tend to behave like bricks (you push them and they move), your spleen means your platelets behave like a big bag of jello - give it a push and away it goes!

[pammartin]

I keep imagining a spleen filled with jello.  I haven't had trouble with enlarged spleen (yet)  hopefully that disclaimer protects me from saying it hasn't happened yet!  I can't knock on wood via the Internet. 

I think my entire body is angry with me, and because I know how I operate, it is going to be a hell of a battle!  Thanks, still smiling over the jello/spleen thingy.

[Trey]

The Allopurinol is used for CML when the WBC starts out very high at diagnosis and is brought down  rapidly by the TKI drug.  As this process occurs, the huge numbers of dead WBCs in the blood can cause kidney clogging and accumulation of crystalized uric acid in the joints (gout).  My Onc stopped the Allopurinol once my WBC was close to normal (so I took it for about a week).  Once the WBC becomes normalized, the problem no longer exists.  So continuing the Allopurinol after the WBC normalizes and the dead cells are processed out (a couple days) is poor practice.  Why would anyone take Allopurinol after the issue it is designed to deal with no longer exists?  If the doc doesn't stop Allopurinol once the WBC has returned to normal, then what is the decision point for stopping Allopurinol use? 

Allopurinol has its own set of side effects.  This can include lower WBC.  So if your WBC has already gone too low, why would you continue taking it?  Other side effects include diarrhea, skin rashes, etc, some of which are also side effects of TKI drugs.  So why would a person want to double up on side effects?

http://www.drugs.com...de-effects.html

[pammartin]

Thanks Trey, I was under the impression it washed the dead platelets out of the system, but instead it has to do with the white count.  I refuse to take meds I do not need, and after reading your first post I had decided to stop the allipurinol.  Thank you for clarification and the link, I don't think I am experiencing any side effects, but I do know I shouldn't have to take more drugs than I presently need.  Platelets are ok right now, but the WBC is the culprit this week, so I cannot see taking a med that may reduce WBC when it is already pretty damn low to begin with.  Thanks again!