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Hydroxyurea is NOT for Initial CML Treatment

Hydroxyurea NOT for CML Hydrea NOT for CML Stop using Hydroxyurea CML Hydroxyurea treatment CML Initial CML Hydrea

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#1 Trey

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Posted 09 November 2015 - 02:53 PM

After seeing so many CML patients suffer from the use of Hydroxyurea as initial CML treatment, I am compelled to explain why this very poor practice should end.

 

Hydroxyurea (HU) also called Hydrea should NOT be used for initial CML leukemia treatment under almost any circumstance.  Even if the initial WBC is well over 300K, TKI drugs are still preferred for initial CML treatment instead of Hydroxyurea.  TKI drugs selectively target the leukemic blood cells, resulting in an effective, orderly and controlled decline in leukemic blood cells while sparing and preserving the good blood cells necessary for recovery from CML.

 

Hydroxyurea is a chemotherapy drug which indiscriminately kills off blood cells, both leukemic cells and good blood cells.  At CML diagnosis the good blood cells are already struggling due to the body's attempts to limit blood cell production, since only good blood cells respond to signals to slow down blood cell production.  Using Hydroxyurea kills off these already struggling normal blood cells, and when the TKI drugs bring down overall WBC by eliminating vast numbers of leukemic blood cells, a crash landing of blood counts results.  This leads to critically low blood counts with which the patient will struggle for a long time.  This actually sets back CML treatment as drug breaks are often required due to the low blood counts.  Long term myelosuppression (low blood counts) can result. 

 

Hydroxyurea also causes a yo-yo effect with blood counts, masking the true nature of patient response to TKI drugs.  Hydroxyurea can result in enhancing leukemic cell rebound after the initial steep drop in blood counts. 

 

I cannot stress strongly enough that HYDROXYUREA SHOULD NOT BE USED FOR INITIAL CML TREATMENT.  Let the TKI drug bring down blood counts in a controlled manner to prevent a crash landing into severe myelosuppression, and to prevent killing off the already struggling normal blood cells.  Recovery from CML is highly dependent on having an adequate pool of normal blood cells to repopulate the blood with normal cells.


Edited by Trey, 09 November 2015 - 06:32 PM.


#2 Kellyb333

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Posted 09 November 2015 - 03:51 PM

Thank you for this Trey!! I was started on this and have had multiple interruptions in the last 18 months. My lowest PCR has been 27%, because my platalets, neutrophils and WBC drop so low. I hopefully will be starting Bosulif next week, I pray it is easier on my counts!!,

#3 rcase13

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Posted 09 November 2015 - 04:46 PM

I started on this partially because my WBC was high and my spleen was huge. But mainly this is because my insurance took over a week to approve Tasigna.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#4 DebDoodah22

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Posted 10 November 2015 - 08:30 AM

I started with hydroxyurea due to 300k plus white counts and later struggled to keep red counts up.....nearly transfused twice...so glad I was not. I think they are just learning so much more now....hopefully oncs will share these protocols and others will have an easier start.

#5 kavis

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Posted 10 November 2015 - 11:46 AM

I don't disagree Trey, seems using the shotgun when we have a rifle is very outdated.

 

However, in my case, I was bad when I checked into the ER and worse by the next morning.  At that point they don't have test results back yet to confirm CML, they can only guess.  But they knew for a fact my WBC was out of control.  So you are suggesting they wait a week or so to confirm CML before ordering meds, then potentially you've waited 10-14 days before starting any treatment?

 

I'm not arguing with the logic in anyway, I guess I never second guessed my Hydrea because it seemed the WBC was an emergency situation requiring immediate treatment, separate from the confirmation of CML.


Male, Dx Jan '15 in Chronic Phase at age 35

Tasigna 600mg

 

PCR highlights:

1/10/15 - 74.8%

April '15 - 1.7%

Oct '15 - 0.48%

Mar '16 - 0.24%

Apr '16 - 0.08%

July '16 - 0.09%

Oct '16 - 0.06%

Jan '17 - 0.0684%

April '17 - 0.08233%

July '17 - 0.034407%

Oct '17 - 0.043

Jan '18 - 0.028

 


#6 thedook

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Posted 10 November 2015 - 01:01 PM

My situation was similar to Kavis and rcase13.  I checked into the ER on a Friday night, my blood test came back with 234K WBC and they suspected leukemia of some sort.  It was not until the following Wednesday that the BMB and other tests pointed to a conclusion of chronic phase CML.  It took another 6+ weeks to get my insurer on board with agreeing to allow Sprycel to be prescribed.  Hindsight being 20/20, I would have directed the doctors accordingly but I believe standard practice amongst many general ONC's is to first drive the WBC down (you might get a different result if you happen to present to an ONC who has actually dealt with CML before...which is not often the case for a lot of us).  

