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Hello. I have been taking Spyrcel for 3 months now. I would like to compare notes.

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#1 jhoglin


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Posted 28 April 2012 - 09:41 PM

I am 33 years old and before my CML I had always lived a very healthy life. I am experiencing side effects from the meds that are bringing me down.

On the bright side of things my WBC has been within normal range and my cancer is going into remission :-).

My worst complaint is my chronic fatigue. I have a 3 year old and 12 year old which I need to be a mother for. I am on medical leave from work  because the fatigue is so serve. Does anyone with CML have sore feet and numb hands and feet?

Thoughts or ideas?  Is anyone seeing the same results? Thanks Jenni

#2 idahobeavers


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Posted 29 April 2012 - 12:42 AM

yes me. my feet hurt something fierce and i cannot wear shoes or stand for long. they burn,cramp and just plain hurt.also my hands and fingers go numb. especially if i am holding something for 2 lonk.like the phone,pen or whatever. and my fatigue level runs about a 9 most days. thank god for soft chairs and a couch.also my hands and feet cramp up really bad

#3 CallMeLucky


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Posted 01 May 2012 - 10:42 AM

I am on Gleevec but have similar side effects.  I would say that over time they get less, but what I really believe is that over time you learn to adjust better and it is not as bad.  The fatigue can be tough, but keep in mind you are still early on, you have a lot going on in your body, not to mention the stress reaction from a cancer diagnosis.  You have been under extreme stress since the doctor first told you your diagnosis and it is only now after a few months in treatment that you are starting to sit back and take account of what has happened.  You no doubt have been very worried and as you start to see the treatment is working you are starting to think beyond one day at a time.  All you have been through has taken quite a toll on you and the physical exhaustion of that needs to be accounted for.  As time goes on you should adjust and it won't seem as bad.  Your body will recover and while fatigue is a side effect it should lessen.  At this point the things you should look at are making sure you are eating right and try to exercise even if it is just walking.  I find that if I keep moving I can usually get through the fatigue but when I sit around and let it build it can get the better of me.  I now know the warning signs when a tired spell is coming on.  If it happens during the day at work, I make a point of getting up and going to take a walk which usually shakes off the extreme tiredness.  As more time passes you can also look into some other options.  I have found that Acupuncture has offered some relief and more general sense of feeling well.  The muscle aches can be battled with good exercise and stretching, you may also find that a magnesium supplement can help.  Remember to drink a lot of water.

It is tough, but it can be managed and as more time passes you will handle it better.  Hang in there.......

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 kellbell


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Posted 01 May 2012 - 10:44 AM

Hi, Ive been on Sprycel for 2 and a half months. I am 36 years old and also have not had any health problems. I was very tired before I was diagnosed with CML so to me, I feel better since taking the medicine.  My blood cbc is in normal range now too.  I do have soreness on my fingertips and get numb toes and hands also.  The numbness in my toes got better after a couple weeks though. I had a few wierd side effects like red dots on my hand and my ear getting red and hot, I also had a problem with swelling in my hands and feet but I stopped eating things with alot of sodium and it seems to be helping.  I was going to ask the Dr. for a water pill at my next visit because I have never wieghed this much in my life except when I was pregnant. I gained 25 pounds in the last 2 years. I also feel real bad if I don't excersize.  I never used to excersize before, I just was always very busy and running around with my kids. Since I started feeling tired all the time I didn't do much anymore, but now I force myself to excersize everyday and I feel alot better. If I don't I feel tired and weak and stiff the whole day.  It seems like my muscles get weak easily.  So I am forced to live healthier, I guess there's nothing wrong with that.  It is very nice to see what others experiences are and it helps to see they are similar to mine. Oh I also get red hands and feet and sometimes my face too.

#5 cleocans


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Posted 01 May 2012 - 12:49 PM

I've been on Sprycel for a little over 9 months now.  I have had bone and joint pain here and there.  But no burning, cramping or numbness.  I found exercise helps with the fatigue.  It doesn't have to be hard or vigorous.  A nice walk outside will help.  I do need my 8 hours of sleep though or I am just tired all day the next day. 

#6 hannibellemo


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Posted 01 May 2012 - 03:24 PM


I'm 60 and have been taking 100 mg. Sprycel for 2.5 years, although I have been off for the last 7 weeks due to a nasty pleural effusion. I will start again this weekend on 50 mg.

I had a bunch of weird little side effects at the beginning that did not last and then a period of 4 months where I felt really rotten, most of which, in retrospect, I blame on severe fatigue but I didn't recognize it for what it was at the time.

I was MMR after 8 months and I would imagine I no longer am at this point, but hoping I can get back down there on a reduced dose. Also hoping that the reduced dose doesn't cause another pleural effusion.

For the symptoms of neuropothy (the tingling and burning in your hands and feet). I've tried something that diabetics sometimes use called Alpha Lipoeic Acid. I took 300 mg. every day. You will know if it is going to work for you within 2 - 3 weeks because the sensations will disappear. If they don't disappear in that period of time then the ALA likely won't work.  I did this with my doctor's blessing and it worked the two times I used it - never took it for more than 2 - 3 months at a time. These symptoms arrived fairly early after starting Sprycel and I haven't used the ALA in over 18 months.

Good luck. Be aware of the symptoms of pleural effusion and let your doctor know immediately  if you experience any of them - chest pain, dry cough, shortness of breath, etc. This can be a dangerous adverse reaction but can be reversed with a drug holiday.

Good health!




"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>

#7 jhoglin


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Posted 02 May 2012 - 10:16 AM

Thank you for the advice and comments. I feels good to know that I am not crazy and the symptoms I have are real. My doctors bedside manner is not the best and it's time for a second opinion. My fatigue is real and needs to be addressed so I can return to a somewhat normal life.

Warm Regards,


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