Zavie, 

Thanks so much for the info...I see my onc next Tuesday and I'm going to ask 
him which I am. If I had to guess, I think I'm PCRU with all the bcr-abl 
results they have given me, but I'll ask to be sure. 

Thanks again, 

Lenda 
----- Original Message ----- 
From: "Zavie Miller" <[email protected]> 
To: [email protected] 
Sent: Thursday, February 11, 2010 10:36:01 PM GMT -06:00 US/Canada Central 
Subject: Re: [CMLHope] Shortness of breath on sprycel 


Hi Linda, 

The first level of response or remission is called CHR - Complete Hematological 
Response. 

This is when all your blood levels such as WBC (White Blood Count), platelets, 
etc. reurn to the normal ranges. 

The next level of response is called CCR - Complete Cytogenic Response. 

This is when you achieve 0/20 cells examined by a BMB (Bone marrow Biopsy) or a 
BMA (Bone Marrow Aspiration). This is the test where they stick this huge horse 
needle into your hip and draw out some of the marrow and examine 20 of the 
cells under a microscope. 

This gets you a number in the Zero Club. 


The highest level of remission is called PCRU. (Polymerase Chain Reaction) 
Undetectable. 
This test is done on your blood and can detect 1 CML cell in a million cells 
examined. It is the most sensitive test we have today. It doesn't mean that you 
don't have any CML cells left in your system, it simply means that this test 
couln't find any. 

An intermediate level of remission is called MMR (Major Molecular Response). 
Now I will confuse you with a new term called 'log reduction'. Log reduction is 
a mathematical term. You achieve MMR when you have a 3 log reduction in the 
number of CML cells in your system. It means that you have reduced the number 
of CML cells in your system by 1,000 fold. 

Once you achieve MMR or PCRU it means that there is virtually no chance that 
you will ever relapse with your CML. 

I tried to make it simple but obviously got carried away. 

The first goal is to get to CCR. Once you achieve this the rest is easy. 

Zavie 


. 



On Thu, Feb 11, 2010 at 1:38 PM, < [email protected] > wrote: 




Zavie, 
Could you please send me all those acronyms again and what they mean? You sent 
them once before on the Yahoo group, but some how I lost them. I know I'm in 
remission, I just don't know what kind...if you know what I mean. But I am a 
Zero Club Member! 

Thanks!!! 
Lenda 

Original Message ----- 
From: "Zavie Miller" < [email protected] > 
To: [email protected] 
Sent: Thursday, February 11, 2010 12:11:59 PM GMT -06:00 US/Canada Central 
Subject: Re: [CMLHope] Shortness of breath on sprycel 





Hi Susan, 

You cannot have 40% leukemic cells and be in cytogenic remission. You must mean 
hematological remission. 

Zavie 


On Wed, Feb 10, 2010 at 12:28 AM, < [email protected] > wrote: 



Hello Maggy and Kelly, 

I had to get off gleevec 400 mg also because of eye bleeds and a brain bleed. 
This was 2 1/2 yrs ago and I refused anything all this time, 
doing fine. But...since my husband lost his job and my fish tests showed 40% 
leukemic cells in my body while still in cytogenetic remission, I figured I 
should get on sprycel very soon so insurance will cover it. So went to doc and 
he was delighted I was ready to go on sprycel, will work it out when the cobra 
gets going. I've researched and found the shortness of breath is due to water 
retention around the heart. Have either of your docs told you this? Mine says a 
simple water pill will relieve that problem. All depends if you think a water 
pill is "simple". I still claim Dr. Pinilla from Moffett as my doc but am going 
locally in Orlando to someone else to save time away from my job. I pray all 
goes well for both of you!. 

Blessings, 
Susan 









-- 
[CMLHope] 
A support group of http://cmlhope.com 
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-- 
Zavie Miller (age 71) 
67 Shoreham Avenue 
Ottawa, Canada, K2G 3X3 
dxd AUG/99 
INF OCT/99 to FEB/00, CHF 
No meds FEB/00 to JAN/01 
Gleevec since MAR/27/01 (400 mg) 
CCR SEP/01. #102 in Zero Club 
2.8 log reduction Sep/05 
3.0 log reduction Jan/06 
2.9 log reduction Feb/07 
3.6 log reduction Apr/08 
3.6 log reduction Sep/08 
3.7 log reduction Jan/09 
3.8 log reduction May/09 
3.8 log reduction Aug/09 
e-mail: [email protected] 
Tel: 613-726-1117 
Fax: 613-482-4801 
Cell: 613-282-0204 
Yahoo ID: zaviem 



-- 
[CMLHope] 
A support group of http://cmlhope.com 
------------------------------------------------- 

You received this message because you are subscribed to the Google Groups 
"CMLHope" group. 
To post to this group, send email to [email protected] 
To unsubscribe from this group, send email to 
[email protected] 
For more options, visit this group at http://groups.google.com/group/CMLHope 




-- 
[CMLHope] 
A support group of http://cmlhope.com 
------------------------------------------------- 

You received this message because you are subscribed to the Google Groups 
"CMLHope" group. 
To post to this group, send email to [email protected] 
To unsubscribe from this group, send email to 
[email protected] 
For more options, visit this group at http://groups.google.com/group/CMLHope 


-- 
Zavie Miller (age 71) 
67 Shoreham Avenue 
Ottawa, Canada, K2G 3X3 
dxd AUG/99 
INF OCT/99 to FEB/00, CHF 
No meds FEB/00 to JAN/01 
Gleevec since MAR/27/01 (400 mg) 
CCR SEP/01. #102 in Zero Club 
2.8 log reduction Sep/05 
3.0 log reduction Jan/06 
2.9 log reduction Feb/07 
3.6 log reduction Apr/08 
3.6 log reduction Sep/08 
3.7 log reduction Jan/09 
3.8 log reduction May/09 
3.8 log reduction Aug/09 
e-mail: [email protected] 
Tel: 613-726-1117 
Fax: 613-482-4801 
Cell: 613-282-0204 
Yahoo ID: zaviem 



-- 
[CMLHope] 
A support group of http://cmlhope.com 
------------------------------------------------- 

You received this message because you are subscribed to the Google Groups 
"CMLHope" group. 
To post to this group, send email to [email protected] 
To unsubscribe from this group, send email to 
[email protected] 
For more options, visit this group at http://groups.google.com/group/CMLHope 

-- 
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------

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