I wonder if anyone taking similar meds to me has experienced neuropathy in their hands and arms?
I’ve been taking Ibrance for only 5 months, together with Femara (letrozole), Zoladex (Goserelin), and Zometa (Reclast). I’m getting a lot of pins and needles, tingling, in my arms. It’s worse at night and often I wake up with numb hands and arms. I’m right handed and the right side is more affected. It’s not that it is particularly painful, but my main worry is that if I mention it to my oncologist she will take me off Ibrance?
Has anyone else had this and were changes made to your meds? I’m seeing my oncologist on Monday for my 2 month pre scheduled appointment. I only managed 3 months on my first treatment (Kisqali) before my liver became over sensitive to it, and I really want to have a good stretch on Ibrance …as I feel very good apart from this tingly thing. I don’t know if it is neuropathy…but symptoms seem to fit. I have mets along my whole spine, so I’m also worrying that might be an influencing factor?
Any suggestions would be greatly appreciated, I know I will have to mention it to my Doctor but I’d really like some info to have a better idea of possibilities before then.
Thank you Zoe x
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Hi There, I am sorry to hear the side effects are keeping you up at night. I also have my hands, feet and legs “fall asleep” and it is annoying but I try not to let it bother me
sorry you have this happening....i realize how much you want to stay on ibrance! i looked up Zoladex (wasn't familiar) and that can also cause neuropathy....but you probably already know that.
but not sure if it is truly neuropathy? i have neuropathy in my feet (from IV chemo in 2013) and it is constant....24/7. it doesn't come and go. i can't tell from your post if your's comes and goes or constant? i know you said it is worse at night. although that is me....not sure how everyone reacts?
i also agree that it could be caused by spine issues? i too have extensive bone mets to my spine and they can definitely damage the nerves. in my case, i have 'weakness' in both arms and hands from the spinal nerve damage.
i'm thinking that your oncologist won't take you off of ibrance for this....especially since he/she knows you don't want that. i think he/she would at least wait longer to see what develops with your arms and hands going forward.
i know i wasn't much help but just throwing in my two cents!
good luck at Monday's appointment. keep us posted!
Hi Carole, thank you for sharing your experience. I have extensive nerve damage in my legs which is not getting better despite PT and leaves me significantly mobility impaired. I was wonder what are taking/doing to improve your condition.
hi Polina,so sorry to hear of the nerve damage in your legs and your impaired mobility. we take the ability to walk for granted....and then realize when we can no longer walk....or very limited ability....just how life changing it is. my 'disability' has progressed significantly in the past 6 months....although i have been heading in that direction for the past 2 years. for me, the cause is nerve damage from my spine and mainly that my spine is 'collapsing' and it can no longer 'hold me up'.....or not for long. i have approx 2 minutes of standing and or hobbling.....and then i MUST sit. when i do stand, i am so hunched over to the point that my face is facing the ground....very deformed. it is both physically and emotionally challenging. i don't get out much and have become a recluse. and so lonely. maybe if i had a 'partner' to cheer me on, i would feel less alone? regardless, it is what it is and i am trying hard to accept my new normal. but i must admit i miss being active and the joys of walking/running and yoga and dancing. and weirdly, just the ability to groc shop, or to be able to get dressed and have my clothes fit. my self-identity has taken a hit. like i said, all the little things we do during the day that i used to take for granted. even brushing my teeth is a challenge....i have to sit to get through it. i can no longer shower on my own. and travel is out of the question. my entire life has been changed dramatically. i suppose that i why i talk so much about quality of life.
so what do i do/take to improve my condition/situation is what you asked? hmmmm. well i have done much along the way, although for me it has made little difference....the progression of impaired mobility marches on. but that may not be true for you. we are all so different in how we respond to meds and treatments. and your 'cause' may be reversible whereas mine has not shown improvement?? i have done months of PT...i maxxed out my number of visits last year. i have a PT routine that i can do at home as well...good to keep the muscles moving and strengthen. my oncologist referred me to the PT but that was all she had to offer. oh, and she hooked me up with social worker at the cancer center.....only to find out that most 'at home' help needs to be paid for by the patient. since i am on medicare and supplemental, i do not need referrals to be seen by a specialist....so i sought out the help of two neuro doctors. one was a spine and sports pain management doctor and the other was a neurosurgeon who specializes in the spine. over the course of the last 18 months, i recd multiple steroid injections my lumbar spine, RAF (radio frequency ablation) to facet joints in my spine done under sedation, a posterior laminectomy surgery to L3, and fitted for a custom 'brace' that hurts more than it helps. i do have a lot of pain associated with my spine and take both short acting oxycodone and long acting morphine....although my pain levels are still very high when trying to stand or walk. but at least i get some relief when i sit.
so maybe some of the suggestions above would work for you? i would at least make an appointment with a neuro doctor and see what he/she has to offer? can't hurt and might help? and i would continue to do the PT, whether done at home or at a facility.
i wish i had more concrete answers for you. sorry i can't be of more help. i know how distressing and life altering this can be!
