Here I am again...

mgm42
mgm42 Member Posts: 491 Member
edited March 2014 in Breast Cancer #1
I'm a three year survivor, but here I come again with a problem. No, it's not a recurrence, but it's my tamoxifen. I may be faced with the decision to go off all estrogen blocking drugs within the next couple of weeks because of a severe allergic reaction. Evidently, my body cannot tolerate any meds that alter my body's chemistry. After two years, I was taken off of AI's because of severe muscle cramping throughout my body. And now after being on Tamoxifen for one year, the same thing. I'm talking neck, torso, arms, hands, legs, shoulders and feet. At times I am disabled. My PA has it in her head that it's MS. We'll, I've had the tests, seen the rheumatologist, and learned that "yes" it was most likely a severe reaction to the medication. After three years of believing I was doing the right thing for my body, I may have to go off of these drugs. Has anyone else had this experience? Also, what about Evista? Any input would be greatly appreciated.

Comments

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #2
    tamoxifen about 18mths now
    So far I have lucked out for the most part...mild hot flashes (menopause at same time all the DC started)I do have servere leg and foot cramps!

    sorry you are having issues
  • mgm42
    mgm42 Member Posts: 491 Member
    #3
    disneyfan2008 said:

    tamoxifen about 18mths now
    So far I have lucked out for the most part...mild hot flashes (menopause at same time all the DC started)I do have servere leg and foot cramps!

    sorry you are having issues

    Thanks for your comment. I
    Thanks for your comment. I did expect the hot flashes and leg and foot cramps. I started drinking diet quinine (tonic) with a bit of orange juice, which seemed to alleviate the severity of those cramps. But, I can't deal with the rest of them.
  • carkris
    carkris Member Posts: 4,553 Member
    #4
    mgm42 said:

    Thanks for your comment. I
    Thanks for your comment. I did expect the hot flashes and leg and foot cramps. I started drinking diet quinine (tonic) with a bit of orange juice, which seemed to alleviate the severity of those cramps. But, I can't deal with the rest of them.

    dont have these issues
    dont have these issues overall more aches and pains. hope someone can answer you . and you find an alternative.
  • mwallace1325
    mwallace1325 Member Posts: 806
    #5
    I was on femera and anastrozole
    Femera gave me a list of truly disabling side effects. After 7 months I stopped taking it and 3 months later tried anastrozole. That only game me one side effect -- extreme shortness of breath. I couldn't go from on end of my house to the other without having to stop and catch my breath. I could stand to lose 10 pounds, sure, but nothing to explain this, and I haven't smoked in 17 years. I stopped the anastrozole after having a battery of tests and finding no other explanation. I'm now feeling fine, less than a month later. I've decided that I'm going to put it in God's hands (as it is anyway) and just pray that I'll be fine without the additional four years of drugs. Breathing is really a good thing and I missed it. I'm trying to stay away from soy, but at this point that's all I'm going to do.

    Don't know if this will help. Hopefully whatever you decide to do will have only positive results for you.

    marge
  • mgm42
    mgm42 Member Posts: 491 Member
    #6
    mwallace1325 said:

    I was on femera and anastrozole
    Femera gave me a list of truly disabling side effects. After 7 months I stopped taking it and 3 months later tried anastrozole. That only game me one side effect -- extreme shortness of breath. I couldn't go from on end of my house to the other without having to stop and catch my breath. I could stand to lose 10 pounds, sure, but nothing to explain this, and I haven't smoked in 17 years. I stopped the anastrozole after having a battery of tests and finding no other explanation. I'm now feeling fine, less than a month later. I've decided that I'm going to put it in God's hands (as it is anyway) and just pray that I'll be fine without the additional four years of drugs. Breathing is really a good thing and I missed it. I'm trying to stay away from soy, but at this point that's all I'm going to do.

    Don't know if this will help. Hopefully whatever you decide to do will have only positive results for you.

    marge

    Yes, it does help...
    Oh Marge, it certainly does help. After doing this for three years, I'm feeling as though my doctors think I'm a cry baby and can't tolerate a little discomfort. I will be tested for magnesium, calcium, Vit D and potassium levels - again. If they show normal, like you, I will put it in the Lord's hands and pray that this will be a prayer answered. Thanks for responding. Marilynn
  • mwallace1325
    mwallace1325 Member Posts: 806
    #7
    mgm42 said:

    Yes, it does help...
    Oh Marge, it certainly does help. After doing this for three years, I'm feeling as though my doctors think I'm a cry baby and can't tolerate a little discomfort. I will be tested for magnesium, calcium, Vit D and potassium levels - again. If they show normal, like you, I will put it in the Lord's hands and pray that this will be a prayer answered. Thanks for responding. Marilynn

    Your decision
    I'm glad my story helped. Please make sure you have all the tests possible before you make the decision to stop the meds. I feel it was the right decision for me, and hope whatever you decide you're at peace with that decision and I'll pray you never have to have any regrets.

