7 replies to this topic

[gbarrett]

Hello,

 

I've been on Tasigna 150mg 2X/ day since August 2011. I have a few side effects here and there but the one that has remained constant has been severe headaches (5-6 times a week) which I have learned to live with. Now in the last 3 months I am experiencing joint pain, mostly in my shoulders, elbows and wrists (sometimes hips, low back and knees) both sides equally. I've been test for my magnesium level (normal), Lupus (negative) and Lyme (negative). Is it possible that the pain is from the Tasigna? Neither my GP or Onc have answers for me and I'm totally FRUSTRATED! I'm a 50 year old daily exerciser, walking, biking, swimming but the activities are painful and slowing me down. There are mornings that I need to use two hands to lift my coffee mug for fear of dropping it!

 

On another note: A close family member has recently told me that this thing I have.... "that CML" .... is nothing compared to what other people are dealing with. What's a good comeback for that.... or is there one? I know I'm lucky to have Tasigna but it still comes at a cost.... financial, physical and emotional! It's comments like that that make me feel like I have no right to complain

[gerry]

I found people were interested in it at first, though I think a lot were checking that they didn't have any symptoms, but after awhile it is only close family and friends that really get it. Side effects from the Gleevec were a bit like chemo, apart from killing all the good cells. So I would explain to people it was like taking a low dose of chemo everyday for the rest of my life, then list out the side effects and all the drugs I took to counteract them. Made me feel better. :-)

[Buzzm1]

gbarrett, you didn't mention your PCR status, or the reason for what would be considered a lower Tasigna dosage.  If you have been undetectable for a period of time, perhaps you could reduce your dosage to 225mg by cutting one of the 150mg tablets in half to see if that begins to make a difference.  Side-effects from our TKIs aren't on a time schedule and can occur at any time, even on a lowered dosage.  

[gbarrett]

Thanks Gerry for that support, it's greatly appreciated.

Buzz... PCR is .01 and I've been in MMR for 4 years, YAY me! I'll ask my Onc what he thinks about one pill a day though I have a feeling he won't like that but ...... My body, my rules

[beno]

As far as what to say to people who say we are lucky that we "only" have CML, Surfdaisy said it best in another topic.  "It's true that we didn't get the death penalty, only life in prison"  That would be my comeback for your family member.

[tiredblood]

On another note: A close family member has recently told me that this thing I have.... "that CML" .... is nothing compared to what other people are dealing with. What's a good comeback for that.... or is there one? I know I'm lucky to have Tasigna but it still comes at a cost.... financial, physical and emotional! It's comments like that that make me feel like I have no right to complain

 

My thoughts are to slide out the cardboard thingy the Tasigna comes in and say, "Here, you take this for a month and get back to me." I felt horrible on it for about the first three weeks, and of course, periodically ever since then. How would this family member know if he/she has not walked in either your or other people's shoes? Honestly, I've wanted to say this to my first hem/onc. Thankfully, my current hem/onc is aware of the side effects.

[tiredblood]

Hello,

 

I've been on Tasigna 150mg 2X/ day since August 2011. I have a few side effects here and there but the one that has remained constant has been severe headaches (5-6 times a week) which I have learned to live with. Now in the last 3 months I am experiencing joint pain, mostly in my shoulders, elbows and wrists (sometimes hips, low back and knees) both sides equally. I've been test for my magnesium level (normal), Lupus (negative) and Lyme (negative). Is it possible that the pain is from the Tasigna? Neither my GP or Onc have answers for me and I'm totally FRUSTRATED! I'm a 50 year old daily exerciser, walking, biking, swimming but the activities are painful and slowing me down. There are mornings that I need to use two hands to lift my coffee mug for fear of dropping it!

 

On another note: A close family member has recently told me that this thing I have.... "that CML" .... is nothing compared to what other people are dealing with. What's a good comeback for that.... or is there one? I know I'm lucky to have Tasigna but it still comes at a cost.... financial, physical and emotional! It's comments like that that make me feel like I have no right to complain

Were you on the full dose prior to taking Tasigna 150mg 2X/day? I ask because I restarted it back in January, but at 1/2 the dose, and now, six months later, it feels much like TKI withdrawal syndrome all over again. The HA's seem like they're vascular in nature.

[winespritzer]

Hi,
Recently had bilateral joint pain in whole body for a few weeks. Was tested for lupus and rheumatoid arthritis. Negative.
Dr. Internist thinks it was either a virus or the Sprycel.
However some salve with beeswax, peppermint and pot helped tremendously!
Just happy the pain is gone.
Winespritzer