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After Two years of CML. Why can't I feel good?

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#1 jstevens11


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Posted 24 June 2012 - 03:24 PM

I don't understand why I just can't have a good day after two years. I have been taking Gleevec since 2010. Still experiencing brain fog which i'm taking Ridalin for, and it doesn't seem to be helping. Was very animic last week, and had to have a blood transfusion. Expereinced an alregic reaction the the transfusion, and have been dealing with hives for the past week. Woke up this morning very light headed and foggy, and it still won't clear. I'm getting tired of not having a quality life like my Doctor thinks I should be having.

Have spoken with many CML people who are living normal lives with no side effects at all. What is my problem? Every week is something new. Should I be looking for another doctor who might have better answers? If things keep up like this, I'm going to lose my job!

Frustrated in CT!

#2 Susan61


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Posted 24 June 2012 - 03:43 PM

Hi John:  We go through different phases as we battle this disease, and if you are familiar with me then you know that I have had CML since 1998.  I started on Gleevec in 2000, and I still get those horrible days with side effects of all kinds. I am anemic also for all these years, but have not needed a transfusion.  Keeping an eye on my Platelets right now.

I have been on 400 mg. of Gleevec since day 1.  What dose are you on? I would think if you were on a high dose that you would feel worse in some cases.  I still get very frustrated at times when I do not feel like I am up to doing things that I used to do.  I do not know what the answer is.  I have learned to just realize that its all part of my treatment until they develop something for a real cure.  I have to stop and think sometimes about what people did many years ago who were diagnosed with CML, and without a BMT their life expectancy was 5 to 7 years.  Some people have lived longer, but that used to be the basic timeline.  Now although we deal with all these things, we do have a longer expectancy for life.  I look at people who are younger than me, and I am so glad that they get to see their children grow and share many happy occasions with them due to these TKI drugs.  I have also learned that if I do not feel like doing something, then I do not have to.  With this summer weather now, I have gotten many invites to different outdoor activities, and I used to feel bad saying NO.  Now I think if somebody cannot understand that I might not feel like doing something than Oh Well it does not bother me anymore.

I am just Thankful for each day as it comes.  When I was first diagnosed, I had all these crazy things going on in my  head and wondering how long would I be here.  I never imagined I would be at the 13 almost 14 year mark.

Try to just do what you can, and what you cannot do will wait for you.

I always say that if you have a loving family  and caring friends to support you it makes all the difference in the world.

I hope you have a better day tomorrow.


#3 BY196


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Posted 24 June 2012 - 04:58 PM

Hi John:

I am in the same boat as you. There's nothing wrong with you--everyone is different. I think the impression oncs give (mine at least) is misleading, in terms of downplaying side effects.

I have gotten some relief through thyroid hormone supplementation, but I'm still quite fatigued. (Like you, I was lightheaded, but that went away once I started taking Synthroid.) I switched from Gleevec to Sprycel in February 2012, and the brain fog definitely lessened a fair amount. Before that, I felt like I had lost about 30 IQ points. I also experience less nausea and fewer GI side effects on Sprycel; those side effects were not disabling but certainly reduced my quality of life.  It might be worth talking to your onc about switching, if you haven't done so. I have never been myelosuppressed on either drug so maybe others could talk about their experiences with different TKIs.


#4 GerryL


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Posted 24 June 2012 - 05:47 PM

Hi John,

My doctor really likes Tasigna over Gleevec in regard to side effects.

I haven't switched and instead am trying a dose reduction down to 300mg of Gleevec. I have been on Gleevec for two years. I found that my side effects seemed to increase slightly at about the 18th month stage, so after a year of PCRU I managed to talk my doc into lowering the dose. Talk to your doc about trying a different TKI to see if that makes life more bearable.

#5 pammartin


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Posted 24 June 2012 - 07:17 PM

Hi John,

I am sorry you are struggling.  I wish I had words of wisdom or comfort, these days I struggle finding my own.  I have asked myself the same question you posted many times over the past few months, and I have not reached my one year diagnosis date.  I read other's posts and I am amazed, they are working, enjoying life, vacationing, and moving forward.  There are many days I can't seem to move off the couch, let alone go to work.  I am sorry you have had to have a transfusion, I can only say I have some idea of your frustration.  I have been to the ER three times in as many weeks for fluids, I cannot seem to keep hydrated.  I have stopped the Ritalin quite a while back, although it gave me energy, I am not sure it was not adding to my depression and dehydration.  Susan's post is so important, she has been fighting this demon for many years, and she knows the ups and downs of the CML cycle because she lives it every day.  I have made a few steps toward finding help this past week.  After a month of trying I finally have my verified appointment at Cleveland Clinic; I am changing CML doctors.  I have been seeing a local therapist and although helpful, he has referred me to a psychologist, he believes I am suffering from major depressive disorder, my appointment is July 3.  I do not know you personally, but I believe depression is something that goes along with this disease, and sometimes it can become more than we can handle alone.  One thing I keep reminding myself, each one of us is different, and although we share the CML diagnosis, we may have little in common with how our bodies and mind react to the disorder.  Like Susan, I hope you have better days ahead, thank you for sharing your post, I appreciate your honesty and anger at this disease.


