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Who beat me with a sackful of doorknobs when I wasn't looking?


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#1 Happycat

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Posted 27 July 2011 - 07:46 PM

I feel LOUSY!  Aches, joint pain, ankle swollen, shoulders killing me.  Is this what I get for being good and exercising the last 2 out of 4 days?  (It was just the elliptical, legs only, no arms.  And I exercised twice in each of the previous weeks to build up to it.)

How does one distinguish between:

     a) Gleevec side effects

     B) age-related aches and pains

     c)  disease progression?

Obviously, disease progression is the one that worries me, so how do I know when to call the doctor and when to tough it out??

It doesn't help that I read "Sadako and the Thousand Paper Cranes" this morning, either.  My dd was assigned to read it for her summer reading, and once I found out it was about a little girl who died of leukemia 10 yrs after being exposed at Hiroshima, I had to read it to make sure it wouldn't scare her.  Yeah, so it didn't scare me, but it did give me a good case of the gloomy-gums!

Traci



#2 jjg

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Posted 27 July 2011 - 08:40 PM

I hear you!!! Before G I used to run 100k a week with associated aches and pains which were reasonable and I understood. 5.5 months into G I'm lucky to do half that....slowly...and I get more aches and pains. I know that I didn't age 10 years in the last few months so I think you should blame gleevec. Wrt disease progression - you're doing regular blood work so don't let a few pains get you down.

What I do is alternate through all different types of exercise to distribute the stress on various parts of my body. On different days I run, ride, swim, water run, gym or if all else fails hubby and I walk along the beach (sounds romantic but it is winter down here). I rarely do one type of exercise two days in a row but I've only missed one day since dx and I'm not giving in now.

I've also had to find patience that I didn't know I had - two steps forward...ouch...one step back. I don't find the joint pain persistent - might hurt one day but rarely the next. Tendon problems are a bugger - need to be picked up early and rested by switching to another type of exercise. Most of the normal treatment methods still apply - ice things that are swollen, massage muscles that have cramped etc. It doesn't mater if it is age or Gleevec, bits of your body aren't so keen on getting into exercise so you've got to be nice to them and slowly talk them around to seeing it your way. I'm pretty sure that if you don't use it G will make damn sure that you will loose it...that's a slippery slope to feeling very old.


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


#3 GerryL

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Posted 27 July 2011 - 08:49 PM

Hi Happy,

Since I figure it is really only about six months or less since your diagnosis, option B) is probably out of the story.

Disease progression - similar tale, since it is a slow progressing disease when left unmonitored and you were more than likely diagnosed in the chronic phase?

Leaves us with Gleevec or something else - I find things cycle through each month and some weeks are better than others for exercise, so if that happens to you, I'd pick it as Gleevec related. If it is ongoing it might be "your" side effect of the Gleevec or perhaps something else. I'd look to get it checked out just to be sure that it isn't something else. Here in Australia, we have things like Ross River Fever (which is mosquito borne) which give similar symptoms to what you describe. The other thing I find is the fluid retention can make the joints a bit harder to move and make the joints feel "heavy", particularly when I'm doing yoga.

Hope you're feeling better soon.

Gerry



#4 Pin

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Posted 27 July 2011 - 09:29 PM

I've been wondering about this problem with differentiating between side effects/disease progression too - today I have the hot flushes that I used to get pre-treatment. So I am have a minor freak-out that it means something


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


#5 Susan61

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Posted 27 July 2011 - 09:42 PM

Hi Traci:  Its probably the exercise you did.  It does not take much to put you in pain in places you never thought of.  The Gleevec will give you a lot of joint pain also, especially if your new to taking it.  I have not been doing any type of exercise because of all my Arthritis, and I still get joint and spasm pain from my Gleevec after all these years I have been on it.

Do not get yourself concerned about progression of the disease.  Just talk to your doctor about whatever your feeling.  If your numbers are good, and you are on the Gleevec I am sure your okay.

