42 replies to this topic

[HeatherZ]

Thank you for putting this in perspective Trey.  I am also one of those that feels everyone else is responding faster than me.  I hit CCyR around 12 months.  I am coming up on 18 months and am not at  MMR yet.  My last PCR was a little higher than the previous one so I have been trying very hard not to worry about the "what ifs" until I get my next round of bloodwork done (this week or next).  I just keep telling myself there is no point of worrying about the ifs, all it does is scare the heck out of me.  My dad used to always say "if, if, if..... if your uncle had t1ts he'd be your aunt."  So I just keep telling myself that and we will see what the doc says next month

[Tedsey]

Billie,

I am sorta hijacking a bit here.  But I will try and private message you.  It is not that my issue with anemia was private, but I feel it would be redundant for others.  I had major troubles with anemia on G.  I am not sure what you mean by iron being at 3 when it was supposed to be at 14.  Was that your HGB?  Anyway, it appears it is trial and error regarding what iron supplements work for you (primarily what won't make you barf them up).  I take iron asporate.  So far, so good.  And it is relatively inexpensive.  I am so sorry you have had to go through these trials.  I fully understand.  Been there.  It was a shock how debilitating severe anemia is!  Like you, I had a severe reaction to the blood I was given.  I had anaphylaxis (severe allergic reaction) with my first transfusion.  My body seems to love to reject donors' blood.  (I can only say I am terrified what my body will do if I ever need a SCT).  Anyway, I cannot receive any blood transfusions without being shot up with a ton of drugs first and more on hand.  I always feel so sick after transfusion and am half-asleep.  I have to take Benedryl days afterward because of my throat closing up.  Lovely times.

Hoping all goes well and this will pass very soon,

Teds

[Tedsey]

Billie,

Timbuktu is a real place (I am sure you know).  Totally understand about wanting to run away.  If only we could leave our CML and problems behind.  Anyway, since we are fantasizing, how 'bout a private jet?  We would need one anyway to cross the ocean.  That is, if you are not afraid of flying.  I live right near O'Hare (Chicago--and oy vey, these planes are driving me crazy!!!!!!  I so wanna move!!!!).  You could just pick me up there.  Oh, and I want to hire a very good pilot.  Why should we have to do the driving?  Caviar, Champagne, sushi and chocolate treats served the whole flight, or whatever we desire.  Now that would be great!!!!!!  But if we have to settle for a comfortable bus, I will share in the driving.

And I never look at the TKI as poison.  I see it as a miracle drug that is prolonging our lives.  Nothing is perfect.  I know plenty of people without CML suffereing from one thing or another.  Aging kicks everything up a notch too.  You just cannot get away from it.  At least we know the origin of most of our problems.  Hang in there.  I will hang with you!

Hugs,

Teds

[jjg]

Hey Billie,

If you need me to do any bus driving you'll need to get on a plane to the southern hemisphere first. It takes a while but I'd recommend it highly - great way to avoid winter and the health care system is a tiny bit easier to understand. We may just have to dream of running away but at least you can checkout timbuktu on the internet.

Have a great day/night

J

[PhilB]

I don't know, I turn my back for five minutes and Trey starts trying his hand at advanced statistical analysis.  Whatever next?

Kentucky windage looks like the correct method in this case as without access to the base data everything is guesswork to a greater or lesser extent.  On some of the studies I've seen where they do let you get closer to the data some of them are really quite remarkably dodgy in their definitions.

Phil

[GerryL]

I was glad Trey put the explanation of Kentucy windage in the thread, I was starting to think the windage was more like something out of the Blazing Saddles movie and couldn't work out what that had to do with statistics.

[Lori's okay]

Trey, 

Thank you SO much for this analysis and for referencing it again.  I am only about 2 months into treatment on Tasigna and was somehow forming the expectation that PCRU should be just around the corner.  I think some people have blazing fast responses and mention it here, which is great!, but I was beginning to take those great exceptions as the norm.  Really is a marathon, not a sprint.

Thanks,

Lori

[TeddyB]

Great post Trey, very informative!

Is a good initial response, like reaching CHR fairly quick, a good indicator on how the drug will work (unless there are mutations of course), or do we usually have to wait for a cytogenic response to see how the drug is "really" working?

Im asking cause i reached CHR at around 4 weeks on 400mg  Gleevec alone(270k wbc), but im (like most others) still worried about gleevec not working well for me on a cytogenic level.

Ive had 3 checkups since dx, and all has been well, im having my 3.5month checkup in about 2.5 weeks time.

