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Thread: bone, muscle, and joint pain

  1. #1
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    bone, muscle, and joint pain

    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.
    Mary, age 43 at diagnosis - Jan 05
    Invasive ductal carcinoma Stage II
    1.3cm tumor; lumpectomy Feb 05
    pos nodes (2 of 13) er+ pr+ Her2-
    AC + Taxol (completed June 05)
    33 Rads (completed Sept 05)
    No hormonal therapy (ever)

  2. #2
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    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
    dx bc Oct 2001
    tx - mast, chemo(FEC+taxotere), 25 rads.Now on tamoxifen

  3. #3
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    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!
    Mary, age 43 at diagnosis - Jan 05
    Invasive ductal carcinoma Stage II
    1.3cm tumor; lumpectomy Feb 05
    pos nodes (2 of 13) er+ pr+ Her2-
    AC + Taxol (completed June 05)
    33 Rads (completed Sept 05)
    No hormonal therapy (ever)

  4. #4
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    wrist, joint pain

    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

  5. #5
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    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
    DX: October, 2004,age 59
    Lumpectomy with Sentinel node
    Sentinel node + with 5mm lesion
    ER/PR +
    HER2 -
    Invasive Ductal with 8mm primary lesion
    Dose Dense AC x 4 with Taxol x4
    Radiation x 6weeks

  6. #6
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    Re: bone, muscle, and joint pain

    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.
    MomG DX 11-23-05 @ 65 yrs. old. Simple mastectomy RB 0.7 cm 1-6-06ER- 3+PR- 3+HER2/nev (herceptest) Negitive, 0+Main Sentinel Node - NegetiveArimidex 1mg. for next 5 years. Onc. Stopped the Arimidex, too much pain &* side effects. Evista 60mg. a day. No osteoporosis. No Chemo or radiation.
    Mother, lung, liver cancer, Aunt, BC, Sister, Bile Duct Liver cancer

  7. #7
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    wrist pain

    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
    DX: October, 2004,age 59
    Lumpectomy with Sentinel node
    Sentinel node + with 5mm lesion
    ER/PR +
    HER2 -
    Invasive Ductal with 8mm primary lesion
    Dose Dense AC x 4 with Taxol x4
    Radiation x 6weeks

  8. #8
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    Re: bone, muscle, and joint pain

    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.
    MomG DX 11-23-05 @ 65 yrs. old. Simple mastectomy RB 0.7 cm 1-6-06ER- 3+PR- 3+HER2/nev (herceptest) Negitive, 0+Main Sentinel Node - NegetiveArimidex 1mg. for next 5 years. Onc. Stopped the Arimidex, too much pain &* side effects. Evista 60mg. a day. No osteoporosis. No Chemo or radiation.
    Mother, lung, liver cancer, Aunt, BC, Sister, Bile Duct Liver cancer

  9. #9
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    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
    idc stage one
    no nodes involved
    1cm tumor size
    4 A/C 36 rads
    Feb 2004

  10. #10
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    wrist and joint pain

    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
    DX: October, 2004,age 59
    Lumpectomy with Sentinel node
    Sentinel node + with 5mm lesion
    ER/PR +
    HER2 -
    Invasive Ductal with 8mm primary lesion
    Dose Dense AC x 4 with Taxol x4
    Radiation x 6weeks

  11. #11
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    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
    idc stage one
    no nodes involved
    1cm tumor size
    4 A/C 36 rads
    Feb 2004

  12. #12
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    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

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    bone, muscle, and joint pain

    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.
    Cathy Fallon
    5/05 IBC Stage IIIB
    4-AC, 4-Taxol
    Modified radical mastectomy 9/05 with lymph nodes resection
    3/7 positive at surgery
    33 RAD treatments with radiation to the skin every other treatment
    NED 5/06 on CT

  14. #14

    taxol pain

    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.

  15. #15
    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!

  16. #16
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    Re: bone, muscle, and joint pain

    Ladies, I went back to the onc last week & he took me off the Arimidex & wants me to try the Aromasin..I had did my own experminting for several weeks before my appointment to prove to myself it was the meds. I stopped taking the Arimidex for a week & all the symtpons stopped...digestion was better, not throwing up, no joint pain, vision cleared up, no bloting & swelling. So went back on the Arimidex & it all came back. I stopped the Arimidex the next day after my appointment with onc. & haven't started the Aromasin yet. Karen I can see that the Aromasin does as much or more to you as the Arimidex did to me...

    I thought I would wait a week to start taking it & give my system time to get the other out first, but now I'm not so sure. I've got appt. with my family dr the 10th. & he had put me on Lasix, for the swelling, which has started causing cramps in my muscles...and we all know that Lasix takes the potassium levels down, also Zantax for the digestion & FiberLax for my bowels, all because of side effects. I am going to ask the dr if I have to come off any of these meds slowly or can I just quit them before I try the Aromasin to see what side effects it causes. I am like the rest of you, I'm so tired of being tired all the time & not myself & having to take something for the side effects & who know what side effects they will cause us to have to take more meds to get relief & our liver has to process all these meds, so what's it going to do to it down the road?...

