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Just diagnoses in accelerated stage - anyone else out there?


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#1 alexamay09

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Posted 10 September 2012 - 05:24 AM

Hi Everyone

I've just been diagnosed in the accelerated phase of CML.  I started on nilotinib a couple of days ago.  Shell shocked by the speed of it all and just wondered if there's anyone out there who can offer positive stories or reassurance for me?

thanks

Alex



#2 GerryL

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Posted 10 September 2012 - 09:00 PM

Hi Alex,

Welcome to the board, I'm hoping that we have a few people around that have information on the accelerated phase for you. 



#3 TeddyB

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Posted 11 September 2012 - 02:29 PM

Hello and welcome Alex.

Ill start off with some questions which usually are asked when people here are newly diagnosed.

If you want maybe you could share your blood counts with us?

Have you gotten a second opinion to confirm your diagnosis?

Which cancer center is treating you, and do they have any CML experts?

How are you feeling? Any side effects?

A lot of questions here, but it might help us gain some understanding of your situation.

Hans.



#4 CallMeLucky

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Posted 11 September 2012 - 03:03 PM

Accelerated phase is not as good as having it caught in chronic phase, but no where near as bad as being in blast phase.  With blast phase even if the TKI drugs work it is almost certain that they will eventually stop working and BMT will be needed.  With Accelerated phase, however, the prognosis can be much better.  Particularly with the second generation TKI drugs (nilotinib and dasatinib) there are good chances that the drugs can bring you back to chronic phase and you can get a good long term durable response to the drug giving you a favorable long term prognosis.  Realistically you are considered higher risk, but it will really depend on how well you respond to the drugs.  Assuming your counts go back to normal and you start hitting the proper milestones there is good reason to believe that things will be alright.  With Accelerated Phase it is important to be seen by a specialist with experience treating CML.  Even the Accelerated Phase diagnosis can be tricky and sometimes people who are in CP are told they are in AP so if you are not with a good cancer center with CML specialists, you should seek out a second opinion.  Otherwise nilotinib is the way to go and you just need to give it some time to work.  I have seen posts from others who were in AP who are now doing very well so there is good reason to be optimistic.

All the best.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#5 Trey

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Posted 11 September 2012 - 04:01 PM

What in particular caused your Onc to diagnose Accelerated Phase? 



#6 alexamay09

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Posted 12 September 2012 - 03:49 AM

Thanks callmelucky and Trey

I am under the care of a consultant haematologist who really seems to know her stuff.  She has to confirm following the bone biopsy and another cytogenetic test but said that there were 10% blast cells in the sample, the level at which they consider it to be in 'accelerated' stage.  She started me immediately on high dose nilotinib.  I'm certainly hopeful for a positive outcome.  This thing just hit me like a bus though - it seemed to go downhill very fast.  I don't know if my blood counts 'translate' to the US ones as they look very different.

My WBC was 240 when the 'norm' here is 9 or so.  After one week on hydroxycarbamide it was down to about 40 so a big improvement.  My haemoglobin was down to 8.6 (optimum is about 12 I think) so I was pretty breathless and tired.  Had a blood transfusion yesterday so hopeful for an improvement.

Thanks again everyone - its just good to have contact with people who understand.

alex

x



#7 Trey

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Posted 12 September 2012 - 09:13 AM

The determination of CML Phase is more of a continuum, and less about hard break points.  There is not much difference between "high Chronic" and "low Accelerated" Phases.  While the blast count is useful, it alone is not enough to show your status.  The rest of the BMB report will be very important in showing your true status.  So I would not be so focused on the "Accelerated" term since if you meet the definition, it would be just barely, unless the BMB report shows additional high risk factors.  The real issue for you will be whether you respond well to drug therapy, and you probably will. 



#8 alexamay09

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Posted 13 September 2012 - 08:04 AM

Thankyou Trey - that information is really helpful and I am hopeful for a good response to Nilotinib






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