joint pain, especially hip pain

mtri
mtri Member Posts: 1
edited March 2014 in Breast Cancer #1
Hello everyone, I feel very lucky to have Stage 1, small tumor. And very blessed with my life all in all. My story: I am 3 week post 7 week radiation. I will probably choose not to take tamoxifen but will wait after I meet with my oncologist. My nutritionist and I may go with a vitamin approach. My concern is, I have severe hip pain and now more and more other joint pain. Since stopping birth control pills after the diagnosis ( I am 51) I went into full blown menopause as well. I am trying to be open minded about the stress of everthing, but going from running the Marine Corps marathon a year ago, to now having difficulty and pain when walking is a bit alarming. I did stop running when I was diagnosed due to the two surgeries and the incredible fatigue I felt through radition. I am a Nurse Practitioner by trade, so I am blessed with the knowledge base and cursed with having little faith in the medical community giving me an answer that makes sense. The realization on how primitive breast cancer treatment is and how little has been done on alternative methods has amazed and concerned me. Bottom-line, I just need to know if this is a normal side effect or may be just a side effect of my inactivity during radition treatment and my diagnosis. I was surprised how difficult the radition therapy was, and mostly how the medical community underplayed it. Many of you, have had chemo in addition to radiation, so I feel a bit like a complainer (a new characteristic I may add). So I apologize to those who have had a tougher battle. But as a health care provider, I need to educate my medical colleagues, big time. So, What's with the joint pain? I know I need a bone density scan, since my FSH/LH shows true menopause. But this joint pain seems out or proportion. Your kind thoughts and experience would be appreciated.

Comments

  • cruf
    cruf Member Posts: 908
    Hi! I was also a Stage 1 but I had a mastectomy and reconstruction so I didn't need radiation or chemo. I am taking Tamoxifen and have been for 3 years with no side effects other than those lovely hot flashes which are not improving with time. I was also thrown into menapause with the medication. I, too, have periods of joint pain mostly my left hip. I had it real bad for a while but figured it was from the tennis and using the Precore or treadmill. Did you ever think that maybe this isn't related to the radiation at all and maybe you have early arthritis or bursitis? Mine comes and goes and hasn't been as bad as it was initially. I did go for PT which helped a bit . I am a PT and do heavy lifting so I never let it rest. Try taking Celebrex or Vioox or the new med. Bextra. They all work well on joint pain and are easier on the stomach. Check with your Orthopedist and try some PT. Maybe all that will help. Good Luck! Let us know how you're doing. HUGS!! Cathy
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    Hi there, welcome to the site, tough club to get into, but you won't find better people anywhere else!
    First suggestion, GET A BONE SCAN!, also ask doc for CEA and CA27.29 levels.
    If you are post menopausal you don't want tamoxifen, which by the way works 33% BETTER if taken with Indole-3Carbinol aka cabbage, broccoli, brussel sprouts, etc. I-3C is the pill form.
    Anyway mtri, I suggest you ask your doc about femara or arimidex or aromasin. Femara has a high incidence of joint pain as a side effect.
    Hope this helps. I too am an advocate of alternative medicine. See my note "I wonder..." if CAM interests you.
    God bless! hummingbyrd
  • Designer
    Designer Member Posts: 22
    I think I am totally ignorant on this. I had both radiation and chemo at the same time. I took tamoxifin for maybe two months then stopped. I had a freind that had pretty much the exact same as me and she was saying she was going to a specialist for the pain. It is hard to get out of the bed some mornings. I was told this was a side effect. I found that if I take a packet of jello (flavored or plain) everyday it helps. It is suppose to take 3 months before you notice a difference But for me 3 days and it meant the difference in going to sleep at night or aching. This suggestion was made to me by a man that was suppose to die in 3 months and he is still alive after 8 years.
  • epgnyc
    epgnyc Member Posts: 137
    You're not a complainer....I think of it more as commentary. :-) Welcome! I too had a Stage I tumor and had a lumpectomy, re-excision, chemo and radiation. Following radiation I suddently turned into an ancient crone and my joints (particularly knee, ankle and hip) ached hideously - I could barely get up out of a chair. I discussed it with my oncologist who said there are some women who are thrown into an arthritis-like condition following chemo and/or radiation. He said originally they thought it was the result of Tamoxifen but because many of the women with the arthritic conditionweren't on it (like me -I'm ER/PR negative), they decided it had nothing to do with that. He said he could put me on Vioxx or Celebrex for the pain but I decided to go the more natural route. I'm taking glucosamine/condroiten and it did help some. But it was time that did the trick for me. Seven months after finishing radiation, the severe aching from my joints mostly clear up. Of course, all of this is very individual, but there's hope out there! Hang in. Ellen
  • bpcbrinks
    bpcbrinks Member Posts: 31

    Hi there, welcome to the site, tough club to get into, but you won't find better people anywhere else!
    First suggestion, GET A BONE SCAN!, also ask doc for CEA and CA27.29 levels.
    If you are post menopausal you don't want tamoxifen, which by the way works 33% BETTER if taken with Indole-3Carbinol aka cabbage, broccoli, brussel sprouts, etc. I-3C is the pill form.
    Anyway mtri, I suggest you ask your doc about femara or arimidex or aromasin. Femara has a high incidence of joint pain as a side effect.
    Hope this helps. I too am an advocate of alternative medicine. See my note "I wonder..." if CAM interests you.
    God bless! hummingbyrd

    Hi Hummingbyrd,
    I have heard of indole-3Carbinol pills but don't know where to find them. Can you help with this and also are there any yucky feelings that sometimes happens with herbal pills?

