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Reading For The Newly Diagnosed CML Patient

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#21 Trey

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Posted 27 January 2017 - 05:04 PM

So many patients end up in a fight against low blood counts as a result of Oncs using Hydroxyurea when the TKI drug should be allowed to bring down the bad cell counts in a controlled manner.  Hydroxyurea is indiscriminate and kills the good blood cells off which are needed to repopulate the blood supply, so the patient often ends up needing drug breaks to recover from the Hydroxyurea effects.  The TKI drug generally only kills off the leukemic cells.  Some day Oncs will learn this lesson, but not today.

 

It is not a horrible thing, just unnecessary and often sets back progress.  Your husband will recover from this and move on. 



#22 kat73

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Posted 27 January 2017 - 07:10 PM

I think maybe the explanation here is in the gap between the dx and starting the TKI - the onc said, "until Sprycel is approved," so evidently there was going to be an indeterminate time before starting it, and the onc didn't want to leave the patient at 200 WBC.  We all come into the very different systems (ER, routine labwork, inpatient for something else, etc.) with very different insurance sources (or worse, none) with their varying requirements for approval - some folks can start their TKI immediately; others have to wait.  Perhaps this explains the hydroxy use?  I was dx'd at a relatively low number (78 WBC) and so my original onc was fine with the 7 week-long delay it took before I could establish the insurance coverage and specialty pharmacy prescription and delivery.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#23 mscl

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Posted 27 January 2017 - 08:34 PM

I was Dx at 330 WBC in February 2012. I was on Hydoxy for about 2 weeks when I received and got on Sprycel.
Dx 2/10/12.
Sprycel 100. mg.
10/2015, Pleural effusions, both sides, about a 3-4 week break in Rx, reduced to 70 mg.
PEs, weren't completely gone, started building back up, about a 6-8 week break in Rx.
01/2016, Reduced to sprycel 50 mg.
10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.
1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, undetectable.

#24 Melanie

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Posted 27 January 2017 - 09:51 PM

I was started on Hydroxy too at dx and is probably why I struggled with low counts for so long. Although, I was only on it for two weeks, my WBC was down to 10.9 and my ANC was 1.77, when I started Tasigna. Within a month, my WBC was down to 1.1 and ANC was at 0.1. PLT had dropped to 49. That's when the roller coaster started with on again, off again of TKI's.

The Hydroxy was just standard procedure back then until you could get on a TKI. Drs and hospitals should have a small supply on hand of these TKI's to carry the patient over till they get their own supply. That way maybe they wouldn't have to go the Hydroxy route. Maybe...
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#25 survenant

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Posted 02 February 2017 - 10:57 PM

Initial treatment

When a patient has suspected CML without confirmation, we initiate hydroxyurea if the WBC is elevated (eg, > 80-100 × 109/L), to reduce WBC counts close to normal levels. We continue hydroxyurea until confirmation of the Philadelphia chromosome. If the WBC is very high, allopurinol is used to minimize complications associated with tumor lysis. Once the diagnosis is confirmed, we start therapy with a TKI. It is not necessary to bring the WBC down to normal levels before starting TKIs; and once we start the TKI, hydroxyurea is discontinued

Extract of How I treat newly diagnosed chronic phase CML

Jorge Cortes and Hagop Kantarjian



#26 Trey

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Posted 03 February 2017 - 09:04 AM

Then they are shocked when the patient has trouble remaining on a TKI drug due to low blood counts because the normal blood cell lines were wiped out by the chemotherapy.  Doing a dumb thing over and over is dumber than dumb.



#27 BarbaraB

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Posted 03 February 2017 - 02:24 PM

Then they are shocked when the patient has trouble remaining on a TKI drug due to low blood counts because the normal blood cell lines were wiped out by the chemotherapy.  Doing a dumb thing over and over is dumber than dumb.

Hi Trey, 

Maybe one more dumb thing was done in my husband's case.  Boy, I'm getting the feeling he is being mismanaged...or am i getting paranoid.    So, last friday, his wbc came down to 54,000 ,,,they stopped hydroxy.    Today, the WBC is 8.0 all diff's normal.  Platelets continue to be super high (which i don't get ) @ 580,000.    