Susan



#6 GerryL

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Posted 27 July 2011 - 11:13 PM

Hi Pin,

As time passes and Gleevec is working you'll get past this.



#7 janner25

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Posted 28 July 2011 - 07:56 AM

Hi Traci - I have my for 9 month appointment today so I understand where you are...I have found that things are cyclical for me.  Some days I feel 'normal' but somedays (like the last 2 weeks), I feel EXHAUSTED and have some odd aches and pains.  I will not blame my age (37), but will blame my tasigna!  I also wonder how much this heat in the east is cramping my style!

Hoping things get better soon!  And keep exercising...at the very least, you'll have aches and pains but be in shape!  .  Of course, I have no room to talk because when I start back to exercising, I get even more tired...so I just chase my 2 little boys daily.  I figure that's enough exercise for now!

Janner



#8 Pin

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Posted 28 July 2011 - 07:18 PM

Thanks Gerry

**Hey I forgot to ask Traci if you've started the game of thrones book yet? I hope you like it so far...


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


#9 JoshLee

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Posted 29 July 2011 - 07:31 AM

Hi All,

     I have been wondering the same thing! I am waking up feeling really tired and have aches and pains like a did before diagnosis! A CBC a week ago showed that my counts were all normal and my cytogenetics came back as 2/20 metaphases, so I think that means I am 10%...Which at 6 months is good niews I think! I know some people get there quicker, but hey, whatever. I just can't help but think CML is going fullf force when I feel crappy like this. I also think I am a little depressed, which would account for some of it,  I think. 



#10 Tedsey

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Posted 31 July 2011 - 02:57 AM

I have to admit, even with enlarged spleen & liver, I never felt sick.  I actually felt great and was running after and nursing baby and toddler up to the dreadful day of dx.  My WBC was 180,000! (guess I wouldn't have felt great for very long).  It is very disconcerting that if this disease is to progress, many of us would never feel it.  And it is hard to have these worries all the time with every little ache and pain.  For example, since I have had very low PLT since dx, and have been at 20-30 thousand for the past year, I am terrified of a brain bleed or some other kind of hemorrhage.  Always something to needle us.  Before, it was low ANC, but I got used to that.  I cope, but it is not how I want to live.  But, I guess it is better than the alternative.  You just gotta get your PCRs and BMBs and hope for the best.  May there be a cure for all of us in the very near future.

All the best,

Teds



#11 CallMeLucky

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Posted 01 August 2011 - 08:33 AM

Most of the time these things are side effects or unrealted to CML at all.  I have found that muscles don't recover as well after exercise now that I am on TKI drug.  If you are going to exercise hard you may want to look for a results and recovery drink at GNC (clear with your onc before taking) I find this helps me a bit.

Disease progression is unlikely as this is a chronic disease and it very rarely morphs into blast crisis or an acute form.  We worry about it endlessly, but it doesn't happen too often.  I try to rationalize it this way - if my disease was progressing, I would expect to be getting progressively sicker.  Often what I experience is something that makes me feel lousy for a couple of days, then goes back to normal, then something else comes along, then normal, then something else, etc.  In other words, cycling side effects.

With disease progression it would either sneak up on us and be caught in our blood work without us ever feeling sick, or we would feel really sick and progressively feeling worse.  Everything else I think can be chalked up to side effects and other effects of life.

I believe there is another class of issues besides the three you listed, actually it's a combination of a and b.  While it may not be a direct side effect of Gleevec, TKI treatment is hard on the body and we are more sensitive to other factors like aging, muscle soreness, etc.  So it's not so much that you are feeling something caused directly by Gleevec, but your body does not handle physical stressors as well as it used to as a result of being on Gleevec 24/7.

Give it some time and don't let it discourage you from exercising, give yourself a little rest and then try again.  If the same thing happens try a different exercise like yoga or something like that.

Hope you feel better soon.


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%
 

 





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