bone/joint pain

alta29
alta29 Member Posts: 435 Member
edited March 2014 in Breast Cancer #1
I really dont post a lot here because I also have colon cancer (stage 4) and that's our biggest concern right now, but to make a long story short I was dx back in Dec. with breast cancer ( I only had radiation because it wasnt in my lymph nodes) Anyways, every single bone in my body hurts...I walk like an 90 year old lady (Im 46 )and I wanted to know if you have experienced this kind of pain....the pain is getting pretty severe, and I don't even wanna think abount cancer spreding into my bones. I have heard that arimidex can cause this...
Thanks

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    Alta....
    Well, we meet again! I, too, won the double prize. My rectal cancer was only stage 3, so a little different, and my breast cancer was invasive and in the nodes....

    Are you in chemo on the CRC now? Are you getting Neulasta shots? This can cause joint/bone pain. Also, ask your onc about a Dexa Scan to check your bone density. I became osteoporotic during my treatment (either the colon or the breast cancer chemo....sigh).

    Are you taking arimidex???? If so, DEFINATELY ask for a bone density scan....this drug robs bone of its density.....you may need to get a script like I take, Actonel, that INCREASES bone density. Also, I was started on Tamoxifen, because this has less bone robbing side effects. PLEASE talk to your oncologist as soon as you can.

    Hugs, Kathi
  • roxanne53
    roxanne53 Member Posts: 154
    I have not been posting much either. But today was going to ask almost the same question you have.
    I am on Arimidex for Breast cancer. stage 3a. I have pain and aches in my joints and bones, too. I am 52 and walk like an old lady at times. I have had the bone density test too. Am on the fosmax weekly. I am not sure this is helping the pain but will keep bones from breaking down.

    MY question was going to include:
    I am wondering about the possibility of fibromyalgia from the affects of chemo, arimidex, etc treatments? My muscles can ache in the strangest places, and I have good muscles??
    My arthritis seemed to increase exponetionally after the chemo, etc.too.

    !I do suggest you talk with your Oncologist. That is where I started with all these aches and pains.He can refer for bone density, and get the meds you need to keep the bones from getting more osteoprosis.
    My bone density test showed osteopenia. Which is just short of osteoporosis. I guess.

    Best REgards.
    Roxanne53
  • Susan956
    Susan956 Member Posts: 510
    Yes, joint and bone pain seems to come with the territory. I find that trying to stay active and walk helps with the pain. It helps me to keep my joints from getting as stiff. Arimidex while it is a life saver for us... it does come with side effects. I keep trying to put mind over matter and stay busy. The busier I stay the less time I think about how stiff I am. It is normally when I slow down that I let myself dwell on how stiff I am and how much I hurt.... But then I just try to get moving again.

    By the way if your joint pain is primarily in one area, I had really bad pain in my shoulder and arm on my surgery side. I found that deep tissue massages really help. Went to a Chiropractor, when the Orthopedist could give me no relief.. I always thought Chiropractors were quacks... but it has been a God Send... I have gone from barely being able to use my surgery arm.. to being back in my garden planting srubs and flowers again... Guess you can tell I love my garden...

    I have come to realize that alternative medicines that I never would have considered before... are actually a good thing when in combination with traditional medicine...

    Also try to eat as healthy as you can. If you are still taking Chemo for Colon cancer however, I know that may not be possible.

    Take Care... God Bless....

    Susan
  • kathydaly
    kathydaly Member Posts: 81
    You're reference to arimidex is unclear as to whether you are indeed taking it. But it sounded like 99% to me that you are.

    I've only had BC 3x's in the past 16 yrs. God bless you and Kathi in your dual battle(sounds like you and she should be e-mailing each other for info and support, since your beast's are so similiar).

    I was so happy to see you refer to your battle as "our biggest concern". It really means soooo much to have your husband, boyfriend, etc. able to be involved and supportive. My husband was not able to be even mildly involved in a supportive way (emotionally or physically) until this 3rd time. The loss and stress of his availability has been enormous.

    After the 1st invasion (lol, I love these warrior-like analogies) of the BC I was on tamoxifen for 5 yrs. While uncomfortable for several reasons, it was absolutely bearable and doable.

