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#1 xxgirl

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Posted 04 September 2015 - 02:35 PM

While my pancytopenia initially recovered with a lowered dosage of Sprycel (50mg) my blood counts are now trending down again, with another blood transfusion in my foreseeable future.  (HGB 8.2, Platelets 58, WBC 3.3 on 8/25/15)

 

PCR has also more than doubled in 7 weeks time.

 

Historical PCR:

4/1/14 - diagnosis -unknown

7/22/14 - 21.36 

9/18/14 - 14.61 

10/31/14 - 6.88

1/29/15 - 46.26

4/3/15 - 12.15

7/2/15 - 9.83

8/25/15 - 21.4

 

My doctor has returned me to 100mg Sprycel, and is referring me to a specialist.  What specific questions do I need to ask the specialist?  

 

I'm getting scared.  Has anyone else here had such a poor response after 16 months of TKI treatment?



#2 Trey

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Posted 04 September 2015 - 03:37 PM

We have previously discussed switching to Tasigna, and at this point I would do that.  Personally, I would switch now and then go see a Specialist after a month or more on Tasigna and at least one additional PCR/FISH to see how that goes.  Switching is likely what a Specialist would do anyway, so I would do that first.  So I would ask your current Onc to switch drugs now and do a FISH and PCR after a month or more.

 

You should ask the Specialist:

1) How do I find a balance among drug response, drug dosage, and blood counts?

2) What is the significance of my 35-nucleotide insertion between exon 8 and exon 9?

3) Is higher dosage with blood stimulation drugs better, or lower dose without them?



#3 rct

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Posted 08 September 2015 - 07:41 AM

3) Is higher dosage with blood stimulation drugs better, or lower dose without them?

 

Blood stimulation drugs are a probable cause of leukemia, and are contraindicated in leukemics.  It's written clearly right in the little fold up piece of paper in every box of neupogen, and always has been.

 

rct



#4 Trey

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Posted 08 September 2015 - 08:23 AM

When fighting low counts there are not a lot of other no-risk options.



#5 xxgirl

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Posted 08 September 2015 - 10:23 AM

RCT - I've already had 5 shots of Procrit between May and July of this year, in addition to 3 red blood cell transfusions.  I am skeptical about how beneficial the procrit are, so I declined the last time my dr wanted to give me one.  I know that your wife has suffered with low whites, but my whites seem to be the "best" of my counts, and my Onc did not prescribe any stimulating shots, even though my ANC stayed between .5 and 1 for more than 3 months.  

 

Trey - I wish my Onc WOULD switch me to Nilotinib at this point.  Or bosulif.  I feel like he is going back to higher dosage Sprycel, because my PCR was going down on 100mg...without the thought that I may have "developed" a resistance to it.  If the specialist visit is not scheduled soon, I will ask to switch next week.

 

I know that others here have had failure on multiple medications, but it's really quite harrowing to have my PCR still be so high AND have my blood counts trending down again this long (16 months) after treatment began.    



#6 Trey

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Posted 08 September 2015 - 01:13 PM

The timing of the low blood counts indicates the need to switch drugs.  Sprycel is not going to work for you since you require higher dosage, and you need a better balance of drug dosage and blood counts.  I would press hard for a drug change to Tasigna or Bosulif. 

 

You could also ask about the clinical trials for ABL001:

https://clinicaltria...how/NCT02081378

 

I don't know how convenient the ABL001 locations are since there are only 5 in the US.  But this drug may be more tolerable for those with low blood counts since it is supposedly more highly targeted. 

http://community.lls...ects/?hl=abl001






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