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Peripheral Neuropathy on Tasigna

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I have been on low dose (150 mg/day) Tasigna for over 3 years.  I attempted TFR this past summer, but had to restart low dose Tasigna after just 75 days.

For about 2 years, i have experienced intermittent tingling/pins & needles sensations in my lower legs and feet, but never were they painful until this past week.  I have had deep sharp and intense pain in my big right toe, on the top of my right foot and have had more constant tingling than in the past, even some in my hands. While I haven't been diagnosed with peripheral neuropathy, these symptoms are pretty classic so I'm pretty certain this is what I have.  The Tasigna circular says 1 - 10% experience this on regular dose (600 mg/day), but I am on only 25% of this.

Has anyone else experienced this and if so, what if anything did you do to treat it or otherwise mitigate it?

Yep I have tingling/pins/needles and numbness in the 3 tips of my fingers on my right hand for over 2 years. Not sure if it comes and goes or if i just forget about it. Needless to say every odd sensation that I do have is defo TKI related as I never experienced anything until starting meds. I am in MMR 0.077 November just gone and on 600mg. I can’t wait to one day if permitting to reduce dose not stop. Currently have no interest in that but a dosage adjustment is very welcome one day.

All the best mate

Al

Thanks  AL - I think we all blame everything on our TKI - a convenient whipping post.  Dose reduction made a huge difference to me.  My onc allowed me (after much heated discussion) to make my first dose reduction from 600 - 450 MG/day about 3 months after I reached MMR and then maintained it.  I noticed the difference even with this small reduction.  And until this past week, most side effects were either gone or significantly reduced now that I am on 150 mg/day.  If your onc pushes back, tell him dose reductions are OK if they are aimed at reducing side effects - this gives him some degree of liability cover.  He might want to test you more frequently for a while, but it's worth it.

cmljax, I ended up with peripheral artery disease .. greatly reduced circulation in my legs, less in the calves, even less in the feet  .. all of the symptoms you mentioned and more.  I attribute it to too much TKI for too long.

you have demonstrated the ability to lower your dosage ... trying 100mg, or lower if possible, wouldn't be a bad idea.

I haven't seen your current history with respect to timing.  I'm aware of your TFR attempt and restart.

Buzz

 

Hi,

I sympathise with you as a fellow sufferer.

Often referred to as non- diabetic peripheral neuropathy or otherwise chemo- induced peripheral neuropathy (CIPN) it seems to apply to other tkis apart from nilotinib; I have been told that this is a condition that I have as a result of long term use of imatinib.I have consulted with a neurologist and have had nerve conduction tests on my leg muscles etc etc and basically there is no treatment available;discontinuing the tki would help but that as we know is not possible for most of us.I have little reflex left in my knees for instance and the feet feel as if they are in a cast.Like all forms of neuropathy keeping the feet, toes and nails in good condition is fairly important;one of my big toes is very sensitive on occasions.

Basically the peripheral nerves have been damaged. Motor nerves control muscle movement and sensory nerves the senses - as you describe symptoms are numbness,tingling, burning and stabbing.Cramping and muscle shrinkage is common as well. Eventually if the condition progresses there is lack of co ordination and falling.Where autonomic nerves are affected it can lead to heat intolerance and changes in digestion and bowel movements and leads to blood pressure problems and dizziness.

I have tried a TENS stimulator that I bought on Amazon that gives an electrical pulse massage to the feet and the lower leg muscles plus a foot bath massager-it gives some relief.Some studies have suggested that vitamin E, calcium and magnesium helps plus other supplements and an anti inflammatory diet as well.Some suggest wearing comfortable woolen socks when sleeping but I have found not proven.

If the condition worsens life might not be so comfortable;in the meantime exercise,strengthening,stretching,balance work and lots of walking keep me going. Physio in more severe cases can help to rectify imbalance in walking and link better messaging from the brain through the spinal cord to the damaged nerves.I have invested in several pairs of some very comfortable ASICS trainers that seem to help balance.I have come off a statin as that can exacerbate the condition I suspect.

Regards

John

Hi,

Interesting timing on this post. I've been on Tasigna for 10+ years now and 4 weeks ago I started to have some tingling/sharp pain in my left hand fingertips. My family doctor thought it was a restriction on my nerve in my wrist but this makes me think otherwise. My tasigna does is low too; been on 150mg once per day for 6 months now - but that's a different story...

