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How long can a patient survive on just Hydrea without a TKI?


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#1 Susan61

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Posted 18 May 2014 - 06:15 PM

Hi:  I am curious if there was anyone who just did Hydrea, and was never able to take a TKI.  I have mentioned that my mother was diagnosed at 88 years old with CML a few months ago.  She cannot go on a TKI due to all her serious health problems.  The doctors feel that she would survive longer with just Hydrea.  So far she is stable, but I know Hydrea is used temporarily until a patient can get onto a TKI like I did.

Susan



#2 Trey

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Posted 18 May 2014 - 09:10 PM

At first the Hydrea works to quickly lower WBC.  But it lowers all white blood cells equally, and does not discriminate between leukemic and normal ones.  It also does not affect the high platelets which requires other drugs.  After a while the leukemic cells outsmart the drug and also never mature (they remain blasts).  At the same time normal WBC production is virtually shut down.  So the leukemic WBCs become less functional and the immune system becomes generally ineffective.  At that point the patient is highly susceptible to other illnesses such as pneumonia, infections, etc.  This process can take varying amounts of time, but probably one or two years.  Even so, given the circumstances the options are limited so it may be a reasonable approach.



#3 Susan61

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Posted 18 May 2014 - 10:17 PM

Thanks a Lot Trey:  I had a pretty good idea, but was not totally sure how it would work.  My Mom's platelets were in the Zillions a few weeks ago, but they got them down somewhat.  I have to find out what her exact counts are.  I have her in a Nursing Home, and when I call the doctor she gives me a rough idea of what is going on because she says she does not have the chart to look at.  She just keeps saying she is stable for now.



#4 Trey

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Posted 19 May 2014 - 09:40 AM

The elevated platelets may be a bigger problem than controlling the WBC count, and they can be hard to control.  Very high platelets can be hazardous, especially in an older person.  The risk of stroke would be increased.



#5 cousineg

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Posted 21 May 2014 - 09:26 PM

Normaly, the doctors prescribe a combination of Hydrea, Agrylin, Allopurinol and Aspirin. Anagrelide (Agrylin/Xagrid, Shire) is a drug used for the treatment of essential thrombocytosis (ET; essential thrombocythemia), or overproduction of blood platelets. It also has been used in the treatment of chronic myeloid leukemia. http://en.wikipedia.org/wiki/Agrylin  I tried this combination for one year and I was very sick. Agrylin can be dangerous for the heart. The platelets can go down very fast with agrylin (in 2 or 3 days)



#6 Susan61

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Posted 21 May 2014 - 09:39 PM

That is exactly what the doctor said, that they are concerned over her having a stroke with the High Platelets.

Her heart is so bad, and they are not putting her on anything else.  We know its just a matter of time with all she has going on.  We have a DNR on file at the Nursing Home.



#7 cousineg

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Posted 21 May 2014 - 10:16 PM

Why the doctors didn't gave her aspirin with Hydrea?



#8 0vercast

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Posted 23 May 2014 - 12:20 AM

Very good post!

But I wonder if it would even take that long (1-2 years.) I saw my WBC drop to dangerously low levels from one week to the next.



#9 hannibellemo

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Posted 23 May 2014 - 06:03 AM

Hi, Susan,

I know this is such a difficult time for you. Your mom is so lucky to have you to help make these decisions. Just wanted you to know that you are in my thoughts and prayers every day.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#10 Pin

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Posted 23 May 2014 - 07:25 AM

Hi Susan, I just wanted to say that I'm sorry to hear this and sorry that you have to ask this question at all. You have been through a lot and I want you to know that you and your Mother are in my thoughts.

xx Pin.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#11 Susan61

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Posted 24 May 2014 - 06:54 PM

Thank You to Everyone for feeling and understanding what I am going through.  My mother is a tough lady, and she makes us laugh with her knowledge that she picked up all by  herself.  They keep giving her Insulin for her Diabetes, and she refuses it if they do not check her sugar first.  She is 88 years old, and mentally very alert.  She asked them:

How do you  know how much Insulin to give me if you do not know my sugar reading?  She knows that when she was home, she had her sugar checked and if it was low that she skipped her insulin for the evening. When she was in the hospital, she double checked everything they did and questioned them constantly.  She does not trust them.

She knows what every pill looks like that she takes.   One night they brought in a cup of pills, and she always looks at them before she swallows them.  She told the nurse, these are not mine.  The nurse went out to the front desk, and came back to apologize because my mother was right.

She is a very religous lady, and she just says that God has her there for a reason.  God Bless Her

Susan



#12 mariebow

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Posted 24 May 2014 - 07:09 PM

She also is a smart cookie.  May God Bless her to have many more years.






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