Ok, he asked for his PCR results today and they said that the hospital that he was diagnosed at never did one.   isn't that the job of the Onc ?? to ask for PCR?     The nurse practitioner today told him that there is no point to do a PCR at this juncture.   

I've learned soooo much from this forum .....so, with the white blood cells from  today.'s test...does that mean he has reached "hematological response?" ....or  not..because of the high platelets (?)


Husband's Diagnosis: 1/11/2017- WBC 211,000.  Hydroxyurea 500 bid & Allopurinol started.

1/16 - BMB- FISH = 95% bcr/abl. 1% blasts.   Sprycel 100 mg added to hydroxyurea

1/27  WBC = 54,000 -- hydroxy stopped.

2/3   WBC = 8

2/9= Hematologic Response !! WBC= 5, platelets= 300, peripheral smear no abnormal cells. Allopurinol stopped.

 

 

 


#28 gerry

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Posted 03 February 2017 - 03:46 PM

They normally do FISH tests in the beginning and once the CML level had been lowered it will change to a PCR test. At the moment they are concentrating on getting his blood work back to normal. His first milestone will be CHR - Complete Hematological Response.

#29 gerry

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Posted 03 February 2017 - 03:48 PM

If they did a BMB at diagnosis, he can see some information there.

#30 BarbaraB

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Posted 03 February 2017 - 04:42 PM

They normally do FISH tests in the beginning and once the CML level had been lowered it will change to a PCR test. At the moment they are concentrating on getting his blood work back to normal. His first milestone will be CHR - Complete Hematological Response.

Awesome Gerry.  So based on his WBC of 8.0 today, he has reached the 1st milestone  :) .  


Husband's Diagnosis: 1/11/2017- WBC 211,000.  Hydroxyurea 500 bid & Allopurinol started.

1/16 - BMB- FISH = 95% bcr/abl. 1% blasts.   Sprycel 100 mg added to hydroxyurea

1/27  WBC = 54,000 -- hydroxy stopped.

2/3   WBC = 8

2/9= Hematologic Response !! WBC= 5, platelets= 300, peripheral smear no abnormal cells. Allopurinol stopped.

 

 

 


#31 gerry

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Posted 03 February 2017 - 07:20 PM

He is on the way to CHR - he has had a partial response if his platelet count is still high.

https://www.cancer.o...nt-working.html

#32 Trey

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Posted 04 February 2017 - 10:53 AM

Barbara,

Since your husband has not yet started a TKI drug (Sprycel in his case) none of the blood counts mean anything in relation to drug response since they are only induced by the Hydroxyurea (HU).  The only "response" he has seen is reduced thickness of his blood by killing off blood cells.  The CBC numbers are illusionary at this point.

 

The reason the results cannot be used for response levels is the HU targets both good and bad blood cells.  So although a PCR and FISH should have been done at diagnosis  as a baseline, a PCR or FISH test now would provide no meaningful information about his status since the HU distorts the ratio of good and bad blood cells (oversimplifying here so you can understand).  So the nurse is actually correct about no need to do a PCR now, although I doubt the nurse knows why that is the case. 

 

His platelets have not been affected since the HU cannot kill them since they have no nucleus.  But there will be a lagging effect of a few weeks whereby the cells which create platelets have been killed off.  Platelets stay in the body for several weeks so changes are more gradual.  White blood cells stay in the blood for only a few days so the effect of HU is more rapid.

 

At this point your husband simply needs to stay off the HU (I would not let them give him any more, if it were me) and allow his body to start recovering and start the Sprycel as soon as possible.  Then forget this initial circus and move on.  He will get through this.  My problem with this HU issue is that it is so unnecessary to start out by destroying the good blood cells when they are critically needed.  But try not to fret too much.  He will get past this. 


Edited by Trey, 04 February 2017 - 10:55 AM.


#33 gerry

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Posted 04 February 2017 - 05:05 PM

Trey,
It is surprising that they don't think to do trials on the use of Hydroxyurea and the TKIs. There is a cost saving in it for them.

