5 replies to this topic

[PattyM]

Good Evening Everyone,

I have been on Gleevec 400mg for over 10 years and my recent bcr-abl came back showing signs of resistance.  My hematologist doesn't have many CML patients so he is consulting with others before any changes in my meds are made.   I will  also be going back to Dana Farber in Boston for second opinion.

Does anyone have a similar story and if so would you mind sharing with me?  I would like to know if other meds are successful with most who have has resistance challenges.  I am not feeling good about my recent news and am so frightened of the future and any information you could provide would be greatly appreciated.

Thank You in Advance!

Patty

[Susan61]

Hi Patty:  I am on Gleevec for 12 years, and I got to PCRU after 2 years of being on Gleevec.  Did you get to PCRU, and then lose your response?  I have not seen anyone who got to PCRU have this happen.  In most cases responses were lost earlier than 10 years.  I am sure someone can help you who may have had a similar experience.

I wish you the best as you go for a second opinion.  Please keep us updated.  I always advise 2nd and even 3rd opinions to be sure of treatment.

Susan

[CallMeLucky]

Resistance does happen it is not common after 10 years assuming you had reached MMR, but even then it does happen.  What was your PCR status and what is it now?

Dr will likely do a mutation analysis to see if a mutation is the cause of resistance.  If there is a mutation it will help guide them to which drug would work best for you.  If no mutation then a second generation tki would likely be the next choice and it is highly likely it will work.  The next generation drugs are pretty good at overcoming resistance in chronic phase.

It's not something you want to see happen but good reason to believe that a drug switch will get it back under control.

[Trey]

The term "resistance" has different meanings.  You would need to describe what the tests showed.  If it was merely an increased PCR, then it is possible that it might be a test error.  The PCR should be repeated.

[Gregda]

VERY sorry to hear of your recent development. I've heard there is a 'Gleevec 2' that is slight difference from the orig Gleevec. Might just an increase in dosage help?  Healing vibes and more perseverance !

[articvibe]

Hey pat i cant speak for much of my experience with gleevec as i was only on the drug for about 2 years before my body started showing resistance to the medication and i was changed to disatanib (Sprycel) cant speak much for its long term changes as ive only been on it for about 6 months now but it might be worth looking into or talking to your doctor about if you would like to consider other options.