bone, muscle, and joint pain

[ohMary]

One year ago this week I started chemo (AC + Taxol)
I am very depressed because I still have a huge amount of pain in my arms and legs as well as my lower back.

I have been taking Vicodin every day for almost a year. My homeopath wants me to wean off the pain meds, but when I do, I realize that I am in as much pain as ever and I lose hope that I will ever feel good again.

does anyone else have this symptom? I would appreciate hearing from you. I feel like I'm the only one who isn't getting better. A year is a long time.

[sam52]

Ho Mary...I note you are ER/PR+...therefore presumably taking tamoxifen or an aromatase inhibitor.
These are a very likely cause of your continuing pain, rather than the chemo.You may be able to change from one to another, to get some relief.

Sam

[ohMary]

No. No Tamoxifen or Arimidex or anything like that. I have refused them precisely because I have this terrible pain and I hear that those drugs make it worse. The pain is from chemo. I guess I am the only one to have this problem. So depressing!

[Karen up north]

HI Mary,
I am also looking for words to ease my mind. I am and, have been experiencing extreme wrist pain in Jan/06. I started with Arimidex last Nov.. At my last visit to the Onco. they stated that this pain could be from the medication. They said to stop the Arimidex and the pain should go away in a couple of weeks. It has been a month and I am still in pain. The pain interfers with my daily routines, and personal care. I am relieved to find that I am not the only women that is or has experienced this condition from this drug. I thought I was losing my mind. I was complaining to the doc. they were lifting thier eye-brows...ummm I don't know??? I'm tired of the pain, I am tired of the "I don't knows.."
I don't know...
Good Health to you and to all that read this.
Any comments or help would be grateful..
Karen up north.

dx age 45, 4/04 Invasive lobular. estrgen +, nodes removed.
bi-lat mast. chemo ended 1/05, 4 a/c & 4 Taxol
33 rad (that took 64 days to complete)
overies removed 11/05
started Arimidex 11/05, stopped 2/06

[Sharon]

Hi Mary and Karen: Sorry that you are also experiencing joint and muscle pain. It is so frustrating. I posted earlier about the same problem. I really thought I was going crazy with my wrist problem. I still have neuropathy from the Taxol. I am taking Aromasin. I am just hoping that it will eventually get better. I am very stiff in the morning or after sitting for long periods. I wish more people would respond as I think it happens fairly frequently. My oncologist said the joint pain from the chemo lasts about a year, but mine didn't start until I was on the Aromasin for several months. Blessings to you both...you are not alone, Sharon

[MomG]

OH Geez...I have been having joint pain in my right wrist since I stared taking the Arimidex right after my surgery...I just thought the pain was coming from a possibility that they had to secure my right arm during the surgery & maybe the bone got bruised or something...some days I can't hardly use my right hand cause the joint hurts so bad & it gets red & swells too. Never once did I relate it to the meds. So good to know that it's not all in my mind...I mentioned it to the dr. but he just said, I needed to continue the arm exercises they gave me to do after the surgery to strengthen the arm & muscles...So now I've got something to go on & ask him when I go back. So sorry that others are having this problem also...but it's helpful to share these things, that's why I am thankful I found this forum...I don't post much, just read, but I never had to have any chemo or radiation, so it's for sure my wrist pain it's not related to that. I hate it for us all that we think we got one problem solved, & then the meds we have to take causes another problem. There should be a ( relief) zone in there somewhere.

[Sharon]

Dear Mom G: So sorry to hear that you also are experiencing wrist joint pain. It is especially problematic if you are right handed. Sometimes it is even hard for me to pull the covers up at night....after I have kicked them off during a hot flash. I did try switching to Femara but the hot flashes were much more frequent and severe so I went back to Aromasin. I think my wrists are feeling better though. My oncologist suggested that I take Motrin for pain relief. I even tried the wrist supports at night that people use for carpal tunnel. I have another friend who had a bilateral mastectomy and never had chemo or radiation, but was on Arimidex and had the same problems you and I are experiencing. My fear of reoccurence keeps me on the drugs. Hope yours improves with time. I started Aromasin one year ago and just started with the joint pain around February. It does help to know that we are not alone or crazy. Keep the faith.....sometimes it helps to go off of them for awhile, or switch, and then resume.. Good luck. Sharon

[MomG]

