48 replies to this topic

[Red Cross Kirk]

Phil, I can't find the like button, so you'll just have to do with a smiley for that post!

 

Kirk

[CallMeLucky]

While I admit I am completely incapable of remaining rational with my own test results the fact of the matter is a PCR not a reliable test. The bounce is more often the lab then you.
Seems like all my relationships are the same, "it's not me, it's you" :/

[Billie Murawski]

While I admit I am completely incapable of remaining rational with my own test results the fact of the matter is a PCR not a reliable test. The bounce is more often the lab then you.
Seems like all my relationships are the same, "it's not me, it's you" :/

Good one Lucky! There's a couple nurses like that at the rcc I go to. Uggh!

[Tom1278]

Well, my lab test was confirmed and it came back again as a 3.8 log reduction.  My regular 3 month test is in another 6 weeks, so let's hope I stay in MMR territory.

 

I think they were concerned and did the 6 week re-test/mutation test because I have been consistently a slow and steady response, and they wanted to see if this was a blip or I was going backwards.  Luckily, it looks like a blip.

 

The mutation test was done on peripheral blood.  Those results are still pending but I'm assuming they will be negative.

[CallMeLucky]

I would expect your mutation test to be "unable to detect a sufficient sample".  That's what happened to mine when they tested me and I was below 3 log reduction.  I'm not clear why doctors run this test at this level, as far as I know you can't detect a mutation at a 3+ log reduction, even if it is rising, it needs to go higher to get a result.  The mutation test is not as sensitive as the regular PCR.

[scuba]

I am basically never going to understand it. I have read it and re read it. Trey you could make a Log reduction calculator. You should totally patent that. You are smart enough, I would buy one.

 

Log reduction is nothing more than moving the decimal place one spot to the left.

 

so ...  let's assume you measure something and it comes out as 100.00  (as in 100%) ... as in PCR = 100.00%. A one log reduction means you move the decimal place one spot to the left.... so 100.00 becomes 10.000  .... that is a one log reduction from the starting point of 100.00. Notice I still have the same 5 digits (i.e. 1 0 0 0 0) - only the spot of the decimal point has changed.

 

Next - I measure and I get 1.0  or 1.0000 ... that is another one log reduction (decimal placed moved another spot to the left) or two log reduction from my original starting point of 100.00 .

 

Next - I measure again sometime later and i get 0.1 or 0.1000 (same 5 digits only the decimal place has moved). And this result is a .... yes.... you guess it. a 3 log reduction from our starting point of 100.00 or just another one log reduction from our last measurement - it's all relative.

 

And finally - you get a measurement of 0.01 - and that is a 4 log reduction - a great place to be from your original starting point.

Each time you move the decimal point to the left you are lowering the result by a factor of 10, another way of saying an order of magnitude or ... one log. It's all the same thing. Decreasing the number from 100.00 to 0.01 is a four log reduction, it is four orders of magnitude decrease. It is a big drop.

 

Now  - for homework... what do you think a  1/2 log reduction is ?

[Billie Murawski]

I get it Follow the Dots .

[scuba]

I get it Follow the Dots .

 

Yep ... one to the left is one log reduction. one to the right is one log increase.

The reason so many PCR's are reported in "log" increase or decrease is that most of us start out at 100%. Some of us, like myself, started out at 155% so my log reduction from 155% to 0.01 is a 4.19 log reduction or a factor of 15,500 reduction. or 4.2 orders of magnitude drop. It doesn't really matter. Log reduction reporting is stupid. All that matters is that a patient gets below 0.1% preferably below 0.01% and bounces around there. No one on this forum is going to die of CML - especially if they have their vitamin D level maintained in the normal range. Our goal is to get off these drugs and manage side effects.

 

(Actually my PCR is below 0.01. I don't know what it is anymore - it's below measurement (M.D. Anderson does not report the 3rd decimal place). I just go month to month now without taking any TKI - like a cell phone plan)

[Trey]

Billie:

 

What happens when you follow the dots and there is a dash in the middle of your dots? 

Answer:  Morse Code    ... --- ...

 

Philosophical question:  If there is not a log, can there be a fly on the frog?

 

https://www.youtube.com/watch?v=RXPAdmzhbDU

Edited by Trey, 21 March 2015 - 10:20 PM.

[JPD]

Scuba - why the vitamin D concern?

[scuba]

Scuba - why the vitamin D concern?

 

Vitamin D is vital for immune system function - especially T-cells and NK cells (Natural Killer). The T & NK cells are what go after cancer cells throughout the body and kill them. They are activated by vitamin D. As important, most cells of our body have vitamin D receptors (http://en.wikipedia....itriol_receptor) responsible for DNA expression, repair and control. Vitamin D causes cells to differentiate properly.

 

One of the problems with CML and Leukemia in general - what makes us sick - are the accumulation of Blast cells. It is the uncontrolled growth of Blast cells that kill. It's not Leukemic cells per se that kill us. We can still function with Leukemic cells - but when Blast cells get out of control, the bone marrow is taken over by them and blood making stops. Vitamin D can induce Leukemic Blast cells to differentiate and ultimately go through apoptosis (normal cell death) clearing them. Vitamin D is also used by bone marrow cells to to control cellular differentiation overall. 

 

It is a very important Vitamin. You get it naturally from the sun. Think of it this way. The sun has been around for billions of years and humans have been under the sun for 2.0 million of those years. Makes sense that adaptation enables us to use the suns energy in an important way to help us survive DNA damage.

 

Now think of what we have done over the last 50 years or so. We're told to stay out of the sun and smother sun screen when we are in the sun because the sun is dangerous - causes skin cancer.

