8 replies to this topic

[critchhwc]

I was dx with cml in June 2006 and was pcru by December of 2007.  I remained pcru until

I was dx with CML in June 2006.  I was pcru in December 2007.  I remained pcru until August 2011, at which time may ratio was 14 copies in 100,000.  In June 2012 I moved and my new lab returned a report of 0.051%.  In January 2013 the same lab reported 0.083%.  In July 2013 the same lab reported 0.091%.  The latest report this month is 0.537%.  I haven't seen the doctor yet.  I have scheduled to see another doctor for a second opinion but will know nothing until the 19th. 

Should I be expecting a change to disatanib?  If so, what can I expect from the switch?  Will I immediately stop imatinib and go to disatanib?  What kind of response window will be established?  Is it unreasonable to anticipate a return to CMR?

All other blood markers are in normal ranges except red blood cells, hemoglobin, and hematocrit; they are just slightly low; they always have been since starting imatinib. 

I have been feeling great.  Lot's of energy, swimming 1.5 miles a day and am very busy living out my retirement dreams.  I desire honest guidance. 

[Marnie]

I can't give you guidance about whether or not you should switch medications. . .that's between you and your doctor.  However, if you do switch to Sprycel, I would suggest the following.  It worked for me when I switched from 400 mg Gleevec to 100 mg Sprycel.

I took a 7 day drug break.  Then I started Sprycel at half dose (50 mg) for 5 days before going to full dosage of 100 mg.  I had heard horror stories about the Sprycel headache, which can be pretty awful.  I experienced only a low grade headache for about a week.

I've been on Sprycel for just over 3 years (about a year and a half on Gleevec before that).  I've felt far better on Sprycel than I did on Gleevec. ..no GI issues, which were an annoyance on Gleevec.  After a year or so on Sprycel with absolutely no side effects, I started to get a rash on my hairline, then my scalp, and then in my ears.  Not so bad that I couldn't live with it, but certainly an annoyance. . especially on my motorcycle, where I wear custom earplugs. 

I've recently had 2 pleural effusions. . .a known side effect of Sprycel.  I've reduced dosage to 50 mg, which has almost completely cleared up the rash, and I've remained PCRU even after two short drug breaks due to the p.e. 

Probably more information that you were looking for, sorry about that.  The short version is. . .Sprycel has been FAR better for me than Gleevec. . .better PCR numbers and fewer side effects.  The pleural effusion was bad (1.6 liters of fluid drained out of my left lung). . but I think lower dosage is going to do the trick.

If you do switch to Sprycel, be sure to talk with your doc about starting with a half dose to mitigate the horrific Sprycel headache.  It worked great for me.

Good luck!

Marnie

[Trey]

Since that is a loss of MMR, you should change drugs.  A Kinase Mutation Test probably will not work at those levels (generally only works at less than CCyR levels) otherwise that might be worth doing.  But any of the other drugs would most likely work and a return to CMR would be a likely scenario.  It is rare to lose response after being in CMR for that long, but it can occasionally happen as you have shown. 

[reedgirl]

So sorry to hear about your response to the drug, you have experienced my worst fear!  Hope and pray you are able to get to a doctor, get some answers and get on a better drug to reach CMR very soon!!

Keep us posted,

Audrey

[critchhwc]

Thanks for the info.  I just want to know the facts so I don't waste time with indecision

[critchhwc]

What do you think the response parameters will be?  i.e. how long will it take me to reach the benchmarks?

[critchhwc]

Thanks, that's what I am shooting for.

[Trey]

Regarding "how long will it take me to reach the benchmarks", there is no single answer.  We all respond differently and at different rates.  But you should know within a couple months after changing drugs if the new one is working well enough.

[thomaskk]

Hi Critchwc

I was just going through your old post on raising PCR. How are you doing now ? Have you changed the TKI ?

Thomas