Hi, saw my oncologist today, she thinks my numb and tingly hands and arms are more likely to be carpal tunnel syndrome than Peripheral neuropathy. She suggested wearing a hand brace with a wrist splint at night time and to see if that helps. Looking online I can see both meds have a tendency to increase this condition, as does menopause, hypothyroidism, hyper mobility…and being female. So a lot of ticks!
My crunching dry bone sounds are of no real concern and are due to Letrozole. As long as I don’t try high impact sport or do lots of jumping she said not to worry about the structural integrity of my spine etc … So I was wondering how common it is to have CTS while taking Ibrance and Letrozole?
Any shared experiences & tips, would help and be greatly appreciated. At the moment no changes to my meds and dosage levels…she’s very happy with the current results and my markers continue to fall.
Best wishes to everyone! Love Zoe xx
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Hey Zoe! I've been Googling the same thing off & on for 5 years. One hand specialist diagnosed me with Cubital Tunnel Syndrome (nerve is being pinched at the elbow as well as in the wrist) way before the cancer showed up. He did have me in a wrist brace, but I had to wear mine off & on 24/7. Best thing to sleep with on cause it keeps the wrist stable, but a pain in the butt to work in if you're a janitor in a factory. I used to tear them up once a month *chuckle *. I found this about food with vE in them. (Were you on multivitamins before treatment & did drs. make you drop them?) I was taking Centrum Silver before & had to drop it when treatment started cause of the vE & Biotin. Been using shampoo & Conditioner with Biotin in it & I found this this morning.Vitamin E is found in plant-based oils, nuts, seeds, fruits, and vegetables.
Yup, your right I was on a whole load of vitamin supplements before. Endocrinologist had me on high doses of B, D,and E and red clover for peri menopause.I’ve had issues with hand and arm numbness on and off too…usually when my hormones were fluctuating or I was at a heavier weight…pregnancy, hypothyroid, etc…going back over the last 20 yrs…like you I use my hands a lot. I do loads of DIY, gardening and housework (heavy duty cleaning with 10 cats)as well as arty hobbies like painting ,drawing and crafting.
I think the Vitamins helped before but I was taken off everything when starting MBC treatments.
Thanks I will look into improving my diet by adding more sources of these types of vitamins….if only so much good could be found in bread and cheese! We had a surprising cold snap and an unusually strong winter this year and I slipped into some bad habits again…very tasty…but bad!
🤫🤭🤣🤣🤣🤣🤣 Don't feel bad, so did I!! I'm not an alchoholic, but I used to enjoy a beer after work or get a bottle of Dekuyper Buttershots Schnapps (unless I felt into a sip of Hot D@^n Schnapps). But chose to abstain once treatment began 2 yrs. ago. Well, I just couldn't stand it anymore I'm not a monk or a nun. I nabbed miyself a little sip of Buttershots. Could have been what ailed me this morning 🤔.
You can have an EMG/nerve conduction test to tell the difference between peripheral neuropathy and nerve compression causing carpal tunnel. A neurologist can perform the test.
Oh you poor thing, I got the worst carpal tunnel after I started exemestane. Apparently an uncommon side effect. I had a steroid injection to tide me thru until I got surgery. Surgery is done under locaL. It worked instantly 😊
Thanks, my mother in law had the op too but unfortunately it made things worse. My brother has had a very bad reaction to steroids that were prescribed for a sports injury. It took years to get them out of his system…so I’m very weary about these options, but I have heard that they do usually help. I’ll see how things go with the brace and take it from there.Best wishes to you, Zoe x
Aw Zoe, How worrying for you after such a bad result for your mum and bad reaction for your brother. I'll keep my fingers crossed that your treatment is successful. It was so good to be able to sleep again! X
Yes.yes.and yes. Thursday I go to get two hand braces fitted. I was taken off letrozole and put on anastrozole. Better. But still bad. Both my thumbs. It's awful.
Sorry you’ve got it too! How do you manage to paint? I like to sketch and craft various things. I’m an interior designer by profession…but I only really do small things for friends and family now. I’m always using my hands and I find it hard to rest them. I’m hoping the brace will help at night to give more usage during the day. There’s a lot of stuff I want to sort out at home as we’re moving soon and I need to do a major clear out!Hope the braces work for you, I just got mine at the pharmacy. If it helps I’ll get another for my left hand too.
I bought some braces from the disability shop because I had to get some Door handle, rubbery things, on all my round doorhandles in the house. I can’t use my key in the front door, so I had to get this big bulky thing to put my key so I can turn it, to get in the door.
I’m also doing lots of collage and watercolour painting. So I guess the only way I do this is as slowly and gently. And somethings are hard, and somethings are not.
but the surgeon has sent me to this specialist hand guy, who is going to make braces that will be fitted completely to my hands and wrists.
I know what you mean about round door handles! I’m routinely getting locked in when I use the loo at my in-laws….they are both in their mid 80s and have no issues…or may be they leave them open. Glad your finding some options to help around the issues…what’s that saying “ where there is will, there is a way !” 👍
I'm dealing with the same issues on Ibrance and Faslodex. Saw a hand doctor who ordered a nerve conduction test. We shall see what it shows. Was doing exercises and wearing a splint but my hand is getting worse.
Sorry your going through this. I’m only 5 months on this drug combo. Hoping to stick it out for a lot longer…so I’m going to suck it up, rest it up as much as possible and just get on with things as much as I can. Good luck to you, keep in touch with your progress, I hope you find a solution. Best wishes Zoe x
Hi! Since you are on an aromatase inhibitor, do read this article about the effect they have on tendons.ncbi.nlm.nih.gov/pmc/articl...
I had a bad bout of tendon problems In my hands last summer (playing golf) which involved severe right wrist pain and a left trigger thumb . Cortisone worked finally in September but the wrist pain returned in the winter. (Crocheting too much?). I got a repeat cortisone shot which is not unusual, and Now I always use a stabilizing brace at night and a soft but supportive wrist guard when golfing. I also use NSAID gel on the wrist as needed, take oral nsaid every day (for arthritis in general).
Ultimately it’s a side effect of the AI…without estrogen our bodies just don’t function well…but then, it’s what feeds the cancer so , take your pick.
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