3 replies to this topic

[tinman1939]

Details below.  Close, but no cigar, as they say.  Can't seem to break through that 10% milestone. Maybe it will occur on my one-year anniversary with Iclusig. Was actually diagnosed in November 2006 and was on Gleevec for several years before showing resistance. Tried a couple of TKIs before settling on Inclusig. Aside from the odd Oct. 3 result, there has been good improvement from the baseline reading (56.6%), taken just prior to the start of my treatment on Iclusig, to this past week (10.85%). But, like I said, it sure would be great to get below 10% and set my sights on 1% or better.

 

 

(Started Iclusig, or Ponatinib, on April 7, 2014)

 

Date of PCR Test                                               BCR/ABL (IS Scale)

April 2, 2014                                                          56.6 %

July 3, 2014                                                           16.3 %

Oct. 3, 2014                                                           54.9 %

Oct. 17, 2014                                                         10.7 %

Nov. 24, 2014                                                         12.95 %

Feb. 17, 2015                                                         10.85%

[Trey]

Still stuck on the Big Dipper butt end with the Cigar Galaxy no where in sight.  Progress will likely be slow due to your long history without a "good" response to TKI drugs.

[tinman1939]

As long as there is "progress," I guess I can't complain. Oncologist wants me to continue current therapy (30 mg/day). I hope someday to share some great news; for now, will have to settle with this cigar butt :  )

[PJM]

Good Morning

 

I read your post about Iclusig and I have a few questions.  I am on this tki too after failing both Tasigna and Sprycel.  I was diagnosed last April.  How long ago were you diagnosed and are you Sokal high risk like me?   I was started on 15 mg of Iclusig but was increased to 30 mg because PCR showed an increase from 9% to 12.26%.  (Diagnosis revealed 145% BCR/ABL but the other 2 tkis never got my CML under 30%; I was switched from Sprycel to Iclusig when PCR was over 40% and rising).     It seems that both us of have a similar battle to get our CML under 10% while others on this blog are way below that number with most under 1% or undetectable.  I am thrilled for them, but concerned for people like us whose BCR/ABL is still not well controlled by a tki.

 

The increase in Iclusig has raked havoc with my blood counts which, by the way, have never returned to normal with any tki.    My WBC count runs around 1.7 so I have received weekly injections of neupogen for months. My hemoglobin is around 8.1 or so, and my platelets over the last 2 weeks have been 12,000 and 15,000 respectively.  I have had 2 platelet and 1 blood transfusion as a result.   Tests have not revealed a mutation in my case.   Is this your experience too???