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My first blip up


So after a rapid decline to PCRU in 11 months during which time I reduced Tasigna dose from 600 per day to 150 per day, I got my first blip up today - to <.003%, a result I know many would kill for.  I had finally gotten on 3 month testing and now my onc wants to retest both PCR and FISH (which he is almost certain will be negative) in 4 - 6 weeks. So there goes my plan to spend all of July and August in the NC mountains because who knows what the testing frequency will be after the next one.  

My rational mind tells me that this is still an excellent level (>MR 4.5), but my irrational mind and fears project less optimistic scenarios.  Please tell me I have little or nothing to worry about. As always, thanks for your support and understanding.

If I had one year to live. I think spending this year in the mountains
would be a great choice. Everyday is the best day ever.
Don’t worry about that what you cannot change.
Have fun my man, the mountain beckons you.



CMLJax .... whatever Romo wrote above - yes.

The third decimal place is "irrelevant". Let me repeat .... irrelevant. Your reported level is not different than PCRU. The noise of the test at these levels guarantees it.

Dr. Cortes told me that a PCR < 0.01% and PCRU are indistinguishable. I asked than why do they report PCRU and/or <0.01%. He told me that if there is any "detection" whatsoever, it gets the <0.01% and it could be noise and artificially generated. If there is no detection, it still doesn't mean there is none.

Your Onc wanting to test FISH tells me he doesn't know what he is doing. Your PCR would have to climb 3 orders of magnitude (essentially a CML explosion - which doesn't happen) in order to begin registering as cells under the microscope (FISH). CML is a SLOW disease. This is why people can stop for weeks and weeks at a time (I stopped for nine months and saw my level move up not even one log).

Even if you had to increase your dose from 150 per day back up to 300 per day You would still be tested every six weeks or even 3 months.

My recommendation: Whatever ROMO just wrote - go and enjoy July and August in the NC mountains. You have more to fear from Ticks than you do CML.

Drink a Scotch and relax (single malt from the Highlands). You are perfectly fine.


cmljax - People who have had bone marrow transplant get blips and live straight on through them.  There are studies going on now to see if TFR can continue through blips - they are finding that patients can have the blip and go right back to undetectable . . . and maybe get a blip again.  The supposition is being tested that at that intensely low level, it just doesn't matter - it's good enough suppression of the CML.

And you know, in your head, that writing off August when it's March is called catastrophic thinking.  It's gonna be OK.

As everyone has said...don’t worry! Plan and look forward to your trip and time in the NC mountains! Have a wonderful time and forget about this blip, if it’s really even a blip. 

Suba, Kat, Romo and Melanie (all good friends from the old LLS discussion boards) - Thanks for all the encouraging words and wisdom. Even though I knew this would be the response, it is still good to hear it from those who care.  I have been in further contact with my Onc and we are going to test in 4 weeks - if FISH (I decided not to debate this one with him - have learned to pick my battles) is negative and PCR is the same or better, then we go back to every 3 months, so that would mean early July. If not, we'll deal with it then. The trip to NC mountains will have to be delayed a couple of weeks but we are still going to do it.

You have nothing to worry about.  Tell us about your planned trip.  Are you sightseeing, relaxing, camping, backpacking, all of the above?

Are you staying at the same dose?


I tend to worry about nothing, but I understand that the rational thought is what you expressed.  I was so fortunate to have such a fast response to PCRU (Mayo test cutoff is MR 4.5 - 0.0032%) and I remained there for at least 4 months after I reduced dose for the third time to 150 mg/day. I certainly did not expect to "lose" PCRU, but I know there are a lot of people with our disease who have ups and downs in their results and that it only matters if it becomes a real trend up.

My wife and I and our dog MJ go to the NC mountains around Banner Elk/Sugar Mountain each summer to escape the dreadful summers here in Jacksonville.  We did not go last summer partly because we were building a new house and partly because the Tasigna was still kicking my butt pretty badly.  We like to hike and sightsee and I play some golf.  It's just a really nice place to spend part or all of the summer.

Thanks for your kindness and encouragement

Yes I am staying at 150 mg/day of Tasigna and my onc agrees with that for now.  I battled with my onc too hard to get to this dose so I won't give it up easily.  I have only a few mild side effects at this dose.  The side effects at full dose were really bad and quite unusual/rare as you know Scuba.  Even at 300 per day, I had some pretty bad days.  We'll just hope that the test in 4 weeks is the same or back to PCRU.

Sounds like an interesting region.  Something to look forward to this summer!  Hopefully, you'll be able to forget all about CML for a little while.

I don't recall your vitamin D status - but making sure you have adequate levels of vitamin D (by taking vitamin D3 supplements) could help your immune system work with Tasigna.

I also take Curcumin which I am now confident helps my low dose TKI keep CML "undetected". Curcumin down regulates many of the genes involved in uncontrolled cell growth. While certainly no cure, it slows progression enabling a lower dose to work better.

Only time will tell in your case, but as mentioned before, you have plenty of time to find out what works for you. Enjoy your summer.

Based on your posts on the old LLS site and on Sandy Craine's similar advice, I had my VItamin D level meaured about a year ago and it was 38.  I asked my PCP how much Vitamin D3 I should take and he said 1,000 iu's per day, much less than you and Sandy take I know. So I decided to start at 2,000 iu's per day and 4 months later it was 59.  So I stayed the course and meaured again in October and it dropped to 50.  So I increased to 3,000 iu's per day and tested again this past week - still 50. So as of yesterday, I increased to 4,000 iu's per day.  So I am trying to get to 70 just not as aggressively as you and Sandy originally recommended.

Re: Curcumin, I also started that about 9 months or so ago, but decided again to use the same strategy as Vitamin D, so I started with 550 mg per day.  No way to measure this in the blood, so I just measured by watching my PCR, which hit PCRU last September and stayed there until this week's test.  I figure we are all different and due to the high cost of the Curcumin, 500 mg was enough for me or just wasn't necessary at all for me to reach PCRU.  Well, based on my latest PCR, I started taking 1,100 mg per day yesterday.  I know you think that is not enough and I may increase that amount again based on next PCR test, which is now just 3 1/2 weeks away.

1 other thing I forgot to mention was that I developed a low grade infection about 2 1/2 weeks ago and was put on Ciproflaxin 500 mg 2x/day, so I had been on this for about a week when my PCR was done.  My CBC blood counts were all in the normal range, except my WBC at 8.9 was higher than my typical reading of 5 - 5.5.  This was all due to neutrophils being at 6.65, also still normal but higher than my typical reading of 3 - 3.2.  These slight elevations are consistent with how I would expect my body to react to a low-grade infection, so not surprising or alarming at all.  My real question is: could this infection, my body's response to it and/or the antibiotic have in any way affected my PCR result? Probably not, but just curious on your take Scuba - thanks