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The importance of seeing a "CML Specialist"


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#1 CallMeLucky

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Posted 16 June 2014 - 11:14 PM

We have often seen the question come up if it important to see a cml specialist.  In general the advice has been unless there is something high risk about your case a regular oncologist should be able to treat you appropriately given the well published treatment guidelines.  This study suggests it may be in everyone's best interest to seek consultation with a specialist if their doctor does tend to see many cases and has limited experience with TKI drugs.

http://m.clinicalonc...1070&a_id=27634

Knowledge Gaps Common in Blood Cancer Treatment

New Orleans—A study designed to identify practice gaps among oncologists in the treatment of acute lymphoblastic leukemia (ALL), B-cell lymphoma (BCL) and chronic myelogenous leukemia (CML) found plenty, particularly related to the optimal use of tyrosine kinase inhibitors (TKIs). According to the study, only about one-third of clinicians recognized the prognostic significance of a major molecular response (MMR) with a TKI, and less than one-third were familiar with prevailing expert opinion regarding the timing and frequency of cytogenetic analyses.

The results of this study "suggest that a significant proportion of U.S. hematology and oncology specialists are not applying optimal care for patients with ALL, BCL and CML," concluded the authors, led by Kevin L. Obholz, PhD, the senior managing editor at Clinical Care Options, in Reston, Va., who presented the data at the 2013 annual meeting of the American Society of Hematology (abstract 901). B. Douglas Smith, MD, an associate professor of oncology at Johns Hopkins' Sidney Kimmel Cancer Center, in Baltimore, was the senior author.

In this two-phase study, hematologists and oncologists were required to treat at least two cases of ALL, BCL and CML annually and at least 10 cases of these diseases combined, to participate. An exploratory qualitative phase included a Web-based survey, in which 27 participants were invited to answer case-based questions as well as a 45-minute telephone interview. In this phase, the goal was to determine the reasoning behind clinical decisions, to guide development of the second, quantitative phase.

In the second phase, participants answered multiple-choice questions on clinical decisions based on case vignettes. The answers submitted by the participants to these questions were compared with answers derived from guidelines and expert options reflecting optimal practice. Of the 209 subjects initially recruited, 121 who met study eligibility criteria completed this phase.

Disparity among responses suggests that there are major gaps in practice and particular confusion about the goals of treatment with TKIs. Of the answers in the second phase that were most worrisome, only 38% of participants agreed that achieving an MMR with a TKI substantially reduces the risk for disease progression. Moreover, only 33% recognized that early molecular responses to a TKI correlate with better outcomes among patients with chronic-phase disease. When asked about timing and frequency of cytogenetic analyses, only 22% provided answers that were consistent with currently recommended schedules.

These disparities indicate that there are practice gaps that could threaten optimal outcomes. For example, these data suggest that a large proportion of clinicians would be unable to individualize patient care because they are unfamiliar with the goals of TKI treatment. Beyond the fact that many clinicians were uncertain about how to identify a suboptimal TKI response, less than 30% of clinicians could name the targets of promising agents in Phase III trials, which included, at the time of this survey, idelalisib (Gilead) and obinutuzumab (Gazyva, Genentech). This lack of knowledge suggests a potential barrier to referring patients to clinical trials, as well as a barrier to using these novel agents, if they are approved.

The main message of this study, according to the investigators, is that more educational initiatives are needed to reach practicing physicians about pathways of managing ALL, BCL and CML, particularly in relation to TKIs. The authors specifically recommended performance improvement interventions, because molecular targets make individualized treatment increasingly important for patients with hematologic malignancies.

Elias J. Jabbour, MD, an associate professor of medicine in the Department of Leukemia at the University of Texas MD Anderson Cancer Center, in Houston, suggested that asking community oncologists to become experts on TKIs to optimize management of CML and other uncommon hematologic malignancies may be setting the bar too high. He noted that CML, for example, is a rare cancer that a community oncologist might encounter only one or two times in a year.

"The treatment options for CML are growing more complex. While it may be important for the community oncologist to be familiar with newer therapies, these cases should be managed at least in collaboration with an academic center where there is expertise and a higher volume of cases," said Dr. Jabbour, noting that there is data demonstrating better outcomes with TKIs in hematologic malignancies at academic centers.

"The use of TKIs is getting increasingly individualized," Dr. Jabbour said. It is important, for example, "to understand the milestones of response" to optimize care and consider alternative agents in a rational sequence. While not all care has to be delivered at an academic center, he said that he believes that it is more important to offer care in collaboration with an expert than attempt to master this expertise in a practice where the number of patients with these types of malignancies is limited.

—Ted Bosworth

Drs. Obholz and Smith reported no relevant financial conflicts of interest. Dr. Jabbour disclosed financial relationships with Ariad, Bristol-Myers Squibb, Novartis and Pfizer.


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%
 

 


#2 Melanie

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Posted 19 June 2014 - 12:44 PM

Thanks for posting this article. It reaffirms the importance of being our own best avocates and the importance of trying to stay as educated as possible about the guidelines for treatment and the important milestones to achieve for optimal response and disease control. I've found that the more educated questions I ask my Dr, the better sense I get of what his experience and knowledge levels are in relation to CML. He hasn't disappointed me and I have extreme faith in him.  When my case fell outside the "normal" guidelines, he suggested seeking a consultation with a specialist at an academic center because of their vast experience and expertise. They have access to so much more than my regular local hemotologist/oncologist. It proved to be good advice, because as the article states...

"The use of TKIs is getting increasingly individualized," Dr. Jabbour said. It is important, for example, "to understand the milestones of response" to optimize care and consider alternative agents in a rational sequence. While not all care has to be delivered at an academic center, he said that he believes that it is more important to offer care in collaboration with an expert than attempt to master this expertise in a practice where the number of patients with these types of malignancies is limited.


Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#3 Trey

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Posted 19 June 2014 - 02:14 PM

Personally I would not mix ALL, BCL and CML together when discussing the need for a specialist.  The only drugs mentioned in this article are not CML drugs. 

If a patient followed the logic in this article then everyone would need a Specialist.  The sentiment sounds nice, but the reality is life just doesn't work that way. 






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