 

 

Thanks Buzz.  Re: timing, I was diagnosed in Sep 2016 and started on 600 mg Tasigna per day.  Hot MMR in 80 days and MR 4.5 in 6 months whereupon I did a succession of dose reductions down to my current level of 150 mg/day.  During TFR, PCR went quickly from negative to .02% so I restarted and last PCR was back down to .004%

John:

Thanks for the detailed response albeit not very encouraging.  Last summer I strained my left calf muscle playing golf and now some 6 months later it has not fully healed.  I saw my sports medicine doc 2 weeks ago and he has reordered an MRI (1st one done in SEP 2020) and EMG (nerve conduction study and needle EMG).  At that time, I did not have the neuropathy symptoms that just developed over the past week, so maybe these tests will confirm it one way or the other (not that I need anymore evidence that this is peripheral neuropathy).

I wonder if switching to Sprycel could make a difference.  I see some reports that Sprycel can also cause peripheral neuropathy.  I would appreciate others chiming in on this is they know - are you out there Scuba?

I do 30 minute per day of cardio - combination of stationary bike and treadmill, so the exercise is already there.

cmljax, after regaining and confirming undetectable, you have a good chance to gradually reduce your Tasigna to as low as 50mg/day.  The less TKI we take over the longterm the better off we are likely to be.  The best solution to side-effects is almost always to reduce your dosage

Please update your CML history.  

https://communityview.lls.org/users/cmljax

Thanks,
Buzz

cdw5000, wondering why you were on Tasigna for ten years and only recently reduced to 150mg/day?  Be interested in learning from your CML history.  

Hi,

Fair question, so here's the full story. Dx in Oct 2010 and straight onto Tasigna 600mg per day. It took me ~3 years to get to a stable MMR and my numbers reduced satisfactorily down to MMR 4+ around 2015. In early 2017 my doctor agreed to chop the dose in half, so went to 1x150mg twice per day. Numbers continued to be stable and even trended downward a little more.

I'm aware of the Stop trial, but for me I don't think TFR is realistic. Anyways, I approached my new oncologist about dropping my dose even further last July and am pleased that on 1x 150mg per day my numbers are still good. There was a slight blip upward but I'm now down to undetectable again.

I'll leave it a little while and then think about a smaller dose still.

Hope that explains the journey a little :-)

Chris

Buzz:

My oncologist won't permit any dose lower than 150 mg/day.  I do think I finally convinced him to let me switch to 20 mg/day Sprycel, so I'm contemplating that now.

I am not a veteran like some here with Sprycel but I have been on an aggressive dose reduction path since reaching MMR.

I have taken Sprycel for a little over a year now. I started at 100mg for 6 months then 80, 50, now 40. I have experienced numerous side effects at all levels, some improving slightly with decreased dose. My main issues at 40 are fatigue in knees and elbows, Heart Palpitations, High Blood Pressure, and Peripheral Neuropathy. The Neuropathy is mostly in my arms and legs, I get a hot/cold feeling in the back of my arms and the top of my legs. I also have a significant amount of twitching in my muscles. I take all Scuba recommended vitamins to combat some of these. I believe that I am an anomaly though. I experienced Neuropathy and chest pain with Imatinib. The Neuropathy is identical between the two, so it could be me.

In saying all of that, I think that everyone is different. I wouldn't consider my situation common but it does mean it is possible to have the same with a different drug. My BCR-ABL is .005 as of November.

ShawnJ

Shawn - I think we all react to these TKI's differently.  There are some common side effects that many of us experience, but then there are the less common and even rare ones.  Here are the rare ones that I know Tasigna caused:

1. over 50 skin cancers in first 5 months of treatment - none since my first 25% dose reduction

2. Severely swollen salivary glands and dry mouth.  Virtually gone since 2nd 25% dose reduction

3. Daily ectopic heart beats - better since 3rd dose reduction

If I switch to Sprycel, I know neuropathy may still occur and I know there's always the pleural effusion risk, but at this point I'm willing to try and find out.

Sorry for your side effects - perhaps 20 mg is in your near term future or perhaps low dose Tasigna would be kinder to you than it has been to me.  Good luck

I have felt that sharp pain in my big toe now that I think of it.  It does not las long and has happened about 3-4 times in the last 20 months.  I also attribute it to Tasigna (600mg) but do not really worry about it.  I think if anything were persistent I would dig deeper and research.  

My oncologist is going to let me switch to 20 mg Sprycel.  Here's hoping that that this resolves the neuropathy without causing any new side effect, e.g. pleural effusions - time will tell.  Thanks for everyone's input on this