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Daignosed with CML recently


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#1 Ray99

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Posted 05 May 2012 - 02:42 PM

Hello,

My name is Ray and I am 64 years old. About six weeks ago I was diagnosed with CML. I first found out when I felt tired after a round of golf, walking with a pull cart.  At dx, WBC=204, RBC=3.11, PLT=522.  My doc put me on Hydrea and Allpurino right away

Here is the short history of my treatment.

WK2, start Tasigna 150 mg, two capsule twice a day, WBC=211, RBC=3.82, PLT=662

WK3, WBC=11, RBC=3.11, PLT=544, it seems a good progress

WK5, WBC=3.4, RBC=2.95, PLT=56, bold count dropped and my doc half the dose of Tasigna, one capsule twice a day.

WK6, WBC=3.2, RBC=2.76, PLT=21, bold count continue to drop and my doc stop the Tasigna

I have a doc appointment next Tuesday (5/8) to check out the progress.

It seems to me that the low count of WBC and PLT is due to the Tasigna and hopefully it will return to normal.  But the RBC is low starting from the beginning and continue to drop.

Anybody has any comments or experience with this history. Is low blood count a normal side effect of the drug?  Will it recover after stopping the drug?



#2 Lizzybee

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Posted 05 May 2012 - 03:19 PM

Low blood counts are a side effect of the drug for some people.  I'm on Tasigna and mine run low.  At my last appt, my wbc were 4.8 and it scared me for a minute that they were so "high."  I had to remind myself that even 4.8 is a bit low. Also, it takes a little while to rebuild a healthy environment in the marrow and bring production back to normal.  Your counts should come back up while you're on a break from Tasigna, then you and your doctor will have to decide whether to try Tasigna again or try a different TKI.  Your platelets being so low is the most concerning of those numbers. 



#3 pamsouth

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Posted 05 May 2012 - 03:27 PM

Lizzybee, Just wondering why WBC at 4.8 scared you when 4.8 ? 11.5 on my labs are normal range.  Usually they let your counts get all time low, then i went off to the hospital for IV of antibiotics,  then off meds until they start to come back, then low dose until they get closer to normal range. Hopefully the healthy stem cell will have populated as CML is suppose to be slower then the normal or good cells.

Pamsouth.


PamSouth


#4 Lizzybee

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Posted 05 May 2012 - 03:43 PM

My wbc usually run less than 4k, so the increase scared me for a minute. Of course, 4.8 is perfectly fine, it was just that jolt of seeing the higher number on the paper.



#5 pamsouth

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Posted 05 May 2012 - 03:49 PM

Lizzy,  Ohhhh you thought since they were higher that it was the CML cells or perhaps you had become resistant to your TKI?

I think you wrote a good post to Ray99.  About rebuilding a health immune environment.  Hopefully that is what we are all aiming for.

Have a great week end and continued success and hopefully a CURE will come soon.

PamSouth


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#6 Ray99

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Posted 05 May 2012 - 06:38 PM

Lizzbee,

   Thank you for your prompt reply.  It always nice to know someone had the similar experience.  My doc has the same concern about the plt being so low during a short period of Tasigna treatment.  He is not too worry about the wbc.  How long have you stopped taking Tasigna?  Do your other blood count in the normal range?

   Have a nice weekend.



#7 Lizzybee

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Posted 05 May 2012 - 09:24 PM

Hi Ray,

I am still on Tasigna. My counts have never gotten so low that I had to take a break.  My wbc, rbc, and hgb all run low.  My hgb did get up in the normal range for a month in November, and I felt fantastic. It dropped in Dec and is still dropping.

Hang in there. Sometimes it takes a little while to get the meds and dosage just right, but you'll get there.



#8 Lizzybee

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Posted 05 May 2012 - 09:37 PM

Pam,

It was just one of those OMG moments, where I saw the 4.8 on the paper, kind of did an internal gasp because my wbc have been below 4 for months, then realized that 4.8 is not high.  It was only a split second.