Oh Carole, my heart goes out to you and I’m so sorry for what you’re going through! I can absolutely relate. I, just like you, would like to LIVE for as long as I have left, but no, it doesn’t happen. Being alive is not enough, and quality of life is so important, most important. When you’re being robbed of the things you’ve love to do, robbed of your independence, what’s left?
I’m sorry for not being able to cheer you up! That’s how I feel.
I had laminectomy and fusion surgery for most of my thoracic spine due to cord compression. If anything my mobility and pain got worse. Had a consult with 2 separate neurologists who said that there is nothing to be done and the recovery after such injury is questionable. Still going to PT and being seen by rehab dr.
Not sure what else to do.
I hope that your pain will get under control and you’ll find a way to improve QOL.
thank you so much for all that. it's rare that someone really understands. and 'gets' it...that there is so little resemblance of my prior life. the pain and mobility continue to get worse....unbearable at times. it's scary. and exhausting....it takes a lot out of me. and like you already mentioned, the loss of independence is crushing. i think about quality of life a lot lately. i barely recognize myself....??
and my heart goes out to you too! i am hoping that the jury is still out for you... and that hopefully you will still regain more mobility?. i hope🙏so! coincidentally, my neuro docs signed off on me as well, saying the same....nothing more to be done. I can feel your disappointment and discouragement.
thanks again Polina....you really touched my heart.
best wishes for a more positive outcome 🙏🙏🙏. please keep me posted....
Thanks for responding Carole,It’s pretty much constant with me , but seems worse when I’m static or lying down.Which makes me think it’s a circulation issue? My blood pressure has always been low…to the point I get dizzy spells on standing up too suddenly. I’ve also had similar bouts of this same sensation at different times in my life, like when my Hashimotos flared up….which makes me think it might be triggered by an autoimmune issue? I’ll see what the Dr says.
orthostatic hypotension....the name of dizzy when standing up too quickly...BP drops too quickly for body to adjust. it's an actual diagnosis. anyways, circulation and autoimmune theories sound reasonable? it did enter my mind when you mentioned 'worse at night' and going numb. will be good to get your oncologist's input on monday! good luck...
Hi,Ugh! So sorry to hear you are suffering. My peripheral neuropathy improved when I went from 125 mg to 100 mg of Ibrance after about 3 + years on Ibrance.
Hi Discocat,I developed peripheral neuropathy while taking Anastrozole after my first cancer treatment in 2012. It is in my feet, which are gradually becoming numb and have lost quite a bit of muscle function.
I've been discussing it for months with the oncologist (still the same one ten years later) and although he listens, he refuses to acknowledge it as relevant, or as a side effect of the drugs.
My GP sent me to a neurologist who also refused to acknowledge it might be a side effect. He had no hypothesis about what was causing it...
I've had alternative treatments (reflexology, cranial-sacral therapy) which have helped with general wellbeing, but not stopped the advancing symptoms.
My strategy is to massage my feet and remind myself that I am still alive and the other side effects of Ibrance etc are liveable.
It's annoying not to be taken serially about these side effects, but they don't seem to be life threatening.
Thanks so much for responding. I’m sorry you also have this dumb numbness thing. I also weigh up the general pros and cons and think my symptoms are “liveable” and the most important thing is that the drugs are working. From what I’ve seen by only a little online research, peripheral neuropathy is a listed side effect for many MBC meds…apart from Chemo based ones where it’s widely recognised as causing nerve problems…so I will bring it up on Monday.
Thank you. It will be interesting to hear the response you get.What annoys and distresses me is that the doctors all gaslight me and refuse to acknowledge the side effects, which are written on the leaflet that is in the box with the tablets! If they were simply honest, and said they were sorry, but this is a side effect for which they have no treatment, at least I would feel respected!!
