anyone on arimidex?

bsktpj
bsktpj Member Posts: 4
edited March 2014 in Breast Cancer #1
Hi, I am new to these boards. I had a lumpectomy in May- 2- 2cm tumors- stage 2 breast ca, 2 out of 6 lymph nodes positive. I had dose dense cytoxin and adriamycin every two weeks x 4, then started running a fever and ended up in the hopital for 10 days with pneumocystis pneumonia. Pretty scary. Oncologist said no more chemo- can't risk another pneumonia. So, no taxol for me. She said being that my tumors were estrogen positive- taking the taxol only made a 3% difference in survival rate. So, I am done with chemo- at first I was scared but a little thankful. I started Arimidex last week and then start radiation- 35 treatments- in 2 weeks. Anyone else on Arimidex?

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    Nope....Tamoxifen....eligible for Arimidex, but the chemo made me osteroporotic (also my age...51...and my total hysterectomy)....if you start having ANY significant bone pain...DEMAND a dexascan....the aromatase inhibitors (arimidex is one) actually rob the bone of calcium/density.
    Hugs,
    Kathi
  • Susan956
    Susan956 Member Posts: 510
    #3
    Welcome to our club. You will find that many of us are on Arimidex. I have been taking it since January. The biggest side effect that I have had are Hot Flashes ... I take 1000 IU of Vitamin E (it helps a little) Vaginal Dryness (Replens you can get it at the drug store - over the counter - solved that problem.) and Sleeplessness (I now take a sleeping pill at night (Ambien). But in general it is just one more pill to take and if it reduces my risk of the beast coming back then it is well worth it.

    Let me know if I can help more.

    Good Luck and God Bless.

    Susan
  • pansylover
    pansylover Member Posts: 80
    #4
    I am also on Arimidex. I have some side effects as Susan. I also have bone pain and take glusomine for that. no problem sleeping..Arimidex puts me to sleep..hahaha and for vaginal dryness we use astroglide warming gel. I also take Vitamin E 800 in the am and 800 at night,seems to help alot.
    if there is anything else I may help you with feel free to ask.
    (((hugssss)))
    Cindie
  • bsktpj
    bsktpj Member Posts: 4
    #5
    KathiM said:

    Nope....Tamoxifen....eligible for Arimidex, but the chemo made me osteroporotic (also my age...51...and my total hysterectomy)....if you start having ANY significant bone pain...DEMAND a dexascan....the aromatase inhibitors (arimidex is one) actually rob the bone of calcium/density.
    Hugs,
    Kathi

    Hi Kathi- yes my dr. told me to take calcium and vit. d for my bones. thanks for replying!
  • bsktpj
    bsktpj Member Posts: 4
    #6
    Susan956 said:

    Welcome to our club. You will find that many of us are on Arimidex. I have been taking it since January. The biggest side effect that I have had are Hot Flashes ... I take 1000 IU of Vitamin E (it helps a little) Vaginal Dryness (Replens you can get it at the drug store - over the counter - solved that problem.) and Sleeplessness (I now take a sleeping pill at night (Ambien). But in general it is just one more pill to take and if it reduces my risk of the beast coming back then it is well worth it.

    Let me know if I can help more.

    Good Luck and God Bless.

    Susan

    Flashing here too- just as I thought I was over them. I hate not being able to sleep too- may have to mention that to the dr. Thanks Susan!
  • bsktpj
    bsktpj Member Posts: 4
    #7
    pansylover said:

    I am also on Arimidex. I have some side effects as Susan. I also have bone pain and take glusomine for that. no problem sleeping..Arimidex puts me to sleep..hahaha and for vaginal dryness we use astroglide warming gel. I also take Vitamin E 800 in the am and 800 at night,seems to help alot.
    if there is anything else I may help you with feel free to ask.
    (((hugssss)))
    Cindie

    Hugs back to you Cindie- it is so nice to be able to "talk" to those who understand:)
  • omorijoy
    omorijoy Member Posts: 2
    #8
    pansylover said:

    I am also on Arimidex. I have some side effects as Susan. I also have bone pain and take glusomine for that. no problem sleeping..Arimidex puts me to sleep..hahaha and for vaginal dryness we use astroglide warming gel. I also take Vitamin E 800 in the am and 800 at night,seems to help alot.
    if there is anything else I may help you with feel free to ask.
    (((hugssss)))
    Cindie

