17 replies to this topic

[Mayra]

So I'm a little disappointed that I have not hit MMR and I'm 21 months in since diagnosis.  On the positive I feel great and I'm alive.  I have a doctor appointment tomorrow.  Is there anything I should ask?  I've been on Sprycel from the start.  Any advice would be appreciated. Thanks, Mayra

 

   Lab Standard.              International

12/12                3%.                           Not Done

2/13                  .37%.                             6.29 %

5/6                 Not done                          6.49%

6/26.              Not done.                          0.4602

9/18               Not done.                          0.2056

12/6.                                                        0.29

2/07.                                                        0.0315- Done at a Lab out of state

May                                                        Undetected-Done in a lab out of state

July                                                        .13

September                                             .15

 

 

 

[August1]

Congratulations! Great news!

[reedgirl]

Great news for you, congrats!

[Marnie]

Congrats!! 

[GerryL]

Congratulations, time for a little Happy Dance.

[LivingWellWithCML]

Yay!  That is a big drop from Dec to Feb - awesome.  What's your secret? :-)

[Mayra]

Dan it's funny you say that.  I feel like that beer commercial "It's only weird if it doesn't work"!!

I am limiting sweet tea to once a week because of iron deficiency anemia and have increased my intake of OJ and Chickfilae Lemonade:)

[LivingWellWithCML]

I always do half-lemonade half-water at Chik Fil A.  Maybe I should get the full strength lemonade from now on! )

[Pin]

Congratulations Mayra, that is great news

[Tedsey]

How awesome and so fast!  Yea!

Tedsey

[mariebow]

Congrats Mayra, It is good to be back again, since I do not get email notifications I forget to come here and check on my own.

[Mayra]

Changed the subject. I don't think I was ever MMR. Please help. I have an appointment tomorrow should I request a change in meds.

[Trey]

You are at least very close to MMR.  You can always change drugs, but it does not seem to be required.  There is nothing currently broken to fix, but the three main options are to 1) wait and see what happens, 2) increase dosage (if applicable) or 3) change to Tasigna.  I would just wait and see.

[Mayra]

Thanks Trey! I will modify my diet during these three months and take my Spruce with lime water. Maybe that will do it. My doc will probably tell me I'm fine and not to worry.

[LivingWellWithCML]

I bounced around at 0.12% IS for several months around the 18 month - 2 year range.  And that was after a PCRU at the one-year point, then a steady climb into detectable and up to 0.12% - yikes, right?  I was in a panic with my doc, but he told me to stay the course, I was stable and I felt healthy with no TKI side effects.  Eventually, my PCR did start dropping again .............

 

With the margin of error, you are essentially at MMR.  I took Trey's recommendation above - "wait and see".

[gerry]

Dan,

Just curious, your increase wasn't around the time you injured your ankle?

[LivingWellWithCML]

The increase was a few months after ankle surgery, so I was out of my exercise routine. My theory at the time was that stress caused the increase. I am under a lot of stress right now and still recovering from a knee injury, so I wonder if it will impact my next PCR result?

[gerry]

I agree with you about the stress Dan. If the latest thinking re the natural killer cells is correct, then does long term stress impact them? My belief is it does. I doubt I would have been able to stop taking the Gleevec if I was still in the position I was a 5 years ago, caring for my mother and working full time. 

Hope you do well at your next PCR test.