12 replies to this topic

[CallMeLucky]

So after 5 consecutive pcru results in a row, I had a significant jump 3 months ago to 0.02%. I say significant because technically more than a 1 log increase and put me into the 3+ log reduction vs 4+ Log reduction. Perhaps it is my experience being at this for 6 years (anniversary was last week) but I didn't take this jump to heart. Something just didn't feel right. I've had blips before and this felt like a blip or even a lab error. Nothing had changed and no reasons to explain such an increase. I was annoyed but I rode it out. Perhaps I'm just tired of giving in to CML.

I had my blood draw two weeks ago, I was leaving for an important business trip followed by some vacation time so I left clear instructions for my Onc "don't call me". I told him I didn't want to deal with it until I got back. He called this morning and results were negative.

So CML continues to be a frustratingly annoying pita following me around and reminding me that it's still there, but all in all nothing has changed. And by the way, if I never looked past the first decimal place nothing has changed in 5 yrs despite how much I have thought about it, worried, reasoned, stressed etc.

I'm learning more and more to just put CML on the back burner. Some tests will be good some will be not so good, but seems like I will be living with this for a while barring any buses coming around the corner.

Hopefully this helps some of you when things start jumping around. The PCR dance is not fun but it's not uncommon either.

[Sneezy12]

Well said! Frank

[kat73]

Oh, bravo, Lucky!  I hear ya when you say you're just tired of giving in to the CML.  I just had a similar experience.  I'm 7 years out come 7/20 and within the past year I've been bouncing around with one undetectable and a bunch of .00somethings.  I started discussing with the onc a reduction in the Sprycel, and I started THINKING about maybe being able to start the "undetectable clock" for quitting. Two weeks ago I got 0.04% IS back.  I just didn't react.  I wrote the onc, OK we'll stay at 70 mg; disappointed but I'll just carry on; see ya next time.  In looking back, I really can't claim anything lower than MR3.5 consistently for the past four years.  I guess maybe we have come some distance in terms of perspective after all.  This news, which would have thrown me down for quite a while a few years ago, this time merited a sad shrug.  I've got other stuff to do - I don't have room for unnecessary worry.  I want to save that worry space for when it's warranted.  I'm so happy for your return to undetectable land!  Who knows? maybe this one was a glitch for me and the next one will be PCRU.  And I can start that clock.  But I refuse to hitch all my happiness and equilibrium to it.

[CML Steve]

Very similar for me!  PCRU for over 6 years.   April was 0.032.   Onc was suprisingly not too concerned.  Waiting for quant PCR results, but qual looks like it's still there this month (July).    Nothing different for me except switch to generic Gleevec in the interim.   Tough to see this happen after so long, but comforting knowing if it trends upward, 4 other meds available now.   Have to remind myself that the journey will have bumps.   Thanks for sharing!

[kat73]

Keep us posted, OK?  I can imagine how upsetting this would be.  You're really handling it well!  I'm sure it's a blip.

[CML2012]

I had 3 consecutive PCRU over 9 months then the past three months they have checked me once a month and I have been .04%, .122%, .19%. Trying to ride this out but not sure .... One oncologist says change meds now, second opinion says wait it out and see if the roller coaster comes back down.

[CallMeLucky]

Ok so I'm going to throw something out there that I don't usually make a lot of suggestions about, but given my experience and some similar correlations with some other people I have spoken to I will mention it.

 

There was one thing that changed when my PCR jumped up and it was the same thing I was doing to get down to stable PCRU in the first place.  A while back I had known that I had serious vitamin D deficiency.  It had actually come up in my physical prior to being diagnosed.  I had then read some research years after being diagnosed that there could be a correlation with cancer in general and leukemia and Vit D deficiency.  Overall I have responded well but I had a lot of jumping around at the low end.  When I started Vitamin D supplements my numbers went PCRU and stayed there.

 

I was taking 10,000 iu per day.  The guy at the vitamin store was like "wow that's a lot, make sure they keep an eye on your liver".  So I had asked my doctor to check my Vitamin D level.  He came back and said it was a bit high, liver was fine and I should probably take less vitamin D.  So I went to 2000 a day and my next PCR bounced up.  After that I went back to 10000 a day and my numbers went negative again.

 

Now I will be the first to say this is probably not cause and effect.  I think its more likely a lab error.  But nonetheless since high vitamin d levels are really not too dangerous, I've decided I'm going to stick with the 10000 for now.

 

I'm not suggesting anyone else do this, but I wanted to be open about my experience.  If you have vitamin D deficiency, which a lot of people with CML do, then it may make sense anyway to get on a supplement.  Maybe it will help your PCR, maybe it won't but overall if you are deficient, it would be better to supplement.

 

Check with your doctor before you take advice from another patient, but it may be something you want to consider.

[scuba]

Vitamin D is vital to immune health overall. I take 5,000 IU's per day in summer and alternate 5,000/10,000 IU's in winter to maintain a vitamin D level around 70 ng/ml. This is above the so-called normal range - but the normal range is wrong. People who live in southern latitudes who are out in the sun with minimal clothes generate over 10,000 IU' per day naturally. The body has evolved to take advantage of sun exposure. It is important to also take 180 mcg of vitamin K2 per day as well (take it with food that has fat in it) so that vitamin D does not build up in the body. Vitamin K2 uses vitamin D to move Calcium out of soft tissue and into bone.

 

Ever since I increased my vitamin D level to around 70ng/ml, I have not been sick once. No flu, cold or anything in over 3 years! And my blast cell count went to zero and I easily maintain near PCRU status on only 20mg Sprycel. And I tan great - no TKI tan impact.

 

Vitamin D in and of itself is no cure of course - just a vital nutrient that unlocks our bodies natural defenses against cancer and disease in general. There is little doubt in mind that if I had had high normal vitamin D levels prior to diagnosis I would never have developed CML. No doubt in my mind. Chronic low vitamin D (i.e. < 20ng/ml) is a precursor to setting oneself up to getting cancer. My level around diagnosis was < 17ng/ml. 

 

See the links below to learn why vitamin D is so important. 

 

 

https://www.youtube.com/watch?v=3GM0CnO6-ds&feature=youtu.be

 

https://www.youtube.com/watch?v=-Za2H5oTXJY&feature=youtu.be

 

http://www.ncbi.nlm....les/PMC2879394/

 

http://www.ncbi.nlm....les/PMC3166406/

[CML Steve]

Interesting!   I am super low on D as well (been taking 50,000 IU per week for 13 weeks).   6 and a half years PCRU,  then 0.032 followed by 0.030.   Will see in a few more months what happens.

[kat73]

Yay for that teeny 2!  Hope it continues down.

[CML Steve]

Thanks kat73!  For anyone else following, 3 things changed in the time period when I lost PCRU.   Vit D Deficient, switch to generic G (400 mg), and a bit of weight gain.  Generic G certainly didn't cause it.   Working on others.  Will keep posting..

[CallMeLucky]

So I have to ask, why do you say Generic Gleevec didn't cause it?  If I had recently switched and saw a blip I would immediately jump to that conclusion.

 

Agree it is possibly Vit D.

 

 

[CML Steve]

Because it's the same drug - Imatinib Mesylate.   Just looks a bit different, but same chemical compound.   Hoping you are right!!!!