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Does any one know of a great CML Specialist near Naples, FL

CML specialist

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#1 waselman

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Posted 01 July 2015 - 11:30 AM

I am getting very discouraged with my hematology/oncologist here in Naples and was looking for a CML specialist.  I had a ABL-1 Kinase domain Mutation test come back positive.  She wants me to get it re drawn (which is $1500) because sometimes there are FALSE positives.  I refused and now am getting the run around.  I am 43 years old and was diagnosed 10 years ago. I have been on Gleevec 400 mg for those ten years except when I had my daughter in 2008.  Since then, I have not been in MMR, and my bcr/abl ratio is steadily increasing for three years, now at .875.  Does any one know of a CML specialist in Florida?



#2 Lucas

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Posted 01 July 2015 - 01:09 PM

hi, waselman, sorry to hear about it. it must be a shock after ten years have a mutation detected. I can help you with a doctor in your city, but, about mutation's tests, it's more common to have false negatives, if i were you, i'll try to find a doctor in a great center, just for reassurance.i failed gleevec and i'm on tasigna now (doing good) and i know the feeling to not do well on a drug. You have to know that most of mutations can be overcome by an increased dose of gleevec and that are other medications that overcome most of the gleevec resitant mutations. let us know your lowest pcr and what was your pcr trend. were you adherent to therapy? good luck!



#3 hannibellemo

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Posted 02 July 2015 - 04:43 PM

Waselman,

 

So sorry to hear about the mutation, as Lucas said, after so long that had to have been a shock. Which mutation is it? Knowing that can guide your steps as to which TKI needs to be used next. 

 

I realise this is not an answer to the question you asked but I hope it will be helpful anyway.

 

You can find a chart in this paper that lists some of the more common mutations and which TKI works best on them. Scroll down a few pages to find it. This particular chart only shows sensitivities of imatinib, dasatinib and nilotinib. 

 

http://www.jscimedce...atment-1022.pdf

 

Good luck!


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#4 Trey

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Posted 03 July 2015 - 08:08 AM

Which kinase mutation did the test show?  Even if it is a false positive you should change drugs, but some drugs do better than others when a mutation is present.



#5 waselman

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Posted 03 July 2015 - 02:05 PM

I have talked to my Hematology/Oncologist and she is sending me to Moffit Cancer center in Tampa to see a CML Specialist.  She pretty much said to me she did not feel comfortable about my mutation and myself being only 43 years old.  It was the ABL1 Kinase Mutation, that's all I know. I have been on Gleevec for ten  years, besides going off for a year to have my daughter.  I am hoping I can get in to a CML specialist soon.  Just don't want to worry too much more about this.  My bcr/abl has been below 1% and hovers around .875.  Thank you all for your help.  SO much has changed with this disease in the past 5 years, I just have not kept up on the research because I was doing so well.



#6 Trey

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Posted 05 July 2015 - 09:02 AM

The answer is to switch drugs.  This should have been done a long time ago since you never achieved MMR.

 

There are over 100 known ABL1 Kinase Mutations.  Most kinase mutations do not impact drug response, or if it affects Gleevec it normally will not affect Sprycel or Tasigna.  But you should know which mutation it is to help decide which drug to switch to since it sometimes can make a difference.






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