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#1 momruns

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Posted 30 July 2011 - 07:32 PM

I was diagnosed in Feb. with routine blood work, I took no meds, 5'8" 145lbs, ran for 25 years, felt great, I am an RNFA (registered nurse first assistant) in the OR.  So, I get this white count of 70 and here I am.  I am glad there is this site.

First, now that it is Aug.  my WBCs are 3.2 my H & H is 28 and 9, I was on Gleevac 400mg/QD till I complained that I was totally exhausted, and felt like %&#*).  So he cut me back to 300mg/qd.  I guess my question is:  Are these the levels what I will have?  Asking him he just says "your numbers are good".  Every time I tell him about the fatigue or loose stools he said Oh I never really get any complaints with Gleevac.  I do not want to complain but I am not an old 52.  I am very active, work full time and enjoy life.

So, I feel I am not getting any support from the cancer center here.

Thanks,

Loreta



#2 GerryL

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Posted 30 July 2011 - 08:26 PM

Hi Loreta,

Welcome to the board. if you're looking for lots of support and hopefully answers to all your questions this is the place to be. I'm on 400mg Gleevec since mid July last year and currently sitting at MMR. I'll leave others to look at your bloodwork as I think the readings are done slightly different here in Australia and we have a very good brains trust on the board to help. As to your doc, I feel like getting him to pop a Gleevec everyday and see how he responds to the side effects.

Regarding your side effects - start taking probiotics and also increase your fibre to help bulk out the stools. The other thing I might suggest you try is rather than lowering your dose get your doc to prescibe your tablets in the 100mg form and take it twice a day. A lot of people have found this helps.

Gerry



#3 Susan61

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Posted 30 July 2011 - 09:28 PM

Hi Loreta:  I agree with having your doctor give you 100mg. tablets so you can spread them out through the course of the day.  Gleevec 400MG. is the basic dose, and you should not be going lower due to feeling fatigued or the diarrhea.  Your only starting with this, and its not good to be cutting back.  I hope your doctor is a CML Specialist.  I only say that, because some doctors that do not specialize in CML are not up on how the dosing should go.

I have been on Gleevec for 11 years, and I felt horrible in the beginning.  I was diagnosed in 1998 before we had TKI's. I have been on 400mg since day 1, and now the side effects which I still get are tolerable.  I have been PCRU for 8 years, and I still take my pill everyday.  To be honest I do not like the answer you got from this doctor.  Is he an Oncologist in the hospital where you work?

     I am a firm believer in second opinions to be sure of everything.   We have a lot of good people on here to help you out with any questions you might have.  I have gotten more information on this discussion board than my own doctors have given me at times.

    Glad you joined our group.  There is always someone here to talk to.

Susan 61



#4 Trey

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Posted 30 July 2011 - 10:35 PM

Your counts are what we would call "Gleevec normal".  Loose stools we would call "sharts", and we see them often.  We are also fatigued, and we call it....well....fatigue.  You sound like us.  So welcome to the Gleevec-normal sharting fatigued group.   I guess that is "normal" to us.  Welcome.



#5 lala

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Posted 30 July 2011 - 10:54 PM

Hi...and welcome to our club!  I have had good numbers on Gleevec for five plus years.......but the fatigue and loose stools are with me every day.  Last fall, the people on this site comforted me greatly when I was falling apart after my onc. Told me I should be able to work full time.  Omgosh...no way.  Everyone here said he should take the G and see how we feel.  I later told him this, and he apologized and said everyone is different so  their situations are very different.  Some live just as they always did while others do not....I am in the second group.  Maybe being 54 is part of the reason.  I truly have only a few hours of energy per day and have had to settle for that.  Wish it were different....I used to go 90 miles an hour all day long! Most days I handle it well...other days, I am tired of it.  This week, I am tired of having a chronic disease.  I am thankful for the wonderful response to the life saving Gleevec, but I want my old life back!  I still LOVE teaching and being a Grammie for the first time....I need energy! :). I hope all this doesn't scare you....just trying to be honest.  We are lucky to be alive.....for sure!  I am not a runner, but I think cml is like running a long long run.....pace yourself!  All the best, Lala



#6 lala

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Posted 30 July 2011 - 10:57 PM

Trey-thanks for the laughs.....your description is perfect!  -Lala



#7 SunNsand

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Posted 30 July 2011 - 11:30 PM

Just want to say Hi, I'm 53, on 300 mg Gleevec. As for the rest, Trey nailed it as usual



#8 hannibellemo

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Posted 31 July 2011 - 10:37 AM

Welcome! I can only agree with what everyone else has said. Hopefully, when your Hgb increases your energy level will, too. I didn't experience fatigue on Gleevec and that is probably why I was so caught off guard when I felt so awful on Sprycel. It was only after a year that I could look back and say "Oh, so that's what everyone means about being so tired!" I just thought of it as feeling really crappy! 

