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Wednesday, November, 11, 2009
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Featured ContentRadiation FAQs

Gain vs. Pain: Is It Time To Switch Back To Tamoxifen?

PJ Hamel
PJ Hamel
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PJ Hamel is happy to be alive. As always.
Author, breast cancer survivor

Writer, mother, wife, volunteer, and survivor: PJ Hamel joins the...

PJ Hamel

Thursday, June 04, 2009
View All of PJ Hamel's Posts
Are you a postmenopausal survivor taking an aromatase inhibitor to prevent a recurrence?Whether you answer yes or no to the question above, keep reading. Because if you’re a breast cancer survivor taking hormonal therapy (as about 80% of us are), this post applies to you: either now, or in the ...
  1. Thanks, P.J.
    Barbara Lee
    Friday, June 05, 2009 at 12:09 AM

    Your research and post is so helpful to all those who are in this exact spot.  Thank you thank you.

    Reply
    re: Thanks, P.J.
    PJ Hamel
    Friday, June 05, 2009 at 06:03 AM

    It's all so iffy still, Barbara... but it would be something to at least ask the doctor. I take Arimidex, and the way I feel right now, I'm definitely going to pose the question! PJH

    Reply
  2. Thank you
    Phyllis Johnson
    Friday, June 05, 2009 at 05:56 AM

    PJ thank you for such a clear explanation about the difference between these types of drugs and for the reminder that we make the choices about our health care balancing risks and benefits in an informed way.

    Reply
  3. Untitled Comment
    mtnmamuh
    Saturday, June 06, 2009 at 01:41 PM

    This is very interesting.  I'm curious what what you know about those of us on AI's that are taking a bisphosphanate (bone strengthener).  I'm in a clinical trial taking Ibandronate.  It's my understanding it is supposed to help with bone strength and decrease the change of metastises to the bones.  Thank you.

    Reply
    re: Untitled Comment
    PJ Hamel
    Saturday, June 06, 2009 at 07:10 PM

    Hi - Not sure what the question is. I'm on Arimidex and taking Actonel... I do know that Arimidex causes bone loss, and it's pretty critical to stop the loss with a calcium-rich diet and supplements, vitamin D, weight-bearing exercise, and usually drugs of some kind, often a bisphosphonate. Good luck with the trial - hope it works for you. PJH

    Reply
  4. About Femara
    sph63
    Monday, June 08, 2009 at 05:42 PM

    I Was Diagnosed With Breast Cancer A Year Ago. I Took Radiation Treatments And I Am On Femara. I Have Read All About The Side Effects Of Femara, And I Am Having Problems , At Least 4 Of Them So Far. I Have Nausea, Fatigue, And Very Severe Pain All Over. My Feet Swells So Bad, I Can Hardly Walk. Why Are These Drugs Causing So Much Pain And  Discomfort, If They Are Supposed To Be Helping? Thank You.Undecided

    Reply
    re: About Femara
    PJ Hamel
    Monday, June 08, 2009 at 05:46 PM

    I'm so sorry for all your problems. Femara IS helping; AND it's causing you severe side effects. You need to balance quality of life vs. how much it's helping; have you spoken with your oncologist about this? You might try switching to another AI, or you might even go to tamoxifen, which would be slightly less effective, but might relieve you of your current side effects (although it might bring with it other, different side effects). It's a tough situation, I know... PJH

    Reply
  5. ALS
    Anonymous
    Wednesday, June 10, 2009 at 12:05 PM

    I am a breast cancer survivor, now taking Femara.  I did not know that this drug had anything to do with our bones or muscels. I just had my left rotar cuff repaired, it was massive.  I'm looking at 4 months rehad, and my right rotar cuff needs repair also. Does anyone else have this connection?  Did any of you out there think your BS was caused by HRT?

    Reply
    re: ALS
    PJ Hamel
    Wednesday, June 10, 2009 at 12:36 PM

    I just had a rotator cuff repair in February (and need one in the other shoulder), but I don't think it's due to my taking an AI... it was bone spurs macerating the muscle, in my case. Though who knows, bottom line... PJH

    Reply
  6. Is it conincidental?
    Haralee
    Wednesday, June 10, 2009 at 07:28 PM

    I stopped Arimidex and all because of bone aches. I looked at the stats and made the choice for myself that no aches was what I wanted.