I believe you get that response from doctors because, they have no answer! Most have very very little schooling on nutrition, most do not know how to think outside their box… I could go on. We need to do our own research and use each other. 💕
Hi Zoe. I don't know enough about neuropathy to give feedback on that but I wonder if it might be talking to the oncologist to see if there is something going on with the spine? It doesn't sound like you have the shooting pain of a slipped disc but maybe there's an alignment issue or a met acting up? I feel like my oncologist is pretty good at sorting out for me if what's going on with me is a side effect, a normal sore muscle or sleeping wrong, or something worthy of a quick scan for review. Xx Stacy
Thanks for responding…yup your right I’m already going to ask about issues with my spine. Bone integrity is on my list of questions to ask. Everything seems to be crunching ….no pain or breakages but it makes me question the strength of my bones and joints.
I had this problem with Letrozole. I do take Ibrance, Faslodex and Xgeva and the problem's almost nonexistence--but I squeeze those rubber porcupine balls and roll my feet over them--also rub my feet with whatever's good for dried up Boomer cancer feet. Exercise--rubbing or use the affected areas is probably good but do ask your doctor.
In response to your question, I believe that it was the letrozole thatgaveme internal trembling which persists to this day. Also, I have bad neuropathy I my feet, especially my toes. This is interfering with my dancing.
Thanks for responding , I’m sorry about your neuropathic feet…not sure if that’s a word or not…I’m also wondering if my issues are triggered by hormone imbalances…as other times when similar things flared up I was either pregnant, going through peri menopause or having hypo thyroid problems…all which also changed my hormone levels, as does the Letrozole/Femara that I take.I’ll find out on Monday and let you know.
Sorry what do you mean… the neuropathy progressed with taking letrozole, or your tumours increased? Neither of cause is good! I hope you can adjust your meds/treatments to zap the buggers!Best wishes Zoe x
The cancer had a field day with Letozole. The Letrozole was bad for me. I am now on Fulvestrant. It seems to be working, so far. I actually feel better and can carry on with my very busy life. I will be traveling on May 6, to Scotland and will not be returning till early June. It is alright with the oncologist to delay treatment for an extra two weeks. It makes me very happy that the mbc is not holding me back from my travels. The sun is shining, today, and all week, I am celebrating my eighty-fifth birthday. Life is good!
Wow. Congratulations for your birthday and your travels. Have a wonderful time!! Glad that the meds are working for you and that there’s no holding you back!!🌞 ❤️ 🙂Love Zoe xx
Thank you for the good wishes. They are always helpful and they work. Some day, somewhere in between, we will arrange a meet up. I would really like that.XXX OOO
I have dropped foot from three rounds of targeted rads to my hip, which somehow later impacted my sciatic nerve and other nerves. Super PITA, actually PITF, the foot. I am seeing a pain dr. at Sloan. I was going nuts with neuropathy at night, not sleeping, etc. He put me on a low dose of Cymbalta and I can sleep pain free...they have figured out this works. I also am on Gabapentin. The onc referred me to the pain team.
Also, I am seeing a podiatrist, who is building a new brace for me. He gave me a cream compound for neuropathy that works too. Has G Gabapentin it it and lidocaine etc. Super on helping, too.
Ask for referrals from your onc. My bet is that this is beyond her purview. Luckily Sloan has a ton of resources, and I have a great relationship with the pain team who recommended the podiatrist after another patient mentioned him.
Thank you. I’m glad you have found some help to ease your pain. I’ve heard of some electro therapy treatments that can help people with neuropathy but it’s usually used on diabetics…not sure if applies to MBC patients circumstances.
hi Carol. sorry to hear on the foot drop and the pain. impaired mobility sucks! fingers crossed the docs can resolve?/ improve?....over time. hoping so!!! sounds like you are getting good care👍....always a bonus! interesting on the neuropathy cream. hmmm...i should ask my oncologist for script.....sounds wonderful. i have neuropathy in feet from chemo back in 2013 and recently they are 'hot' on top of the other stuff already. best wishes on the foot drop issue! carole xo
I'm on Ibrance and Faslodex and have been experiencing neuropathy also. My palliative care doctor prescribed gabapentin which seems to help. Massage and hand excercises help also.
