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What is the cause of my CML?


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#21 August1

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Posted 07 April 2014 - 09:28 AM

Hi Adela,

I definitely go through phases of wondering why and how this happened. I had no idea what Leukemia really was until after I was diagnosed. I still find it strange that I even have it. Leukemia? Really? Me? Was it too many X-rays as a kid, too much partying in college, too much stress, something in the water, something else? I don't have a good answer and I doubt I ever will.

In all cases though, the experts have been very consistent in their message. They can't point to anything specifically that would cause this and have reassured me that I didn't "do anything" to make this happen. It's just a genetic mishap that thankfully has many very effective treatments. I am closing in on two years since my diagnosis. I'm still working through all of this but it is getting easier over time.

Take care,



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Posted 07 April 2014 - 03:08 PM

Thank you  Rissa and Wespahr! I feel blessed that I found this forum and you all to advise us that were just diagnosed.. Do the side effects continue forever? What bothered me the most was the cough, but that is getting better. I am going to post my lab results, and I would like to know your opinion. The Doctor said that I was lucky that \I was diagnosed in the early stages.

TEST: CBC AND DIFF   04/03/2014

Result Name:                                       Results:             Units                                   Reference Range

LEUKOCYTE COUNT                         2.3 LL               X10(9)L                                4.0 - 11.0

ERYTHROCYTE COUNT                    3.58 L               X10(12)L                              3.80 -5.20

HEMOGLOBIN                                     111 L                g/L                                        115 - 165

HEMATOCRIT                                      0.325 L                                                          0.360 - 0460

MEAN CELL VOLUME                          91                    FL                                         78 - 100

MEAN CELL                                         30.8                  PG                                        27.0 - 34.0

MEAN CELL                                          340                  GL                                        320 - 370

RED CELL                                            18.3 HH            %                                          11.5 - 14.5

PLATELET COUNT                             102 L               X10  (9) L                               150 - 400

MEAN PLATELET                                7.5                   FL                                           3.0 - 11.0

ALP  (liver)                                          241H                U/L                                         40 - 142

Any comments will be very much appreciated from ALL of you!  Thank you.



#23 Frogiegirl

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Posted 07 April 2014 - 09:28 PM

I know this is "beating a dead horse" so to speak, but has anyone that has CML ever taken the drug Accutane? I believe it  is only used for severe acne, but I guess it could  be used for something else. I took 3 rounds of the stuff, harsh drug. Just curious


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#24 hannibellemo

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Posted 08 April 2014 - 06:25 AM

Hi, Adela,

Sorry we hijacked your thread a little bit, sometimes we have to play around!

What TKI are you on? Your counts look pretty normal for early CML treatment. Your ALP, a liver function test is high; I would want to know more about that, maybe have your onc include ALT and AST on your next metabolic panel. Those should be checked occasionally anyway.

Good luck!

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#25 Sneezy12

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Posted 08 April 2014 - 07:07 AM

Accutane can cause liver damage. Of course, it depends when you took it. Regards, Frank



#26 PhilB

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Posted 08 April 2014 - 07:17 AM

Sprycel and Tasigna may be very good drugs and get more people to PCRU, but they are much worse than Glivec in one important respect.  They just aren't funny.  I have yet to see anyone find much humour in pleural effusion or a cardiac irregularity.  Whilst Glivec has many side effects which are no joke - brain fog, chronic fatigue, bone pain, etc., it's most famous side effect of needing to wear a crash helmet if your bathroom has a low ceiling definitely made this place livelier when we were almost all on it.

In the interests of patient morale they definitely need a new generation of drugs with more interesting side effects.

(Apologies to Adela for renewing the thread hijack, but like CML, these digressions just happen!)



#27 hannibellemo

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Posted 08 April 2014 - 09:17 AM

Hi, Frank,

It was Adela with the high ALP and frogiegirl took the accutane. Unless frogiegirl also has high liver function tests there is no connection.

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#28 hannibellemo

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Posted 08 April 2014 - 09:19 AM

  You already know how I feel about it. Let's start a petition to all the drug companies to develop a new drug with the potential to improve the liveliness of our posts here on LLS.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#29 Guest__*

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Posted 08 April 2014 - 10:38 AM

Hi Pat,

I take 400 mg. Gleevec daily. My wonderful Doctor checked ALT and AST, and the results are normal. He also checked calcium, magnesium and phosphorus etc.  I am a concerned with my hemoglobin of 111, it usually was 115. Why is my RED CELL high? He wants me to have a blood test today and every 2 weeks for a couple of months. He is excellent. Thanks to ALL of you that wrote, it was appreciated. I am new to this forum, but I am learning.

