6 replies to this topic

[Leuk and Duke]

This will be my first post in the forum, but I have been reading since my diagnosis two months ago.  I went to see GP because of pain in my abdomen which turned out to be an enlarged spleen.  My onc told me the next day what I had and my tests showed WBC of 293K and PCR 85%.  Doc put me on Hydrea initially and then doubled the dose after two weeks of not much progress.  That did the trick and I started 600 mg of Tasigna two weeks later.  After one week of both Hydrea and Tasigna and then 4 weeks of just Tasigna, I had a check up yesterday. 

 

I knew my platelets were going to be low because I've recently developed the petechiae on my feet and legs.  The onc said after talking to the other hematologist in the office, they both agreed they had never seen as strong a response to Tasigna in a patient.  My WBC was 8K, RBC was a little low around 3.8M, but platelets were only 7K.  I have not had any bleeding problems, so he told me to stop taking the Tasigna and prescribed Prednisone and told me to take 100 mg immediately (then apologized because I wouldn't be sleeping last night).  I took another 60 mg this morning and went back for a platelet check this afternoon.  The level was down to 4K today.  Still no bleeding issues other than the petechiae, so I'm continuing the steroids over the weekend and checking in again on Monday.  He told me if I see any bleeding to go straight to the emergency room.

 

My main question is this.  Will the end game most likely be eventually platelets restore to a "normal" level and my dose of Tasigna will be lowered?  I really don't want to switch to another TKI as my results have been good so far and the side effects other than this one have been very minimal (not even itchy scalp).  How paranoid should I be over the next 2-3 days that I might accidentally cut myself in the kitchen and bleed out on the floor?  How many others have experienced similar results 1 month into TKI therapy?

 

I look forward to your answers and the support that this group obviously has for others going through the same things.

[Trey]

Welcome.  Hope all goes well.

 

You may have read some of the intro stuff here, but in case you missed it:

http://community.lls...+diagnosed +cml

 

We see the issue with Hydroxyurea (HU) too often.  Oncs should stop using it for initial CML treatment.   And it should not be given along with the TKI drug, as your Onc did.  Sad to say, your Onc erred.  He gave you double dose HU, and then HU along with Tasigna, and then he was shocked by the extreme low counts? 

 

You just need to let your body recover from the HU treatment.  It will take some time.  The life cycle of platelet production can be weeks, so they need to ramp up.  And the spleen holds onto platelets (sequesters them until needed), so your spleen will try to hide the platelets from your Onc in case he comes after them again.  Whether the prednisone is helpful in creating new platelets is debatable.  But you should be careful to avoid sharp objects for a while.

 

Sorry you are having to deal with this issue.  Unfortunately, some Oncs have not learned to start with TKI drugs only, even with a relatively high WBC.  Bringing the WBC down with TKI drugs in a controlled manner is the best approach.  And there is also leukopheresis (filtering out excess WBCs) if the high counts are such a concern.  I also wish I did not need to criticize your Onc right off the bat.  But it is important for people to realize when their current Onc may not be the best one to treat them, since there is an apparent lack of knowledge on his part. 

 

You will get past this issue.  Let your body recover from the HU and be skeptical about docs trying to force the body to create platelets faster using drugs.  Some things cannot be pushed -- it will just take some time. 

[afd363]

Leuk and Duke,
In the off chance you do get injured, first direct pressure and elevation. If bleeding persists use a tourniquet. Studies from the War in Iraq and Afghanistan resulted in the two hour rule for tourniquets. You can have a tourniquet on for two hours before limb damage which is a pretty long time. Tourniquet styles can be researched online. Hope your counts come up soon and you get your drugs straightened out.

[Tedsey]

You are not alone.  The same thing happened to me.  My platelets were a little more than half yours at dx.  It may take some time (it took about a year for me), but you will recover.  Just be aware of the typical signs of bleeding (ie. bloodly nose, cuts that won't clot, black tarry stools, heavy menstral bleeding--if female).  This kind of ignorance infuriates me.  I question your onc's competence to treat your CML.  I left my first one after 9 months of fearing for my life, and not because of the disease.  Hang in there.  Keep posting how you are doing.

 

All the best,

Tedsey

[Leuk and Duke]

Thanks all for your replies. Between this post and another with similar issues I feel compelled to take more control of my situation with the hematologist. My counts are concerning but I feel better about the long term prognosis and giving it time before making drastic changes. If anyone has suggestions for a good Oncologist/Hematologist in the NW Arkansas area, I'm all ears.

[Gail's]

Leuk and Duke, when I read your post I thought you meant you were treated first with HU then switched to Tasigna afterwards. Did you take HU and Tasigna together?

[Leuk and Duke]

Gail's, I did take both meds together for a week before stopping HU.