15 replies to this topic

[elvis]

Hi,

 

Switched to sprycel jan 2014.   diagnosed in 2008 July. Been with Gleevec and Tasigna for the first five years.

 

PCR before starting tasigna - 0.1 on the IS (told this is MMR).

PCR 6 weeks after starting sprycel -   (0.05) - my doc was happy to see this number.

PCR 12 weeks after starting sprcyel -  (0.035) - Further down so happy

Last PCR after about 6-8 months on sprcyel (0.040) - Still stable.

The latest PCR (last week)                         (0.09)  - Almost back into 0.1.

 

Is it trending backwards? Little concerned about the latest uptick.

 

Should I be worried or perform mutation checks?  My doc told me he will repeat PCR in 6 weeks this time around.

 

Thanks

Elvis

 

[Trey]

These results are pretty much in a narrow range.  A plateau in PCR results is fairly normal.  Just repeat in 6 weeks as the Onc says.

[CallMeLucky]

My PCR has been bouncing up and down on Sprycel. Three months ago I ws PCR negative now 0.04. I'm repeating test in two more weeks. It's probably fine for both of us, but I never stop worrying

[tinman1939]

I share your bouncy results. The chronology of my PCR tests since April:

56.6%
16.3%
54.9%

10.7%

12.95%

Usually don't get so many tests in this relatively short amount of time, but onc. wanted some re-tests (at one-month intervals) after the 54.9% reading.

 

Not great results, but not bad enough to change treatment (on Iclusig since April; 15mg/day 'til July, then 30 mg/day since). Have no mutations.

 

[CallMeLucky]

Tin man

Why Iclusig with no mutations? We're you in an advanced stage at dx?

[tinman1939]

Diagnosed in 2006; on Gleevec for six-plus years. Resistance led me to try Sprycel, Tasigna and Bosulif - but discontinued my attempts with two due to a common, unpleasant side effect (rash/nodular cysts). Though I had the same side-effect with Iclusig, too, it has been treated successfully by a dermatologist. 

[CallMeLucky]

So your disease is resistant to treatment but they can't find any mutations? That sounds scary. Do they have any idea why you are not responding well? We're there any complicating factors like accelerated phase? Did you ever reach MMR and then start going up or was it always a challenge from day one?
Sorry if I'm asking too many questions I'm just curious. You don't have answer if you don't want to.

[tinman1939]

Have never left Chronic phase. Don't recall if I ever reached MMR in the early years on Gleevec, but there was never any concern until a year-or-so ago. Since then, a bit rocky, but am determined to get under 10%, then 1%, then .1%.  Am a bit concerned that, on Iclusig since April 7, I have yet to attain those milestones.  But, my oncologist (from the well respected Baylor Cancer Center) just wants me to continue along on my 30mg/day routine.So I am ...

[CallMeLucky]

Thanks for sharing love the determination
Best of luck
Please keep us up to date.

[DaveL]

Tinman,
I was just wondering what your dermatologist prescribed for the skin problem that cleared things up?

I am sorry to hear how slow your response is to ponatinib. I hope eventually it will work for you!

Diagnosed in 2006; on Gleevec for six-plus years. Resistance led me to try Sprycel, Tasigna and Bosulif - but discontinued my attempts with two due to a common, unpleasant side effect (rash/nodular cysts). Though I had the same side-effect with Iclusig, too, it has been treated successfully by a dermatologist.

[elvis]

December 1st Status

----------------------------

Hi,

 

Switched to sprycel jan 2014.   diagnosed in 2008 July. Been with Gleevec and Tasigna for the first five years.

 

PCR before starting tasigna - 0.1 on the IS (told this is MMR).

PCR 6 weeks after starting sprycel -   (0.05) - my doc was happy to see this number.

PCR 12 weeks after starting sprcyel -  (0.035) - Further down so happy

Last PCR after about 6-8 months on sprcyel (0.040) - Still stable.

The latest PCR (last week)                         (0.09)  - Almost back into 0.1.

 

Is it trending backwards? Little concerned about the latest uptick.

 

Should I be worried or perform mutation checks?  My doc told me he will repeat PCR in 6 weeks this time around.