    I've been taking Arimidex for fifteen months and am now having mobility problems - fingers are swollen like sausages and it's hard to make a fist and there is throbbing pain and a couple of inflamed fingertips, its been diagnosed as a form of arthritis. there is also the same pain in my feet, knees and hips. I've just been taken off arimidex and put onto Femara. Is there anyone in the same position? I would dearly love top know how long it has taken for the arthritic pain to subside.
  • cruf
    cruf Member Posts: 908
    #9
    omorijoy said:

    I've been taking Arimidex for fifteen months and am now having mobility problems - fingers are swollen like sausages and it's hard to make a fist and there is throbbing pain and a couple of inflamed fingertips, its been diagnosed as a form of arthritis. there is also the same pain in my feet, knees and hips. I've just been taken off arimidex and put onto Femara. Is there anyone in the same position? I would dearly love top know how long it has taken for the arthritic pain to subside.

    Hi! I was on Femara for 10 mos and had similiar joint problems. Now I'm on Aromasin and still uncomfortable. I was given the choice to stop all meds But I feel the need to keep trying anything to prevent recurrance. I'll have to wait and see if I get worse. I did have to have a trigger finger release of my thumb and now the other one is triggering. I, too, have foot and toe pain. No shoes are comfortable. I'm not glad you are having pain but at least I know I'm not the only one having foot and toe pain. I was on Tamoxifen for 5 years and never had any joint pain from that! Too bad we can't stay on it longer! Good luck. Hope you're feeling better soon. HUGS!! Cathy
  • omorijoy
    omorijoy Member Posts: 2
    #10
    cruf said:

    Hi! I was on Femara for 10 mos and had similiar joint problems. Now I'm on Aromasin and still uncomfortable. I was given the choice to stop all meds But I feel the need to keep trying anything to prevent recurrance. I'll have to wait and see if I get worse. I did have to have a trigger finger release of my thumb and now the other one is triggering. I, too, have foot and toe pain. No shoes are comfortable. I'm not glad you are having pain but at least I know I'm not the only one having foot and toe pain. I was on Tamoxifen for 5 years and never had any joint pain from that! Too bad we can't stay on it longer! Good luck. Hope you're feeling better soon. HUGS!! Cathy

    Thankyou Cathy - like you, it gives a litle comfort to know someone else has been suffering pain in joints. I was on Tamoxifen first but it was from this that I developed the joint pain. My oncologist thought that Arimidex would help. It's early days yet - a couple of months - so I'll persevere now with Femera and watch this thread to see how others of you are getting on. Every good wish to you. HUGS back, Joy
  • kathydaly
    kathydaly Member Posts: 81
    #11
    omorijoy said:

    Thankyou Cathy - like you, it gives a litle comfort to know someone else has been suffering pain in joints. I was on Tamoxifen first but it was from this that I developed the joint pain. My oncologist thought that Arimidex would help. It's early days yet - a couple of months - so I'll persevere now with Femera and watch this thread to see how others of you are getting on. Every good wish to you. HUGS back, Joy

    hi there omorijoy and crux, i have some similarities and was happy to see other people to talk to. my first bc in 91 which was stage III, 2 pos. nodes out of 21, and had very pos. estrogen receptors, lol. had 4 rounds of aydriomycin, 6 rounds of cmf, then a month of radiation, then 5 yrs of tamoxifen. survived, til 04 i had w/bc in other breast, diff. kind, with no nodes involved,and opted for prophylactic maestectomy, to be sure it couldn't come back, HAH. at that point put on arimidex, which nearly killed me. i shouldnt say it like that, i guess. but the side effects were so enormous, the v. bad leg pain, the bones hurting, as well asin my arms, and the hands were terrrible, arthritic--i was 96, aqt least, hehe, diarreaha 5x's a day, weakness in limbs, hot flashes worse than tamoxifen; and they were bad, lol., about 5 bad ones every night after i had finally gotten to sleep despite all the other pain, so in the end v v little sleep, thus exhausted all the time, depressed, and others i cant remember, but the last one; and by then i had decided my quality of life was desparete and i was so done with this pill, had vertigo while driving for short seconds, and guess what? i was told to stop it. i had now taken it for 8 mos. I was told to start aromasin but didn't. i wanted the effects of arimidex to wear off first,that took at least 5 mos. maybe 6. but, i still didnt start the aromasin because i still was so fearful after the arimidex. during this time i also 1 1/2 yrs bad pain in left arm, hand shoulder, neck---numbness, constant tingling as well. lots of tests, no answers. i was going to Sloan's Pain clinic all that time, and finally we diagnosed bc in 2 lymph nodes lying in front of a nerve cluster serving left arm side. This bc was from original breast ca of 15 yrs ago. well, just puff at me, and i was ready to land flat on my back, lol. that surgery was on 8/25. i have now started on arimidex 6 days ago, and have had flashes of previous side effects, leg pain and hand pain for about 2 hrs on diff nights, 3rd night and 4th night, sleeeplessness due to hot flashes beginning again for 3 nights.