Sometimes I amaze myself with how obtuse I can be!

I do, however, remember sharts! I don't miss those at all!

Just so you know - we are pretty open with our bodily functions and get good laughs about them. There is nothing that we don't talk about, so don't feel shy!!

Best regards,

Pat


Pat

 

"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>


#9 CallMeLucky

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Posted 01 August 2011 - 08:05 AM

Either your doctor is lying (Jedi mind trick), he's not listening to what his patients say, or he has so few patients on Gleevec his sample is not representative.  CML treatment causes fatigue.  That is the way it is.  Sometimes it gets better over time, sometimes it lingers.  If it get real bad a drug change may help, but sometimes it doesn't seem to make a difference.  Once things settle down you can look at some things to do to help things along.  Things like eating well, getting good sleep, exercise, etc all help.  I have found that overtime I am learning to deal with it.  Some days I feel it more than others but I can often push through it if I distract myslef.  Sometimes I also find I am fine until I stop moving and sit down and then I can't get back up, so I just keep going

As others mentioned, your counts look normal for treatment, sometimes they go back up, give it some time to see how it goes.


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%
 

 


#10 grannyd

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Posted 01 August 2011 - 11:34 AM

Hi, welcome to our club that we didn't really want to join, but glad it is here for all of us to share & learn. I am 59 yrs. Taking tasigna since Feb. 1st this year. I too have fatigue but find the more active I am the less tired I feel., but I do have my days of really exhausted. Keep posting & let us know how you are doing. So many wonderful people & they know sooo much about CML. Prayers to all, granny d



#11 LivingWellWithCML

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Posted 01 August 2011 - 12:46 PM

Hi momruns,

NCCN guidelines call for a *minimum* dose of 400mg for Gleevec out of the gate, and I don't believe it's a good idea to react to side effects by lowering the dosage to less than 400mg.  My diagnosis was within a month of yours: I was also started on Gleevec 400mg, and now that I'm several months into treatment, I do feel the fatigue.  I used to be able to wake up at 6:15am with no alarm and ready to take on the world, but now it's tough to roll out of bed on most days!  My dosage remains the same, but what I've found works best for me is ... well ... running -- or swimming.  Are you still able to run?

Today was a classic case for me: up early on a Monday morning and feeling extremely tired (even after getting a full night of sleep), downed my Gleevec with breakfast first-thing, waited about an hour or so (with a single cup of coffee littered in), then I forced myself to go for a hard, hilly run outdoors even though my body was telling me "no way".  The first mile is always the toughest, but once my blood starts pumping, then the fatigue goes away and it carries me through the rest of the day.  My WBC is also in the 3.x range, and I have "Gleevec anemia".  I am finding that the body adapts in amazing ways, because although I have low hemoglobin levels, my running and swimming's getting faster every day now that I'm on treatment.  Every time I go in for my checks, I really am expecting to see normal hemoglobin and RBC, but they continue to run low.  So now I'm just making the reduced number of RBCs work harder!  Anyway, I know that this exercise routine is tougher than it sounds ... but I've basically told my new CML body to shut up and deal with it.

I also like Trey's unofficial theory on exercise and TKI treatment -- so within an hour of swallowing my Gleevec pill each morning, I force my body to exercise as hard as possible in order to flush out those leukemic cells, so they can be exposed for certain destruction by the freshly-absorbed Gleevec dose.  My mind really does believe that's happening, and it motivates me to exercise hard ... even on the toughest of days.

Others on this thread mention exercise, and I can say that it definitely helps!

Dan


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#12 momruns

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Posted 02 August 2011 - 07:21 PM

Dan,

Thank you for the post.  I had not run since november (our winter was bad and I was working a lot of hours) then in Feb I got the diagnosis and was (I thought) too tired.  After reading your post, I got out and ran today, I needed that little push to get my life back.  I ran my first marathon when my daughter was 10 months old and have run them in my 20's, 30's and 40's and now I am 52 and have a goal.  This is just what I need right now and I thank you.

Loreta



#13 Marnie

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Posted 02 August 2011 - 07:59 PM

Hi, lala. . .have you discussed changing meds with your oncologist?  If the side-effects of Gleevec are impacting your life that much, you might want to consider a change.  I didn't realize how awful I felt on Gleevec until I switched to Sprycel.  I have virtually no side effects any more.  Might be worth discussing with your doc.

