12 replies to this topic

[janner25]

I thought I was getting back to normal...wouldn't use the word energizer bunny like I used to be - but not looking at the clock counting down to the time I can put the kids down to bed.  I found myself actually enjoying them again- dancing a little at night with them. Normal.  This week - I have been down right EXHAUSTED....At 4:00, I just wanted to curl up and go to bed...and the day with the kids has just begun (with hubby unfortunately at work on 2nd shift).   I'm back to clock watching and losing my patience over the boys antics - which just last week I felt were cute and enjoyable.  What's going on?  I'm even feeling joint achiness - not ridiculous but enough to say 'what is that' - and wonder how much is in my head because I'm so tired.  I know I'm still early in all this (5 months on 3/27 since diagnosis)...but this is ridiculous!!!!  I really must have been in my own little la la land to think that I would be able to enjoy the 'new normal' which was in my mind was acceptable.  Not engerizer bunny...but acceptable.  Any one else go through this?

Thanks...

Janice

[lala]

Hi, Janice,

In my 5 year experience, I have found this happens often!  I just start feeling better, and wham...fatigue hits.  I have had to learn to remind myself that this fatigue will come and go and when it does come, to hang in there and rest rest rest and to KNOW it will leave.  Every time it comes, I panic and forget for awhile that it will leave.  Sometimes my best friend has to remind me that it is a cycle and to remember it will get better.

As I have said to the others with young children, it is hard to take care of yourself while caring for them...they are a full time job...and require a ton of energy.  I hope your cycle doesn't last too long and you are up and feeling a little better soon.  ~Lala

[janner25]

Thanks Lala - I do get comfort in knowing that this is what others go through - however, not necessarily the answer I was hoping for .  Are you also on tasigna?

[CallMeLucky]

Hi Janice,

I would say try not to look at is as going backwards and more like going in a circle.  I have found my side effects cycle.  Backwards would indicate they are getting worse, but time and again I have found that when they get bad within a few days they cycle back out to something else.  I also get the bursts where I feel pretty normal and then something will come along and remind me I am not 100%.  Lately it has been some slight breathing trouble (feel like I can't get a good deep breath) heart racing a little.  Wouldn't call it pain in chest, but feeling something is not 100% (hopefully not a PE).  But as I was saying, it cycles out and I feel good again until the next thing rolls in.

I don't know that it helps much, but like I said when I think "backwards" I feel despair like things are not working the way they are supposed to, if I feel badly and I am going backwards my illness must be getting worse.  So I try to avoid that line of thinking because every time so far, I have cycled out again.  So more of a round Robin or lazy Susan of various side effects to choose from (hmm, which one would I like to have today?)

Hope you cycle out to something better quickly.

P.S. the kids are always going to be cute and irritating at the same time, they were before I got sick and they will continue to be because that is what kids do.....

[PhilB]

I couldn't agree more with the other posters.  You have good periods and you have bad periods.  The important thing is not to let the bad times get you down and have faith that the good ones will come back.

I've been having a bad patch myself and didn't manage to do my full 3 days in the office for about 10 weeks as I was always too rough on at least one of the days (unfortunately I have a 2 hour commute each way which makes going in after a bad night pretty difficult).  I've been finding it hard to believe that I will ever have the energy again to come back from an office day and play with the kids or work in the garden, but now that the lighter evenings are coming back the clouds are starting to lift.  I even amazed myself the other day be managing to jog about 2 miles whilst teaching my 7 year old to cycle.

Hang in there

Phil

[HeatherZ]

What everyone else said - don't look at it as going backwards but more like a cycle.  I've been on this treadmill for a year now and can definitly say it is a cycle.  I have a week or so of feeling pretty good, then the fatigue kicks in, as that lets up I may have a few days of bone or muscle pain then back to feeling good.  Just remember that when you hit the feeling good part of the cycle, enjoy it but don't overindulge; doing so often makes the fatigue worse.

[lala]

hi----i am on gleevec 400......and after having 5 years of good labs....I asked the doc to do it TREY'S way.....i now take 2 pills after lunch and 2 more after dinner and feel better---i used to take a 400 at bed time and i would have a bad stomach during the night and deep fatigue in the mornings----it is getting better----thank you, TREY!!!

[PhilB]

HeatherZ posted "I've been on this treadmill for a year now and can definitly say it is a cycle."

I think you may need to change gyms

[Beanie]

Lala, I also take Gleevec 400 and have done so for a year.  Does it really help a lot by splitting it up?  Also, why do you take two pills each time, why not just split the 400 in half?  My side effects are not that bad, just really tired is all.  Does it help with the fatigue by splitting it?

[knoppl]

I started splitting my Gleevec up about 2 months ago and I have noticed a difference overall. This week I am so tired and am so glad that it is friday. It has been a tough week with sick kids,working extra but I am thrilled that for once I did not get what the kids brought home!!!  I find the side effect cycle as well and there are days that I feel "normal" but then the cycle shifts and I am back to being tired and achy. I find that when I am tired I am grouchy with the kids too, I thought this was just me but am glad others have mentioned it too. I think I get so tired in the evening and can't wait for peace, quiet and sleep.

[lala]

hi----i do feel better---it has only been 2 weeks..........it was TREY's idea----there are NOT gleevec 200's so you have to take 2 100 pills after lunch and the same after dinner---do not split your pills!  i don't have the burning in my stomach which caused a lot of sleep disturbance........i don't have the deep fatigue that i had every morning.....i am optimistic!  but remember, i have had to totally change my life---- i went from teaching full time to 3 hours a day-----i do have a very active program so i never sit at a desk----but i am unable to do more than a few classes a day.......and then i come home and rest until the next day!!!  i sure have my fingers crossed---if i could just feel a little better i would be thrilled!!!!!

[lala]

i forgot something!!!  GO KU!!!!!!  MY SON IS A SOPHOMORE THERE----we sure hope they win the whole thing!!!!!!!!!!!!!!!!!!!!!!!!!!    ooooppppsss.... not cancer related! :-) rock chalk jay hawk go KU!

[knoppl]

Hi Lala, I am curious why you mentioned  not to split your pills. They are scored so I assumed you could split them if needed.