My oncologist seems to think a cure is very near.  We were discussing my side effects and he said that a cure is coming and CML patients will be able to get off their medication.  I agreed but said it might still be 20 years away.  From his reaction, I know he thinks it will be sooner.  I wish I'd thought to ask him his best estimate. 

You have a good weekend, too. 

Elizabeth



#9 Susan61

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Posted 06 May 2012 - 04:24 PM

Hi Ray:  So glad you joined us. I have been on the boards here for quite awhile. We are getting so many new people just the past week, and I am trying to keep up with all the names.  I am not on Tasigna.  I am on Gleevec since Oct. of 2000.

Once they get you adjusted, and your numbers get where they should be you will feel better.

     I am reading all the other posts to you, and we just had a conversation last week about how the different areas and different labs have different ranges of what is normal or low etc.

    I just had my blood work done, and my WBC was 3.8. That just barely holds me in the normal range.

My lab is  Normal WBC     is 3.8 to 10.8  Platelets 130 to 400.  My Platelets on this last blood work were down to 96, and we are keeping an eye on that.  I have never had such a low count.  Depending on my next blood work, I might need an adjustment on my Gleevec.

   You will get to know everyone,and as you can see already the different responses your getting.  With all the different TKI drugs, everyone is doing something different on their labs etc.

   IF you have any questions on side effects or just general questions, Please just post anything you want. There is always someone here who will respond. By sharing all of this with each other its a great help to know we are not alone.

   I always say that we can talk to family or our doctors, but nothing better than to talk to someone else who has what you have and truly understands.

  Hope we get to know you better, and vice versa.  Welcome!!



#10 cousineg

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Posted 06 May 2012 - 09:00 PM

Hi Ray,

There were some old discussions about this subject ( Tasigan + low count).:

        Tasigna and low platelets.....

         Low platelet count on tasigna and bmb report..trey and company..please review

         .....

Welcome to the group,

                            Gilles

P.S.  If you've just been diagnosed , I suggest you to meet Carolyn Blasdel .



#11 Ray99

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Posted 07 May 2012 - 07:23 AM

Gilles,

   Thank you for pointing out the low plt discussion.  It makes me feel better, knowing that I am not alone in this situation.  I did visit Carolyn Blasdel.  It is very helpful to make me understand many subjects related to CML.

Ray



#12 Ray99

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Posted 07 May 2012 - 07:29 AM

Susan61,

   Thank you for your encouragement.  I have a Dr appointment tomorrow to check CBC.  Hopefully, all counts will go up a bit.  It seems most people on this board are on Gleevec.  Does anyone know how the Dr decide which TKI to use as initial treatment?  Does it depend on your BMB report?

Ray



#13 Susan61

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Posted 07 May 2012 - 01:35 PM

Hi Ray:  So glad your feeling comfortable with all of us, and getting some answers that you want.  As for what TKI to recommend by doctors.  When I was diagnosed back in 1998, there were no TKI drugs. I did the only treatment available back then where I had to give myself shots everyday.  It did not work for me, and then I was very fortunate that Gleevec was in clinical trial as the first TKI drug introduced for treatment for CML.  I did the trial in New York, and it really saved my life. Without going into  lot of detail, basically  I had nothing else available to me. Then other drug companies developed other TKI drugs which have proven to be very good also.  The advantage now, is that if one drug does not work, your doctor can always switch you to one of the other drugs.  As you read some of the other posts, you will learn a lot about all that is going on in the treatment of CML.

     Joining our group was the best thing you could do, because you are talking to people who know exactly what you are experiencing and can help in most instances.



#14 Ray99

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Posted 08 May 2012 - 08:01 AM

Susan,

   Indeed, joining the group is really great.  I get to know a lot CMLer's experience and gain knowledge about the disease.  It is also very encouraging to know that you have this disease for over 10 years by now.  How is the quality of your life comparing to the time before.  Are you able to lead pretty much "normal" life?  I have only taken Tasigna for about three and half weeks.  The side effect has been minimum and I have been doing pretty much the same thing as before I was diagnosed.

   In the past week off Tasigna, I start to get night sweat, which is a symptom of CML.  I did not have that while on medication.  I don't know whether this is normal or not.  I am going to see my Dr. this afternoon and hopefully the blood count will trend toward normal range and I can resume the medication.

