A year and a half ago I had a masectomy, then CEF chemo followed by taxotere, plus a year of Herceptin and also Tamoxifen. In addition I am on chlodrinate (a biphosphinate), calcium and vitamin D (I was diagnosed with stage 2 breast cancer, lymph node involvement, er pr positive, her2nu positive). I have been experiencing leg pain upon waking as well as foot pain on the soles of my feet, mostly the arch area. It hurts to walk. I am 37. Does any one have any experience with this? Any suggestions.
I have foot and hand pain from Taxol, a cousin of Taxotere, that started about a year after I finished the Taxol. The kind of pain I have is called neuropathy and is caused by nerve damage from the chemo. Some of the other drugs you are taking could also have side effects that might affect your feet. A visit to the doctor could help you figure out whether this is a cancer treatment side effect or something else. The sooner you start treatment, the higher your chance of getting better. I hope you soon get some relief from this pain.
I, too, have foot and hand numbness (primarily on my right side). I cannot walk without pain. I have been told it is a neruoma from a podiatrist, which may be true. However, I believe it is also the risidual effects of Taxol from undergoing chemotherapy for breast cancer. I am in so much pain every day. My pain goes from my foot up to my knee. It's predominat in the evenings after my day at work. I do believe it is neuropathy from the Taxol. My dad went through colon cancer, and Taxol made his feet very sore. Thank you for your post. I am trying to find out what is going on with me -
A neuroma is a different condition than neuropathy. Both involve the nerves. I think you would experience Taxol-induced neuropathy more evenly in both feet. You also could have both conditions with the neuroma causing additional pain on the right side. If the pain in your foot starts between your third and fourth toes, it's called Morton's neuroma. The treatment for the two conditions is different, so getting the proper diagnosis will be important.
I am undergoing my second cycle of Inflammatory Breast Cancer IBC treatments.
I did not have the leg pain until now. The drugs that I take now are Herceptin, Zometa, and Amidrix. Yes, cancer did matasisize to my liver and hip bone. The first cycle of treatments cleared it from my breast and liver, but the bone still is showing signs of cancer. I can't walk much it is painful. Laying in bed is awful too. I am very glad to find out that others have this problem too. The tingling in toes and fingers I thought was wierd enough, but having PAIN is a stress inducer. I already have blood pressure alerts and pain is not helping.
Nette, the tingling in your fingers and toes is probably peripheral neuropathy from a taxane chemotherapy drug you likely had in your initial treatment. Almost everyone with inflammatory breast cancer is treated with a drug in the Taxol family. Your current pain could be from the Zometa, the Arimidex, or even from the cancer in your hip. Pain that starts in one part of the body is sometimes experienced somewhere else. This is called referred pain.
Please talk to your doctor about your pain. It may be possible to adjust the dosage of your drugs, to add a pain medication, or to use topical pain relievers like massage, heat or ice to help. If the oncologist doesn't have any ideas, your primary care doctor or a pain management doctor may have more experience with pain management. Because the pain reduces your ability to walk and exercise, some sessions with a physical therapist could also help you find ways to keep your muscles and joints active. Inactivity could end up making it all worse.
It's always hard when inflammatory breast cancer spreads, but I know quite a few people whose IBC bone and liver metastases have stabilized or even reduced on treatment, so have hope that this round of treatment is going to get the problem under control.
I too have toe to knee CONSTANT pain on both sides - Like burning in both feet and legs. Mine is worse when I sit or when I am not on my feet. I was diag BC stage 3C April 2013. Mastecomy right side and all lymph nodes in May 2013 - 19/23 nodes. Anyway, I chose NOT to do chemo but I did do radiation and then in Aug 2013 started tamoxifen! I have many other physical issues that all just started about 2 months ago. My medical oncologist says his gut is it is the tamoxifen turned toxic on me. He took me off. Still the same pain but only 2 days off so hoping! Also PET scheduled for Tuesday.
