FEMARA STOPPED

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toninasky
toninasky Member Posts: 102
edited March 2014 in Breast Cancer #1
Well the oncologist is sure the pain in my calves is the Femara. He has stopped it for 3 weeks, and then we can talk about it.
Has anyone out there stopped this family of drugs and stayed off them. What are your feelings, and what do your doctors say? How long have you been off, Femara, Aromisan, Arimidex???

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  • 3cbrca
    3cbrca Member Posts: 206
    #2
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    I've been on aromasin for about 6 weeks and in the last week have noticed pain in my calves too. It comes on late in the day when my arthritis medicine is wearing off. I thought AIs were supposed to cause pain in the joints, but this is a bit like the myalgia caused by the Taxol. I'm terrified of the idea of stopping it because of micromets and was trying to figure out how to handle it without more NSAIDS. If it doesn't get worse I can handle it but if its like the Taxol pain, that required vicodin and I don't want to do that. I see my onc next week. Glad you posted this = I thought it was because I didn't get enough excercise the last several weeks. Thanks
  • cruf
    cruf Member Posts: 908
    #3
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    Hi! I was on Femara for 8 mos. and had lots of joint discomfort as well as increased hot flashes, wt. gain, high cholesterol etc. I switched to aromasin and still have all the same symptoms. Luckly, I had finished my 5 years of Tamoxofin(without any major problems) and have been on this other stuff for 2 years so will stop taking it all in Sept. Sure hope things improve and that the Beast stays away. Hope you feel better and can find something that agrees with you better. Keep us informed. HUGS!! Cathy
  • Susan956
    Susan956 Member Posts: 510
    #4
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    I stopped the first time for three weeks... and restarted a different drug (Arimedix first, tried Femara... worst for me and then finally moved to Aromosin. ( been on this family of drugs for about 1/6 years)) I am currently off the reservation... my feet and legs hurt so bad.. I have stopped for about week... The last time it took 2 -3 weeks for them to feel normal... when I am sure it is the drug... I will be back to see my Onc again and see if we can do something like blood thinner along with Aromosin.... But we will have to talk to make sure that is the answer... I had to stop taking Herceptin...(because it was causing heart congestive failure..)... so maybe the benefit of these drugs do not outweigh the side effects for me...but I am not ready to give up yet... with Herceptin... my Cardiologist... said I had a choice... die of Congestive heart failure or maybe die to cancer... easy choice since one was an absolute and one was a maybe... so hey I chose the maybe... and so far... I am still here and healthy...

    Horray...

    Take Care... God Bless...

    Susan
  • toninasky
    toninasky Member Posts: 102
    #5
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    3cbrca said:

    I've been on aromasin for about 6 weeks and in the last week have noticed pain in my calves too. It comes on late in the day when my arthritis medicine is wearing off. I thought AIs were supposed to cause pain in the joints, but this is a bit like the myalgia caused by the Taxol. I'm terrified of the idea of stopping it because of micromets and was trying to figure out how to handle it without more NSAIDS. If it doesn't get worse I can handle it but if its like the Taxol pain, that required vicodin and I don't want to do that. I see my onc next week. Glad you posted this = I thought it was because I didn't get enough excercise the last several weeks. Thanks

    Your welcome. I am really glad that I have found others who have had the same problem. It is scary to be out there by yourself. I am not sure I will go back on the drugs or not. My feet and legs still ache when walking, but the cramping in my calves has seemed to lessen. 2 more weeks to go without the drug. Good luck to you too.
  • toninasky
    toninasky Member Posts: 102
    #6
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    Susan956 said:

    I stopped the first time for three weeks... and restarted a different drug (Arimedix first, tried Femara... worst for me and then finally moved to Aromosin. ( been on this family of drugs for about 1/6 years)) I am currently off the reservation... my feet and legs hurt so bad.. I have stopped for about week... The last time it took 2 -3 weeks for them to feel normal... when I am sure it is the drug... I will be back to see my Onc again and see if we can do something like blood thinner along with Aromosin.... But we will have to talk to make sure that is the answer... I had to stop taking Herceptin...(because it was causing heart congestive failure..)... so maybe the benefit of these drugs do not outweigh the side effects for me...but I am not ready to give up yet... with Herceptin... my Cardiologist... said I had a choice... die of Congestive heart failure or maybe die to cancer... easy choice since one was an absolute and one was a maybe... so hey I chose the maybe... and so far... I am still here and healthy...