#6 CallMeLucky


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Posted 24 June 2012 - 11:34 PM

If your side effects are that bad after two years then you should try another drug.  You can always go back to Gleevec. 

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%


#7 Cathy


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Posted 25 June 2012 - 08:45 AM

Hi, I just made CMR and am on 50 mg  Sprycel. But still have side efffects. Always have fatique that does impact my life some I try not to let it. I do work full time and always have only missed a couple weeks in 2 years I need my medical benefits and paycheck. We all do what we can to get through life. I have other side effects to and wonder why my quality of life isn't better. I'm anemic again and most of the time that is why I'm on lower dose I can't handle full dose mylosurpression and other issues. You are not alone Some people are very lucky and don't have many some do. just get through one day at a time and post when you need us.

Hang in there,


Ps its funny now that I'm CMR people think your side effects are gone and everything is fine now. I think they just stop worrying and thinking about you when you say I'm in remission. Which is fine I guess. LOL



DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!


#8 Lizzybee


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Posted 25 June 2012 - 09:37 AM

I too am anemic, and it's very frustrating.  I was diagnosed a year ago, had one fabulous month in November when my rbc/hct/hgb were all normal, and haven't had a great day since.  I am so hoping to be MMR at my next appt; if I am MMR and still anemic, I will be either switching to gleevec starting at a regular dose to see if side effects are more tolerable; or reducing my dosage of Tasigna to see if I can hold the response on a lower dose.  My employer has been very generous with reducing my workload and giving me flexible hours, but I really want to feel good enough to work full time or at least more than I am currently working.  Fortunately, I only have to work 30 hours per week to keep my insurance, and I've been managing that.  If you don't feel confident that your onc is managing your CML/meds/side effects effectively, changing oncs might be a good next step for you. 

#9 Tedsey


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Posted 25 June 2012 - 12:58 PM

You may want to try a drug change.  As each indiviudal has unique immune genes and these genes are expressed uniquly in the individual, Gleevec, although working, may not be the best match for your body.  With a change, you may eventually feel better (you gotta give a new drug some months).  And you could always switch back.  I think it cannot hurt if your insurance covers it.

Please take care.  Sorry to hear you feel so horrible so often,


#10 Tedsey


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Posted 25 June 2012 - 01:01 PM

I just have to add, it appears that although it is claimed to be rare, allergic reactions from whole blood transfusions appear to be frequent for us CMLers. 

Sorry you had to go through this.  I did too.

#11 dennyzb


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Posted 25 June 2012 - 04:27 PM

Hi John, I have been on Gleevec since 3/10 and I also wonder why I don'y feel as well as others seem to be doing. I can relate! You are nor crazy.

#12 janne



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Posted 25 June 2012 - 06:24 PM

If I'm not mistaken, I think John has already tried Sprycel and Tasigna. I believe he reacted quite poorly to both of those and went to Gleevec. He says Tasigna put him in the hospital (if I have read the right post). That leaves him with Gleevec and his current dilemma. At two years, I also did not feel well on Gleevec. I was fed up and trying to keep my job. That was in late 2010. I did make the switch to Tasigna, also reacted lipase-wise, but was otherwise asymptomatic with no abdominal symtpoms and we dropped the dose until my lipase dropped.  I also got a bad rash, very inflamed and I did my own tapering. I now take a lower dose of Tasigna, have had great progress and I feel much better than on Gleevec. Again, I think it is like Trey has said (in a previous post), there is not enough clinical data for many doctors to feel comfortable prescribing lower doses of these TKIs, although we do know that some of our readers are doing quite well on lower doses.  Further studies would be helpful. As for me, I had to wrestle between taking a full dose and feeling lousy and losing my job, or doing something about my dose so I could feel better. Quality of life. I would go back to Gleevec if I ever had to due to financial reasons or whatever, but at a lower dose. My doctor is just glad I am taking something and my PCR results are going in the right direction.

Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.


CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 

#13 pammartin


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Posted 25 June 2012 - 09:16 PM

Nicely written Janne, I am glad you posted on this thread.

#14 Guest_billronm_*

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Posted 25 June 2012 - 11:48 PM

Hi John,

  G worked for me but I had gi issues so I switched to Sprycel, my brain fog is much better, but I suffer from the anemia & low iron. Have you had your iron tested? Mine was low last summer and I had iron infusions,it brought my number up, but now my iron is low again so I'm taking iron pills for a while, and my onc lowered my Sprycel to 50mg. I get bw next week so hopefully my iron is up. I'm very tired right now but i'm hoping the extra iron i'm taking will kick in soon.

  I was looking up ways to increase my iron naturally, and one way was to cook your tomato soup, chili, sloppy joes in an iron skillet. I guess cooking anything with tomatoes in an iron skillet increases the amount of iron you put into your system. I dug out my 2 iron skillets, so I'll let you know if it works.  Hang in there  Billie

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