Dawn, it would seem odd that tamoxifen would "turn toxic" on you after 9 months, and produce pain in your legs; I haven't heard of that happening. But then, I'm not a doctor, so your oncologist's "gut" may very well be right, especially since tamoxifen is the only new tool in your drug regimen (I assume?) If it took 9 months for this pain to kick in, it will certainly take longr than 2 days for it to diminish; I'd give it a good month before concluding the pain is (or isn't) due to the tamoxifen. I hope you eventually find a different cause, as it would be a shame to have to discontinue tamoxifen – since it's helpful in preventing recurrence. Best of luck to you - I hope the PET gives you the results you want. PJH
He has taken me off tamoxifen for 6 weeks. I didn't expect to feel any different after 2 days but of course I am hopeful it won't take a month! I think I listed the other issues I was having but anyway they did not start until about 2 months ago. I am also hopeful it is the tamoxifen because I don't like the other possibilities. The PET if approved by my insurance should give me at least one answer and then we will go from there. It is just very frustrating not being able to do anything really to stop the constant pain which feels like my feet and lower legs are on fire. It only stops when I sleep and I take something to help me sleep. Also when I walk it does not seem to be bad.
One day at a time!
Sometimes, Dawn,that's just how we have to take it - one step at a time, one day at a time. Don't look up at the mountaintop - it seems too far away. Look at the path in front of you, and keep moving forward. Sending you positive energy - PJH
Hi - I had CEF chemo, plus tamoxifen, and am now on Arimidex. I don't know if this helps, but I had terrible foot/arch pain, so bad that I could barely walk. Don't know if it was the result of chemo, or what. My doctor prescribed semi-intense Ibuprofen - 2 tabs every four hours daytime, every day. After 4 months, the foot pain disappeared, and it hasn't come back. Please ask your doctor if this might be appropriate for you - and ask about the neuropathy, also, as Phyllis suggests. Good luck - PJH
Oh my gosh, I have been experiencing this pain for about 6 yrs. I had a mastectomy 8 yrs ago and still have intense pain. Most of the pain is in my neck, backs of my legs and soles of my feet. The mornings are the worst. After surgery I gains 40lbs. My entire adult life I was no more than 110lbs. Then, after surgery and gaining weight, I just assumed the pain was from the extra pounds. I have seen several doctors about it, and they look at me like I'm a nut. I was told I had figromyacia. I'm not so sure that is the case. Especially after doing some reading online and seeing your post. I also have the breast pain, but I accepted that as just the way it is. I never associated the other body pain with the cancer treatments. A couple years ago I was had thyroid cancer, I was told that was a result of the radiation from the breast cancer treatment. Last year was my 10th surgery. I have a very high pain tolerance and try to push it aside. However, day after day... year after year... I'm sick of it. Ibuprofen has been a steady part of my diet forever. I really need to find out what kind of doctor could help me!
Lyrica, water arobics, and foot massages from a specialists, are what my wife said works for her she had the same pain in her legs and feet.
Wow! Googled "tamoxifen, foot pain" and found you guys. Experiencing pain along the bottom of my feet with no logical explanation. My diagnosis was DCIS, so I didn't have chemo . . . just lumpectomy, radiation, tamoxifen. Must be the drugs. Thanks for sharing your experiences!
l was DX in Dec 07 after several operations l had FEC chemo & radiation then bilateral diep reconstruction, l am suffering terrible pains and stabbing shocks in my toes, feet, shins, lower legs & hands it is so painfull and comes on about teatime, l get it that bad l feel sick, doctor gave me Amitriptylin. l take 30mg in a morning and 30mg at the evening also co-dyromol l still get shooting pain, l was told this was due to my cancer tablet Aromasin in-habitor.
but talking to a few people l think that it is also a trade off from chemo,
The chemos in the taxane family like Taxol and Taxotere are more likely to cause peripheral neuropathy, the nerve damage that causes some people hand and/or foot pain, than the FEC you had. Check with your doctor and/or pharmacist about Aromasin side effects. There may be some adjustment in the amount and/or timing of the dosing that might relieve the pain. The more you understand about the possible causes of the pain, the more likely you are to find a way to make it better. Also try massage, keeping your feet warm, exercising, etc. to reduce the pain.
Janet, this doesn't sound like a side effect from your aromatase inhibitor, nor FEC chemo. AI side effects are more like pain in the joints; like knee pain or ankle pain, not the shooting-type pains in the extremities you describe. You might have an entirely different issue going on here, unrelated to cancer. Once we've been treated for cancer, we tend to blame every ache and pain on that; but you could be experiencing something nerve-related. Have you spoken to your regular doctor about this?
If they're quite sure it's from the AI, then you should ask about going on tamoxifen. It's not quite as effective, but doesn't come with the painful side effects. Good luck - PJH
You took the words from my mouth as I scrolled down the messages! I too had DCIS and radiation 2 1/2 years ago. The foot pain started about 4months ago on and off and so much more on now. I found some relief if I wear supportive shoes with heels. I couldn't really tolerate heels before but now they seem to help. I am hoping that after I stop the tamoxifen the foot pain will stop. I am happy to see that I am not alone with the foot pain. Really crappy side affect to all that we have gone through!
