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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • Molly50
    Molly50 Member Posts: 3,008

    Welcome wineoclock. What a great screen name. I have a friend who always calls the end of the work day beer thirty. Did your MO not want to try Tamoxifen or does your diagnosis fit the AI's better?

  • TwoHobbies
    TwoHobbies Member Posts: 1,532

    Wine o'clock I'm on Lupron and anastrazole. I did have numbness but mine started with chemo. Did you have chemo too? I take gabopentin and it has resolved. I also have Reynauds which is not related to cancer or treatment as I've had it for years. When I get cold or chilled, my fingers or toes will turn white and feel numb. So if this happens when you feel cold, it might be that.

  • AussieElaine
    AussieElaine Member Posts: 43

    Peggy, I am so very sorry for your loss. You are a very kind and thoughtful woman. Your family ( including your BCO sisters )are so very lucky to have you in our lives. Cyber hugs from Australia (((())))

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Thanks, AussieElaine! I have a good friend in South Perth. She just lost her DH to brain cancer :( Someday I will be able to meet her in person!

    HUGS!

  • tjh
    tjh Member Posts: 272

    Now that surgeries are healed, SE of Arimidex are tolerable, hair is coming back, I feel great most of the time....When do we stop worries that it will come back?

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    tjh, That I can't answer. I suppose that thought always lurks in the back of your mind and over time, it recedes to where you rarely think of it.

    HUGS!

  • doxie
    doxie Member Posts: 700

    tjh,

    I worry less and less about BC and I'm 4 years out. Hard to believe its been that long. I think it is more about accepting the situation that it may reoccur and knowing intellectually that is unlikely, and, if so, more likely easily treated.

    The reality is that most of us will have some other more serious health issue as we age and that is what will cause our deaths. So BC is an unfortunate bump in the road, but not the most problematic.

  • ruthbru
    ruthbru Member Posts: 47,538

    The farther out you get, the less you will think about it (except at appointment times Shocked). Keep busy, do fun/interesting/challenging things so that your days (and brain) are full. I remember the first night when it came to me, "Wow! I did not think about cancer AT ALL today!"......that is a happy place to find yourself!

  • lago
    lago Member Posts: 11,653

    tjh like others have said the longer you stay NED the less you worry. Most recurrences happen in the first 2 years after diagnosis so understand and watch for symptoms, know what they are. Discuss with your oncologist. Don't assume every ache, pain or headache is mets. We all get these from time to time.

    I found at the 2 year mark things got much better for me. I'm now 5 years NED.

  • patoo
    patoo Member Posts: 5,243

    doxie, very well said. We sometimes overlook that there are other diseases out there. Hang in there tjh!

  • tjh
    tjh Member Posts: 272

    Thank you all....

  • PKWGA
    PKWGA Member Posts: 10
    Thanks to all you ladies for providing such helpful info to the newbies. I'm scheduled to start Armidex next month after I have my ovaries removed, and I've been really nervous about the SE's. But those of you who have said that the SE's aren't really that bad, or that they decrease with time have reassured me a lot. I just keep reminding myself that I am trying to keep BC from KILLING me, and considering what some of you have gone through, I have had it easy. Straight from BMX to Armidex (onco score of 12, so no chemo or rads). Just finished reading the "all things bras and prosthesis" thread trying to learn how to dress this new body of mine, now I'll need all of you to help me through the Armidex voyage.
  • Saccancer
    Saccancer Member Posts: 3

    Yes, again, arimidex is no problem. Heading toward 2 1/2 years on it. I don't even know I am taking it.


    I sure had the scare stories from doctor before it. But, big nothing.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    PKWGA, Definitely think positive now that you are starting Arimidex. You've done the hard part getting through your BMX. I have nothing to offer on that front but I'm sure you have found the Mx forum and are getting great ideas there. Like SacCancer, I don't even know I'm taking it - just another pill in cup each morning.

    SacCancer, my MO didn't mention any possible SEs. When I brought some of them up, he asked me why I thought I would get them. Of course, I had no answer for that! And none has been needed. BTW, if you would fill out your profile and make it all "public" it would be really helpful to us. A belated welcome!

    HUGS!

  • puffin2014
    puffin2014 Member Posts: 979

    PKWGA: When I started Arimidex I was told to stay as active as possible. I started using a Fitbit and have been gradually increasing my walking and have now done 10,000 steps a day since July 6th. I have not gained weight, I have a little knee and ankle stiffness when I first stand up after sitting for awhile but loosens up within a few steps. I take glucosamine and have been on claritin for my allergies, which some ladies say helps their stiffness. Hope all goes well for you too.

