8 replies to this topic

[CallMeLucky]

http://www.marketwat...emia-2012-07-27

[Tedsey]

Thanks.  This is something for me to consider.  If my next PCR does not come back MMR, I may want to enroll.  I have been dx just under 3 years and still CCyR.  I cannot help but think that I have a mutation yet to pop up and I am just waiting to lose CCyR.  In the beginning, my first onc believed I did not have any healthy stem cells left (hence, my immediate drop in blood counts while on Gleevec).  That is why she wanted to prepare me for a SCT.  This was until she contacted Dr Druker.

Almost three years later, with the red cells improved enough not to need shots, but still more than a little low, the WBC have not recovered much (ANC waffles, but is usually at least 1.0 and I can just get by without shots).  I think this may be telltale that my blood quality is still very poor, even on 100mg Sprycel (with never a missed pill or break since my first few months on treatment).  I understand that while on a TKI some people have slightly below normal blood counts.  However, mine are still way out of whack.  This scares me.  I would like to be proactive.  It appears with all these exciting discoveries, they have yet to use any clinically.  It is still the ol' and risky SCT in the end.  Don't ever want to go there, but I also do not want to die from CML or any complications thereof.

Thanks Luck,

Teds 

[scuba]

Hi Teds,

Sprycel can cause deeper myelosuppression than the other TKI's. I could not tolerate even 70mg. Sprycel without my Neutrophils tanking to 0.1. Even on 20mg. Sprycel, my Neutrophils have stabilized at around 1.3 to 1.4. My red blood is 25% below normal, but apparently is o.k.

I am eager to see if I can get to PCRu - just so I can go off Sprycel and see if my blood counts truly normalize (like 25% more red blood!) without the disease coming back. We'll see.

Would you consider a lower dose of Sprycel when you reach MMR just to see if your counts recover some?

[Susan61]

Hi:  I know 2 people who have never joined out group here, but have failed every treatment so far.  They both did the ARIAD trial, and the one got to PCRU in a matter of months after many years of struggling.  The other woman has had CML for 16 years, and has lived with just reaching a Ccyr, but now is getting close to PCRU with the Ponatanib.

They both said there were no side effects for either one of them, and have tolererated the drug very well.

    I hope this works for many others, and I would definitely look in to it for yourself Teddy if you feel you want to try it.

Susan

[chriskuo]

This is a new trial for the newly diagnosed.  They have closed the trial for those who have been previously treated.

Hopefully, approval for that use will come within a year.

[Susan61]

I forgot they closed that trial, but with the good results they have gotten I am sure they will get approval.

Its just good to know there is more beyond our routine TKI's.  The one woman I was referring to has lived with her CML for 16 years always looking for a new way to get to PCRU.  She just turned 84, and I hope she gets to her goal.

She never gives up trying, and always keeps in touch with me.

Susan

[Trey]

The primary endpoint showing success in the trial is 49% MMR within 12 months, which is very aggressive.  I hope they can meet that success criteria. 

FDA approval as a front-line drug will likely be about 2 years from now (summer 2014) since it will take about 6 months to recruit the required number of newly diagnosed participants, 12 months to get the primary endpoint MMR stats on that population, and about 6 months to analyze results, report to the FDA, and hopefully get an approval.  Hopefully they can get second-line drug approval by mid 2013.

[pamsouth]

Susan,

Thanks for sharing:

"The other woman has had CML for 16 years, and has lived with just reaching a Ccyr, but now is getting close to PCRU with the Ponatanib." & she is 84 Years!

16 years at CCYR.  Just thinking what good news that is for those that were only to obtain a CCYR.

PamSouth

[Susan61]

Hi Pam:  Yes, she is a very amazing woman, and I wanted to share her experience so people can see how many people have actually survived without getting to PCRU.  As she gives me her latest results with the ARIAD trial,  I will let everyone know how she is doing.

Susan