    Horray...

    Take Care... God Bless...

    Susan

    Thanks for the response. This is really a dilemma for me. I don't want to have this kind of discomfort, nor do I want to take pain meds. Well, I guess I will have to make a decision in 2 more weeks. My feet and legs still ache, but the cramping is lessening.

    Good luck to you too.
  • lle1945
    lle1945 Member Posts: 1
    #7
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    Susan956 said:

    I stopped the first time for three weeks... and restarted a different drug (Arimedix first, tried Femara... worst for me and then finally moved to Aromosin. ( been on this family of drugs for about 1/6 years)) I am currently off the reservation... my feet and legs hurt so bad.. I have stopped for about week... The last time it took 2 -3 weeks for them to feel normal... when I am sure it is the drug... I will be back to see my Onc again and see if we can do something like blood thinner along with Aromosin.... But we will have to talk to make sure that is the answer... I had to stop taking Herceptin...(because it was causing heart congestive failure..)... so maybe the benefit of these drugs do not outweigh the side effects for me...but I am not ready to give up yet... with Herceptin... my Cardiologist... said I had a choice... die of Congestive heart failure or maybe die to cancer... easy choice since one was an absolute and one was a maybe... so hey I chose the maybe... and so far... I am still here and healthy...

    Horray...

    Take Care... God Bless...

    Susan

    Susan, I also stopped Femara after taking the drug for 2 years and putting up with terrible bone pain but the main reason was my high blood pressure and cholesterol which it was causing. I changed onc's and my current one wants me to go back on it saying that I can take statin drugs to control those other conditions but I feel, like you, more women die of heart disease than breast cancer. I am a stage 4 and just had my CT scans last week. Both the scans and my labs show that the cancer is progressing but I feel that I trust the cardiologist (who did not want to put me on Statins while I was on Femara) more than I trust my current oncologist who does. Susan what does your doctor say or does he know that you have made this decision? I have found that a lot of doctors will not just see you to "monitor" your condition especially if you have declined or stopped their plan of treatment or medication. Please let me hear from you.

    Sincerely, Linda Lee in AZ
  • Susan956
    Susan956 Member Posts: 510
    #8
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    lle1945 said:

    Susan, I also stopped Femara after taking the drug for 2 years and putting up with terrible bone pain but the main reason was my high blood pressure and cholesterol which it was causing. I changed onc's and my current one wants me to go back on it saying that I can take statin drugs to control those other conditions but I feel, like you, more women die of heart disease than breast cancer. I am a stage 4 and just had my CT scans last week. Both the scans and my labs show that the cancer is progressing but I feel that I trust the cardiologist (who did not want to put me on Statins while I was on Femara) more than I trust my current oncologist who does. Susan what does your doctor say or does he know that you have made this decision? I have found that a lot of doctors will not just see you to "monitor" your condition especially if you have declined or stopped their plan of treatment or medication. Please let me hear from you.

    Sincerely, Linda Lee in AZ

    I have only been off the drug again about a week. I will probably wait about another week or two and go see my Onc. The last time we talked about this similar issue, she wanted me to wait a couple of weeks and see if the symptoms changed. Over the last week I have lost about 3 pounds... and not eaten differently... and the swelling in my legs and feet are better.... So I will have to see what she says in a couple of weeks...

    I will post when I talk to her... so you can catch the update.

    Take Care.. God Bless...

    Susan

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