9 replies to this topic

[janner25]

So I called the dr. office where I had the 2nd opinion and got my PCR results....0.00000000000%.  So PCRU, right?  Which is wonderful - especially since that would have been just over 3 months since diagnosis.  So...why is my brain questioning everything again?????  I'm back to questioning my diagnosis (even though I know I have it) and back to questioning why I'm so tired and getting mad because if I am PCRU, then why don't I feel 'normal'?????

Oh - and my monthly CBC came in today...all counts are great...wbc 6.1, platelets 290, hemaglobin 12.2....I asked the nurse about how I'm feeling and she said she really hasn't heard of the cyclical thing as far as exhaustion - but maybe I overdid it or I'm getting a virus!!!!!  Then I got more upset because I'm almost 37 and I overdid it by spending last Saturday at a school competition with my son (I was sitting the entire time) and then last Sunday hung out with my close friend and her family (again - sitting down).  So how can THAT overdo things???

I know I should be absolutely thrilled - and I apologize for ranting - just want to get back to what I thought my new normal was...and kind of sad that doing things outside my home take a toll on me for a WEEK???

Thanks for listening .

[Trey]

You are obviously doing well, so good news.  I would just suggest that you double check that it was a PCR and not a FISH.

Fatigue is a tough issue to pin down.  The TKI drugs obviously contribute to fatigue through a not-very-well understood process.

[janner25]

Thanks Trey - I don't have the labs in front of me...but was told BCR ABL quantitative by PCR...I think I probably embellished the zeros...she just said it showed nothing - 0.000.

I go for BMB on April 29th...so I imagine they'll do whatever they normally do at that point (of course they haven't done everything normally so I don't know for sure).  Wish I were more literate...I'm excited to know what good numbers are for my blood .   At the appointment in April, I am going to ask what type of testing he plans on doing (PCR, FISH, etc).

Thanks!

[Trey]

If you are responding that well, then the BMB is likely not necessary.

[lala]

hi----boy, have you come to the right spot!!!!  the fatigue is real and the docs don't really get it, if you ask me!  last summer, my doc told me i should be able to work full time---NO WAY!  i can only work a few hours a day ---when i saw him last month, i explained how fatigue is written about a lot on this site...thank god it is cuz that is what saved me!!!!  i had been leaving my doc feeling like something was wrong with me---come to find out, many suffer from extreme fatigue.  i do remember reading exactly what i was feeling:  to go out of the house for one easy errand----put her on the couch for a week!  that is what i was living.....and my new normal.  now, i work 3 hours a day, and sit at home the rest of the hours---it is all i can do-----sometimes, i do go out on sundays for a fun trip to target...wohoo!  some on this site are able to continue a normal life---i find that amazing to hear......i am lucky to have no depression---happy every day----but aches and fatigue every day too!  this has been my new normal for 5+ years.......it is a wonderful thing to have this site and to know that others truly know how it feels to have cml.......my extended family still thinks i should host the holidays.....they do NOT get it and that is super duper hard on me.....that is another subject!!!! (i am 54-mother of 3 kids:  26, 23, 20 and gramma to one!!! :-)...best job ever!!!!!  hang in there and know that the extreme fatigue will lessen at times......

~lala

[janner25]

I agree Lala - if I hadn't found this board...I would be so discouraged!  I do wonder since I reached PCRU so quickly if maybe we can cut the tasigna back a bit?  I'm sure not...but worth asking!!!!  I'm hoping that the 'down cycle' of fatigue will get less and less...I signed BOTH boys up for baseball (baseball for 8 year old and then t-ball for 4 year old) when I was feeling pretty decent...how could I tell them no - they want to play!  Now I just want to cry!  I know my hubby is doubly upset (first because he wouldn't be able to watch them - their practices / games are during the week and he works 2nd shift during the week but now with my exhaustion back - he can't even help me).  Practice starts next week!!!  But hopefully this weekend will prove to be the rest I need (although Sunday is a little crazy)...tomorrow I'll rest hopefully most of the day to get back on track!

It's ashame that life is going to put me into tail spins of exhaustion - but I'll take that over the alternative .

[CallMeLucky]

Not sure what your dosage is but if you are on 400mg, and you zipped along that fast, then perhaps you can get Dr to try 300mg and see how it goes.  Tasigna is often prescribed in 300mg and 400mg depending on the patient and the situation so you wouldn't be going way off the reserve.  If you responded so quickly, it may be that you are very sensitive to it, in which case the side effects may be more extreme too.  I would get all the tests confirmed and keep pushing on the Dr about the fatigue.  They like to pretend the fatigue doesn't exist, they all know it does.  Sometimes I think they are trying to use the Jedi mind trick on me when I tell them I have fatigue.

http://www.youtube.c...h?v=CnjaUoR15dU

[Tedsey]

I am sorry you struggle so much with exhaustion.  If a CML dx is not exhausting enough AND having an 8 and 4 yr. old.  It is hard to deal with such a big and sudden change in your life and your lifestyle.  Congrats on the PCRU.  That is a dream for many of us still (but an MMR would be very nice too).  I am happy to hear about your quick healing.  May it continue.  Hope you start to feel better soon.

Teds 

[sferrazza]

LaLa,

I feel the same way about the doctors not believing the fatigue.  I actually switched onc's and now the new one seems to think I have depression or that I need a sleep study! UGH I'm not depressed and I sleep like a rock every night.  I love knowing that other people are fatigued as well and that I'm not crazy!  I started a long term teaching position in a special education class recently and now I'm not functioning very well.  I get up, go to work, come home sleep for an hour or two, fix dinner, talk to kids and back in bed at 8 or 9.  It sucks, I don't have the energy to work out and I know how important it is.  My oldest daughter told me I'm mean all the time and I' m probably nice to the kids at school.  She's right, I come home and I'm such a bitch.  I applied for disability but was denied, hoping that I can appeal and maybe get something.  It's so hard working and taking care of a family, my health gets put on the back burner because theres not enough time or energy. 

blah blah blah thanks for listening.

Susan

[janner25]

Thank you so much everyone!!! 

Lucky - I'm on 300mg / 2x day...so hoping maybe they can move me down.  I think that is the standard 'entry level'...but I know at the 3 month visit, the doctor wasn't opposed to talking about decreasing if fatigue still bothered me at 6 months or switching meds.  But if the tasigna can work at a lower level, would rather try that first.  You also cracked me up with the Jedi talk!  Love it!

I think it is interesting that the blood counts show no reason for the fatigue.  But I guess the unknown is if the tasigna alone can cause the fatigue - but I'm going to blame it on that and stick with it!  I do think that last weekend may have been too much...and I may have to come to terms with the fact that my new normal may mean not being able to do everything I want to do.  Thinking back over the past few weeks, we really haven't done anything and if I did have a day that's busy, I was zonked.  But then I normally have a day to recoup.  Last weekend I didn't get the chance to so I'm sure that is it.  So tomorrow will be my day of rest (except for going to the sports store to buy my little boys their new baseball gear for the season ).  Crossing my fingers that I'll be back to the new me in the next few days.

Thanks again - I'm so glad I have all of you!  I really think I'd be going crazy without your support!!!!

Janice