 

I hardly went into the whole situation having been knowledgeable about CML and treatment options.  I was mostly worried about whether I should hurry quickly to update my will.  I would expect that the ONC's out there should be better versed in what the optimal first line treatment is and should have a mechanism for facilitating getting access to a TKI sooner.  The process I went through to get the TKI approved was lengthy and arduous and required me to escalate my case through my employer's benefits advocate and through my insurer.  Plus there are like 4 pharmacies nationwide that carry Sprycel.  It's not like I can scoot down to CVS to get my script filled.  Until any of this changes, I see most CML diagnoses being treated with Hydroxyurea.  And suffering the obliteration of your blood counts, good and bad.



#7 Melanie

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Posted 10 November 2015 - 03:04 PM

I too was treated with Hydroxyurea because of the ER situation and them not knowing what the DX was for another week. They had iv's going in both arms with antibiotics and still not able to keep my fever down After reading Trey's topic, I'm convinced that's the reason I'm still struggling with low counts today after 4.5 years and had such a hard time finding a balance that would get enough TKI in me to get to CyCR.

In hindsight, maybe treatment would have been different, but when they're dealing with the unknown, Dr's tend to error on the "over treatment" side in the hopes of giving you relief. In my case I came out of the hospital feeling better but with 3 different things to deal with and treat. C-diff, CMV, and CML. Some of this caused by over treatment....possibly. The resulting myeloid depression... Absolutely. Could they have handled it different... Maybe only in hindsight.

I do think though in cases where the CML is dx quickly, then holding the Hydroxyurea would be a good protocol to follow.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#8 Melanie

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Posted 10 November 2015 - 03:04 PM

I too was treated with Hydroxyurea because of the ER situation and them not knowing what the DX was for another week. They had iv's going in both arms with antibiotics and still not able to keep my fever down After reading Trey's topic, I'm convinced that's the reason I'm still struggling with low counts today after 4.5 years and had such a hard time finding a balance that would get enough TKI in me to get to CyCR.

In hindsight, maybe treatment would have been different, but when they're dealing with the unknown, Dr's tend to error on the "over treatment" side in the hopes of giving you relief. In my case I came out of the hospital feeling better but with 3 different things to deal with and treat. C-diff, CMV, and CML. Some of this caused by over treatment....possibly. The resulting myeloid depression... Absolutely. Could they have handled it different... Maybe only in hindsight.

I do think though in cases where the CML is dx quickly, then holding the Hydroxyurea would be a good protocol to follow.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#9 Trey

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Posted 10 November 2015 - 07:50 PM

Leukapheresis should be used if it is truly an emergency, not Hydroxyurea.



#10 soundoff

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Posted 11 November 2015 - 11:08 AM

I also received Hydroxyurea WBC was around 440K and rising rapidly.

#11 Melanie

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Posted 11 November 2015 - 02:36 PM

So Trey, is that a new protoca that Dr's are aware of? When first dx, I know I was clueless on the disease or any treatment options. I had complete faith in the Dr's, not having ever been really sick before. Totally unaware of the need to be our own advocate at the time.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#12 Trey

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Posted 11 November 2015 - 03:13 PM

http://www.ncbi.nlm....les/PMC3434324/



#13 nia.435

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Posted 12 November 2015 - 07:23 AM

My situation was very similar to rcase13 and kavis.  I had a massive spleen and a WBC of 600k.  After my GP felt the size of my spleen, I was admited to hospital where, while awaiting the results of my BMB for CML, I was placed on hydroxyurea and put on a saline drip.  I was in hospital total 8 days, but once the results were positive for CML, I was put straight on a TKI.

 

My other counts were not at all good and my Hb was at a low 6.7.  So I wander if like Trey says, Hydroxyurea was the best idea for me?

 

Vanessa



#14 SunNsand

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Posted 15 November 2015 - 02:48 PM

Glad you posted this Trey. I didn't receive Hydrea when I was first diagnosed in 2009. I've read so many posts on FB of newly diagnosed CML patients getting Hydrea that I was thinking my Onc didn't know what he was doing.




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