Take care

ACG



#30 hannibellemo

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Posted 08 April 2014 - 01:31 PM

Adela,

Your red blood cells are reported as" erythrocyte" not RED CELL (perhaps I misunderstood your question). The Red Cell you are referring to has to do with function (size and shape) of the cell I think. (Someone else feel free to jump in.) My onc doesn't pay much attention to it. Your Hgb is probably low because your erythrocyte count is low, although 111 is not much lower than your normal 115. Mine are written with a decimal point and run anywhere from 11.5 - 12.5.

You seem to be doing great! 5 years later my counts are just now barely in the normal range and I think Trey mentioned in another thread that it can take time for that to happen. I'm living proof!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#31 Guest__*

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Posted 08 April 2014 - 08:25 PM

Hi Pat,

Thank you for all the replies. On the CML forum I read something about someone received an infusion, and I didn't know what they were talking about. Was it an Iron infusion? In another post I read about a lady that has Gleevec induced anemia. I hope that \I don't become anemic. I will try not to worry about tomorrow. I feel very lucky to have you to answer my questions, it gives me peace of mind. Thank you to ALL.

ACG



#32 hannibellemo

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Posted 09 April 2014 - 06:01 AM

Hi, Adela,

You are a long way from needing an iron infusion; don't go borrowing trouble. I was off Gleevec for a couple of weeks at the beginning due to low counts but they will bounce back and your Hgb just isn't that low. Don't panic if your WBCs and maybe even your RBCs go a little lower, it takes a while for your marrow to populate your blood with good cells again after it kills off the bad.

Take care,

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#33 Trey

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Posted 09 April 2014 - 09:19 AM

Adela,

You did not say when you were diagnosed, but indicated it was very recently.  Your white blood count (WBC), which is the leukocyte number, is already low which must have happened very quickly.  The RDW [edited -- thanks HB] being that high so early is also a bit unusual, but not necessarily an issue by itself.  When were you diagnosed, and what were your lab results for BMB, FISH, PCR?



#34 hannibellemo

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Posted 09 April 2014 - 11:01 AM

Trey,

Take another look at that. Adela's rbc is only 3.58, low. The Red Cell is high at 18.8. On my reports that is called RDW-CV. a higher percentage means greater variation in size of the red blood cells.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#35 Guest__*

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Posted 09 April 2014 - 03:52 PM

Hi Pat,

Thank very much for answering my questions.. My hematologist wants me to have a blood test done every 2 weeks for the next couple of months. Now I have peace of mind. May God bless you for all your help.

Take care

ACG



#36 Guest__*

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Posted 12 April 2014 - 07:38 PM

Thank you Trey for the reply, I only saw it today. I was diagnosed March 6/14. The Doctor said that I was very lucky to have been diagnosed early.  I took 400 mg. Gleevec daily from March 6th to April 11/14.My Doctor's nurse phoned me yesterday, Doctor wants to decrease my dosage to 300 mg of Gleevec. I was very happy for the change to 300 mg. Today I took 300 mg. I have lots of blood in my left eye. I had that last week, and it cleared up, but it was really bad yesterday and today. That's my only side effect right now. The next time that \I go to the Doctor, which will be in two months time, I will ask for my lab results when I was diagnosed, and I will let you know. This forum is wonderful, especially for me. Thank you for your time and attention.

Take care.

ACG



#37 simone4

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Posted 13 April 2014 - 09:31 AM

Adela, I had low counts in the beginning as well.  My Gleevec was reduced to 300mg

and I have been on that amount for over 5 years.  It reduced the itching and eye bleeds

considerably.

Good luck and take care.

Simone



#38 Guest__*

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Posted 13 April 2014 - 02:37 PM

Hi Simone4,

Thank you for the information, it was appreciated. I will always remember that you had low counts in the beginning and that you have taken 300 mg. for 5 years. I hope my 300 mg. will reduce the eye bleed. It is really bad today. I go for walks with my husband and I try not to think about it. The Lord will heal it! Pat, Trey, Susan and all that wrote to me thank you so much.

Take care

ACG



#39 Guest__*

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Posted 14 April 2014 - 05:07 PM

Trey, Pat, Susan, since March 6/14 I have had 3 blood tests, and I will have another one tomorrow, ordered by my Doctor Hematologist. I really would like to have a copy of all my blood work, I only have a copy of one blood test. I do trust the Doctor, but is too much to ask for a copy of all my lab results?  I don't know what they will think of me!



#40 LLawrence

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Posted 14 April 2014 - 05:13 PM

It is not unusual to request copies of your labs each visit.  Personally, I view keeping track of my labs, med doses, side effects, etc to be part of my responsibility as a patient.  It doesn't say anything negative about your provider for you to request these things, but is a positive statement of your involvement in your care.  My opinion...






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