  • patoo
    patoo Member Posts: 5,243

    Welcome PKWGA and Saccancer. Glad you found this thread. Thrilled that Saccancer has not had any major SE's and praying for the same for PKWGA. There are many who take it and have horrific or QOL issues that are very real but we are all different and there is no telling until we try. It is wonderful that some who do not suffer on it to continue to post to encourage others along the way.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Patoo, you are right that many women do have awful SEs with this drug. But you do not know if you will or will not have a problem until you try it. And many of us have no problems. Just do not EXPECT to have problems. Be aware of the signs to look for but still take the pill.

    HUGS!

  • Momonana6
    Momonana6 Member Posts: 154

    FLASH!! When I took the AIs after my chemo...rads etc etc routine 7 years ago my arthritic pain was so severe in my wrists that I saw a hand and wrist specialist. Best move ever...he said that he has seen many women with post arthritis with the AIs. He fitted me with appropriate wrist immobilizes then ordered assessment and treatment by a licensed occupational therapist. That is when I started to heal. OT consisted of warm wax applications then gentle stretching by the therapist. The treatments stretched over 2x a week over 6 weeks......totally paid for by my ins. After 4 weeks I only used the wrist immobilizes on heavier pulling and stretching things. It was heaven to not be incapacitated by the severe wrist pain. There is help for us that will allow continued use of th AIs...Arimidex, Aromasin ....etc. I hope that this helps.

    Peggy

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Peggy, that's totally awesome that you/your specialist found a solution! I hadn't heard that one before. I'll tuck that in my mental filing cabinet in case it's needed. I have no problems and see no reason why it won't stay that way. And perhaps your story will help others. We all want to stay on AIs if at all possible, I think. Thank you.

    HUGS!

  • april25
    april25 Member Posts: 367

    My MO only mentioned things like hot flashes as SEs. So far, nothing like that.

    My hands are feeling more stiff than they were for the whole first part of this year, though.

    Oh, and my MO wanted to see the Bone Density test I had at the beginning of Chemo, so I'm figuring that's also a worry on this drug... But he hasn't told me to do anything or take Calcium or get another test or anything so far...

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    April25, for the stiff hands you might try Claritin. I don't have Arimidex problems, just getting older problems, and Claritin helped with that. Alas, Claritin did nothing for my allergies. My MO put me on Fosamax to protect my bones. You might as your MO about that. Glad you're not having hot flashes! I suspect they would have said "hi" by now if you were going to get them. My MO didn't mention any SEs and when I brought them up, he asked why I would expect them? Well, I actually didn't expect them. He wasn't being flippant, just curious. He does not downplay anything I bring up. He did ask if I had a problem with Fosamax, that some of his patients were and he put them on something else, more expensive since it isn't generic and not always covered by insurance. I said I had no problems with Fosamax including none swallowing the pill (it is large but recently is smaller...go figure) and I like very inexpensive!

    HUGS!!!

  • patoo
    patoo Member Posts: 5,243

    Peggy, you may have hit upon something. I've read so much on here that MO's don't tell us about SE's and maybe it because they don't want us to "expect" them. But, thinking about it, many on BCo say their MO's also deny them when brought up, but it's a thought.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Patoo, my MO has never denied SEs. I probably would have found a different one if he had. I suspect he may believe in the power of suggestion and that probably does happen once in a great while. I've found it very disturbing when the gals here state that their MO pooh-poohs their SEs and denies that the drug could cause them.

    HUGS!

  • lago
    lago Member Posts: 11,653

    The only SE my MO has denied was the emotional ones. I was pissed. Of course it's the drug because when I went off it I was fine. When I switched to Exemestane and had really bad anxiety I went to my PCP to deal with it. She understood and didn't send me to a shrink like my MO wanted to do. We both knew it was chemical.

  • dtad
    dtad Member Posts: 771

    Peggy, I think power of suggesting is undermining our intelligence! IMO docs have a moral obligation to discuss potential side effects. Some of them can be very serious! We need to be educated about what we put in our bodies. Saying that, I don't think we should expect side effects just be aware they exist.I think we are all capable of knowing the difference! Take care.....

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    No argument with you, DTAD!

    HUGS!

  • Molly50
    Molly50 Member Posts: 3,008

    When I asked my MO about SE's and what the most common ones are he said bone pain /aches and hot flashes. He asked me what my biggest concern was and I told him my ongoing battle with vaginal atrophy getting worse. He said it probably will. No solution offered. I miss my Estrace cream.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Molly, at least your MO was honest with you. Too bad there doesn't seem to be a good solution to your problem :(

    HUGS!

  • puffin2014
    puffin2014 Member Posts: 979

    Molly, there are vaginal moisturizers and lubricants that don't have estrogen. My cancer center had a retreat this week and had huge bowls of samples they gave out.

  • patoo
    patoo Member Posts: 5,243

    I was only guessing, tongue-in-cheek, at the 'power of suggestion' possibility. After being on these boards for 6 years and reading the complaints from so many that their MO pooh-poohed their SE's as not being AI related I just wondered. MO's have not had the best 'reviews' on these boards though that may have changed for the better since I started here.