Hey Sharon, Thanks for your reply....it is so helpful to know that others are experincing the same problem with the meds. Yes, I am right handed & I have the same problem trying to pull the covers up, but I'm not having the hot flashes, done been there, done that, but my Oncologist said that was one of the side effects, but never mentioned the muscle or joint pain...I use that wrist support also...it seemed to give me some relief, but when I take it off, Bingo, the pain is back & you can't wear that thing all the time & do any kind of house work. I just started taking the Arimidex in March after my surgery in January, so seems I had a fast reaction to it according to what I have read compaired to others. I am sure going to call my oncologist & ask him about this, because my next appointment isn't till August 1st. & I sure don't want to wait that long to get some relief. Yes, it is good to know we aren't crazy & alone in this...I had my surgery Up State Ithaca NY where my daughter lives & the oncologist there was more thorough in explaining things to me than the one I have here in Va. I might just give him a call since he's the one to put me on this. Thanks for the info.
God Bless & hang in there.

[AndreeTerry]

I was diagnosed and treated for breast cancer in 2004 and have been on arimidex for almost two years. The wrist pain I have on the same right side is severe and interferes with my ability to work and perform daily tasks. My middle finger is also stiff and the pad of the thumb is sore.
I am not sure it is from the arimidex as I have been reading about
auxilliary web sydrome- this is a condition in which you have scar tissue form on the nerves in the area of your surgery and/or node dissection.
The pain appears in your hand/wrist/forearm.
Massage to break up the scar tissue is suppsed to help but acupuncture is contraindicated due to the risk of lymphedema.
I hope this pain is from arimidex and will be gone when I stop the med in three years...but I am afraid it may be the web syndrome and in fact be permanent.
Is anyone else familiar with this condition?
My surgeon retired so I am unable to see him about this.
AndreeTerry

[Sharon]

Dear Andree: Thanks for responding. I have never heard of the axillary web syndrome. I suppose it could occur from radiation and an axillary node dissection. I hope yours is from the Arimidex. My bilateral wrist pain is actually improving. I still have the early morning stiffness in all of my joints especially my feet. Skeetchers are the only shoes I can wear comfortably due to the pain in my feet. the neuropathy is slowly improving and I am still taking Neurotin for it. I will be glad when I can stop taking it. Good health to all who read this....In spirit, Sharon

[AndreeTerry]

Hi Sharon,
I call the morning condition of stiffness CONCRETE FEET.
The feet have no flexibility!
My wrist pain has been better in the last day or so,
I took a bunch of advil but that seems to give me heartburn..
just no easy answer I guess,
Andree

[Karen]

I had a lumpectomy in June 05 followed by radiation. My Oncologist decided not to put me through chemo. (I hope that doesn't come back to haunt me) I started Tamoxifen in August 05 and within one month I was experiencing terrible bone and joint pain all over. My shoulder became so painful I was taking pain pills 2 to 3 times a day. Through all of my pain, my cancer doctor(s) said it had nothing to do with cancer or the Tamoxifen but I knew different. On June 1, 2006 I convinced my Oncologist to let me take a break from the Tamoxifen. He agreed. Within 3 days ALL my pain had left and I was my old self again full of life and energy. When I went back on June 20th he said my blood work showed that my levels of estrogen were high enough that I could not stay off the medicine so he put me on Aromasin. Today is July 9th and in less than a months time my bone and joint pain is back with a vengence. I do believe I hurt more on the Aromasin than I did while on the Tamoxifen. I do not know what to do. My doctor says the chance of my cancer coming back if I get off the medicine is 95% but he can't tell me the percentage figure of it not coming back by being on the medicine. So what do you do? What decision do you make? Quality of life is very important and I do not have a life on this medicine. It is all I can do to get up in the morning and go to work. My hands and feet ache something terrible. It hurts for the sheets to touch my skin. I have dizzy spells, headaches, and nausea almost every day. I go back in two weeks and I have to make a decision whether to take my chances and get off all medicine or go back on the Tamoxifen. I can't stay on the Aromasin. I am in tears on it. My husband doesn't know what to do for me. I have always had a high tolerance for pain and I never get upset or cry. My family has always considered me to be level headed and the rock of the family. All I do is cry now because of the pain so he just cries with me. I am a Banker and have been there 23 years. My co-workers say they can see the pain in my eyes. I have prayed for help in making this decision but have not received an "answer" yet. I think He is trying to tell me that I must stay on the medicine but how can I handle this for 4 more years? Doesn't quality of life mean anything? If I get off the medicine and my cancer comes back will my Doctor(s) be upset with me to the point that they no longer want to help me because I wouldn't listen to them the first time? My Doctor(s) are supposed to the best in the Dallas area but they just don't understand the pain I am going through. Just because they have other patients that do fine on the medicine doesn't mean they should compare my body with theirs. One thing I have learned through this experience is that everyone's body reacts in a different way and you must listen to what your body is telling you. Thanks for listening to me. God Bless all of the Ladies who are experiences these issues.

