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What am I capable of? What are your schedules like?

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#1 CML2012


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Posted 10 December 2013 - 12:39 PM

Hey everyone, I was on Gleevec 400mg and went from 53%(Dec 2012) to 41%(March 2013) to 1.69%(June 2013) then to 5.63%(Sept 2013).  They switched me to Sprycel 100mg after Sept results went up and I am at 1.1% (Dec 2013) These are not log and not international just percentages. It has been a year and I am not at 0%.  I am female and 43 years old. I do not have any other major health issues (that I know of). I have a husband and two teenage children.  I teach high school math.  I work 40 to 45 hours a week, plus keep house, take children to sports, all average working mom stuff.  Am I okay to keep doing everything I am doing?  Is my busy life keeping me from being at 0%?  Just wanting your opinions? Does everyone else with CML work?  Does everyone else keep on going and not change their schedule? 

Feeling frustrated and a little discouraged.....needing support!

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)

#2 GerryL


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Posted 10 December 2013 - 06:55 PM


For me stress levels play a part in how I feel about my CML, so I've tried to learn not to sweat the small stuff. If you're managing everything and still feeling okay (not fatigued or over whelmed) then you shouldn't need to change anything.

It could just be that Gleevec wasn't the drug for you and Sprycel will be the one. There are a number of people on the forum who have made the switch and had better results from Sprycle than Gleevec.

#3 Marnie


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Posted 10 December 2013 - 08:08 PM

Hi . . .

I feel your pain.  Teaching is exhausting.  I teach middle school, have the same housekeeping chores that every female homeowner feels, though I don't have children.   My husband and I are very busy with motorcycle touring, kayaking, snowboarding, camping, etc.  Yes, I'm always tired, but I haven't changed my life since cml (2009).  I do think it's very important to take care of yourself.  I baby myself a little bit more than I used to.  If I get sick (all those germs from school) I'm more likely to take a leave day at home than I used to be.  That said, I probably don't baby myself enough. 

CML affects everyone differently, and you will have to figure out what is right for you. 

#4 KerriD


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Posted 11 December 2013 - 03:20 PM


I take Tasigna, work full time and  I'm a divorced mom to 2 boys ages 12 &14.   I have many people in my life that have no idea that I have CML.  But I do try to listen to my body as much as possible.  Alot of days I come home from work and lay down for 30 minutes before I start my 2nd shift ... ie... make dinner, help with homework, clean, laundry and pay bills.  My boys know I need that 30 min of sleep or quiet to get everything done I need to do later.  I also will spend a Saturday in bed resting if I feel tired.  Basically, I try to live as normally as possible but also give myself the extra rest the CML requires.  Four months ago I started doing yoga 3 or 4 times a week and I feel like I have more energy and it has helped with my chemo brain issues. 

#5 LLawrence


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Posted 11 December 2013 - 09:37 PM

I agree with Gerry, if you're managing everything without feeling physically wrecked, rock on.  A med change may be all that's needed.  A lot of folks seem to be able to keep their pre-diagnosis work schedules, but everyone is different.  I find that the fatigue is my most difficult side effect to manage.  Allocating my time and energy carefully have helped substantially.  Another contributor on the site voiced a while ago that he/she had made the decision to spread the impact of the disease and treatment between work and home in order to protect both.  That hit home to me when I realized that work was getting 90% plus of my energy (at least).  That recognition triggered me to alter my work day and shorten it a little.  That leaves a bit more energy for home and hearth.  I do think that physical and emotional exhaustion hamper our ability to fight any threat, whether CML or keeping a family together.  Give yourself permission to do what it takes to keep your health and sanity as well as keep your family up and functioning because your path will be yours alone. 


#6 CallMeLucky


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Posted 14 December 2013 - 01:32 AM

The drugs work at a genetic level. The drugs and the CML don't really care what you do they will fight the battle they want to fight, you're just an observer.  Stress may intensify your side effects like fatigue and make you feel lousy but pretty unlikely there is a difference in result for someone who runs nonstop vs. someone who sits and meditates all day.  Do what you can and if the drug is not working find a drug that does.  Check for mutations so you know if you have something that needs a specific drug to work.

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%


#7 GerryL


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Posted 14 December 2013 - 04:14 AM

For some running is their form of meditation, just ask Dan and Pin.

I didn't change a lot of what was happening in my life apart from having to reduce my exercise levels when I went on Gleevec due to losing a bit of strength. When I reduced my level of Gleevec, I was able to increase my exercise again.

Give Sprycel a chance to work, it is a pretty strong drug.

#8 LivingWellWithCML


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Posted 14 December 2013 - 07:41 AM

+1 to Gerry.  Exercise is my TKI fatigue buster and a source of peace for me.  When my body is performing at a high level on the road, it soothes my soul and let's me know that everything's going to be okay.  You can do this!  I'm 45, work full-time+, travel around the USA for work, handle non-stop family commitments with my wife and three kids, and I have road biked over 2,500 miles this year.  The only thing slowing me down right now is the crummy weather and a sore ankle.  And check out the CMLers who ran the NYC Marathon last month for the National CML Society - they are a huge source of inspiration for me.

To be fully transparent, I don't feel the Gleevec fatigue at all - and I think that my exercise routine is a major factor.  Sometimes I get a little worried that maybe Gleevec isn't working when I don't "feel" that side effect, but then I get my PCR results and all is well.

When I started TKI treatment, the first few months were up and down because of side effects.  Bone pain, muscle pain, anxiety, GI issues -- I had all of that and it was challenging.  But for many of us, the side effects do settle down and we can live a normal life.  My version of "normal" is just a little more extreme than some.  Sometimes I feel a little run down, but I know that I'm now living on borrowed time every single day, so I'm just trying to make the most of every day, hour, minute, etc.

Keep us posted on your journey ... we're all here to support and encourage each other ...

Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg

#9 tazdad08


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Posted 16 December 2013 - 11:53 AM

Do what you can. I have learned that some lead a normal life, and others have a major life change. CML has kicked my butt. I was a regional manager for a fast food chain. I am now only able to work 20 hours a week. It has been a hard adjustment for me. I was always "on the move"...

Diagnosed in September 2011. Tried one year of Sprycel. Had great response. Became undetectable in a few months. Changed to Tasigna hoping for less side effects. Self medicated myself down to 20% dose and held for 3 years before becoming detectable again. It has been a journey that has helped me realize what life is about! I am all about a balanced life. I firmly agree with my decision to lower my dose. What is life if you aren't living? Mine will never be the way it was, but it is going to be as good as I can make it! Drs PRACTICE medicine, we can guide our dr to help us with a better life! Don't settle until it's acceptable to you!

#10 Hokieman


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Posted 18 December 2013 - 09:11 PM

It gets better. Hard to believe but I was officially dx a year ago on Election Day. At this time last last, I was totally exhausted, down 25 pounds,  but started on Tasigna, and doing remarkably well. I hitt MMR at 12 months.  Like Dan, I am in a job that requires consider travel, long hours. Even when I am in town, I get to work at  7:30 a.m. and go until I hit the gym around 6, for 4 plus miles on the treadmill and a good work out. But. I really require Saturday and Sundays to recover and get ready for a full week or work. So far, only my immediate family is aware of my disease. The downside however is that I do so well during the week is that it frustrates my family that I need Saturday and Sunday to crash and recover. I love my job and would go crazy at 59 not to work. It has been an up and down year adjusting to the new me but I am very lucky compared to what others are going through. Just encourage everyone to hang in there. I love this site. Since I have not "come out" to my CMS, it is my outlet to be with others who is going through the same challenges in a caring environment.

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