14 replies to this topic

[TeddyB]

International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

 

After being on 0.01% for a whole year, i dont like seeing the 0.03%, but it looks pretty stable to me, and the GUS results are stable at 0.02%, so im happy with the results.

 

Hope you all are having a nice summer.

Teddy

[hannibellemo]

Maintaining MMR - looks good to me. Remember, one result does not a trend make! 

[simone4]

In summary, my last 4 PCRs in order, (done every 3 months, so this is in the last 12 months):

 

  0.015

<0.001 (same as 0 because that is how low the test claims to go).

  0.005

  0.010

 

It was exciting to reach 0 and then very depressing to lose it.  However, since my sample is crazily sent to NH, USA from Chicago, I will guess that the <0.001 was an error or from a degarded sample. 

 

I think your numbers look good.  Please someone correct me if I am wrong, but I think even a .5 log increase at such low levels would likely not be significant.  This would be due to the inaccuracy of the test and that it is reported in averages.  As long as subsequent values bounce up and down, one would remain in the "safety zone".   Like Pat said, the goal is 0.1 and lower (MMR). 

 

I must confess, I write this also for my peace of mind.  Knowing and emoting sometimes don't jive.  I was depressed for days with my last PCR value. 

 

I know this is debated, but I have read that low values have been found in people who do not have any signs of CML, (thus, healthy individuals).  It seems their immune systems may recognize the rogue protein.  Thus, keeping it low.  So, a lifettime, (hopefully long), of low PCR values would mean the drug or the body is doing a good job, (as far as CML goes).

 

PCRs are different all over the world.  Some are more sensitive than others.  Depending on the machine, a value of PCRU or <0.001 may not be all that reliable.  Thus, neither would upticks in the PCR mean disease progression.  

 

I have to keep in mind that disease progression is not only a PCR value.  One has to look at the cells too.  Wish there was another way than BMB, but c'est la vie.  What else better can be said to detach from this emotional rollercoaster?

 

May BMBs remain in our past forever!

 

Tedsey 

 

 
 

Hi Tedsey, I know it is disappointing but I am there as well.  Wish I had never seen the .000.  I am .02% (same as Pat,I believe.   Hi, Pat)

Onc says it is stable so that is good for me.

Miss our avatars. Mine was a waterlily from Bostwania and I lost it.  Pat and Tedsey, yours were lovely too. Miss the aesthetics of the old

board.  Tired of change.

Take care.

Simone

[Trey]

Teddy,

That is about as straight-line over 18 months as I have ever seen.  You are doing great.

 

If it were me, I would probably increase dosage in the 2 weeks prior to the next PCR just to see what happens.  Maybe alternate every other day the higher dosage for a couple weeks.  Just would be interested in what would happen.

[gerry]

Hi Tedsey,

 

Saw my doc yesterday and we had a quick chat about the theory of the natural killer cells. He believes in it as he has seen it with some of his patients who have had BMTs. They can register low levels of CML on occassion and then the next time get a negative. They would have got their new immune system from the donor.

[Trey]

Gerry,

 

The primary reason for BMT patient response in the scenario you outlined is the new cells killing off the residual old (leukemic) cell line using a graft vs leukemia effect.  The new cells take a while to completely take over, so the old cell line can survive for a time.  If the new cell line takes over completely, it will cause the leukemic cells to be seen as "non-self".  Until that happens the leukemic cells are still seen as "self".  Sometimes the new cells do not take over completely, so there can actually be two cell lines in some instances.

 

But there may be a learning process in CML patients taking TKI drugs whereas the NK cells learn to recognize the leukemic cells as "non-self".  If so, they will help the T-cells kill them.  Still many unknowns.

Edited by Trey, 15 July 2014 - 09:28 PM.

[gerry]

Hi Trey,

You've probably seen this already - http://www.youtube.c...h?v=BMKpqY1MjoY

I just wanted to hear my docs thoughts on it.   My testing regime has moved out to two months and I will see him in 4 months, just before he heads off to another conference.

[TeddyB]

Thanks for the support everyone

 

Trey: Why woud you increase dosage a few weeks before next pcr? Think the pcr would go down even further?

 

Teddy

[LivingWellWithCML]

Teddy - your results are great!  I'm into my 4th year of G 400mg and haven't been able to beat it down as low or consistently as yours, but we're stable and MMR+, so life moves on.  Congratulations!

[Trey]

TB,

Maybe.  I would try it, if it were me.

[hannibellemo]

Hi, Simone, Tedsey. Glad you found the place ok. (I always wanted to say that)  Simone you can use any photo you want as your avatar. Just find a photo of a Botswanian waterlily online someplace and upload it. That's what I did with the sailboat on my sig.

[TeddyB]

Thanks Dan

 

Trey: Ill see if i can do it, ive been having some issues lately, not bad ones, but im feeling more like crap than i did a year ago. I think it has something to do with the hot weather, and possibly some allergies. Also the tinitus has been pretty bad lately, but maybe i could manage one more 100mg pill every other day for a few weeks. i will think about it before my next checkup.

 

Its been record hot here in Norway this summer, more than 92 degrees Fahrenheit on some days.

We are not used to this kind of weather. Luckily, some cooler weather and rain is setting in now.

 

On this last pcr test, my wbc was slightly higher than usual. Im usualy at around 5,5, but this time it was 7,4, probably because my body was dealing with a few infections (sinus and throat) at the time of the pcr test.

[hannibellemo]

Hi, everyone,

 

I needed to reread this post, especially mine(!) because my PCR this time went from 0.02% to 0.05%. I'm used to it going up (usually way up) when I've had to be off TKI for a period due to one side effect or another but I really wanted it to go down just a little!  

 

So, I'm reminding myself of my post on July 15, 2014 on this very thread:

 

"Maintaining MMR - looks good to me. Remember, one result does not a trend make!"  

 

TeddyB - we have been having a Norwegian summer in Iowa this year - 70s and low to no humidity - I love it!

 

Have a great weekend, everyone!

 

Pat

[TeddyB]

Pat: Lets hope our next results will go down a bit

 

Glad to hear its not to hot!