7 replies to this topic

[JoshLee]

Hi Everyone,

      Just got off the phone with my doctor and I got some good news. 0 PH+ Cells out of 30, PCR fluctuated downward (insignificantly). and normal morphology. That coupled with with 0.8% fish make me feel pretty good. I am just happy things are stable. My oncologist wants to up my dosage of Tasigna from 600 to 800 mg. Check back in 1 month. If no change, switch to Sprycel. Waiting on mutational analysis. What do ya'll think? Happy Weekend. -Josh

[simone4]

JoshLee, very good news.  Glad things are looking up for you.

I remember you said you played in an orchestra in Fl. What

instrument do you play.  I played violin in school myself (since

I was 7 years old) and the idea of being a professional is

amazing.  Hard work.

Enjoy your weekend.  All seems right in your world. Hope it stays that way.

Simone

[JoshLee]

Hi Simone,

      I play the tuba in this orchestra: http://www.nws.edu. It is very hard work, but fun. Just celebrating today and trying to leave the future to the future and put my trust in the big man upstairs and hoping he's giving my doctors some guidance!

[Susan61]

Hi:  Glad your celebrating, and I always say that the Big Man Upstairs is the greatest Physician we can go to.

I am sure he is watching over you and what your doctors are doing.  May you continue doing well.

God Bless You

Susan

[Trey]

Proves you are CCyR and doing well.  Kinase mutation test during CCyR is a waste of time since CCyR is below test sensitivity levels, but whatever.  Maybe you just need some tutoring before taking your next PCR test. 

Sometimes I wish I played the tuba so I could cover up for the gas caused by Gleevec.  Similar frequency.  Noise cancellation technique.  Then blame it on the first string violin player.  Tuba sharts.  Aboral tuba-ing.  (Thanks, Tedsey.)

[pamsouth]

Josh,

I am a little tired and sleepy eyed, but you did write the;

>>BMB PH+ was 0 out of 30, and your FISH is .8 %m  PCR fluctuated downward (insignificantly). and normal morphology.<<, right?

With those great number why would your doctor increase you Tasigna from 600mg to 800 mg and if no change in what you will be switched to Sprycel? 

What am I missing?  I mean PCR labs they can vary from 1 test to another, you know its like 1 drop of blood they test. 

You can take a dozen different (drops of blood to be tested) PCR LABS and the test results would all be different . 

I was very recently at a dinner by the LLS. One of the Leukemia experts said "as long as the PCR is not in a continual trend going up, that is Ok as you expect the lab test result to go in waves.

I am sure there would will be others who would disagree with me, but I personally would rely more on your BMB and FISH then a PCR. Again, unless that PCR is going up, up, up over time, then I would be calling the lab as well to see what is going on there. 

PCR may be more sensitive and study thousand of cells but there is more room for error, as my previous oncology would say, "they are magnified over and over and there is lots of room for error."  Even if you were PCR undetectable, you would still have a million or so PH+ cells.  The PCR is only so sensitive it can't possibly find all of the PH+, your only testing a drop of blood our of how many pints?

I don't see the big deal, to up your dose, or change your meds.

Just wondering!!  My opinion only. It would take a lot more then that for me to up my doze and switch drugs.  Like what our the toxic effects of more meds, short / long term on your body. If you were to have adverse affects from a larger dose and have to take other pills to counter the effect....  well I don't necessarily think larger doze is better, with your numbers.  I mean will you live longer, I think there are many theories and every one is different. Sometimes I think; Ok what is the magic numbers of; doze of TKI, good CBC, metabolic etc for my liver and kidneys and other organs. And the long term side effects of the drugs and quality of life.  Will I live any longer if ??? I'm mean what is the combination??? Sorry just thinking out loud, that Dear God will they come up with a cure and we won't have to worry or fret or all this!!

Again Just My Opinion, I have no medical degree, just an opinion.

PamSouth

[Tedsey]

Glad to hear the decent news.  For you and me, I guess we will have to be happy with "stable" for now.  But, here is to better numbers next time.  Also wondering why your onc would up your dosage.  I don't know what his reason is, but I have heard so often that oncs try this tactic to get their patients to PCRU status ASAP.  From the info I have, it appears that this is a misunderstanding of the disease and drugs (or a bit o' overconfidence).  Nevertheless, a little disturbing...and a lot disappointing to those of us who just don't achieve such status.  As far as I know, there are still few CMLers who actually achieve PCRU status, (although it seems like most people on this board are PCRU or a very solid MMR, at least).   Nevertheless, I cannot fully understand this logic (race to PCRU).  But with the quicker and deeper response with the "stronger" drugs, it may be worth a try if the side effects are tolerable or nil. 

All the best on the road to healing,

Teds