Cheryl, as I mentioned, my foot pain was awful and lasted for months, until I went on an intensive course of ibuprofen - like, 3X/day, maximum dose. My family doctor, not oncologist, suggested this. And it worked - after a few weeks, it just seemed to knock the pain out, and it didn't come back. Still have minor foot pain, but very easy to deal with. Hope you find something that provides similar relief - I'd hate to think you have to wait till you're done with tamoxifen, which might be years... Best of luck - PJH
Same situation, but no answer to offer. When I stand for a period of time, or walk (what used to be a normal amount), my legs start to ache (when I lay in bed it seems they throb or vibrate) and the soles of my feet hurt. Once I sit down, then try to get up, I have to hobble because of the effect on my walking. I had ACT - the T being Taxotere, a lumpectomy and radiation. The pain didn't start until 2.5 months after completing chemo. At least I know I have a 'sister' out there somewhere!
My legs ache. When I sit for a while, then stand up, I'm hunched over because my legs have spasmed. Now the pain has started in my arm. I take percoset when the ibuprophin stops working. At night I often have a feeling like restless leg syndrome, like ants are crawling on my legs.
i've been diagnosed with chemotherapy Induced Peripheral Neuropathy. I had a lumpectomy, ancillary node dissection, ACT chemo, radiation, and Femara drug. 3 months after completing chemo the pain and weakness started. I had to walk with a cane for several months. I take neurotin to help calm the central nervous system. Some days it helps. Other days it doesn't. Now 8 months from my last chemo treatment, I can only hope tha t pain subsides one day.
You lot have made me feel normal !! I was getting to think I was becoming insane !! I had taxotere, last treatment was on Sept 29th and my legs and feet are still unbearable with pain. my partner answers my moans with 'oh yes my legs and feet hurt too, you need to move about more'. The more I move the worse it gets, the more I sit the more I can't move, if I get on the floor for any reason I cannot get up as I have no strength in my legs, stairs are a nightmare !!
Lins, talk to your doctor about this. There are some different types of drugs that can help with neuropathy, which is the name for the type of pain you are experiencing. One group of drugs that help people are anti-seizure drugs like Neurontin and a new one called Lyrica. The Neurontin has been around long enough for inexpensive generics to be available. Certain anti-depressants sometimes also relieve the pain. Certain vitamins bring relief to some people too. Consider asking for a referral to a neurologist if your regular doctor can't find a drug that works well for you. Good blood flow can help, so move as much as you can manage. I find it's important for me to keep busy to get my mind off the pain, and now I can tune it out during the day. When it first started, I wouldn't have believed that I could learn to ignore the pain and move on with life. Of course, I have to be especially careful when walking on uneven terrain or steps, but I get by.
I wrote back on Sept 15, 2009. The mystery pains had been a part of my life for about 5 months. After doing research, I suggested Neurontin to my oncologist. She didn't have strong feelings about whether it would help or not. I still felt like my symptoms were not totally consistent with neuropathy so I took my time filling the prescription. This was around mid October. Around the first of November - before I had committed to taking the Neurontin, my pains disappeared -- as in completely, as in 'they never existed'. One day I could barely walk, the next I was my old self again. I have no explanation. I changed NOTHING. There is no rhyme or reason to it at all. But here it is 4 months later and I can report that the pains have not returned. I never believed anybody who said that 'they'll go away eventually', especially since I had no explainable cause. (Now I believe Taxotere). But I learned that is was possible. Maybe hearing that my pain subsided will at least give you some sense that it is possible for you too. So, to all my sisters who are still in pain, I am with you in spirit and I wish you well on your journeys of recovery.
Thanks for your advice, I have been prescribed Lyrica before (I have a dynesis device in my spine and have serious nerve problems as a result of the operation) I found I could not function on the drug, I felt drunk and slurred my words so bad that I was sometimes hard to understand. I kept fogetting things mid sentence and was taken off the drug. I guess it is a case of riding the waves until you reach the beach ! .... At least I know I am not going mad and that other people have the same pains ...