I am on ibrance and anastrozole, and I have developed some neuropathy in my hands. I use essential oil’s to treat. Like you I don’t want to change my treatments
Hi Discocat. I have neuropathy in the balls of my feet, but that occured after they did the mastectomy/lymph node removal. Long before I ever started the Ibrance. My Onc prescribed Gabapentin & compression socks. I use an adjustable compression sleeve on my right arm for Lymphedema buildup that just started & it kind of helps the neuropathy in the back of my upper arm.
I have been taking Ibrance and Psalodex for 6 months. My neuropathy at first were very low and the doctor switched me to 100 milligrams instead of 125. I feel excellent and my medication and tumors have been greatly reduced. But ... it is important to note that I have completely changed my diet and my whole body has changed. The most important thing I noticed is to drink at least a glass of celery juice every morning with an empty stomach. I noticed that the green of the celery and probably any other green just corrects my blood picture right away. My HB immediately rises, and my neutrophils immediately correct. It just saves me. Anyone who does not understand that there is a direct link between his diet and his health and continues to eat all the unhealthy foods high in carbohydrates and sugars and burnt meats dripping with fat will not help him with all the medications. It is not enough just drugs, we need to take personal responsibility for our health condition by choosing foods that are mainly made from vegetables, one green apple per day, up to 70 grams of protein per day, preferably fish and eggs less meat, legumes are better sprouted, drinking plenty of filtered water, giving up Potatoes and rice, enough 2 meals a day, it is best to start the first meal at noon and until then only drink pure liquids. To rejoice, to smile, to love, to say thank you every moment and suddenly health returns.
Hi, thank you for your response. You sound very knowledgeable with dietary matters, I wonder if you have a background as a nutritionist ? I appreciate all the advice but my blood levels are very good. The problems I’m having concern my nervous system (neuropathy) not my white blood cell levels (neutropenia). I have already overhauled my diet and pretty much eat as you suggest…except I don’t juice, I eat the whole vegetable…mostly raw…and I do have some rice. I don’t eat meat, but do have eggs and seafood. I also drink lots of water.
Hi Zoe,I forgot to tell you that the acupressure pads for the feet and the balls for the hands seem to be very effective with my peripheral neuropathy. They’re not expensive and you can buy them online.
Hi! Just wondering, did you ever post what your oncologist said about this issue you were experiencing? (sorry if I don't see it) I am experiencing the "pins and needles" feeling and some pain in my upper arm and my next appointment is in a week and I plan to mention this. I am currently on Ibrance 125 and Letrozole. Thanks!
Hello...Sorry can't remember if I did or not...I remember posting about scan results but not sure if I mentioned oncologists take on the possible neuropathy.
Basically the oncologist was quite dismissive...saying its due to the meds...mostly the Femara as its lowering my Estrogen.
She suggested a brace on my hands and wrists and that she could refer me to a specialist if necessary...
Since then the issue has inexplicable cleared up on its own...I briefly wore braces at night but gave up as I found them hot and often would forget to put them on.
Have now developed issues with my fingers on my right hand and thumb on my left locking and stiffening up...think it's called trigger finger. This is also do to hormone restrictions...hoping it too will disappear soon...other than that the meds continue to work as my scans show stability without progression...I've been on ibrance for about a year now.
hello! You have received so many heartfelt suggestions from women who are affected in many ways by cancer treatments for MBC. I too am suffering from the effects of anastrozole and IBrance. While IBrance was a problem for me, I was able to mitigate the effects by adjusting how I take it: 5 days on and 2 days off, without a break. It has been life changing and my Onc is now using that trialed dosing schedule for her patients who have issues with neutropenia and fatigue.
The issues around anastrozole seem to be more troublesome: neuropathy and tendon and muscle issues continue to plague me. All aromatase inhibitors like anastrozole have these side effects but for some, the side effects are truly disabling. Here’s a link to an updated article about AIMSS (aromatase inhibitor-associated musculoskeletal syndrome) and what they are studying to help this syndrome.
It looks like a long article but most of the pages at the end are the contributors. On pg 6 there is a bit that suggests that IBrance actually mitigates some of the side effects. (!!) also, some people seem to benefit by switching up the different types of AI….finally, the last few pages of the article discuss some potential supplements that may help.
I get steroid injections when I get painful hand tendons. NSAIDs are very helpful, and I take gabapentin for nerve pain and neuropathy. The ideal balance is to take the meds that will help you stay active so that your body does not deteriorate from inactivity.
I hope you find some relief soon…but at this time if IBrance is working, please don’t give up. Best wishes to you!🙏🙏
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