5 replies to this topic

[Teresa0875]

Hi,

Recently a loved on was diagnosised with CML in the blast phase.  I have done research and I see that recovery is possible but not probable. He starts Tasigna this week. I am wondering if anyone has experience with recovering in the blast phase.

[NotJack?]

Here is something that might help,  it is great and accurate info.  It is a small piece of Trey's CML blog.  That is in my opinion the best source for good, current information.  Thanks again to Trey:

Phases of CML

Here is an excerpt on what defines transition to the accelerated phase of CML:

"The most objective findings are a blood blast percentage greater than 10, a platelet count less than 100,000/l (100 x 109/liter), blood basophils greater than 20 percent, and new clonal cytogenetic abnormalities accompanying the Philadelphia chromosome."

http://www.accessmed...spx?aID=2148911

Some put the blast cut-off at 15%. It is not an absolute.

Generally, people with CML usually respond better to treatment if they are diagnosed and treated early. But everyone is different.

Here is a paper on treating Advanced Phase CML:
http://www.ufscc.ufl.edu/Patient/content.aspx?section=ufscc&id=765

Also, some patients are mis-diagnosed as in accelerated phase because of higher white blood cell counts, which is not appropriate. The most reliable indicators of accelerated phase are a blood blast percentage higher than 10% and additional chromosome abnormalities accompanying the Philadelphia chromosome. Ask the Onc why the diagnosis is accelerated phase.

There are a number of accelerated phase patients on this site, and doing well. We have options, which is the "good news" about CML.

That might be called "low end accelerated phase". These things are not so concrete as they might seem. Also, Gleevec could bring her back into chronic phase. The good news is no additional chromosome abnormalities, so things are probably not so bad. If the Gleevec works and stabilizes her cell counts, then most Oncs would not rush into a SCT.

Hope that this helps, Jack

[NotJack?]

One more point,  do not assume that the proper phase has been determined, unless verified by a CML specialist.  There seems to be a number of general oncologists who are not up on the fine points of diagnosing the phases properly.  A second opinion from a CML expert is a good idea.  Folks here can steer your loved one to a good one their  area.  Take care, Jack

[alexamay09]

hi Teresa

I was diagnosed last September suspected accelerated phase. it was never completely confirmed but i had a fair percentage of blasts. 7 months on the bcr-abl count is gradually coming down. I am due my latest results on Friday from my third BMB.

i am on high dose sprycel after starting on tasigna. I am happy that my recent bone marrow sample was much improved though not 'normal.  I dont focus on where i was at diagosis, but rather on where i am now. It can be really frightening but i try to remain optimistic. your relative would get great comfort from this group, as I do. I am in the UK where there is much scantier information given to patients, and this site is full of knowledgeable people. It has been a godsend. I am not a statistic, so do not look at prognostic stats.

Alex

[Trey]

Teresa,

Just to make sure you understand the inputs above, there are two main issues involved:

1) Diagnosis of Blast Phase is tricky and not always done properly.  So a second opinion by a CML Specialist is a very, very good idea.

2) The drugs work for some people better than for others.  But they usually work best in Chronic Phase, less well in Accelerated Phase, and least well in Blast Phase. 

Most properly diagnosed Blast Phase patients would do well to do the following:

1) Try a CML drug to see if there is good response.  But the experience by many Blast Phase patients is an initial response to some degree, then often a loss of response after some amount of time (about a year or so).  Everyone is different, and there are exceptions.

2) Take steps to plan for a possible bone marrow transplant.  The actual transplant decision can be made later, but the planning can be extensive and time consuming, so an early start is a very good idea.

3) Do NOT use an inexperienced Oncologist.  A CML Specialist is CRITICAL for Blast Phase CML.  This cannot be emphasized strongly enough. 

[Teresa0875]

Trey,

Thanks for your input. He like his current oncologist but I am trying to convince him to see a top CML specialist in our area.

Teresa