    I have been in an exercise study to increase bone density and in chatting with the other members all breast cancer survivors, there are so many of us that have had knee surgeries, meniscus. I mentioned this to the principal doctor who says another doctor is looking at knee and shoulder injuries and like the chicken and the egg, which came first breast cancer of the injury? Is it an old injury, is it the age of the person or is it a coincidence??

    Reply
    re: Is it conincidental?
    PJ Hamel
    Wednesday, June 10, 2009 at 08:45 PM

    Indeed - is it natural, with age, to have these problems anyway? Did having breast cancer exacerbate them? Do AIs make them worse? We surely don't know the answer now - maybe in the future. I'm hanging in with Arimidex one more year, then off - after 5 years + 3 years of tamoxifen, ENOUGH. PJH

    Reply
    re: Is it conincidental?
    Gardener
    Thursday, June 18, 2009 at 01:24 PM

    I am stopping Arimidex too, and am interested in the exercise study you're doing.  I've started walking but would like to do more to improve.  Is the study you're in still open? Good lulck to you, and thanks.

    Reply
    re: re: Is it conincidental?
    Haralee
    Thursday, June 18, 2009 at 07:41 PM

    Hello,

    Our study is closed. It has been wonderful. I am one of those people who does better in an exercise class than on my own! We do jumping which jars the bones and lots of squats. It is tough but so worth it. I would recommend looking in your area for exercise classes for breast cancer survivors or Prostate cancer survivors or for people with osteoporosis. It is important to do the exercises correctly so not to injure a body part.

     

    FYI, I had carpal tunnel on both hands a year after chemo and radiation. I don't do now or have ever done repetitive motion. An oncology nurse told me she had it when she was pregnant and when she gave birth it went away. I gained 40 pounds with my cancer and that may have simulated the same situation as the nurse, except I didn't give birth! Had the surgery on both hands and knew it worked in recovery.

    Wishing you the best.

    Reply
    re: re: re: Is it conincidental?
    Gardener
    Thursday, June 18, 2009 at 09:13 PM

    Thanks so much for your reply!  I will definitely look for a class.  My husband and I have started walking laps around our city park, but I think something more intense would help.  I'm stopping the Arimidex and hope that will help with the carpal tunnel - if not, I guess it will be surgery for me, too.

    Thanks again!

    Reply
  7. Yes
    Gardener
    Thursday, June 18, 2009 at 01:20 PM

    My answer is yes, and I've been taking Arimidex for ten months.  I now have severe carpal tunnel syndrome in both hands, and bones have deteriorated 9% since my bone density test last year.  Severe pain in hand, hip and knee.  I'm planning to stop Arimidex, and my doctor said tamoxifen wouldn't be suitable for me.

    Reply
  8. arimidex and hormone-producing ovaries
    Peace
    Thursday, June 18, 2009 at 03:05 PM

    "Arimidex won't work if the ovaries are still producing hormones"  I didn't know that. Where can you find that information?

    I had my hysterectomy long ago but the ovaries are still in tact. I am post menopausal, so how can one know whether the ovaries are still producing hormones or not? ER and PR can also be produced from other parts of the body too, are there different kinds of estrogens and progesterones?  

     

    Thank you so much for your comments! I would appreciate it! 