Ray



#15 scuba

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Posted 08 May 2012 - 09:24 AM

Hi Ray - Welcome to the group.

I noted you wrote to Susan, "It is also very encouraging to know that you have this disease for over 10 years ...".

That's no longer true. Susan is disease free - she doesn't have CML - she outlasted it. She won't admit she doesn't have it and that's fine because we get to meet her on this forum. We love Susan. But as for her still having the disease. There's not a trace of it in her body. I would wager money on it.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#16 Ray99

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Posted 08 May 2012 - 09:52 AM

Scuba,

    Thanks for correcting me.  What I tried to say is that it is very encouraging to see Susan doing well after more than 10 years after she was first diagnosed.  It is also very good to know that one can be essentially "cured" or in deep remission.

    From your other posting, I understand that you tried to stop the TKI if you are PCRU.  How long have you been on the medication and the reasons you would like to stop.  Is it because of side effects?  If side effect is minimum, why not continue the medication for peace of mind?



#17 PhilB

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Posted 08 May 2012 - 09:53 AM

Hi Ray and welcome to the board.  It must all seem pretty crazy right now, but you will soon get used to CML - and to the little foibles of our members like scuba!



#18 CallMeLucky

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Posted 08 May 2012 - 10:13 AM

Hi Ray - Some quick points to address some of your concerns

It is normal for counts to drop early on.  Tasigna is powerful and it is wiping out the leukemia cells quickly.  It will take time for your body to respond and start making healthy cells again.  For some it ramps back up after a little while, for others it is an ongoing issue but most get by dealing with it.

Right now the treatment protocols are that we stay on the drugs for the rest of our lives to keep the disease under control.  The meds control the disease but they do not cure it because they do not kill the high level leukemia stem cells.  There are different theories about what happens with people who have had a good response for many years and if they are "cured" or if their body is now able to keep the disease under control or if they will relapse as soon as they stop taking the drug.  We are very much in experimental territory with this.  Most people will stay on the drug.  Some will elect to try and stop taking the drug after a few years of deep response to see if they can maintain without the drugs.  The reasoning varies but the biggest are quality of life due to side effects (some people have no side effects from TKI drugs, some have really bad ones, most of us fall in the middle).  Financial factors are another big motivator to get off the drugs and for others it is to just be able to say they are no longer sick.

It is a personal journey and while it is similar to many of us, ultimately we will each have our own unique issues and outcomes.  Try to get through the next few months focusing on managing the stress from this new issue in your life and in time the rest will work out.

Best of luck


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#19 scuba

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Posted 08 May 2012 - 10:48 AM

Hi Ray - I was diagnosed two years ago this month. For some who have been PCRU (no CML that can be detected) for 5-10 years, there is a very good chance that they are disease free. But I understand why they continue to take the drug for their peace of mind.

The main reason why I want to stop taking Sprycel is that I still have some myelosuppression (below normal blood counts). It is not bad, but does affect my SCUBA diving. I want to stop taking Sprycel so my blood counts can truly return to normal again and I can get more air time. TKI's also affect mineral deposition in the body (bones) and affects other cells (Osteocytes for one). TKI's are life savers, but they are toxic to the body.

I am willing to test TKI cessation just like ChrisC is testing it. I am just a bit more impatient. I won't wait two years. I will wait six months and begin - but only if I can attain PCRU.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#20 PhilB

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Posted 08 May 2012 - 03:50 PM

Hi Scuba.  Apologies to Ray for hijacking his thread, but very interested in your comment about it affecting your diving.  I used to be a keen scuba diver until prevented by a different condition * and I'd been hoping that I could eventually get back into diving, when suddenly CML happened along.  My very first post on this forum was to ask whether you could dive whilst taking Glivec (and whether Trey was Dr Druker in disguise) and so I'd be very interested to hear what response you've had from dive operators about having CML.  Do you need a medical cert to say you are fit to dive?  Or do you just keep quiet about it?

Phil

*The main condition currently making diving impossible is having 2 small children






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