    Then, after 2nd invasion 14 yrs. later(no nodes), I was put on "THE DEVIL" arimidex (my assessment only, lol) with really no expectation or knowledge that there could be worse side-effects than tamoxifen.

    I must have had every reaction possible anddddd suffered through them for 8 mos. until i had an inkling it could be the arimidex.

    They began slowly, unnoticeably, and just kept gathering momentum, until they became unbearable.

    Yes, walking like an 96 yr. old women, almost all day.
    Diarrhea 5x's a day.
    So fatigued.
    Arthritic pains in my knee joints, hands and fingers, ankles, etc.(bad ones).
    Startling and crippling pains in feet, leg limbs, and hands.
    Hot Flashes that were way worse than the ones w/tomaxifen, and they were bad.
    Sleep deprivation all the time, because of the severe hot flashes then i'd get to sleep and the limb, joint back pain, and/or neck pain would wake me again.
    Memory recall problems, that included word recall problems, that I know was the med.
    Weight gain.
    Also, other leg pains and hand pains that were shooting, knifelike.
    Depression.
    Neck pain also.
    Broke 2 ribs, and tail bone separately, too easily.
    finally, vertigo for like 3 or 4 sec.'s, but I was driving at both of the times. Very Scary.


    At that point, I had just realized that these were all due to the arimidex and had already decided my quality of life was so bad I just couldn't take it any more.
    I called my oncologist at the vertigo point, just before Thanksgiving last year and they told me to stop it immediately. I already had, 2 days before that. She wanted me to start on aromasin then, but I was unwilling to start it until the other side-effects were gone, that took nearly 6 mos., (May '06). I had my 3rd reoccurance in July '06 (or it was found then). I have now started aromasin and just finished a month's worth. I could say more about that but your question was about the arimidex.

    One last point, my oncologist told me she has had only 3 other patient's who have had to stop due to the amount and severity of the side-effects. She is one of the top BC oncologist's at Memorial Sloan-Kettering Hospital here in N.Y.C.
    So, she see's a lot of patients.

    I just could not handle it.

    Talk to your oncologist,see what she/he says. I bet you will get reassurance this bone pain is not about it spreading into your bones, also think about when your last bone scan was, perhaps just before you started arimidex, and that may be reassuring until you talk to your oncologist.

    Love and prayers for you ((((((((Alta))))))))
    Kathy
  • roxanne53
    roxanne53 Member Posts: 154
    kathydaly said:

    You're reference to arimidex is unclear as to whether you are indeed taking it. But it sounded like 99% to me that you are.

    I've only had BC 3x's in the past 16 yrs. God bless you and Kathi in your dual battle(sounds like you and she should be e-mailing each other for info and support, since your beast's are so similiar).

    I was so happy to see you refer to your battle as "our biggest concern". It really means soooo much to have your husband, boyfriend, etc. able to be involved and supportive. My husband was not able to be even mildly involved in a supportive way (emotionally or physically) until this 3rd time. The loss and stress of his availability has been enormous.

    After the 1st invasion (lol, I love these warrior-like analogies) of the BC I was on tamoxifen for 5 yrs. While uncomfortable for several reasons, it was absolutely bearable and doable.

    Then, after 2nd invasion 14 yrs. later(no nodes), I was put on "THE DEVIL" arimidex (my assessment only, lol) with really no expectation or knowledge that there could be worse side-effects than tamoxifen.

    I must have had every reaction possible anddddd suffered through them for 8 mos. until i had an inkling it could be the arimidex.

    They began slowly, unnoticeably, and just kept gathering momentum, until they became unbearable.

    Yes, walking like an 96 yr. old women, almost all day.
    Diarrhea 5x's a day.
    So fatigued.
    Arthritic pains in my knee joints, hands and fingers, ankles, etc.(bad ones).
    Startling and crippling pains in feet, leg limbs, and hands.
    Hot Flashes that were way worse than the ones w/tomaxifen, and they were bad.
    Sleep deprivation all the time, because of the severe hot flashes then i'd get to sleep and the limb, joint back pain, and/or neck pain would wake me again.
    Memory recall problems, that included word recall problems, that I know was the med.
    Weight gain.
    Also, other leg pains and hand pains that were shooting, knifelike.
    Depression.
    Neck pain also.
    Broke 2 ribs, and tail bone separately, too easily.
    finally, vertigo for like 3 or 4 sec.'s, but I was driving at both of the times. Very Scary.