    By the way, I had asked my Onco about Indole-3 and of course his answer was eat three squares and take a mulit vitamin and not worry about it. He is a great doctor but I would like to take any ounce of prevention I can get.
    Thanks
    bpcbrinks
  • bpcbrinks
    bpcbrinks Member Posts: 31
    My advice to you is exactly what hummingbyrd recommended. I was diagnosed in 2001 with stage 2 (or 3 depending on who you ask) at 26yrs old. I already had knee and back problems but last year I started having lower back/hip pain. It took awhile to diagnose but it came back as a bone met. At first we all (primary care doctors included) wrote it off as arthritis and caring for a three year old. But it got worse and finally after doing a bone biopsy, it came back as cancer.
    I say this not to scare you, but when it comes to cancer (as I have learned) you need to take every precaution and rule out cancer for almost every pain you experience.
    Keep in mind as well that chemo and radiation is very hard on your body. So it very well may be residual effects from treatment. In either case, I highly recommend Vioxx. When my hip pain got really bad, the ortho doctor drugged me up on lots of narcotics. My onco doctor suggested Vioxx since they prescribe it for patients with bone pain from chemo. It worked!! without the zombie effect. I now take it every day and very rarely do I have the pain in my hip -- which makes it a lot easier to chase my 4 yr old.
    Good luck to you and I hope you feel better soon! One tip -- sometimes the best source of information is from other survivors!!
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    bpcbrinks said:

    Hi Hummingbyrd,
    I have heard of indole-3Carbinol pills but don't know where to find them. Can you help with this and also are there any yucky feelings that sometimes happens with herbal pills?

    By the way, I had asked my Onco about Indole-3 and of course his answer was eat three squares and take a mulit vitamin and not worry about it. He is a great doctor but I would like to take any ounce of prevention I can get.
    Thanks
    bpcbrinks

    I found info on the pdrhealth site. Haven't looked into it yet, but I'm guessing you have to have a prescription to get them.
    Best of luck, hummb.
    P.S. If you have any trouble finding website let me know.
  • DeeNY711
    DeeNY711 Member Posts: 476 Member
    Designer said:

    I think I am totally ignorant on this. I had both radiation and chemo at the same time. I took tamoxifin for maybe two months then stopped. I had a freind that had pretty much the exact same as me and she was saying she was going to a specialist for the pain. It is hard to get out of the bed some mornings. I was told this was a side effect. I found that if I take a packet of jello (flavored or plain) everyday it helps. It is suppose to take 3 months before you notice a difference But for me 3 days and it meant the difference in going to sleep at night or aching. This suggestion was made to me by a man that was suppose to die in 3 months and he is still alive after 8 years.

    I tried the jello with remarkable success! Thank you so much for suggesting it!
  • Designer
    Designer Member Posts: 22
    DeeNY711 said:

    I tried the jello with remarkable success! Thank you so much for suggesting it!

    DeeNY711
    Would like to hear how the jello helped you? you could email me at [email protected] I started taking it for tendonitis that I could not seem to get rid of before the cancer and find it helps even more now. It could never replace being checked out for what the problem is, but it sure helps with the dull tooth ach felling that can keep one awake at night. It was the only thing that got the tendons to heal.
  • marti54
    marti54 Member Posts: 8
    Designer said:

    I think I am totally ignorant on this. I had both radiation and chemo at the same time. I took tamoxifin for maybe two months then stopped. I had a freind that had pretty much the exact same as me and she was saying she was going to a specialist for the pain. It is hard to get out of the bed some mornings. I was told this was a side effect. I found that if I take a packet of jello (flavored or plain) everyday it helps. It is suppose to take 3 months before you notice a difference But for me 3 days and it meant the difference in going to sleep at night or aching. This suggestion was made to me by a man that was suppose to die in 3 months and he is still alive after 8 years.

    Designer,
    You say to take a packet of jello everyday.How do you take it-mixed with water and if so-how much,I need to try this as I am on Femara and have terrible joint and allover bone pain.
    Marti
  • Designer
    Designer Member Posts: 22
    I was told that as we get older we need the cartlig that jello provides. You can make it as regular jello and eat it. What I do is get the plain jello and find creative ways to mix it in things like juice or shakes. You can take the flavored kind and make a shake with milk and ice cream added to it. I was told you can buy it in tablets to take. (That way would be more exspensive.) You can even mix it in your food. Oatmeal for breakfast? the thing is you take one packet a day. I would love to here how this works for others and how long it takes to notice anything. I know pain killers do not help me at night to sleep and cortizone would not cure the tendonitise. But taking this helps me. No more tendonitis and a lot less pain.