3 replies to this topic

[LLawrence]

Hi all,

I'm seeing that there are a fair number of newly diagnosed CMLers on the board.  I'm writing for the newbies.  I was diagnosed in August 2012 and it has taken me 15 mos to feel like a human being on therapy.  I am fortunate in that a) my meds work on the CML and no life threatening side effects.  Unfortunately, I've had many of the pain in the tail side effects.  My most problematic effects have been marked fatigue and tendon/joint pain.  For the fatigue, I've changed meds and reduced dosages.  The reduced dosage Tasigna has helped both the pain and fatigue.  I have found that instead of working 60+ hour weeks I have to work 40.  Reducing my work hours was a tough call but it has helped immensely.  Never in my life have I required this much sleep (9 hours at night with a 1 hour nap after work), but this is what it takes, now.  The better I eat, the better I feel (less processed, lots of fruits/veg and whole grains).  Daily exercise in a hot tub twice a day helps with the pain.  Doing all these things has helped me finally feel human for two full weeks now.

For the newly diagnosed folks on the board, my point is that finding what works for you is trial and error.  Your treatment team can help you with med adjustments but the non  medical part is just as important for your sense of well being.  Some benefit from heavy gym work outs whereas others of us find that wipes us out for the day.  What works for one person may be awful for another.  Just keep trying strategies, see what helps and build from there.  It does get better, but it takes time and work to find a tolerable new normal. 

Leesa

[IGotCML]

Leesa,

Congratulations on your quality of life improvements!  Very good to hear.  I was diagnosed almost a year ago and have been on Tasigna since January.  Fatigue and a reduction in my overall energy level have been issues for me.  What has been positive is that my energy level has been gradually increasing, even though I am still not back to my regular exercise routine I had before CML.  I can also attest that my overall quality of life has been getting better and it also does take time, which is best measured in months, not weeks.

What was your thought process on reducing the Tasigna dosage?  Were you really pushing this idea or was it your MD?  Did you get PCRU before you reduced dosage?  I am taking 300mg twice a day and have had positive results with no major side effects.  Current PCR is .121%.  I won't even consider reducing dosage as an option unless I do get PCRU.

[LLawrence]

I reduced my dosage of Tasigna from 300 twice a day to 150 twice a day in September because something had to give.  I was so tired I could barely function and the tendon pain was wicked.  It sounds whiney "I'm tired.....I hurt" but it was getting progressively worse and I was not feeling like I could do this for the rest of my life. The only things that got me full relief were a 5 day drug holiday  (obviously not a long term strategy) and later a round of prednisone (also not a long term option).  My Doctor first suggested trying a different TKI, but when I asked if there were other options, she talked about dose reduction.  I had burned through Gleevec with pain and fatigue (after a 2-3 month honeymoon period) then the same happened with Tasigna (same honeymoon period followed by fatigue/pain). I am afraid that these side effects are a class effect for me and I didn't want to burn through all my drug options.  I go back for a repeat PCR in 2 weeks.  If it's good, all is well.  If it shows an upwards trend we will have to talk about changing things.

Leesa

[0vercast]

Good to hear. I have also found that a proper, well-balanced diet is immensely helpful in improving my quality of life. Dark green, leafy vegetables, in particular, almost-daily spinach salads, seem to offer the best results. Drinking lots of water seems to help as well, especially when consumed right away in the morning. I take my pill before bed and sometimes wake up feeling not-so-good. The extra water seems to make a big difference, likely by diluting the medicine in my bloodstream. Every morning I chug 30-40 oz. of room-temperature water, and drink another 30-40 oz. the rest of the day.