    At that point, I had just realized that these were all due to the arimidex and had already decided my quality of life was so bad I just couldn't take it any more.
    I called my oncologist at the vertigo point, just before Thanksgiving last year and they told me to stop it immediately. I already had, 2 days before that. She wanted me to start on aromasin then, but I was unwilling to start it until the other side-effects were gone, that took nearly 6 mos., (May '06). I had my 3rd reoccurance in July '06 (or it was found then). I have now started aromasin and just finished a month's worth. I could say more about that but your question was about the arimidex.

    One last point, my oncologist told me she has had only 3 other patient's who have had to stop due to the amount and severity of the side-effects. She is one of the top BC oncologist's at Memorial Sloan-Kettering Hospital here in N.Y.C.
    So, she see's a lot of patients.

    I just could not handle it.

    Talk to your oncologist,see what she/he says. I bet you will get reassurance this bone pain is not about it spreading into your bones, also think about when your last bone scan was, perhaps just before you started arimidex, and that may be reassuring until you talk to your oncologist.

    Love and prayers for you ((((((((Alta))))))))
    Kathy

    wow
    You have listed alot of the side effects that does happen to me with Arimidex on a regular basis. I have had BC 2x.

    To KathyH and Alta29~God Bless You both~
    To Kathydaly~God Bless you

    Prayers to you all.
    Roxanne53
  • 24242
    24242 Member Posts: 1,398 Member
    roxanne53 said:

    wow
    You have listed alot of the side effects that does happen to me with Arimidex on a regular basis. I have had BC 2x.

    To KathyH and Alta29~God Bless You both~
    To Kathydaly~God Bless you

    Prayers to you all.
    Roxanne53

    These pains can debilitating and mine were. Yes the many problems I have had to cope with and still do today are directly linked to the treatments given, including surgery. I am here to say if we concentrate on having quality to our lives and willing to try things that may help ourselves we will find things that can reduce the pain felt. Often working with pain specialist can help to pin point problems and get medical help in dealing with them. After being in pain for years these impulses are searing into our brain memory and takes along time to control. One must bite pain in the butt and they know an awful lot about pain and the ramifications of allowing it to continue in our bodies. They know more now than they did 9 years ago that is for sure. Side effects are there and need to be addressed sometimes.
    Tara
  • kathydaly
    kathydaly Member Posts: 81
    Alta--

    Thank You for the blessing. I am happy that what I wrote could resonate for you. I just thought I was going crazy while I was going through this. I was going to the pain clinic at Memorial at the same time, and they put me through a lot of testing first and foremost to make sure that they(the pains) were not related to any other kind of reoccurance, which thankfully they were not.

    For myself, and only for myself, can I say I couldn't do it anymore.
    I had no quality of life on it.
    We are all different and can only do what we are capable of.
    I just didn't want you to feel alone out there with any of these pains.

    Love and prayers, as I try to do for all of us everyday, Kathy
  • kathydaly
    kathydaly Member Posts: 81
    Sorry, my mistake to address last note to
    alta instead of Roxanne, oops, lol.
  • roxanne53
    roxanne53 Member Posts: 154
    kathydaly said:

    Alta--

    Thank You for the blessing. I am happy that what I wrote could resonate for you. I just thought I was going crazy while I was going through this. I was going to the pain clinic at Memorial at the same time, and they put me through a lot of testing first and foremost to make sure that they(the pains) were not related to any other kind of reoccurance, which thankfully they were not.

    For myself, and only for myself, can I say I couldn't do it anymore.
    I had no quality of life on it.
    We are all different and can only do what we are capable of.
    I just didn't want you to feel alone out there with any of these pains.

    Love and prayers, as I try to do for all of us everyday, Kathy

    Thank you.
    I am going to remain on arimidex as long as I can. It is suppose to be the best drug for me. Several talks with the oncologist has happened surrounding this. My quality of life is not severely jeopardized at this point. I did have to go through several scans because of possible recurrence thing like you.
    In April, I go through the scans again. I do wonder if that will be it then. Because I am not finally on the 6 month rechecks.

