11 replies to this topic

[JoshLee]

Hi All,

     Hope you are well. I am about 6 months into CML and taking Tasigna. I have never really had any: joint, bone, or muscle pain in my legs until recently. In one knee, then the other. In one foot then the other, in one quad then gone.... Is it weird that this just sort of popped up within the last week or so? If I am laying down it tends to be a little worse than if I am actually moving sometimes. Will it go away? Feeling fine otherwise.  Hope everyone is having a great Wednesday. -Josh

[jenz]

Josh I have your very same question.  I am 27 and have been moving around like an old lady due to Tasigna.  I have been on Tasigna for just over 2 months.  In the beginning my stamina and fatigue were terrible then once I started exercising it got better and stayed away.  But for the last 2-3 weeks it is back and full force.  I have a throbbing like pain in my legs, all the way from my ankles up to my hips and it has been consistant for almost two weeks.  Then I have the stiffness and muscle aches on and off. Some days I do not think I can get out of bed, while other days I can't sit still.  Some days are so bad I have considered lowering my dose to see if it would help, currently I am on 2 X 200MG X 2 times a day, so 800MG total. 

[JoshLee]

Hey Jenz,

       Annoying right?!? Anyways, I just wanted to let you know that I am pretty sure 300mg twice daily is the newly accepted dosage for Tasigna. Maybe talk to your onc. about it? Cheers and hoping for a pain free day for you. -Josh

[jenz]

Josh, you are right 300MG is the newly dx dose.  But I was on Gleevec for 6 months before Tasigna and the recommended dose when switching TKI's is 400 MG twice a day.  Josh are you in your twenties too?  Where you from?

Jen

[Trey]

I also noticed increased tendon and/or ligament issues related to Gleevec depletion   of minerals such as calcium, potassium, magnesium, phosphorous, etc.  It seems to be related mostly to depletion of magnesium (very essential for ligament and tendon health) which also causes muscle cramps.  Here is  some info about this issue:

http://www.ncbi.nlm....pubmed/16687713

Here is some info about supplements for tendons & ligaments:

http://www.livestron...aments-tendons/

[janner25]

Hi all - I actually mentioned the cramping (although mine have been in my toes) at my last doctor appointment last week.  The doctor said it could be from lack of some minerals (potassium, magnesium, etc.) particularly with the heat.  He recommended eating a banana each day (which I do already) and then some of the electrolyte beverages like gatorade.  I'm on tasigna as well...I'm hoping this is a summer thing (although I'm hoping it goes away all together).  Stay hydrated and cool - Good luck!

[jenz]

I am considering starting to take a womens one-a-day daily vitamin.  I was curious if anyone else on Tasigna is taking a daily vitamin? What did your oncologist say about this?  I know NOT to take it around the same time as my Tasigna dose. I was advised to staggar them while on Gleevec.

[sdl722]

Jenz

I'm on Tasigna and I do take a multivitamin daily (or at least when I remember).  My onc and research nurse have no problems with it and I just make sure it doesn't have any weird herbal stuff in it.  They didn't mention any restriction on when I can take it in relation to taking my Tasigna but I usually take it a couple of hours after my morning dose.

Stephen

[JoshLee]

Definitely feeling better today. Legs hurt yesterday, but today hasn't been so bad. I am catching up on sleep, so I think that helps. Sleep is a big deal for us CML folks, I think......Back to practicing the tuba. I am learning a new concerto this month.....I'll keep ya'll posted on the progress...

[MDeRosia]

Hi Everyone ~

Just diagnosed with CML two weeks ago.  They are starting me on Tasigna.  Glad I found your postings - do not feel so alone now.  Medication should be in this weekend at the Pharmacy.  Ordered a case of Strength and Hope along with it. 

Blessings to all of you.......Stay strong.

[MDeRosia]

Just diagnosed  and they are starting me on Tasigna.  I take a One a Day Womans Vitamin and they (the Docs) now it....How are you doing?

[JoshLee]

Hi,

     Everyone's experience with TKI's are different. Truth be told, my experience thus far has been pretty good. It's been more of a battle mentally than physically. I am doing fine on Tasigna as far as the response is concerened. Some people are quick to remission, some are slow, but what matters is that the numbers are going down and not up. Side effects haven't been that bad, either. Hopefully this stuff will work great for you. Prayers. -Josh