Found something http://www.sciencedi...110036215000291
They found no difference in the progression to achieve milestones between starting on Gleevec and being given Hydroxyurea. I'm just glad my doc never felt the need to put me on it.

#34 Red Cross Kirk

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Posted 05 February 2017 - 12:29 AM

Maybe this has been discussed before (my memory's not the best). :unsure: If someone has an extremely high WBC, why isn't leukapheresis used instead of hydroxyurea? My guess is that it's easier (and less expensive) to prescribe pills than to administer leukapheresis?

 

My limited knowledge leads me to believe that better outcomes would be obtained with leukapheresis.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#35 BarbaraB

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Posted 10 February 2017 - 11:23 AM

Barbara,

Since your husband has not yet started a TKI drug (Sprycel in his case) none of the blood counts mean anything in relation to drug response since they are only induced by the Hydroxyurea (HU).  The only "response" he has seen is reduced thickness of his blood by killing off blood cells.  The CBC numbers are illusionary at this point.

 

The reason the results cannot be used for response levels is the HU targets both good and bad blood cells.  So although a PCR and FISH should have been done at diagnosis  as a baseline, a PCR or FISH test now would provide no meaningful information about his status since the HU distorts the ratio of good and bad blood cells (oversimplifying here so you can understand).  So the nurse is actually correct about no need to do a PCR now, although I doubt the nurse knows why that is the case. 

 

His platelets have not been affected since the HU cannot kill them since they have no nucleus.  But there will be a lagging effect of a few weeks whereby the cells which create platelets have been killed off.  Platelets stay in the body for several weeks so changes are more gradual.  White blood cells stay in the blood for only a few days so the effect of HU is more rapid.

 

At this point your husband simply needs to stay off the HU (I would not let them give him any more, if it were me) and allow his body to start recovering and start the Sprycel as soon as possible.  Then forget this initial circus and move on.  He will get through this.  My problem with this HU issue is that it is so unnecessary to start out by destroying the good blood cells when they are critically needed.  But try not to fret too much.  He will get past this. 

Hi Trey , thanks for your input.....my husband actually did start Sprycel at same time as Hydroxy (details on my signature line).  yesterday , we met with Oncologist.  Doctor officially told us that Husband has reached Hematologic response .  yeyy. 

I pushed about the PCR again..and she said that "there is no need to do PCR at diagnosis".   urrrgh. I almost told her to go read your posts but i had to stop myself   :)  .  She gave me an analogy :   "If a dog poops on the floor, and you can see the poop (via FISH), whats the point of taking that poop and putting it under a microscope(PCR) to check for bacteria?  You see the poop, you assume there is bacteria in the poop.  "                Um.  Ok.  I guess that makes sense  :(   (not really)

 

So, no PCR on hubby.  She is only going to follow him every 3 months now with FISH....oh and every month with CBC

 

I asked her about WAYYY down the road, in a galaxy far far away....would she EVER consider taking my husband off the spyrcel ............to which she screamed "No!! never".     I asked her about people that have successful been off after deep molecular response and she said  "only the trials are doing that "....in her practice , she would never ever consider it because she is afraid of resistance and mutations.     She won't even consider dropping the Sprycel (100mg) dosage.  

 

Now on to my husband......why is he always quiet at these meetings and I am the only one that is talking and asking questions?    

The only thing he asked yesterday at the very end was   "Doc, I have stopped any alcohol intake since my diagnosis.   my birthday is coming up in a few weeks.  Now can i have a glass of wine ? "  Really?   THATS THE ONLY THING ON HIS MIND ??   urrrgh :angry:     

 

Guess what the doctor replied       "NO!! 


Husband's Diagnosis: 1/11/2017- WBC 211,000.  Hydroxyurea 500 bid & Allopurinol started.

1/16 - BMB- FISH = 95% bcr/abl. 1% blasts.   Sprycel 100 mg added to hydroxyurea

1/27  WBC = 54,000 -- hydroxy stopped.

2/3   WBC = 8

2/9= Hematologic Response !! WBC= 5, platelets= 300, peripheral smear no abnormal cells. Allopurinol stopped.