om i had breast cancer and my legs and feet are so bad i can barley stand up and move after sitting for a period the pain is so bad .....ive been told to take motrion every 4 hrs ... i also had taxotere..i was wondering what was going on and now i find many who has the same thing lori
Lori, Taxotere can really do a number on your hands and feet - pain, tingling, and numbness aren't uncommon. Unfortunately, there's not a whole lot you can do; I hope the Motrin works somewhat, and that gradually the pain fades away... Take care- PJH
As I sit here and cry I feel relief that I am not as others put it crazy!! I have all of the symptoms the same...I lie in bed at night and wish I could pay someone to rub my feet . They ache so much and almost feel on fire. My calves and thighs are so weaki. I am 7 weeks post chemo, 3 weeks post surgery and about to begin radiation. My radiation oncologist said the radiation could make it worse. SHe told me to tell her if one leg were worse than the other so we could look for blood clots. NO that didn't freak me out!! I definately know mine was caused by the taxotere. My fingers are tingly and my fingernails are growing out the brown fingernails that I had!!
I am so sorry others have had to experience this , I just pray for an instant healing for all of us! I think it's so important to share!!
Patty, so glad you found this site. We're a supportive community of women, and this is a great place to vent, ask questions, and feel that you're not alone. Thankfully, these symptoms should subside with time - though it's not "instant," by any means. It's a long road, but take it one step at a time - knowing that each step, you're that much closer to feeling good again. Best of luck - PJH
Thanks to all the people who posted on this site - I was beginning to think I was going crazy, or even had gout!
I'm a survivor, after 14 years (9 of which I was in remission) of fighting ovarian CA, I have had many chemo treatments, 15 or so radiation treatments; all the chemo trtmts. contained Taxol in some form. Three weeks post-chemo (about a month ago), I woke up with excrutiating pain in my right foot, ankle and half-way up my calf. I had a supply of pain meds, plus anti-inflammatory OTC ibuprophen and took them regularly for about 3 weeks. The combination of the opioid-based med, along with ibuprophen controlled the pain, and the pain was gone in 3 weeks.
THEN - about 2 weeks ago, I woke up one morning and I had the same pain in my LEFT foot! I've still got it but am taking the medication combo I took before and am hoping the pain will go away like it did in my right foot. I'm awaiting a good blood platelet count so I can receive my 6th, and final, chemo treatment. Hopefully this pain in my left foot will be gone before the other side-effects set in, post-chemo.
The "fun" just never ends, does it? I'm so sorry you're having to go through this pain, along with chemo at the same time. I'd guess it's peripheral neuropathy; and I'm so glad the pain meds took care of it in your right leg. Hopefully you'll repeat that experience with your left. Best of luck to you going forward; one day at a time, right? PJH
Like PJ said, it could be peripheral neuropathy, which can be caused by Taxol, as well as some other chemo drugs. I'm glad it went away in the right leg, and I hope you soon feel better on the left side. Be sure to let the doctor know about this side effect. Sometimes we don't let our doctors know everything that is happening to us because we assume the problem is a normal side effect from chemo. But doctors need to understand the normal side effects we experience, and sometimes the problem is something else that needs treatment. If this pain doesn't go away like it did on the right side, talk to your doctor about whether it is peripheral neuropathy and ask about what you can do to make it better. Sometimes it does go away on its own, but if yours doesn't, there are better treatments than the ones you are taking. Best wishes for a good platelet count!
It is such a relief to know I am not the only person suffering this pain. I am 5 weeks post chemo and have been suffering with leg and foot pain for about 3 weeks. I have mentioned this pain to my oncologist and radiation oncologist and they have no answers. I will be starting radiation next week and am discouraged to learn that the pain may worsen with the treatments. At least I know the chemo drugs were probably the cause and I can only hope this improves with time. It is very comforting to hear from others that share my experiences and I pray for each one of us. God Bless!
Linda, it's distressing your doctor hasn't explained neuropathy to you; ifyou've had taxol or taxane, this is probably what's causing your pain. Bring it up at your next appointment; ask if s/he thinks there are any treatments or exercises that might help. Best of luck, and I hope it abates soon. PJH
i have the same thing lung cancer 14 years ago i had taxil i have neuropathy in my fingers ankles legs its nerve damage i am in such pain the doctors saY YOU ARE ALIVE I KNOW THAT BUT I AM IN PAIN FROM THE NEUROPATHY I KNOW WHAT YOUR GOING THROUGH IT STINKS NO CURE
Jeanne, I find the attitude of some doctors frustrating; "being alive" isn't the only outcome we desire, is it? There's such a thing as quality of life. I'm sorry you're having to endure such pain; we can hope that every day that passes, researchers are another day closer to finding treatment for this debilitating side effect. Sending you positive energy - PJH