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#1 JoshLee



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Posted 30 August 2011 - 04:22 PM

My Hb is 14.8.....Why am I so tired? I feel like I've been having an extremely tired week and it just doesn't make a ton of sense to me. Why would I be tired with a good Hb level? It's crap like this that makes me feel like the meds aren't working. It feels weird being ready for bed at 5:30. Hopefully I am wrong! Hope you are all doing well. -Josh

#2 lala


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Posted 30 August 2011 - 04:35 PM

Hi...this is my favorite topic.......unbelievable fatigue, isn't it?  I have had it for five plus years......my first year, I spent in bed!  Just yesterday at the internist, I told her for the first time in seven years I feel like I could start walking daily......I have done two days and now I am on the couch!!!!!!!  There is a lot of info under fatigue on this site!!!!!  It is very common........the men suggest exercising through it.......I can't imagine being able to do that.....some can!  I always love to read what others say.......some can resume their old lives and others cannot......me!  I have a very different normal but I am almost 55.......only able to teach half days......full days nearly killed me!!!!!!!  Good luck........Lala.         Also, remember side effects cycle..........

#3 CallMeLucky


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Posted 30 August 2011 - 04:45 PM

Hgb would be an indicator of anemia, which could only be one possible reason why you feel fatigue.  TKI therapy or chemo in general is known to cause fatigue and the exact mechanism why is not completely understood.  It's just one those things that come with the territory.  TKI is very targeted, but it is not perfect and it inhibits other things in the body, many of which could cause fatigue.  My last Hgb was 14.6.  The lowest it has been since I started this ride was 12.9 but that was a fluke, it is usually high 13's to low 14's.  Fatigue is pretty much my number one complaint.  Diet and exercise can help.  I have found it cycles and it is generally better today at 14 mo post diagnosis then it was at 6 mo post diagnosis.

As far as a sign of the drug not working, it is funny you see it that way, to me the fact I had side effects always made me feel like at least the drug was working, otherwise why would be having side effects.  To be honest I don't think it has any indication one way or the other.  The side effects are exactly that "side" effects.  The primary effect of the drug is happening regardless of what is happening on the side.

Try to push through as best you can.  If it becomes unbearable, talk to your doctor about maybe switching drugs, but be aware that while some people switch and feel less fatigue, for some it does not appear to change.  If you are fatigue sensitive, then it just may be your lot to deal with.  Look into the exercise thing, I have found it helps me quite a bit.  Don't over due it, for me 5-6 days a week wound up being too much and the high impact cardio I was doing turned out to be too much too.  I'm now doing weights three days a week and it seems to be a good fit.

Check out http://stronglifts.com/ if you are interested in doing some weight training.

Good 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%


#4 CMLSurvivor


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Posted 30 August 2011 - 04:58 PM

I know all about fatigue. I get it in fits and starts. I can go months without feeling soooo tired during the day then all of the sudden I am tired all day long for weeks.  Then burst of engery out of nowhere. Totally crazy. Of course I still have to go to bed by 10:30 at night. I swear some times I feel 90 rather than 39.

#5 LivingWellWithCML


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Posted 30 August 2011 - 05:22 PM

I'm in Lucky's camp on the exercise/fitness bit - it has done wonders for me and the Gleevec fatigue.  It can be very tough to start, but I'm now running/swimming several days a week and also doing weight training 3 times/week.  I push at it very hard in the beginning to fight through the feeling of fatigue, and it seems to wear away during the course of a workout and the results carry me through the day.  With that said, I'm typically ready to hit the sack as soon as we put the kids down!

Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg

#6 JoshLee



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Posted 30 August 2011 - 05:31 PM

Just got done with my exercise routine. Feeling pretty energized! I better do something before the winds shift! Thanks for the advice! Could I use another "!"? I think so!!!

#7 cousineg


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Posted 04 September 2011 - 02:50 PM

A link about fatigue : http://www.cmleukemia.com/fatigue.html

#8 everonward


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Posted 04 September 2011 - 03:51 PM

Some how I've managed to spend 7 hours on my feet today - no sitting at all, plus drenched to the skin by major rain fall. It is truely amazing what a mothers love can cope with when supporting her daughter at a horse show. She did get two 2nd places so that was nice but boy do my feet hurt tonight and I know I will be wiped out tomorrow.

#9 janekaye


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Posted 06 September 2011 - 02:13 PM

Although I don't post often, I generally follow the boards every few days to see how everyone is doing.  It makes me both sad and happy when I see new names in the three years since my dx - sad because I know this is a difficult journey at times, but happy because I know you have come to the right place for support and genuine caring - also lots of meaningful sharing of information, thoughts, and feelings.

I will have to admit that I was much more fatigued the first 8 months after dx when I was taking Gleevec.  I switched to a 140mg dose of Sprycel at that point and still had issues with fatigue and more importantly, pleual effusions.  Reduced the dose to 100mg a day and when I saw Dr. Cortes last January, he reduced it further to 50mg a day.  MUCH better and my last two PCRs have been 0.000.  Yay!

However, and this is a big however, I have found that rest is very important for me while dealing with CML.  Although I am 65, my husband and I have VERY active lives - much time outdoors, time spent with grandchildren, social activities, volunteer activities, and until recently, I was working as a consultant.  For me at least, I have found that the more rest I can get at night (on a regular basis) the better I tend to feel.  My counts are great, my energy is fairly good on most days, and I rarely even think about the CML (hard to believe from the perspective of three years ago, but true).

Unfortunately, I know many of you are still working, have young children, and responsibilities of a different stage of life.  But I would encourage you to think hard about the role that rest may play in how you feel and make every effort to remember that when you think you have to do one more thing before you sit down - we are all guilty of that and we need to stop and think about what matters more - time with our family and quiet time to enjoy life or accomplishing one more thing in the daily routine.

I hope that didn't sound preachy, because that was certainly not my intent - just my thoughts from a certain vantage point.

Take care --- and try to rest - it can be so restorative.

- janekaye

#10 lala


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Posted 06 September 2011 - 05:59 PM

Amen, sister!  It sure is easier to have this disease after the children are raised!  also, I am in bed at nine.....that is what this 54 year old teacher has to do....I am finally feeling better and able to take walks......a nice change!  Lala.        Rest plus a little exercise plus a job you love makes it a good day....throw in the most adorable grandson.....super day!!!!!!!

#11 Pin


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Posted 06 September 2011 - 06:29 PM

I like your message - I feel strongly about this too.

Sometimes, I'm not sure if I'm tired due to the drugs/disease or just tired. But it doesn't matter, what is important is that now I actually let myself rest and slow down (it's like now I have an excuse so it's ok). I didn't do that before.

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.


2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

#12 jjg


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Posted 07 September 2011 - 04:22 AM

Hi Janekaye, it doesn't sound "preachy" at all. It's an important message. Having come from an athletics background I already knew how important rest is and how hard it is to get right. I guess what is hard is that needing to rest at times when it seems you shouldn't is depressing. It's also hard to learn when you need to rest when what you can do varies so much from day to day, even hour to hour.

One thing I have found is that lying down is for me very very different from sitting down. Sometimes a 10min lie down can put me back on track to having a productive day when sitting for hours just holds me at exhausted. Fortunately I have my own office and can shut the door for 10mins without anybody caring, others I'm sure are not so lucky.

Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

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