    Good luck.

    marge
  • susie09
    susie09 Member Posts: 2,930
    #8
    mgm42 said:

    Thanks for your comment. I
    Thanks for your comment. I did expect the hot flashes and leg and foot cramps. I started drinking diet quinine (tonic) with a bit of orange juice, which seemed to alleviate the severity of those cramps. But, I can't deal with the rest of them.

    I don't take tamox, so, I
    I don't take tamox, so, I don't know about this. But, want to tell you that I am hoping that you feel better.
  • gagee
    gagee Member Posts: 332
    #9
    similar here
    I was on Arimidex for 3 months and had terrible side effects. Pain in all my joints, swelling in my feet,hands,arms,ankles, and anywhere else you could swell. Went to a new onc. and she has me off the arimidex for 7 weeks and still in lots of pain. She sent to see a rhumatolgist and he put me on 2 new meds for arthritis and did blood work. Hoping this will help and I can be more normal. May have to go back on some sort of hormone blocker as that is what my cancer likes.... hormones. Just want to get out of all this pain. Had lumpectomy on Aug. 2nd and been a mess ever since.

    My prayers are with you and all facing this devil... cancer. We have to fight and keep going on... just not in so much pain.

    Hugs to You,
    Diana
  • New Flower
    New Flower Member Posts: 4,294
    #10
    gagee said:

    similar here
    I was on Arimidex for 3 months and had terrible side effects. Pain in all my joints, swelling in my feet,hands,arms,ankles, and anywhere else you could swell. Went to a new onc. and she has me off the arimidex for 7 weeks and still in lots of pain. She sent to see a rhumatolgist and he put me on 2 new meds for arthritis and did blood work. Hoping this will help and I can be more normal. May have to go back on some sort of hormone blocker as that is what my cancer likes.... hormones. Just want to get out of all this pain. Had lumpectomy on Aug. 2nd and been a mess ever since.

    My prayers are with you and all facing this devil... cancer. We have to fight and keep going on... just not in so much pain.

    Hugs to You,
    Diana

    Hi Marylin
    welcome back we missed you here. I was on Tamoxifen for 15 moths had fatigue and sleeping problems and then my body adapted to it and I was ok. After 15 months on Tamoxifen I was switched to Arimidex. After 5 months on it developed a hand and palm pain my fingers were swollen, hip and low back pain and vomiting. I was taken off Arimidex 6 weeks ago. Several side effects disappeared, however both hand pain and fingers swelling are still there. I will see my oncologist on 25.
    Hugs
  • Angie2U
    Angie2U Member Posts: 2,991
    #11
    mgm42 said:

    Yes, it does help...
    Oh Marge, it certainly does help. After doing this for three years, I'm feeling as though my doctors think I'm a cry baby and can't tolerate a little discomfort. I will be tested for magnesium, calcium, Vit D and potassium levels - again. If they show normal, like you, I will put it in the Lord's hands and pray that this will be a prayer answered. Thanks for responding. Marilynn

    Saying a prayer for you
    Saying a prayer for you mgm42 that your discomfort will disappear. Good to see you back on, but, sorry for the reason.


    Hugs, Angie
  • aztec45
    aztec45 Member Posts: 757
    #12
    I Hear Ya
    I was on Femera and it gave me incredible leg and lower back aches. I just wanted to cry at the end of the day and had trouble walking to the restroom around the house at end of the day. So, they took me off of that and put me on Tamoxafin. I am also on Vitamin D to help with the leg cramps. I still ache occasionally throughout the week so I take a couple of Aleive PM at night and I am able to do my job during the day. It ain't the cancer that gets ya but more the chemo effects.

    Take care.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #13
    aztec45 said:

    I Hear Ya
    I was on Femera and it gave me incredible leg and lower back aches. I just wanted to cry at the end of the day and had trouble walking to the restroom around the house at end of the day. So, they took me off of that and put me on Tamoxafin. I am also on Vitamin D to help with the leg cramps. I still ache occasionally throughout the week so I take a couple of Aleive PM at night and I am able to do my job during the day. It ain't the cancer that gets ya but more the chemo effects.

    Take care.

    Welcome back .. Even tho I am on NO after care
    medication - had herceptin for 1 year -- I am happy to see many of our WARRIORS have made posting -- Hoping these help you out.


    Vicki Sam
  • Angie2U
    Angie2U Member Posts: 2,991
    #14
    aztec45 said:

    I Hear Ya
    I was on Femera and it gave me incredible leg and lower back aches. I just wanted to cry at the end of the day and had trouble walking to the restroom around the house at end of the day. So, they took me off of that and put me on Tamoxafin. I am also on Vitamin D to help with the leg cramps. I still ache occasionally throughout the week so I take a couple of Aleive PM at night and I am able to do my job during the day. It ain't the cancer that gets ya but more the chemo effects.

    Take care.

    There have been posts on
    There have been posts on here about leg cramps. Does the Vitamin D really help you Aztec?


    Angie
  • cahjah75
    cahjah75 Member Posts: 2,631
    #15
    My sister
    took Tamoxifen 9 years ago with no side effects. However, after her recurrence last year and she has osteoporosis and is post menopausal the gyn is putting her on Exista. It is expensive! I'm on Arimidex and am having severe pain in all joints. I've been on arthritis meds for 11 years. Tonight I'm taking Flexeril to go to sleep. I even have pain in the tops of my feet. I've also been having swelling issues. I just started taking Arimidex 3 weeks ago and see my onc in March. I'll give it til then but want him to consider another option.

