Neuropathy associated with Tamoxifen

'I wonder if there is anyone out there who is also experiencing severe numbness and chronic pain in their feet and legs after taking Tamoxifen..."

Yes! Day 15 on it and getting these symptoms as you have already.

I tried Letrozole for 1 1/2 months and was very drug sensitive to it and had to stop because of side effects.

 Letrozole Aromatase Hormone Inhibitor was far too detrimental to my cardiopulmonary limitations amongst other extremely harsh side effects.

1. Extreme exhaustion

2. A-fibrillation

3 Nausea

4. Muscular-joint pain

5. Higher lipid count

6. Raised out of controlled range Blood Glucose A-1C levels previously balanced

7. Extremely wide ranging high to low BP swings. Diastolic plunged many times to under 50 causing dizziness just shy of unconsciousness

8. Angina frequency increased to daily and grew more intense in pain

9. BUN and Creatinine Levels now ranging high off normal.

Now trying Taxoxifen but this will not work out either apparently. Only on a 30 Day Trial.

Stopping tonight at Day 15.

~ Mabellean 

Surgery 1/12;/2024; 1/26/2024 DX 1/2024, Right, Intrusive Ductal and Lobular Carcinoma, Stage IA, Grade 2, ER+, PR+, HER2+, ISH

Treatment → * NEED: MRI Bi-annually along with 3D Mammography and Sonogram

June 1, MRI Results → * NO cancer reoccurrence

~ 1 Corinthians 16:13 Final Exhortations Watch, stand fast in the faith, be brave, be strong.

Same here, I took it only about 6 moths( in 2009 double mastectomy ) and threw it in the garbage as I didn't feel good taking it and to top it off I read the small print, NOT GOOD. As far as the numb feeling under my feet I first thought was because I did a lot of walking and standing, however now (2024) I finally realized it had to do with the Tamoxifen. My feet are hot especially at night and tingling and I have  it slightly in my fingers as well. I am not in pain thankfully but it is bloody annoying I feel bad for people who were scared into taking this garbage for more than 5 years and finished up with worse problems. I am a 83 years "young" male. 

Hi,

I’m also experiencing numbness in toes and bad muscle aching on tamoxifen. I was on tamoxifen for a year with very few side effects but changed brand mid January and mid February first experienced numbness in one toe which has now extended to a toe on my other foot.

I’m wondering if your numbness has improved / gone away since you stopped the tamoxifen?
I stopped taking it this week and am going to have a 6 week break. Hoping so much that it goes away and has been due to the different brand type.

Any advice? Thanks 

Daughter has had 14 cycles of kadcyla and her neuropathy has been probably the biggest problem. She finished 6 weekd ago and no sign of it easing yet. It is kept just about bearable with gabapentin but that brings its own issues, it's so addictive. She's hoping to start weaning herself off gabapentin soon - very slowly. Has a very bad reaction if she forgets a dose.

I think neuropathy is a big problem with many cancer drugs. I know, of course, that the treatment drugs are vital but don't think neuropathy is recognised enough or taken seriously enough by oncologists.

Thanks for your reply Cherry2. I had several friends who had been ok on tamoxifen and I’d not read the small print on the leaflet inside. I only started putting it together after a few weeks that my symptoms were coming from the tablets. Hoping the symptoms improve on my treatment break. 
Hope your daughter’s situation improves very soon. Best wishes to you both.

Hi there,  I had breast cancer twelve years ago.  I had tamoxifen for 2 years and then letrazole for three years.  I still get neuropathy in my feet.  Sometimes I am fine and sometimes my feet are so sore it is hard to walk.

Lee

Interested in this, I had a recurrence after Letrozole for 3 years and Tamoxifen for 2, now faced with probable 5 years of Exemestane. I was getting aches, stiffness and cramps in feet and ankles, it was easing quite a bit in the year of freedom I had till the beast sneaked behind my implant and a teeny lump began in my scar. Had the whole lot removed and 3 weeks of radiotherapy followed by Abemaciclib and Exemestane as it’s 8/8 oestrogen led. 

yes, foot and ankle pain has returned with a vengeance, I’m wondering now if it’s time to have a careful talk with Onco on next appointment. I wonder if there’s an alternative.

hugs xxx

Hi Moomy yes I am now on Exemastane and Ribociclib and the neuropathy has got worse since, didnt put it together until now.

Lee x

I added 2+2 when the Exemestane seemed to make it all worse again. I began them both last October. The foot cramp can have a tendency to wake me a couple of times a night which is super-annoying as it can only be sorted by putting my feet in the floor. 

Will keep you all posted, I see the Onco again at the end of April. 

Hugs xxx