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#1 Mr.Tee


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Posted 26 July 2015 - 02:07 PM



#2 CML2012


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Posted 26 July 2015 - 09:53 PM

I definitely have a harder time getting up and going than I use to. I am fine as well once I am up and about, then late afternoon early evening a nap is a wonderful thing but difficult on a regular work schedule. It is not that I don't want to do, but I think the fatigue really makes it hard for us to put our heart and soul into tasks the way we did before CML.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#3 Billie Murawski

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Posted 26 July 2015 - 10:22 PM

Hi Mt. Tee,

 I know exactly how you feel I'm so tired in the mornings then once I get moving I'm okay for awhile then the fatigue sets in again that goes on all day and for some reason if I have to go somewhere or I have a Dr appt I get real nervous most of the time I can't sleep the night before an appt. I think I have some agoraphobia going on. I've been through this before so I just have to keep on fighting it we never know when the fatigue will hit us so we want to be close to home at least that's how I feel. I don't think the human body is equipped to take so many meds. I would love to go one month without having to take any pills. Are you on other meds too?

#4 kat73


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Posted 27 July 2015 - 08:47 AM

Mr. Tee, CML2012, and Billie:  Ditto times three, for me.  So exactly my experience.  This is our new normal.  And we fight on.  Could be worse, eh?

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#5 dede5


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Posted 27 July 2015 - 09:15 AM

I agree with everything that's been said here. Sounds exactly like me. 

Dx: 01 March 2011

Sprycel 100 mg per day since dx 

MMR: July 2013

numerous side effects 

Thankful for the gift of each new day, and try to live it to the fullest  :D

#6 Dona_B


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Posted 27 July 2015 - 12:23 PM

I've been on Sprycel for about 1 1/2 years and your post also describes me as well. I get up early to get my husband breakfast and get lunch box ready then read and doze off. Soft drinks and sugar fixes provide the energy spurts to get tasks complete but the results don't help my back issues. It's harder to get to sleep at night as the events and concerns of the day are on my mind. I always was high strung but being in a car stresses me out more. Anemia doesn't help the energy issues. Currently I'm taking a few days off to get my iron levels back up before they deplete again next month.  An acquaintance is going through another round of chemo. My problems are a walk in the park compared to hers.

DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17

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