[Trey]

The four main goals in TKI drug response in order of progression are CHR, CCyR, MMR, and CMR (PCRU).  Each one is tougher to achieve than the previous goal because the drug must kill off higher and higher level leukemic cells to achieve the next goal.  These higher level cells are harder to kill than the lower level leukemic cells.  The ability to kill off these cells is not the same for everyone, and depends on two main factors: 1) how well the individual's body transports the drug into the leukemic cells where it does its work, and 2) how well the drug performs once it is inside the leukemic cell.  So there is no clear answer to the question.  We are all different. 

[TeddyB]

Indeed, i still have a long way to go.

Cant do much more than wait for my next checkup and see how it goes. When one`s life is at stake, you just really want the meds to work.

Knowing that the drugs work well for most people is of course a big help, but its that uncertainty that is so tough to handle.

Thanks for taking the time to answer.

[mabdou2005]

Hi Tery

Can you please simply explain how CHR achived with positive FISH or PCR  my small knowledge is that the BCR-ABL GEN  lead to high WBC So how the WBC be in normal count and the FISH or PCR  still positive

Thank's

M ABDOU

[Trey]

It is about percentages.  After taking the TKI drug for a few weeks the WBC can become low, but there will still be many leukemic white blood cells among the reduced number of cells, so the FISH and/or PCR could still be high.  At diagnosis the WBC is very high, and most of the leukemic cells are low level white blood cells.  And very few good white blood cells are in the body since the body shut down their production trying to control the CML.  The low level leukemic cells are easy to kill with the TKI drug, so they die off rapidly.  Then the higher level leukemic cells are harder to kill, so the killing rate slows down quickly.  And it takes a while for the body to start producing the good white blood cells again in larger numbers.

So for example, you can kill off 95% of the leukemic cells but still have a 50% FISH because there are very few good white blood cells in the body.  The remaining small number of good cells mixed with the reduced number of leukemic cells can still show as a high percentage number.

[pamsouth]

mab.

I went on Gleevec in 2005.  My white cells eventually got down to 1.5 and still going down.  Yet the Fish was still positive.  The doc said remember I told you the Gleevec only kills the bad leukemia cells, yes, well your white cells are down to 1.5.  I said where are my good white cells, the onc said, well at this point, you don't have any. Wow the light bulb came on and that was a blow to me stress level.  Anyhow I had to go in the hospital for IV antibiotics, because my counts were so low.  then I had to go off Gleevec and it took awhile for my white cells to start coming up.  Then back on Gleevec at a low dose for awhile.  I don't know why they have to do that, as eventually things seem to level out according to each individual. I think that is so danger to get such low counts!!  The ideal is that your TKI gets rid of as much of the Leukemia cells, so the good white cell would have a chance to come out., your leukemia cells crowded out the good white cells and they shut down, so the only thing multiplying is the leukemia cells.   The low count did scare my onc, when she came in the hospital she said I will never do that again.  However I think a few years latter she got a little braver. Anyhow I don't think I would every let my counts get the low again, especially since I am getting older.  It is so easy to catch something.

So just because your white count are in normal range, or lower, that is all it means normal range, doesn't mean they are good white counts or leukemia white counts or what.  You need a FISH OR PCR to tell you that. Another good way to see how you are doing, from a CBC, it to look at your granulocytes which make up your white cell, Granulocytes are made of  Eosinophils, Basophils, Neutrophils. Kind of like making a cake it has to have ingredients, well you myeloid white cells are made of Granulocytes. Before I was even diagnosed the onc knew what I had even though my white cell were not high.  But my platelets were high and my granulocytes were off, which means the white cell is not a normal cell.  He was a smart onc, he knew just by looking at my CBC, before ever check for Leukemia.

Trey How did I do?

PamSouth

[mabdou2005]

HI Pam

My last CBC in 22 May2012 was  5.2 WBC & PLT 329 and all the other cell is normal(neutrophils ,lymphocytes,moncytes,eosinophils, basophils) except HBG was 12 and RBC 3.97 but in the same time the PCR was 23% and FISH 28% 

i am on 600 mmg G from 20 DEC 2011 after 1 year on 400 mmg G and 3 year befor on 200 mmg G and 8 month befor on 400mmg G   But becouse of insuranse problam with TASIGNA I have to continue with G for may be 6 month more

I finaly understand from TREY and you how it can be anormal CBC with a positive PCR OR FISH

THANK'S TO YOU AND TREY

M ABDO

[pamsouth]

