18 replies to this topic

[rcase13]

15 months on Tasigna with the regular side effects. A new one has developed lately that is odd. Having weird pains around my ankles that feels like bruising but there are no signs of bruising. I see my OnC in a couple days but I am concerned now and losing sleep over it from worrying about it. I never know what is a side effect of CML and what is something else. I don't have any obvious swelling that I can detect. It seems to feel better when I take my socks off. Is this freaky or what?

Hope everyone had a good holiday. My 13 year old seems to be happy and that is not easy with a teenager.

[Trey]

I have had pain just below the lateral malleolus (outside ankle bone) of my right foot for quite a while.  Seems to be a deep tendon.

[rcase13]

Mine pain is weird it feels like the feet and ankles are painfully swollen but they don't appear to be swollen.

[Harper3994]

On Tasigna since July and have had same symptoms on and off. Oncologist did not seem concerned. Right now thigh muscle down to my knee very tender. If your doc does not have a lot of patients on this med. They do not hear about all the different side effects. When I told her about my head itching she looked at me "like oh really". Very frustrating. I am very tried of having to see her every month too. She tells me that is their protocol.

[Trey]

Tendons and ligaments can injure more easily and take longer to heal.  Muscles can have pain that lasts for quite a while.  Both types of pain appear to be related to mineral imbalances caused by the TKI drugs.  Increased intake of minerals may be helpful to some degree but is probably not going to eliminate all such pain.  Over time the body seems to adapt, but some residual issues will remain.

[tiredblood]

I was on Tasigna for 22 months. My legs swelled from the knees down, and the skin was very tender to touch.  Now that I'm off the med, I still have swelling, but the tender skin has resolved.  IIRC, the tenderness got a little better before I stopped the TKI.

[IGotCML]

15 months on Tasigna with the regular side effects. A new one has developed lately that is odd. Having weird pains around my ankles that feels like bruising but there are no signs of bruising. I see my OnC in a couple days but I am concerned now and losing sleep over it from worrying about it. I never know what is a side effect of CML and what is something else. I don't have any obvious swelling that I can detect. It seems to feel better when I take my socks off. Is this freaky or what?

Hope everyone had a good holiday. My 13 year old seems to be happy and that is not easy with a teenager.

I have similar "ghost pains" in my shins. My shins occasionally feel like they have been bruised, similar to the feeling of shin bruises I got from playing football as a youth. However, there is no sign of bruising. This happens 2 or 3 times a month and as I have been on Tasigna for 3 years, I am used to this. It would actually surprise me if I did see any bruising.

[jmoorhou]

I have this now too, but it is not serious.  I've been swimming and that seems to help.  I had this very bad when I was taking diuretics.  Diuretics are known for flushing minerals out of the body.

 

I had to stop them and it got better for a long time.

 

I also started having smoothies every day with at least one banana, all cramps went away, which shows as Trey said minerals like potassium are affected.

[Terran]

Tendons and ligaments can injure more easily and take longer to heal. Muscles can have pain that lasts for quite a while. Both types of pain appear to be related to mineral imbalances caused by the TKI drugs. Increased intake of minerals may be helpful to some degree but is probably not going to eliminate all such pain. Over time the body seems to adapt, but some residual issues will remain.

This must be why I sprained my ankle for the first time in my 45 years this summer and then again last month.

[Lucas]

Hey, rcase, i'm having the same problems now. Can barely walk. What you did to get better? Cheers.

[rcase13]

Hey, rcase, i'm having the same problems now. Can barely walk. What you did to get better? Cheers.

It just resolved itself I guess. Honestly I have so many weird things I have learned to just ignore them. Just our wonderful lives on TKI.

[Buzzm1]

Hey, rcase, i'm having the same problems now. Can barely walk. What you did to get better? Cheers.

Lucas, I don't know your CML history/TKI dosage but your symptoms could easily be a sign of too much TKI in your system.  TKIs are toxic drugs and it is all too easy to overwhelm our body's ability to contend with this toxicity even if we are on a reduced TKI dosage.  

 

Known Side-effects

Gleevec Imatinib http://bit.ly/1SWEl7W
Tasigna Nilotinib http://bit.ly/1RNVh1i
Sprycel Dasatinib http://bit.ly/1Klbqn3
Bosulif Bosutinib http://bit.ly/1OXC7DL
Iclusig Ponatinib http://bit.ly/1nbKWzI

[Lucas]

Thanks, guys. I was on a trip and fell and hurt my back and arms. I was on ketoprofen for 7 days. Maybe there's some interaction between those drugs. I was dx with cml in 2013. Spent 9 months on gleevec, had a change to nilotonib 800mg due lack of response and now i'm pcru - two tests in a rolê from different Labs. Cheers

[Buzzm1]

Thanks, guys. I was on a trip and fell and hurt my back and arms. I was on ketoprofen for 7 days. Maybe there's some interaction between those drugs. I was dx with cml in 2013. Spent 9 months on gleevec, had a change to nilotonib 800mg due lack of response and now i'm pcru - two tests in a rolê from different Labs. Cheers

Lucas you might want to add your history into your Signature ... Nilotinib 800mg is a very heavy dose and you should consider beginning to gradually lower your dose lest you suffer even more symptoms of too much TKI in your system, especially since you are already PCRU and have been for roughly six months.  While it is true that younger patients can more easily tolerate the toxicity of TKIs, better than those of us who are older, there is still the likelihood of a longterm price to be paid for having an unnecessary level of TKI in your body.  

[Lucas]

Thanks for the reply, buzz. I live in brazil and the dose for resistants is 800mg. I started to talk to my doctors about a reduction to 600mg and they told me to wait 2 more years. I had a response on nilotonib. Achived mmr in 3 months and had a 4 log response at 6 month's result have few side effects.

[gerry]

Gleevec caused me a few issues with muscles and tendons, worst was when some GPs would just say to me you're getting older. Apparently in late 40s was all downhill. After suffering months of pain I found a good acupuncturist who helped with one lot of unexplained swelling in my foot and returned the feeling to three toes in the other foot on another occasion. I even started to get major clicking in the top of my neck. Xray said a bit of deteriation and specialist told me I was getting older. This had started around the time I was stopping the Gleevec. After a couple of months it disappeared, still think it was Gleevec related.

[tiredblood]

IMO, what I think is tendon and/or ligament pain is different from the aches and pains of getting older. Seems like the shoulders are the place where the pain recurs most often. Also, at times, it has felt like the arches in my feet are drawing up.

[Red Cross Kirk]

Also, at times, it has felt like the arches in my feet are drawing up.

 

That's a very good description of what it feels like when I get a Gleevec foot cramp!

[beno]

I have had pretty regular foot pain since my diagnosis.  It's not unbearable.  My onc first said it was probably bruising due to low platelet count, but the pain has persisted even though platelet counts are better.