    Reply
    re: arimidex and hormone-producing ovaries
    PJ Hamel
    Thursday, June 18, 2009 at 05:26 PM

    Maybe I wasn't clear enough here - aromatase inhibitors aren't prescribed unless you're postmenopausal. When you're past menopause, your ovaries are no longer producing significant estrogen. Yes, it comes from other parts of your body but the ovaries are the main producer. So, since you're past menopause, an AI would be appropriate for you. PJH

    Reply
    re: re: arimidex and hormone-producing ovaries
    Peace
    Thursday, June 18, 2009 at 07:32 PM

    You are really fast ! Thank you for putting me back in peace again! Laughing

    Reply
  9. Untitled Comment
    nanette
    Thursday, June 18, 2009 at 04:48 PM

    hello. im nanette, remember me? lol prob not. but, anyways i just found out im stage 2 breast cancer and am on tamoxifen. i do get joint pain in my hands and legs. my oncologist gives me aspirin with codeine hahaha not working. my daughter has to give me cortisone shots and they work, for now ,real good. shes in the medical field as i am thank God. im still waiting 2 years later for my assymetry. ive paid the plastic surgeon. `ive heard that tamoxifen makes you fat. i will not accept that. im an active woman and thats not gonna happen. im finally getting the brca test as my sister now has stage 2 breast cancer too. what a crazy disease. thx for informing everyone. nanette 

    Reply
    re: Untitled Comment
    PJ Hamel
    Thursday, June 18, 2009 at 06:23 PM

    Nanette - Great attitude! Exercise, watch what you eat - tamoxifen encourages weight gain, but you can fight it! Good luck- PJH

    Reply
  10. Pain with Femara
    Anonymous
    Thursday, June 18, 2009 at 10:45 PM

    I have been taking Femara for almost 3 years with enough joint pain to want to stop and live my normal life again, but I was more afraid of a recurrance than going back to living like a 50 year old with a very active lifestyle.  I have never been into suppliments but since I started on Femara I have been religious about taking Calcium and Vit. D.  Six months ago I started taking 1200 mg of fish oil since I read it was good for your heart and to my surprise within 2 months I realized I was pain free.  I am not sure exactly when I became pain free but I was down on the floor and got up quickly without crawling up with the help of another object and I was shocked.  I was my normal pain free self.  I told my doctor about it but he said he didn't think it had anything to do with it.  I wasn't taking it to prevent pain so I know it was not a subconscious thing.  I did ask him if by chance it was preventing my Femara from working, as the pain started immediately when I started taking it.  He assured me it was not inactivating it.  I thought I would share this with anyone that is having joint pain with Femara as I know I was feeling like I had the joints of an 80 year old and I was getting weak muscles from not being able to move the way I used to.  I am now back to walking miles briskly and dancing.  I even started tap dancing classes and have gotten my strength in my legs back.  I travel a lot and it's great to be back into my normal active world again.  I can climb and hike the way I used to without limping along the way.  If it can't hurt you, it isn't very expensive and I would suggest trying it. 

    Reply
    re: Pain with Femara
    PJ Hamel
    Friday, June 19, 2009 at 05:59 AM

    WOW, what a great success story with something that's so easy to obtain - fish oil capsules. I'll bet there are a lot of women out there who'll try this on your recommendaiton. Thanks!

    Reply
  11. Joint Pain
    Carol
    Friday, June 19, 2009 at 07:23 PM

    I took Tamoxifin for about 14 months.  Last October I had my ovaries removed and then started Arimidex.   The joint pain was nearly unbearable.   I finally started an exercise program.   It has helped tremendously.  I still have discomfort and stiffness, but at least I can walk without the excrutiating pain.

    Reply
    re: Joint Pain
    PJ Hamel
    Friday, June 19, 2009 at 09:32 PM

    Carol, I noticed that, too. When I exercise, I feel better. Getting out of bed in the morning is the worst - as soon as I get to the gym or out onto the road for a brisk walk, I immediately start to feel better. So - keep up the good work! PJH

    Reply
  12. AI's
    LKB653
    Tuesday, June 23, 2009 at 01:04 PM

    I took Arimidex until I could barely walk.  I did the Race for the Cure one year and was couch bound for 2 days afterward.  I switched to Tamoxofin and have had no joint pain, just the other lovely side effects that come with Tamoxofin.  I am having a D&C Thursday because I am having uterine issues and they need to rule out that kind of cancer as it is a side effect of Tamoxofin.  I have 6 months left on it and then I will be done as it has been 5 years.  I for one could not take the side effects of the AI's.  I felt like I was 100 years old. 

    Reply
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