13 replies to this topic

[JPD]

Dx Oct 13, full regimen of Tasigna started January '14 

 

 

 

March 14                         16%

June 14                            3.5%

September 14 -               1.0%

December 14 -                 .53%

March 15 -                        .78%

June 15 -                        1.1% (switched to 400mg Tasigna)

September 15 -                .85%

 

My onc doesn't think a change is needed - and he says there is growing thought that if a person stays under 1% that they might be just fine - he actually said "you are in a group of people that we don't know quite what to do with".

 

AND, most importantly perhaps, I have almost ZERO side FX with Tasigna.  Id hate to get on another drug and have it rip me a new one...

 

Just f*cking despondent over the whole thing.  Was REALLY hoping for a much deeper response result.

 

Thoughts?

[tammielee]

the biggest prob is we don't know what this % are  white blood count, red blood, platlets .If you like your dr. and u have no side effects stick to the med you have.

[kat73]

JPD - Understand your feelings, but you really are doing pretty well indeed.  Some of us take a lot longer, that's all.  Go, Turtles!  You're going in the right direction, that's the important thing.

[Lucas]

I would wait more 3 or 6 months. It's a plateau. You're not losing response. Good luck, buddy!

[chriskuo]

What was the reason for your dosage change?

[soundoff]

Stick with the Tasigna! Don't pay any attention to the numbers. Have a cold drink and enjoy the day.

[JoshLee]

Hi JPD, 

 

     I feel as though I can be some comfort on this issue because I have gone through a very similar experience and almost 5 years later am here to tell the tale. I started on Tasigna and had CCR around 9 months into treatment. However, there I stayed for a few years and it caused me unbelievable disappointment and anxiety. Especially when you log on this board and everyone seems to magically hit MMR in like 2 weeks. I switched to Sprycel 140 mg and saw some improvement relatively quickly. I have a better response, but it is not near as deep as most peoples. I sit around .1% and have never drifted lower. I think the big take away from this is that if you have attained CCYR, you are safe as safe can be as that is and has repeatedly been found to be the true "gold standard". There are a few studies that show that there is absolutely no need to switch therapy if the patient is CCYR. It's hard because you want the CML to go away, but for many it remains a companion. If you want a second opinion, get one. If you want to switch for piece of mind, find a doctor that will do that for you, but know that clinically there is not a need to switch unless you lose CCYR. 

[JPD]

Thanks JoshLee - it is hard coming to terms with being a Turtle.  My Onc says stay the course, so I guess that's what Ill do.  Hopefully I continue to drop slowly.  Id be happy as a pig in sh*t to be down at .1%

[JPD]

What was the reason for your dosage change?

The pop up to above 1%.  He just wants to see if we can drive it down to MMR (so do I  ).  So far, no greater side fx - just some more hair loss, but since I shave my head, its not a biggie.

[kavis]

I just posted on this JPD...I went all the way to 0.01% and am now showing 0.4%...so my onc is not sure which was the outlier.  I'm retesting and checking for a mutation, but I'd like to stay with Tasigna at this point because I have no side effects.

 

Frustrating when it goes in both directions instead of just down!

[Billie Murawski]

jpd,chrissy,

I've been in that category all my life .                            Billie

[soundoff]

Why aren't you on 600mg of Tasigna?

[JoshLee]

"you are in a group of people that we don't know quite what to do with".

 

 

​     This is actually legitimate. When I was hovering around 1% for 2.5 years I was continually frustrated as I sought a second and third opinion and I always got that answer. You aren't doing poorly, but you are not failing treatment. I think the bottom line is that the disease is essentially "frozen". It is not unheard of for people to have a delayed "phase two" response where there is continual improvement. 

[Trey]

Some original TKI users took many years to get to MMR and lower when only Gleevec was available.  But if they remained CCyR or better, almost all of them eventually got below MMR and many to PCRU.