Mab,

Hum, interesting that you can not move on to Tasigna, because of insurance purposes. I think on your profile you are from Turkey?  Anyhow it is probably the same in the states, as insurance can vary.  My new onc and the old keep trying to move me off of Gleevec to another drug, but so far I have refused.  For 7 years my FISH has stayed in a stable range between undetected to as high as 7 or 8 %.  However my PCR is a bit strange.  I have all my labs and the PCR was sometimes undetected while the FISH, 300 cells, were detectible.  Sometimes the lab they were shipped off to in New Jersey, would rerun the test, anyhow no one has quit figured that out. Odd my new onc at consultation said he had nothing to do with the insurance part of it, but now he is saying if my insurance should stop paying it would make sure I would get the drug.  I don't know how he could do that unless he is doing a clinical trial with Sprycel.  I think they need more live bodies for Sprycel.  Also it has been out such a short time I think 2009.  My primary docs says I should wait until a drug has been out for several years, because well you never know.  As most other drugs are studied at least 10 years before FDA approval.  I think that would be a fair statement.  However when I was diagnosed 2005 Gleevec was the only thing out, I think in 2001.

At my new oncologist, I have only had two labs and one fish was 1.5 % and was was 6.5%, while the PCR was 7 % and 8 %.  I have another lab in two months. I am pretty happy with that.  But onc likes Sprycel, I said NO, Sprycel is still new and I am staying stable on Gleevec so no emergency here,  but he said he said he would put me on the 1/2 dose at 50mg and work up.  He lost me when he said work up.  I have no intention of working up.  As long as I can stay at CCyR I take care to change. I can see it all now he starts me on 50 mg, then he is controll of writing the prescription and I would have no choice.  I am kinda getting drift of how he things, now.

I think for those people who can stay safe at a low dose of whatever TKI and have low side effects and low toxic chemical to they body and organs, they are one lucky person.  I sometimes hear of those who have been on the drugs a few years start to have low Kidney and Liver and transfusions and all.  However it is so complicated and not a one size that fits all.  So everyone needs to be tweaked for each one.  I think the very young can perhaps take much higher doses with consequences to as may side effects as us older folks.  We took care of my mom three years before she passed and the giartic doc said older people can only safely take child like doses. 

Well you probably know all the above.  I am just rambling.  Sorry for the novel.  I am thinking out loud to myself.

I think I will reply to Trey and ask why are other counts like Hgb etc get so low because they are not nucleus or they do have the BCR/ABL???

Interest that you had ET that turned into Leukemia.  When I was diagnosed I did not have high white cell count.  I had over 1 million platelets and 2 weeks later they were over 2 million. That was in 2005.  I check on my lab CBC back in 2002 at noticed my platelets were 75,000 high, over the range and granulyctes were off, I kinda wonder why the doc didn't say anything then or why she waited 3 years to do another CBC.  I guess I was thinking maybe I could have avoided Leukemia or perhaps went on Medicare as I was 5 year with the limited of my last day on the job.

Wow now I am really off the topic and rambling.  I do apologize.

Anyhow I was thinking how global this disease is and how it is great to compare notes with people in other parts of the world.  We are all from the dirt, brothers and sister.  Well I guess that would depend on your belief.  I do NOT know the religious belief in Turkey???

Wishing the best, and that you get the drug that work for you!!!

PamSouth

[pamsouth]

TREY,

I hope this is not to far off the topic.

I have heard so many people complain, or at least it seems pretty common, for CML patients to have low counts.  Like their RBC, HBG, HCT, Platelets, etc.  I was just thinking, if the TKI only kills the BCR/ABL in a nucleus cell, then why do the other cells get low, as they are not nucleus or do not have the BCR/ABL.  Perhaps the TKI Drugs kill farther up the chain when the stem cell is nucleus and before it turns into red blood cells, platelets, etc. ??

Just wondering, PamSouth

[Trey]

End stage red blood cells and platelets have no nucleus, but their predecessors do, so TKI drugs can negatively affect production of the predecessors of all blood cell lines.

[mabdou2005]

Hi Pam

I know your history with CML well i read many of your old post in this board and i found that there is a common point between our two case

So I hope all the best luck to you with insurance

I am from EGYPT which is located in north of Africia . If you hear about PHARAHS &PYRAMIDS  you will know it

But any way CML don't differentiate between our country or religion

And as you say all are human from dirt brother and sister

GOD CURE ALL OF US

M ABDO

[pamsouth]

M Abdo,  Wow Egypt, pyramids and all,  What a history lesson to tell about your country.  So do you speak Arabic and do you live around the Nile Valley?  There are probably different dialects. It is very very Hot here in Indiana, Been in the 100's for sometime now,  Need rain bad.  Maybe we need to get some of the camels?

LIKE "God Cure All Of Us" !!

PamSouth