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My first blip up

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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.

Romo

 

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

Well I had my PCR blood draw this morning at Mayo Jacksonville.  In the past, they have had to send the sample to Mayo Rochester to do the test, and so the result would not be available until the next evening or sometimes even 2 days later (I realize many of you wait a lot longer for their result, so I am not complaining). But I noticed that my last test on March 12th was done in Jacksonville, thus a lab change from all previous PCR's. Much to my surprise, my onc just texted me that I remained at <.003%, so that is a big relief. So we got the results just 5 hours after the blood was drawn - WOW. And he said next test could wait 3 months. 

Thanks to all of you who provided support and encouragement through this time. 

Now I am wondering if the lab change had anything to do with going from undetected to <.003%??

Fresh food taste better. Fresh blood test more accurate.
As blood ages by a few days bad guys in the blood die and
no longer show up in the test as active. Therefore don’t exist.
However at these levels it makes small differences.
If I had a blood test at the best lab everyday it would be boring.
I would go crazy and be locked up because of vengeful ghost haunting me.

-I wanted to get the Vengeful Ghost line in there.

Romo

 

CMLjax .... you are never ... let me repeat that - you are NEVER going to die from CML.

Let that sink in ....

If CML isn't going to get you - then it could be something else. Time to start thinking about diet, exercise, family, life. Is your heart health, artery health 0.k.? You can't cheat death, but you can prolong its arrival.

Focus on that. CML is history - for you. You will never have an issue with CML again. I know ... it took me a while also.

p.s. And whatever Romo says ...

Always try to be aware of lab changes regarding PCR testing and take that into consideration. It is the biggest source of concern for clinicians and patients who are trying to make sure we see stable BCR-ABL1 percentages. There are always the possibility of 'blips' of course, even with the same Lab, as PCR testing is so sensitive, especially when BCR-ABL1 is at deep molecular levels, but Labs do vary in their methodology etc so the advice is (at least here in the UK and Europe) to always make sure your doctor uses the same lab if at all possible. I am aware that the US health insurance based system can be an issue as it is the Ins.Companies changing labs due to costs? Is that right? 

Nevertheless, good news for you as you remain in DMR. yes

Sandy

Sandy:

The lab change was from Mayo Clinic in Rochester Minnesota to Mayo Clinic in Jacksonville FL.  I am a patient in Jacksonville and prior to my latest 2 PCR's, my blood was drawn in Jacksonville, then flown to Rochester and the actual PCR was done the following day in Mayo's Rochester lab (the last 3 results from the Mayo Rochester lab were negative/undetected and the 2 before those were both <.003%).  My latest 2 PCR's (both <.003%), however, were performed in Mayo's Jacksonville lab the same day as the blood was drawn.  Yesterday's PCR result was available to me 5 hours after the blood draw. 

The change of labs was not an insurance company issue nor was I told about it by my oncologist, who is also at Mayo Jacksonville.  I am guessing that Mayo Jacksonville did not previously have the necessary equipment. I figured it out by looking at the detailed pathologist's report which indicates where the test was actually performed.  Since there's really little or no difference between undetected and <.003%, I guess it doesn't matter, but it would be nice to know if the lab switch could be the reason for the slightly different results.

As always, appreciate your comments and caring concern 

Hi Scuba:

Always love your positive attitude. Just FYI, I was already in good physical shape when I was diagnosed 18 months ago and I have continued my exercise regimen, which is 2 miles a day on treadmill at 4 mph 5 days a week and 2 days a week of weight training.  I completely changed my diet post Dx and now eat very close to a 100% whole foods diet.   I have also added Vitamin D, curcumin and magnesium supplements.  I have not had a cold or the flu for over 10 years.  My EKG's are normal, my BP around 120/85, and most importantly, I spend mountains of time with my wife and my dog.

I am getting better at dealing with the anxiety of CML, particularly that leading up to PCR results.  I'd give myself a C+ at best on this, but you guys are a huge help with this.

Thanks for all the encouragement and thanks for sharing your time to help all of this on this forum.

Hi there I am glad you feel free to share your concerns here and get comfort. I feel exactly the same way and can only imagine how much harder it was for patients in the past who didn't have access to these online resources let alone other TKIs.

i just wanted to contribute a small suggestion re curcumin. I was searching everywhere for the curcumin by Sabinsa, a manufacturer Scuba had recommended. Turns out the Tumeric I had bought at Costco is manufactured by them. Its marketed under the name youth theory Tumeric and it contains 1000mg of Curcumin C3 with black pepper. I can't remember how much I paid but normally Costco is good value. I also saw Walmart had a similar product by Sabinsa also marketed as youth theory Tumeric and it was selling for just over $20. Given you need to take 8 capsules a day to get 8mg, it might be quite a saving compared to the $35 plus i have seen in health stores. best Louise

Hi Louise,

Regarding Curcumin supply - keep in mind number of caplets per container and how many caplets make up one serving in order to get the correct mg dose. These labels can be tricky and sometimes you think you have a bargain when it isn't one.

Youtheory Curcumin is indeed made with the same Sabinsa C3 curcumin ingredients, but there are only 60 servings per container (500 mg per caplet; two make one serving).

Oops I missed that. Thank you.  Now I have to tell my husband to take 16 tablets daily! Luckily they nearly finished.

I did place an order yesterday with Physician Naturals. Double checked and they are 100 capsules of 1000mg, so that is much better. He is still being bothered by really puffy eyes even on 50 mg of Sprycel so hoping the Curcumin will help if he takes a high enough dose. 

... or he can achieve what I did and take only 20 mg Sprycel!