 

 

 


#36 Trey

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Posted 10 February 2017 - 01:51 PM

Regardless of whether he was taking the Sprycel at the same time as the HU, the HU messes up the blood to the point where the results cannot be used for assessing status for quite a while.  So it will take a couple months after stopping the HU before the CBC, FISH, PCR or whatever can be used for assessing his status.  It is not the total count of cells that is important, it is generally the relative amount which are leukemic which tells the story.



#37 rcase13

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Posted 10 February 2017 - 02:35 PM

I can understand her saying to not drink yet. His body needs to get use to the drug. It is not the friendliest on the liver. She needs to make sure the liver is handling the drug well over time before adding alcohol in to the mix.


10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#38 Gail's

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Posted 13 February 2017 - 01:51 AM

Just my thought: life is short. Have the glass of wine. I have seen alcohol abusers on metformin (diabetic drug known to do a number on the liver) have completely normal liver enzymes. Yes, TKIs can cause liver problems. Is one glass of wine going to completely mess up the liver for a TKI user? No
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#39 garfonzo

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Posted 18 February 2017 - 05:12 PM

i also was put on Hydroxyurea at initial diagnosis. WBC was 550k+. My red counts tanked and ended up within 5 days in the hospital with anemia, bleeding, disorientation, and getting transfusions. My blood viscosity was "muddy". I was bleeding easily including a spot on my brain. I lost my hearing in my left ear. My theory is the lack of oxygen due to the low counts resulted in my ear nerve cells dying off, and they don't regrow.
I can't prove it but I my bodily organs just weren't getting he oxygen they needed without a good level of RBC, etc.
All is well now although the hearing will never come back but I've always wandered if the aggressive Hydroxyurea treatment does more harm than good. In most cases I think yes.
1/22/2013 initial dx WBC 550k
1/28/2013 begin Tasigna 600

pcr test %IS Drug Dose
7/24/13 2.889 Tasigna 600
10/23/13 2.442 Tasigna 600
1/24/14 2.497 Tasigna 600
3/5/14 2.158 Tasigna 600
6/4/14 1.319 Tasigna 800
9/3/14 0.982 Tasigna 800
12/8/14 0.845 Tasigna 800
3/16/15 1.984 Tasigna 800
4/27/15 0.802 Sprycel 100 PM
6/22/15 0.277 Sprycel 100
8/24/15 0.466 Sprycel 100 AM
9/14/15 0.365 Sprycel 100 PM
11/9/15 0.307 Sprycel 100
1/6/16 0.1 Sprycel 100 - MMR mayo clinic
4/4/16 0.1 Sprycel 100 - MMR
5/9/16 0.1 Sprycel 100 - MMR
6/6/16 0.06 Sprycel 40 - MMR
7/6/16 0.1 Sprycel 40 - MMR
9/12/16 0.09 Sprycel 40 - MMR
11/15/16 0.1 Sprycel 40 - MMR
2/14/17 0.07 Sprycel 40 - MMR
5/16/17 0.06 Sprycel 40 - MMR
9/11/17 0.05 Sprycel 40 - MMR
1/15/18 0.05 Sprycel 40 - MMR

#40 sbell111

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Posted 28 February 2017 - 01:23 PM

Maybe this has been discussed before (my memory's not the best). :unsure: If someone has an extremely high WBC, why isn't leukapheresis used instead of hydroxyurea? My guess is that it's easier (and less expensive) to prescribe pills than to administer leukapheresis?

 

My limited knowledge leads me to believe that better outcomes would be obtained with leukapheresis.

I presented initially at Sarah Cannon a bit over three weeks ago with a WBC of 530.  They did two rounds of leukapharesis which brought my WBC down to a bit below 300.  They then put me on hydroxyurea until they actually diagnosed me with CML and got me on Sprycel.  I'm clearly no expert on the matter, but it doesn't seem to me that continuing leukopharesis all the way to a reasonable WBC level is a great idea since there are diminishing returns to the treatment.

 

It should also be noted that we ran my numbers and treatment past a friend at MD Anderson, who agreed that we were following the proper course.






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