    I have a TENS unit, Lidoderm patches and sleep with a bar of soap and drink tonic water at night. Nothing seems to help lately.
    Char
  • mgm42
    mgm42 Member Posts: 491 Member
    #16
    Family Doctor may have nailed it...
    I went to my family doctor and told her my tale of woe. Her immediate reaction was, "it's the diuretic you are taking for your high blood pressure. Tamoxifen doesn't cause skeletal cramping." I didn't know whether to laugh or cry. But, she took me off the diuretic, put me on an ACE inhibitor (for HP), put me back on my tamoxifen, and told me to pick up some Cal/Mag/Zinc. I bought the CVS store brand. She also told me to keep a diary. She's convinced it's my blood pressure med. She also told me to do daily gentle stretches. Today I started everything and NO CRAMPS. I don't know if this will last, but I'm hoping. If this turns out to be the answer, I will be one happy camper. However, I'm a little perplexed that my oncologist didn't consider my other meds as possible culprits when I was having so many troubles. She just sent me to rheumatologist instead and made me feel like I was the nutso patient. She also explained that a side effect is something that research says can happen when taking a certain drug unlike an allergic reaction which would be immediate, within minutes or hours, not after a year. The AI's do have the swelling of the joints, joint pain, and muscle pain as a side effect. I couldn't tolerate the joint swelling. That's why the switch to Tamoxifen. So girlfriends, the journey continues and the saga goes on. But I feel like I'm back in control and it's a terrific feeling. Hugs, Marilynn
  • MAJW
    MAJW Member Posts: 2,510 Member
    #17
    Potassium
    Have you had your potassium level checked? Low potassium can lead to severe muscle cramps...
    Just a thought..

    I wish you better feeling days
  • Noel
    Noel Member Posts: 3,095 Member
    #18
    New Flower said:

    Hi Marylin
    welcome back we missed you here. I was on Tamoxifen for 15 moths had fatigue and sleeping problems and then my body adapted to it and I was ok. After 15 months on Tamoxifen I was switched to Arimidex. After 5 months on it developed a hand and palm pain my fingers were swollen, hip and low back pain and vomiting. I was taken off Arimidex 6 weeks ago. Several side effects disappeared, however both hand pain and fingers swelling are still there. I will see my oncologist on 25.
    Hugs

    Congrats on your 3 years!
    Congrats on your 3 years! That is great! I am not on Tamoxifen, but, looks like a lot are and have given you their experience.


    Sending cyber hugs,

    ♥ Noel
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #19
    mgm42 said:

    Family Doctor may have nailed it...
    I went to my family doctor and told her my tale of woe. Her immediate reaction was, "it's the diuretic you are taking for your high blood pressure. Tamoxifen doesn't cause skeletal cramping." I didn't know whether to laugh or cry. But, she took me off the diuretic, put me on an ACE inhibitor (for HP), put me back on my tamoxifen, and told me to pick up some Cal/Mag/Zinc. I bought the CVS store brand. She also told me to keep a diary. She's convinced it's my blood pressure med. She also told me to do daily gentle stretches. Today I started everything and NO CRAMPS. I don't know if this will last, but I'm hoping. If this turns out to be the answer, I will be one happy camper. However, I'm a little perplexed that my oncologist didn't consider my other meds as possible culprits when I was having so many troubles. She just sent me to rheumatologist instead and made me feel like I was the nutso patient. She also explained that a side effect is something that research says can happen when taking a certain drug unlike an allergic reaction which would be immediate, within minutes or hours, not after a year. The AI's do have the swelling of the joints, joint pain, and muscle pain as a side effect. I couldn't tolerate the joint swelling. That's why the switch to Tamoxifen. So girlfriends, the journey continues and the saga goes on. But I feel like I'm back in control and it's a terrific feeling. Hugs, Marilynn

    happy
    that this seems to be working for you! I was on tamoxifen for 7 months, had bad calf & feet cramps and hot flashes. Was determined to stick it out. Then I had a pulmonary embolism shower. Damn lucky to be alive and still on oxygen at night 15 months after the event. No one knows for absolute certainty but tamoxifen was the suspected culprit. My onco wanted me off. Stop the drug that tried to kill me? I think I can do that! So I'm flying without it and I'm OK with that.

    Maureen
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #20
    EveningStar2 said:

    happy
    that this seems to be working for you! I was on tamoxifen for 7 months, had bad calf & feet cramps and hot flashes. Was determined to stick it out. Then I had a pulmonary embolism shower. Damn lucky to be alive and still on oxygen at night 15 months after the event. No one knows for absolute certainty but tamoxifen was the suspected culprit. My onco wanted me off. Stop the drug that tried to kill me? I think I can do that! So I'm flying without it and I'm OK with that.

    Maureen

    Glad you are doing ok
    Glad you are doing ok without it Maureen.


    Hugs, Debby

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