    My chances of the cancer coming back without the meds are better than 70% & if I find out I can't tolorate the Aromasin, then I just might take my chances. I think we all have to do what is best for our bodies. I have always been able to tolerate a high level of pain, but not an on going daily & weekly pain & discomfort. I have gotten to the point of dreading to eat, go to bath room, getting up etc. but I am determained to not let this get the best of me, so as I can't live a half way normal life & try to enjoy it to the fullest as best as I can for as long as I've got breath to keep going on. God made these bodies & he can restore them also....my trust is in him to help me through the good & bad till my time is finished..
    Hang in there ladies, together we can all make it.
    God Bless.
    MomG DX 11-23-05 @ 65 yrs. old. Simple mastectomy RB 0.7 cm 1-6-06ER- 3+PR- 3+HER2/nev (herceptest) Negitive, 0+Main Sentinel Node - NegetiveArimidex 1mg. for next 5 years. Onc. Stopped the Arimidex, too much pain &* side effects. Evista 60mg. a day. No osteoporosis. No Chemo or radiation.
    Mother, lung, liver cancer, Aunt, BC, Sister, Bile Duct Liver cancer

  17. #17
    I'm curious as to how they assess the risk of recurrence. My tumor was 1.4cm and was ER and PR positive (97%). The first treatment facility I went to gave me a sheet that showed risk of recurrence with chemo, with hormone therapy and different combinations for the size and grade of my tumor. I just recently stopped the arimidex because I felt like I was 90 years old but my doctor's office is real concerned about it. I told them I wanted to see if the bloating and stiffness was due to the drug before they sent me on a round of tests for that. I've only been off it for 2 days and seem to be sleeping better. They don't want me going longer than a week without something. But if it really makes me feel better, I may quit completely. The risk analysis I got said that for my tumor size and grade and positive for hormones that the risk of recurrence after surgery alone was 25%. Chemo reduced it 7.3% and hormone therapy without chemo would reduce it 9.8%, but combined with chemo was 14.2%. This makes me wonder where the truth is because my cancer doesn't sound too different from yours, MomG. Although my tumor was Ductal Carcinoma, perhaps yours was the other one that is more likely to spread. Did you have radiation and chemo? I had both. Anybody know how to find out what the risk of recurrence is? I sometimes wonder if they make the risk sound worse to frighten us to stay on the drugs! I may be completely wrong about that and I certainly wouldn't want to encourage someone to stop the medication, but I am curious...... especially since quality of life issues may encourage me to quit.
    Debra

  18. #18
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    Debra, I never had a tumor, just a small mass of fibers at the top of right breast. It was the very slow growing kind, No nodes involved & it was so small they had a hard time finding it in the biopsy after my surgery. The onc in NY said, if I didn't take the Arimidex my chances was better than 70% of it ever coming back in the left breast and would be a very slow growing if it did. The Pathology's first diagnosis was: Infiltrating Ductal Adenocarcinoma & the ER/PR/Her2Nev came back negetive. I didn't have any chemo or radiation because I chose the complete Mastectomy. I am not at high risk and I am cancer free as of now. That's why I would rather take the 70% chance than to suffer with all these side effects & have to take loads of meds to deal with them. I agree with you, that I think the doctors do make it sound worse than it is to push some of these meds. Don't get me wrong, I thank God for all the meds they have to offer us to keep us alive & cancer free, but I do think some of this is unsessary suffering & it does seem that the doctors ignore what we say when we try to tell them about all our side effects & act like we are the only ones having a problem. I have had to go to hospital for test on my bladder & kidneys because they found blood & bacteria in them & also keep getting infections in my sinus & chest since starting the estegron blocker...... Seems my immuine system isn't up to par or something & I am taking all the right vitamins, etc....and 10 lbs. of fluid my body is retaining....so go figure...
    MomG DX 11-23-05 @ 65 yrs. old. Simple mastectomy RB 0.7 cm 1-6-06ER- 3+PR- 3+HER2/nev (herceptest) Negitive, 0+Main Sentinel Node - NegetiveArimidex 1mg. for next 5 years. Onc. Stopped the Arimidex, too much pain &* side effects. Evista 60mg. a day. No osteoporosis. No Chemo or radiation.
    Mother, lung, liver cancer, Aunt, BC, Sister, Bile Duct Liver cancer

  19. #19
    I am very thankful for the internet or I would think that I was crazy. When I had told my onc about the stiffness and sore joints, he told me that maybe I had arthritis. Although he was honest about Tamoxifen causing weight gain - my previous onc said it didn't and there were studies that proved it.

    A woman I knew who had breast cancer told me about a friend of her family's who had breast cancer and it was the lobular type - very likely to reappear in the other breast. She had a double masectemy right away even though it wasn't in the other breast. At the time I found it hard to understand, but now I do. In fact, if it did come back, I think I would seriously consider the same thing. I know it doesn't eliminate the risk completely because I have heard it can infect the tissue on the chest wall, but I do believe there's less chance of recurrence. This is day 3 without Arimidex. The stiffness is gone although my lower legs and feet hurt a bit - I think too much time over the weekend in flip flops! I feel more upbeat, don't know if it's all in my head or not, but so far so good. There is a website called www.adjuvantonline.com that my first onc used to determine chance of relapse. You have to register as a doctor to use it and I don't know what all the variables are - some were on my surgery sheets such as tumor grade and size. But it still looks like my chances of relapse are about less than 20% which my husband isn't happy about. But we'll see how it goes - my onc was talking about putting me on something else. I've already been on Tamoxifen and Arimidex, somehow I doubt anything else is going to be any better side effects wise.
    Debra

  20. #20
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    chronic pain

    I am glad to see other posts of women with lingering pain. I took Tamoxifen for about 6 months then the test showed that I did not metabolize it effectively. So I had a total hysterectomy and then started on Arimidex. I started having severe pain in my feet, like the bones were broken. It was so painful to walk. So I told my oncologist and she swicthed me to Aromasin, it is now the same thing again and I am about fed up with the pain. At least now I know I am not alone. I don't know if I can handle another 4 years of pain. Any suggestions??
    Charity
    Diagnosed at 31yo, now 33. Bilateral Mast. Stage 3 IDC, 2+ nodes. Triple +. AC/Taxol/Herceptin and 33 Rad treatments. Now on Aromasin after complete hysterecomy.

 
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