Result - tremendous drop in vitamin D in our blood (http://www.scientifi...-united-states/).

And to top it off - we're not so sure that the sun does cause skin cancer:

http://articles.merc...deficiency.aspx

 

In my case - I had my vitamin D level checked about two years ago...and sure enough - my vitamin D level was near Rickets !!!! at 17 ng/ml. It has probably been that way for a long time. I don't eat dairy as a rule which has some vitamin D. Normal they say is between 30-50 ng/ml. Therapeutic levels or levels that sun exposure will provide are around 80 ng/ml. I was starving my body of  vitamin D. No wonder I developed CML with lots of Blasts (near accelerated stage). I suspect that if I had kept my vitamin D level up with either proper sun exposure or supplements, I may have avoided CML altogether when the triggering event occurred (probably cat scan radiation I had about five years prior to diagnosis) that cause a Hematopoietic stem cell to translocate the 9;22 chromosomes forming the bcr-abl gene. Sufficient vitamin D may have kept that action in check.

 

I always had some blast cells when they did bone marrow assays. But beginning a year ago - the low count Blast cells disappeared. And that corresponded exactly to when I started getting my vitamin D level way back up to high normal. My current level at last test was 55 ng/ml. And that is by taking 10,000 IU's vitamin D3 (which converts to vitamin D in the body) every day during winter. I take 5,000 IU's in summer and no sun screen anymore. 

 

Vitamin D is fat soluble and is stored by the body.

 

I was willing to stop taking Sprycel and test durability of my PCRU status even though I did not wait the required two years because I believe I have armed my immune system a great deal by getting my vitamin D level up. I am not convinced of this yet - as I may have done damage to my system by being vitamin D deficient for so long, but when I saw the Blast cells disappear and it only did so after I added vitamin D to my diet, I have a hunch.

 

No one who responded to my non-scientific survey on this forum had normal or high normal vitamin D when they were diagnosed. Everyone was low - and in some cases very low like I was. Get yourself tested for vitamin D. And if you are low (and you probably are ... then discuss with your doctor - assuming he knows about this).

[Billie Murawski]

Trey how do you find all these websites, I enjoyed watching the mickey mouse episodes, boy does that bring back memories. Now I gotta focus on learning morse code. Theres a dot in the middle of my dash,theres 2 dashes in the middle of my dot oh .--. it I give up!

[Trey]

Billie,

. -- .  You just spelled EME.

 

That doesn't mean crap.  But it's a start.

 

My example ... --- ... spells SOS.  Save Our Ship.  Or Same Old Sharts.

 

Alternatively, if vitamins can cure CML then why take TKI drugs?

 

Just askin'

[gerry]

Unless you're talking about EME (Electro Magnetic Engergy). lol

[Billie Murawski]

Yeah gerry that's what I meant!!!  See Trey I am smart.  My thoughts exactly about vitamins. I just posted about glucosamine I took, that did help my knees.

six dots and 3 dashes sounds like a lot of work how about SOG (Shart or Get off the pot).

[scuba]

Billie,

. -- .  You just spelled EME.

 

That doesn't mean crap.  But it's a start.

 

My example ... --- ... spells SOS.  Save Our Ship.  Or Same Old Sharts.

 

Alternatively, if vitamins can cure CML then why take TKI drugs?

 

Just askin'

 

Vitamins do not cure CML. TKI drugs do not cure CML (at least not yet).

But - improving nutrition overall - especially deficiencies gives us a fighting chance that maybe our bodies can cure CML - or at least control it. Too many studies show links between vitamin D, for example, and cancer. It'a not a cure - no one said cure. 

 

And yes - I no longer take TKI drugs. I am one and a half months into the experiment. By your own suggestion, I have another 10.5 months to go where even you might suggest this may work. 

 

 I decided to try and report here if I am successful. I put my odds at 60-40.

[CMcLain]

Hi to all! I received lab results today and I'm a bit shocked by them! Not in a good way I might add! Here is my history.
2013 - 0.1487
2014 - 0.83
2015, 6 months later - 0.45 showed with bone marrow biopsy test
2015, 2 months later - 1.47
Now these tests were not all done at the same lab or by the same doctor.
Is it possible I would have that much on an increase in just two months?!?!
Please advise and comment! So many experts on this forum! 😊 Thank you in advice!
Charissa

[Trey]

Because of your previous postings, it is time to switch from Gleevec to another drug.  The Gleevec has never given you a truly deep response, and now it is losing effectiveness. The continuous PCR increases and loss of CCyR is significant enough to take action.  The use of different labs in this case does not offset the results since the increases are continuous and approximately 1 log. 

 

I would want to switch drugs.  Any would be a reasonable choice.

 

 

Previous discussions:

http://community.lls...ne/#entry167110

[CMcLain]

Thanks Trey for your prompt response.
Just curious, has anyone else experienced this? I was diagnosed 2009.
Will look forward to more responses!
Charissa

[scuba]

Thanks Trey for your prompt response.
Just curious, has anyone else experienced this? I was diagnosed 2009.
Will look forward to more responses!
Charissa

 

Charissa - Switch drugs now. You are losing or have lost response to Gleevec. The longer you wait, the harder it will be for you. I am surprised your doctor didn't suggest this to you now and take action. You should easily have been MMR (PCR < 0.1 %) by now.

 

Gleevec did not work for me and I switched to Sprycel. Normal dose is 100 mg., but many people have had success on much lower dose (50mg and in my case 20mg.). You won't feel nausea like with Gleevec. It is an easier drug to take. There are other drugs as well.

 

It is quite possible that sprycel will jump on your current CML and take you down to PCRU. The key is to start.