 

Jan 20th Status

-------------------------

 

Today the PCR results came out after 6 weeks. My PCR showed an increase and has reached (0.11).   It is now consistently ticking up for the last three readings.

 

My Doc says he will test again in Feb 2015 before considering any other options.  Not sure if anyone has experienced in between increasing trends followed by decreases. Is it temporary uptick due to quiescent CML cells becoming active?

 

Little worried now.... Not sure what my options are right now...

 

Thanks

elvis

 

[Trey]

Still a fairly narrow range.  Not what you want to see, but also not jumping up rapidly.  No mutation test needed -- too low to detect and does not act like one. 

 

You could look at what could impact absorption.  Are you taking a PPI, antacid, or NSAID?  Anything else? 

 

Maybe try taking a Vit C pill along with the Sprycel to aid absorption (adds acidity). 

[elvis]

I take beta-blocker (metaprolol 25 mg, hydrozyxine 25mg and vitamin d). I do not take PPI or NSAID or antacid.

 

Little puzzled with the slow rise.... I was put on Sprycel beginning 2014 from Tasigna 800 mg which I took for 4 years  due to rigorous rash and sort of plateauing on the response ( no downward trend though). I still reached MMR through Tasigna and response was slow. However it did not vary so much with Tasigna.

 

The doctor wanted to see how I do in sprycel.  It is almost 9 months since I started sprycel.   Now the response is little see saw and then creeping up although narrowly

 

Is going back Tasigna still an option given that was more stable rather than fluctuating?

[Trey]

If the trend continues higher on the next PCR, going back to Tasigna could be a reasonable approach.

[elvis]

Feb 14 Status

----------------------

 

The subsequent PCR results came out today along with mutation tests.  Good news and not so good news.

 

Good news -

----------------

 PCR swung back to 0.04%.

                         Fish negative

 

Not so Good

----------------

              

However Mutation test came back with a surprise.   Deletion of exon 4 with majority of clones missing 184-274 (about 91 amino acids).  No other point mutations except this being observed.  However it is not in Kinase domain as I am told hence should respond to sprycel or Gleevec or Tasigna.

 

Anyone aware of this or heard about it?  My doctor wants to repeat in 6 weeks and keep observing now that we have seen this in the result.

 

Little bit of a bummer.  Please let me know if anyone is aware of any of the details on deletion of exon4.

 

Thanks & Regards

elvis

 

December 1st Status

----------------------------

Hi,

 

Switched to sprycel jan 2014.   diagnosed in 2008 July. Been with Gleevec and Tasigna for the first five years.

 

PCR before starting tasigna - 0.1 on the IS (told this is MMR).

PCR 6 weeks after starting sprycel -   (0.05) - my doc was happy to see this number.

PCR 12 weeks after starting sprcyel -  (0.035) - Further down so happy

Last PCR after about 6-8 months on sprcyel (0.040) - Still stable.

The latest PCR (last week)                         (0.09)  - Almost back into 0.1.

 

Is it trending backwards? Little concerned about the latest uptick.

 

Should I be worried or perform mutation checks?  My doc told me he will repeat PCR in 6 weeks this time around.

 

Jan 20th Status

-------------------------

 

Today the PCR results came out after 6 weeks. My PCR showed an increase and has reached (0.11).   It is now consistently ticking up for the last three readings.

 

My Doc says he will test again in Feb 2015 before considering any other options.  Not sure if anyone has experienced in between increasing trends followed by decreases. Is it temporary uptick due to quiescent CML cells becoming active?

 

Little worried now.... Not sure what my options are right now...

 

Thanks

elvis

[Trey]

Your latest PCR is essentially flat (unchanged) from the previous one.  You are still MMR so there should not be a reason to be worried. 

 

The exon 4 deletion you mentioned is not in the "Kinase P-Loop" where the TKI drugs work, so it is not a kinase mutation that affects drug binding.  So your exon 4 deletion mutation should not be an issue.  It is odd that it was even detected.  A number of patients likely have this deletion and don't know it.  Some of the deletions actually make the BCR-ABL easier ti kill off.

 

The article below summarizes the issue by saying:

"In summary, the clinical follow-up in these patients reveals no consistent association between the presence of deletion mutants and relapse."

http://www.nature.co...leu200865a.html