15 replies to this topic

[chrissy778]

Hello, I was diagnosed with CML in August 2013. I take 400mg Gleevec once a day. My molecular level has always gone down each time I have been tested except today my Dr called to tell me it has gone up....  Here are my dates and numbers Dec, 2013 ( 3.457 ) Feb, 2014 ( 0.413 ) May, 2014 ( 0.155 ) Sept, 2014 ( 0.013 ) Dec, 2014 ( 0.054 ) My Doctor said this can happen but also asked if I take my medicine everyday???? I am worried that I am at the 1 year and 3 month mark and I read that if you are going to where the medicine stops working (something with your proteins) it is at a year or shortly after. Has anyone ever had this happen with their numbers? Should I be worried, my Doctor knows I have severe anxiety is he worried also? Please help I do not see him again for 3 months.

[Widgeonus]

Not unusual to have a small jump like that. You are still well below MMR, and if your doc was truly concerned he would have ordered a PCR test sooner than your regular visit in 3 months. As I was once told, PCR tests aren't near as accurate as that decimal place leads us to believe.

[chrissy778]

Thank you Widgeonus

[CallMeLucky]

We never like when the numbers go up but there are essentially the same results from last time to this time. When the decimal point moves that's a bit nerve racking but this can easily be test variability.

[chrissy778]

Your posts helps lessen my anxiety, thank you. I am a worrier and don't want it to be the first thing I think of when I wake up but I know it will be for the next three months.

[Widgeonus]

Your posts helps lessen my anxiety, thank you. I am a worrier and don't want it to be the first thing I think of when I wake up but I know it will be for the next three months.

 

I know the feeling as I was diagnosed in July of 2013. Just in case you are wondering, I am at approximately the same place you are PCR wise.

[chrissy778]

Thank you for being supportive and kind   it helps....

[hannibellemo]

I'd never experienced an increase that wasn't expected until this last time. I was feeling very cocky after 5 years in. Like you I was very low, 0.02, and mine increased to 0.05 in August. It wasn't devastating news, but it did rock my otherwise stable boat a little bit. I don't think about it every day but my next test is the end of January and I'm sure it will feel like a long wait until I get the results!

 

Good luck!

Pat

[chrissy778]

Thank you Pat. I wish I listened in High School during math class. This decimal stuff is awful, could you tell me what log reduction I am at now from my numbers above. Also I am at 0.054 would 0.05 be 50 or 5...

[gerry]

Log Reduction                                     International Scale                                            Response

0                                                            100%                                                                    Baseline

1                                                            10%                                                                      CHR

2                                                            1%                                                                        CCyR

≥3                                                          ≤0.1%                                                                   MMR

>4 or 4.5 or 5.0                                     ≤0.01%                                                                 CMR

[chrissy778]

Gerry, thank you for taking the time to do this for me...

[rcase13]

Thanks that was awesome. Helped a lot. I took differential equations in college and I made an A. Now I can't even add and subtract any more.

[CallMeLucky]

I'm a worrier too. I'm 4+ years in I was PCR negative and then my last test jumped to 0.04. That was significant . Now I repeat next week to find out if it's a blip or if I have a real problem. My anxiety is in overdrive but I try to take each day as it comes.

[chrissy778]

Lucky, good luck. Let me know how you make out. I get on here and I feel better but then sometimes ok most of the time I let it get the best of me. I wish we could check our own numbers. lol I would be checking mine every half hour..

[Pin]

Hi chrissy, your posts sound word for word like some of mine over the last couple of years! I remember the doctor asking me over the phone whether I took my medication everyday, I was so shocked - of course I did (obsessively in fact!). I don't know if this helps or not but I also had an increase at around a year. It was very stressful, and Trey drew me a great (funny!) predictive graph about where my results would go - I was so worried, but it really was ok in the end. They tested me monthly for 6 months, which I would not recommend at all even though I share your need to know what my results were constantly. It was actually much more stressful having them done so frequently, and showed all the tiny variations, which you wouldn't have seen if we tested 3 monthly. They went up, then down, then up to about 0.04 - then the next test was less than 0.01. As a lot of people will say - these variations are not that important unless they break 0.1 and even then, the mutation tests only work when you get back up to 1%, so it is all just noise really. It's a lot easier to say that when you aren't right in the middle of it, but I really think it is true....ask me again the next time my results go up though...

[chrissy778]

Thank you Pin, I was so worried because this is the first time it has gone up and it was unexpected. I really was hoping it would of went to 0 that's all I wanted for Christmas. Maybe next time. It helps to know you had this fluctuation also. It did throw me when the Dr asked about taking my medicine, I thought Has it stopped working? Like you I have never missed a dose or would ever think of skipping a pill. Thank you, you have relieved much un needed stress and anxiety.