Karen

[catfallon]

Ladies,

I am new to this forum, but have been part of IBC forum for almost a year. The pain is bad with the Taxol and Tamoxafen, and any derivative. I started Taxol last year for four dense dose treatments every two weeks, and the pain was excruciating. Karen, I do not know how you are going to work! Always remember, God will not give you more than you can bear, and that He is always with you. I have always felt my inflammatory breast cancer was an attack from the enemy, and I won't let him win. Even after treatment, I have a 30% chance or recurrence because of the aggressive nature of IBC. I don't dwell on it though, because God has so many plans for me. Thankfully, very thankfully, I was ER/PR/HER negative, so no further drugs are necessary. The only thing I am still dealing with is the residual Taxol pain. From September/05 until April of this year, I felt like I was walking on glass with my feet. That pain is finally gone, and now it is my knees, lower back, and wrist. Some days, I feel like I'm in my 70's instead of a very young 43. You are all in my prayers.

[MARYHELEN]

I was diagnosed with Stage IIIA breast cancer July 2005 and had bilateral mastectomies, chem and RT. The taxol pain was so bad that I would hold myself at night and rock back and forth moaning. I tried every over the counter pain med there is in huge quantities - the onc people kept telling me to try tylenol! Finally I begged them (at cycle #4) for percocet, which gave me blessed relief. This is nonsense, being told that the pain either isn't bad, reponds to tylenol - yadda yadda. I'm also wondering when it will end. I finished chemo in February 2006 and still in pain. I try to take Vicodin or Percocet only once a day. I am having acupuncture, massage and chiropractic. I have an appointment with a pain specialist next week to see his take on this. I'm so glad to see all of you confirming this is real - not that I'm glad we all have pain, but the docs make you think you are the only one having this - like they never heard of it before. If I come across anything I'll let you know. My acupuncturist contacted a chinese herbal specialist at Sloan Kettering and said she might have a chinese herbal formula that can help. I hope so.
Peace - hang in there.
Mary B.

[Debra]

I am new to this forum. I went through surgery, radiation and chemo last year and am now on Arimidex. I too have the stiffness. I am also having problems with water retention (edema) which started with the Tamoxifen I took before I was switched to Arimidex. Is anyone else having a problem with edema? I can't get my wedding ring off anymore and some of my watches I can't wear anymore. Even some of my shoes are tight now. I am seriously thinking of stopping the Arimidex. I was a stage 1 - no nodes involved and after 3 surgeries, I think they got it all. I too am tired of getting out of bed in the morning and gimping around for about 10 minutes. I'm tired of the hot flashes even though Bellamine has helped turn them down a bit. I am 48. Recently we went on a vacation and took several hikes. I have always had lots of energy. But this time I couldn't even keep up with my 10 year old and several times I was really scared I wouldn't have the energy to make it back. It's been over a year since I finished chemo - anybody else have this problem?

Karen, I'm really sorry to hear what you are going through. I'm not a doctor but it seems weird that they didn't have you go through chemo and supposedly your cancer is that likely to return. Perhaps a different oncologists opinion would help. The oncologist I had was supposedly good, but she never had time for any questions. Everytime I told her a problem I was having and asked if it was due to chemo or at that time the Tamoxifen, she would say "maybe" on her way out the door. I finally switched to a doctor several people I met were going to and now I get my questions answered, although he doesn't have all the answers either - sometimes it's a best guess, but at least I don't get the "maybe" anymore. So much of cancer treatment as I am finding out is to do everything that current research shows is more likely to keep it from recurring. I can't help wondering in 10 or 20 years what the treatment will be. People will probably look back on how we were treated and think how barbaric it was! Oh well, at least it keeps us alive!