Marnie



#14 lala

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Posted 02 August 2011 - 08:59 PM

Hi....you won't believe this...I was at the onc today!  He said I am doing so well on G .....5 years PCRU or whatever it is called......so he thought if I can tolerate the fatigue, stay with it.  He isn't a fan of lowering to 300.  Now, you've got me wondering........wonder what everyone on this board thinks.  To feel good again would be wonderful!  Maybe I'll start a new thread and ask .......thanks!  Lala



#15 lala

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Posted 02 August 2011 - 09:32 PM

Trey and Lucky, can you read my posts on this and tell me what you think about leaving glleevec for a different drug?  I would love to feel better...but I sure don't want any headaches.....thanks, Lala



#16 CallMeLucky

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Posted 02 August 2011 - 09:46 PM

Trey is obviously much more experienced to answer these types of questions.  Nonetheless I can certainly share my thoughts.

Like anything else there are pros and cons

Some pros to staying with Gleevec

You are stable on Gleevec - you could be trading the devil you know for the one you don't

Gleevec is less expensive and will be much less expensive in a few years when it goes off patent.

Gleevec has been around longer and the longer term effects appear to be non-issues

Some cons

Basically one, quality of life and that is a big one

Some thoughts about a different drug

It may reduce your side effects, but it could possibly bring on a new more severe side effect.  Pleural effusions are a concern with Sprycel, some people have a really tough time with rashes with Tasigna and the dosing schedule of Tasigna is a challenge.

I don't think you would risk losing your status by changing, it appears the newer drugs are quite effective.

You could always go back to Gleevec.

Keep in mind if you switch you will need to go back to frequent blood work for a period of time to ensure things are settling well.

It is a very tough decision and it is a personal one, only you know how you feel.  It has been a blessing to get a second chance at life with TKI drugs, but not so great if you feel like crap all the time.  So if you trully feel lousy, then it may be worth giving another drug a try.

Best of luck with your decision....


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%
 

 


#17 jjg

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Posted 02 August 2011 - 10:03 PM

Hi Dan,

WOW I'm completely amazed that you can run an hour after gleevec...in the first 6 months too... hard core. Even thinking about running in the first hour after G makes me feel more sick!!! I'm taking 600mg but doubt I could do it with 400mg. I have to save the running for when G is lowest and I feel best. I do plug the G in straight after running so if subscribing to Trey's theory I'll just have to hope that my wbc are still elevated when G concentration hits its peak.

Momruns,

On the fatigue side of things for the first 3-4 months I was regularly hitting the wall big time...as in the wall remained vertical but I had no option but to be horizontal. It was mainly straight after morning G or in the evenings. In the early mornings before G I was a different person and could exercise quite a lot (less then before G but still a lot). I was given an anti-nausea pill (Maxolon - prob called something else in the US) which I only took when I felt really sick and it worked well. It not only stopped me feeling nauseous but it also seemed to bring me back to life energy wise. Eventually I had a light bulb moment where I realized that what I thought was mainly fatigue and minor nausea was actually mainly nausea - I'd just had a happy life without really knowing what drug type nausea felt like. Now I'm much more into the anti-nausea pill - maybe every second day rather than once a week. Recognizing that the nausea was actually a bigger deal than I thought hasn't "disappeared" the fatigue but it has helped heaps.

I started G in Feb too and approaching the 6 month mark the side effects are easing, plus I'm getting smarter with them too. As Lucky said despite what you doc may think the fatigue is real....but get out there and run anyway. People have done ironmans while on G so a marathon to celebrate 50 something is an attainable goal...and it would be such a sweet one.


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


#18 LivingWellWithCML

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Posted 03 August 2011 - 07:20 AM

Loreta,

Awesome - I knew you would.  Keep it up!  When's your next marathon? :-)  I'm a little gunshy about taking on another marathon until I reach a stable and deep response to treatment, but I've been running some 10Ks on a regular basis.  Now that you're getting your running routine back on track, you will be amazed at how fast you get.  CML had slowed me down quite a bit at the end of last year (although I didn't realize it was CML), and I couldn't get through a 10K at all ... all I could muster was some stop&go routes that were about 3.5 miles.  However, once I started on Gleevec, my running and endurance have improved drastically.  Last month, I actually ran a 10K race in 48 minutes.  I couldn't believe it!

Really happy to hear that you got those running shoes back on!

