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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLeukemiaTeam Member asked a question 💭
Austin, TX
September 19
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A MyLeukemiaTeam Member

Deloris, I'm sorry you also have this painful skin sensations but at the same time, I understand how you feel by being able to put a name to it. Makes us feel like we're not crazy! LOL - Apparently this is caused by neuropathy in the extremeties. Do you have that too? My hands and forearms hurt the most, and at night. Which disturbs my sleep and make me even more fatigued during the day. What helps me: warm showers, hot baths with epson salt and bath bombs (baking soda), Microwavable Therapy Mittens, and heated red-light mittens. *** Advocate for yourself and make sure to let your doctor know of this side effects before it gets too serious (nerve damage). They can prescribe medication (Gabatentin takes my spasms away and help me sleep) and they also sometimes reduce your TKI dose for a temporary period or even make you take a break from it completely. - The 100mg dose of Dasatinib is kicking my butt with much stronger side effects than when I was on 50mg and I have lost a lot of quality of life. I am hoping to be able to get a short break soon as I finally reached the MMR or MR3 goal after almost 2 years in my journey. - Stay strong!!

September 22 (edited)
A MyLeukemiaTeam Member

Good for you to find better medical help.

September 24
A MyLeukemiaTeam Member

Its my feet and ankles. They hurt so bad. I do heating pads . My doctor ignores my side effects . I am currently looking for a new insurance and doctor..

September 24
A MyLeukemiaTeam Member

Oh my gosh that's what Im feeling. I've never had crazy pain like this . And I didn't know it had a name. Thank you for sharing🧡

September 22
MyLeukemiaTeam

Can tyrosine kinase inhibitors (TKIs) cause allodynia or increased pain sensitivity?

TKIs are known to cause joint and bone pain as a side effect, and some people with leukemia do report heightened or unusual pain while on these medications. While allodynia (pain from stimuli that wouldn't normally cause pain) isn't always Show Full Answer

Can tyrosine kinase inhibitors (TKIs) cause allodynia or increased pain sensitivity?

TKIs are known to cause joint and bone pain as a side effect, and some people with leukemia do report heightened or unusual pain while on these medications. While allodynia (pain from stimuli that wouldn't normally cause pain) isn't always listed by name, nerve-related pain and sensitivity can occur.

TKIs can contribute to peripheral neuropathy, which involves nerve damage that can absolutely lead to increased pain sensitivity. Symptoms reported by MyLeukemiaTeam members include:

- Numbness and tingling in the feet and hands
- A sensation like "walking on rocks"
- Feeling like rubber bands are tied around the feet
- Severe joint and bone pain that comes and goes
- Lower back pain It's really important to let your oncologist know if pain sensitivity is increasing or changing. They can assess whether it's neuropathy-related and adjust your care plan. Options like medications, physical therapy, or a TENS unit may help manage symptoms.

Don't tough it out alone — your care team needs to know what's going on to help effectively.

September 19

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