7 replies to this topic

[jbinsd]

Hi all,

I am new to the CML club (diagnosed on 4/2/2013 - stage 1).  I've been on Sprycel for two weeks now, hydroxyurea for three weeks, and allopurinol for three weeks.  I just got word that we're dropping the hyroxyurea from the mix which I'm happy about.

Over this last weekend, I've found that I'm noticeably more tired than usual.  Wondering whether anyone in this group had a similar result in the first month.  I just spoke with my doctor and he said that there are several things at this point that could be causing it from the Sprycel to the hydroxyurea to the body just dealing with the disease to the anxiety of having this diagnosis.  And that once we get my counts into the right area, we will be able to better sort out some of these other related issues.  That all makes perfect sense, but I'm just curious whether other folks with similar diagnoses and treatments had similar bouts of fatigue a few weeks in?

Any info is great.

Thanks,

Joel

[Galapago5]

Hi Joel,

Sorry to hear you got put on this boat too, but you wont find a better community of folks looking to help than those here.

I had a similar experience when I was first diagnosed.  I wasn't on the hydroxyurea for quite as long (about 1 week for me), but when dealing with the emotional distress of the diagnosis along with the new medications (for me it was Gleevec), I definitely had bouts of fatigue.  The CML medications all seem to have that as a pretty common side effect.

I'm not sure how high your WBC count was when you were first diagnosed, but I was at around 340k, so I was already experiencing some fatigue just from the disease.  I would say that it's pretty normal, but keep an eye on it and as time goes on you may discover things (foods/techniques/habits) that can help combat the fatigue.

It has improved for me over time and I'm sure it will do the same for you

[jbinsd]

Whoa - 340.  That makes my 125 seem like kids play.   I was experiencing some fatigue before the diagnosis (that I just chalked up to having a toddler running around the house), but I was feeling like my energy was coming back but then this weekend, I started having trouble sleeping (felt like my heart was pounding) and just got more tired) despite getting good news on Friday that the initial response to the medication was good.  It's all really confusing.

Good to know that it improved over time.

Thank you, Galapago5, for the quick response.

-jb

[CallMeLucky]

Your Dr response was very appropriate, you have a lot of things going on right now and that is going to slam you in the beginning, just the stress alone of the diagnosis.  Ultimately the treatment does tend to have fatigue as a side effect but over time it is likely you will get used to it and it will not severely impact your regular daily life.

[hannibellemo]

Welcome!

I had some similar responses to Sprycel. It wasn't the easiest drug to get acclimated to and for me it took about 6 months. Give it some time, all of these drugs come with their side effects and they effect most of us in different ways. Right now every strange feeling in your body is like an electric shock reminding you that things have changed. As time goes on you will think about CML less and less.

Be sure and stop in here with your questions and concerns. There are some very knowledgeable and supportive people on this board.

Good luck!

Pat

[Ebby13]

Welcome Joel!

I was diagnosed just over 2 years ago and fatigue is my biggest enemy.  I think sometimes just trying to figure out the how and why all of this has happened is enough to wear out anyone, let alone all of the medication and side effects.  I had the same drug combination you have now when I was first diagnosed and I was wiped out!!  Since then I've been on all drug therapies available and am currently on Tasigna. Each one takes time for the body to adjust.  I have found that one of the most frustrating things with CML is the wait and see..........on the drugs off the drugs, etc.....  It's tough, but it will get better!!  And when your tired, your tired!  Be sure to rest.  It's important to keep going, but it's important to rest as well.

Best of Luck!!!

[jbinsd]

Thank you for the warm welcome, everyone.  I can't tell you how nice it is to have folks around who get it.

Oddly enough I was also diagnosed with testicular cancer 8 years ago. Caught it early and only needed surgery. My wife was diagnosed with lymphoma 8 years too. She went through chemo and made it through ok. We're both well under 40.  Anyway, I just say all that because this is whole new mental challenge for me especially as I have a toddler and another on the way. I imagine it will get easier, but, wow, is it anxiety producing.

- jb