Dan


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg


#19 nathaliece

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Posted 03 August 2011 - 09:15 AM

Loreta,

Welcome!  Although I do not have as much experience as many in this wonderfully supportive group, (diagnosed in 11/10 and taking 400 mg Gleevec), I did make the change from one 400 mg pill to four 100 mg pills about 10 weeks ago and have seen a significant improvement with side effects.  Instead of being tired all the time like I was previously, I experience that fatigue about 20% of the time.  The other side effects are much less also.  About a month after my diagnosis, I was experiencing excrutiating pain in my hands (felt like someone was sticking me with an ice pick).  My first onc gave me a 7 day Gleevec vacation and sent me to KU's BMT clinic for a consult, sharing with me that he was considering a reduction in my dosage.  The experts at KU were adamant about not reducing the Gleevec dosage and shared with me that they felt the proper protocol was to continue to try Gleevec for a while and treat side effects as much as possible and if after that, I could not tolerate Gleevec, then switch to either Tasigna or Sprycel.  They explained that they prefer to stick with Gleevec if a patient can tolerate it and if results are being obtained beclause they have 10 years of data about the long term effects of Gleevec and the other drugs are fairly new by comparison.  I understand how you are feeling right now.  I am 49, a single mom and working full time as an attorney.  About 6-7 months ago, I did not know how I was going to manage all of this.  It has gotten much better and the Gleevec has been very effective in treating the CML.  Please know that we are here for you and everyone needs to vent every once in a while.  Hearing of other's great results is inspiring and finding humor in dealing with side effects keeps things in perspective.  Many of us also recommend a nice glass of wine as helpful too!

Nat



#20 LivingWellWithCML

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Posted 03 August 2011 - 05:26 PM

Nat's right -- I definitely recommend wine!  I drink a glass or two of red wine nightly ... and it's wonderful.  My CML specialist expressed zero concerns with that routine; he just suggested that I not drink the whole bottle in one sitting. <wink>  Leave it to a doctor to state the obvious.

It's a challenging adjustment, but I see that many of the folks on this board make that adjustment quite well and they pass on valuable wisdom to others who are still struggling with the reality of diagnosis, treatment and one's "new normal".  I'm already seeing some emotional improvement on my end after getting slugged in the gut by the surprise CML diagnosis in March 2011 (although I know I have a long way to go), and I have to say that the great community of folks on the board have been such a huge help.  Here I was in my early-40's, with my wife & 3 young kids, running a small consulting firm full-time, eating better than anyone else in my family, exercising rigorously with a few respectable marathons under my belt, getting great marks in my annual physicals, etc.  And talk about running -- I actually ran a 5K race on the morning I was diagnosed and had absolutely no clue what was going on ... other than a slower running performance.  My wife received the dreaded "your husband is a very sick man" call while I was out running errands after the race, and I reluctantly reported to the ER with my running shoes still on and in total defiance.  Of course, I finally knew something was up when I watched the triage nurses drop everything as I walked in the door and admit me immediately in front of a room full of people still in the waiting room.  Amazing how an astronomically high WBC will get you to the front of the ER line!

Running is what kept me sane through the transitional period (dx -> treatment), even though it was tough and my breathing continued to suffer greatly.  I stumbled through 3 miles after the bone marrow biopsy and fought through the infamous sore hip.  Like many others out here, I had to pop hydroxyurea pills for the first couple of weeks while we awaited the biopsy results and the first bottle of Gleevec to arrive.  Despite the hydro effects, I forced myself to run 30 minutes every single day in the Florida heat (while on vacation) in order to sweat out all of the hydro-destroyed blood cells -- of course, who knows what was actually happening, but that's what my mind believed.  And I continued as I started on Gleevec, then I started to see the dramatic improvement in my performance within a couple of weeks of starting treatment.  I chronicled it a bit in my blog, but I went back and ran the 5K race route roughly three months later (the one that I ran on the day I was diagnosed with CML), and I finished it almost four minutes faster.  It was a mind-boggling improvement of over a full minute per mile!  The body is clearly adapting, but I'm also pushing myself pretty hard to fight the fatigue, and I have no plans to let up.  The fatigue I feel when I wake up every morning really stinks, but it's part of my "new normal", so I just have to tell CML to stick it ... then lace up the running shoes and fight through it.  I swear it works.  Running's my thing and it's not for everyone, but I know that if I can get outside and run far & fast with steady breathing, then Gleevec is working and I'll live to see another day.

One of the biggest motivators for me is knowing that CML was on its way to taking away my fitness abilities (and my life) in a short period of time, so to have a remarkable TKI give that back to me so quickly (albeit, with some catches) ... well, it's just a great feeling and I just have to work hard to take advantage of it.

I am so glad to hear that you got back out there and did some running.  Keep it up and maybe we'll run a marathon together someday.


Dan - Atlanta, GA

CML CP Diagnosed March 2011

Gleevec 400mg





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