    Thank you for your support. Others around me do not always get the grasp of what is going with medications that I have to take; and what it means in side effect language.
    Take of yourself and GBY
    Huggs, too
    Roxanne53
  • lvblondblu
    lvblondblu Member Posts: 1
    kathydaly said:

    You're reference to arimidex is unclear as to whether you are indeed taking it. But it sounded like 99% to me that you are.

    I've only had BC 3x's in the past 16 yrs. God bless you and Kathi in your dual battle(sounds like you and she should be e-mailing each other for info and support, since your beast's are so similiar).

    I was so happy to see you refer to your battle as "our biggest concern". It really means soooo much to have your husband, boyfriend, etc. able to be involved and supportive. My husband was not able to be even mildly involved in a supportive way (emotionally or physically) until this 3rd time. The loss and stress of his availability has been enormous.

    After the 1st invasion (lol, I love these warrior-like analogies) of the BC I was on tamoxifen for 5 yrs. While uncomfortable for several reasons, it was absolutely bearable and doable.

    Then, after 2nd invasion 14 yrs. later(no nodes), I was put on "THE DEVIL" arimidex (my assessment only, lol) with really no expectation or knowledge that there could be worse side-effects than tamoxifen.

    I must have had every reaction possible anddddd suffered through them for 8 mos. until i had an inkling it could be the arimidex.

    They began slowly, unnoticeably, and just kept gathering momentum, until they became unbearable.

    Yes, walking like an 96 yr. old women, almost all day.
    Diarrhea 5x's a day.
    So fatigued.
    Arthritic pains in my knee joints, hands and fingers, ankles, etc.(bad ones).
    Startling and crippling pains in feet, leg limbs, and hands.
    Hot Flashes that were way worse than the ones w/tomaxifen, and they were bad.
    Sleep deprivation all the time, because of the severe hot flashes then i'd get to sleep and the limb, joint back pain, and/or neck pain would wake me again.
    Memory recall problems, that included word recall problems, that I know was the med.
    Weight gain.
    Also, other leg pains and hand pains that were shooting, knifelike.
    Depression.
    Neck pain also.
    Broke 2 ribs, and tail bone separately, too easily.
    finally, vertigo for like 3 or 4 sec.'s, but I was driving at both of the times. Very Scary.


    At that point, I had just realized that these were all due to the arimidex and had already decided my quality of life was so bad I just couldn't take it any more.
    I called my oncologist at the vertigo point, just before Thanksgiving last year and they told me to stop it immediately. I already had, 2 days before that. She wanted me to start on aromasin then, but I was unwilling to start it until the other side-effects were gone, that took nearly 6 mos., (May '06). I had my 3rd reoccurance in July '06 (or it was found then). I have now started aromasin and just finished a month's worth. I could say more about that but your question was about the arimidex.

    One last point, my oncologist told me she has had only 3 other patient's who have had to stop due to the amount and severity of the side-effects. She is one of the top BC oncologist's at Memorial Sloan-Kettering Hospital here in N.Y.C.
    So, she see's a lot of patients.

    I just could not handle it.

    Talk to your oncologist,see what she/he says. I bet you will get reassurance this bone pain is not about it spreading into your bones, also think about when your last bone scan was, perhaps just before you started arimidex, and that may be reassuring until you talk to your oncologist.

    Love and prayers for you ((((((((Alta))))))))
    Kathy

    I had stage 3 ductal with 4 positive nodes. After treatment, they wanted me to go on Arimidex. I tried for nearly a year and had all those symptoms you describe. I was told at MD Anderson that they don't see that reaction often, but, they have seen it. I have sensitivities to most meds. Now, I am on Tamoxifin and my hair is thinning. But, it ever so much more tolerable for me than the Armidex and Femara.
    Sharon
  • roxanne53
    roxanne53 Member Posts: 154
    roxanne53 said:

    Thank you.
    I am going to remain on arimidex as long as I can. It is suppose to be the best drug for me. Several talks with the oncologist has happened surrounding this. My quality of life is not severely jeopardized at this point. I did have to go through several scans because of possible recurrence thing like you.
    In April, I go through the scans again. I do wonder if that will be it then. Because I am not finally on the 6 month rechecks.

    Thank you for your support. Others around me do not always get the grasp of what is going with medications that I have to take; and what it means in side effect language.
    Take of yourself and GBY
    Huggs, too
    Roxanne53

    correction
    I am on 6 month checks now. Just started.