    sooooooooooo, i am feeling a 'lil bit leary of this one working, needless to say, but will do utmost to stay on it for 3 mos. since they say that is when side effects of aromasin should subside and or end.

    i am profoundly grateful for a lot of reasons, but the biggest being both of these reoccurances have been the best i could have had; i.e., no lymph nodes in r breast 2 yrs ago, and this one being just in those 2 nodes, and encapsulated. so much more but i feel like i've wriiien so much just to get bare facts out, and answer on arimidex.

    with much hope and care for all of us, kathy
  • kathydaly
    kathydaly Member Posts: 81
    #12
    kathydaly said:

    hi there omorijoy and crux, i have some similarities and was happy to see other people to talk to. my first bc in 91 which was stage III, 2 pos. nodes out of 21, and had very pos. estrogen receptors, lol. had 4 rounds of aydriomycin, 6 rounds of cmf, then a month of radiation, then 5 yrs of tamoxifen. survived, til 04 i had w/bc in other breast, diff. kind, with no nodes involved,and opted for prophylactic maestectomy, to be sure it couldn't come back, HAH. at that point put on arimidex, which nearly killed me. i shouldnt say it like that, i guess. but the side effects were so enormous, the v. bad leg pain, the bones hurting, as well asin my arms, and the hands were terrrible, arthritic--i was 96, aqt least, hehe, diarreaha 5x's a day, weakness in limbs, hot flashes worse than tamoxifen; and they were bad, lol., about 5 bad ones every night after i had finally gotten to sleep despite all the other pain, so in the end v v little sleep, thus exhausted all the time, depressed, and others i cant remember, but the last one; and by then i had decided my quality of life was desparete and i was so done with this pill, had vertigo while driving for short seconds, and guess what? i was told to stop it. i had now taken it for 8 mos. I was told to start aromasin but didn't. i wanted the effects of arimidex to wear off first,that took at least 5 mos. maybe 6. but, i still didnt start the aromasin because i still was so fearful after the arimidex. during this time i also 1 1/2 yrs bad pain in left arm, hand shoulder, neck---numbness, constant tingling as well. lots of tests, no answers. i was going to Sloan's Pain clinic all that time, and finally we diagnosed bc in 2 lymph nodes lying in front of a nerve cluster serving left arm side. This bc was from original breast ca of 15 yrs ago. well, just puff at me, and i was ready to land flat on my back, lol. that surgery was on 8/25. i have now started on arimidex 6 days ago, and have had flashes of previous side effects, leg pain and hand pain for about 2 hrs on diff nights, 3rd night and 4th night, sleeeplessness due to hot flashes beginning again for 3 nights.

    sooooooooooo, i am feeling a 'lil bit leary of this one working, needless to say, but will do utmost to stay on it for 3 mos. since they say that is when side effects of aromasin should subside and or end.

    i am profoundly grateful for a lot of reasons, but the biggest being both of these reoccurances have been the best i could have had; i.e., no lymph nodes in r breast 2 yrs ago, and this one being just in those 2 nodes, and encapsulated. so much more but i feel like i've wriiien so much just to get bare facts out, and answer on arimidex.

    with much hope and care for all of us, kathy

    i meant to say, i have started now on aromasin, that could have been confusing, ok then----back to the job at hand. wish i new how u r adjusting now--10/7.

    hugs and prayers, kathy daly

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