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ANY TROUBLE WITH ARIMIDEX

Nickeming
Posts: 11
Joined: Feb 2005

Hello, My oncologist wants me to start taking Arimidex because my cancer is hormone positive. Even though the cancer was tiny and they feel they got it all the lymph nodes where negative. as well as bone scane and chest x-ray. He wants me to take this as a preventative.
What experience have any of you had out there. I really don't want to do this. I already have hot flashes, dry vaginal walls and mood swings. They say it can cause many of these. What do you think . I need direction or at least know what I am getting into with this. I also start radiation therapy in the next two weeks.
Thanks for all the support I feel from this bb. God Bless you all.
Marliece

Kathy1108
Posts: 62
Joined: Apr 2004

Marliece, I was on Arimidex for 1 year but I had to have my oncologist change me to Fermara because of the joint problems. I was having a very hard time going up and down stairs, getting out of chairs and cars. Arimidex affected my wrist, thumb, knees and ankles. I have to wear a copper & magnetic bracelet on both wrist and one ring on my left thumb because my bones jumps in and out of the socket. I did not have this until I went on Arimidex. Yes, there are hot flashes, mood swings and joint problems but unfortunately all those medicines do that. You will have to see which one is works the best for you. There are different medicines out there, so if you see that you are having a hard time with Arimidex tell your oncologist he or she can changed it for you. I found that Femara is better than Arimidex. I still have the hot flashes and mood swings. The joint problems is not as bad on Femara. Somedays I want to stop taken the medicine but then I say to myself I don't want to get the cancer back. So, I put up with the discomfort this drug gives me from time to time. I can't tell you what to do but I know I would do everything I can to make sure that the cancer does not come back. I went through chemo and radiation. I had a double mastectomy (one was from cancer the other one I chose to do it as a precaution). I did have cancer in 4 of my lymph nodes. Good Luck with your radiation treatments. If I can answer anymore of your questions please feel free to email me.

Kathy

SusanAnne
Posts: 245
Joined: May 2003

Hi Marliece,

For myself I can tell you that I've had less side effects from Arimidex than I did from Tamoxifen. The only way you know how it will affect you is to try it. You can always switch as Kathy said, or stop, if it comes to that. But that is my opinion. Listen to what your instincts tell you and you won't make the wrong decision. Good luck with the radiation.

Take care,
Susan

singer2912
Posts: 8
Joined: Jan 2004

Hi...I have had a similar experience and diagnosis...no lymph nodes and a small tumor, and radiation. My doctor put me on Arimidex and I experienced pretty bad joint pain. He switched me to Aromasin (pretty much the same stuff) and I'm still having lots of pain. From talking to others on the board, I understand that this is "Normal" but it really sucks. I think the alternative is worse, however, so I'm sticking with it.

Many have said that exercise and hot tubs are a great help for the joint pain, so I'm trying this. My doc put me on a very low dose of Effexor for the hot flashes and it seems to work pretty well for this and the mood swings.
As much as I hate it, I think you should take the drug...it's new and supposed to be the best for hormone positive cancers.
Good luck with the radiation...be sure to rest when you're tired. Don't push too hard.
Let us know how you're doing.
Fran

DiO
Posts: 51
Joined: Mar 2004

I've been on Arimidex for 8 months,and am also having some problems with joint pain, mostly in my hands, especially thumbs. So far it's not bad enough to stop the drug. Onc says I could go to tamoxifen if it gets too bad, but for now I'd rather put up with the pain and go with the drug which appears to be the most effective. I also have some hot flashes and other menopausal symptoms, but at age 56, no worse than before cancer dx!

Good luck and God bless, Di

roxanne53's picture
roxanne53
Posts: 157
Joined: Feb 2004

I have been on arimidex for about 1 year now. I have side effects but as DiO has said, not bad enough to stop the drug. I am 51 and had the chemo induced menopause so probably would have the middle age aches and pains anyway. For me it is to just get used to them and discuss with oncologist each time i go how the side effects are treating me.

I am stage 3A with ER+PR+ and Her2neu+.(bilateral mascectomy). It is the most effective drug for me to keep the reccurances at bay or non existence. I believe this is what is keeping me safe and alive.

Nick, the drug stops/blocks the manufacturing of estrogen in your body that stops the feeding of the cells that causes the cancer in hormone positive breast cancers.
Just thought I would let you know my situation and my thoughts.
Take care and hope all goes well for you.
Roxanne

sassysally's picture
sassysally
Posts: 150
Joined: Mar 2003

Hi I have been on arimidex for 4 yrs now. Yes there is some joint stiffness and pain, but mine goes away once I am out of bed and moving. Tylenol or something of that sort tends to alleviate any pain.It is not that much of a nusaince to me... I am a three time bc survivor, and anything is better than chemo or cancer, so I'll take alittle stiffness and pain over that ANY DAY!!

marysun
Posts: 39
Joined: Apr 2003

I have taken arimidex since last august. I have joint pain in my hands and feet, and my hands feel swollen in the morning when I wake up. Sometimes my arm (not the surgery side) is asleep, full of pins and needles. I also have noticed that my legs feel on the verge of cramping more now. I take calcium supplements, a daily multi vitamin, 275 naproxin for pain management and the arimidex. I get frequent hot flashes, some real predictable -- 4:30 am, 10:30 am, 3 pm -- those are the ones I anticipate and are most severe. The other 10 or 20 a day are just nature's way of saying I am an old woman :-) (52 this year and planning many more)
I don't like this medicine but the tamoxifen and femara were worse with the side effects. All reports are that arimidex is the next wonder drug. I wonder when they will come out with the REAL wonder drug -- the anti hot flash one! I can't take the antidepressants, they mess me up .
I had 2.7cm tumor, clear margins, ER+, PR+, her2neu negative, microscopic cells in sentinel lymph nodes, 19 more removed with axilla surgery, 4 rounds AC, 35 rads all finished in May 03. My hair is different but very thick and I perm it. My fingernails are different, and I still have sensations in my breast and in my arm. The onc says the sensations (read: mild pain, definite twinges) are from the radiation treatment (see inkblot's message).
But good news: the doctors say I am doing well, tumor markers small, blood work normal, attitude satisfactory. As of this coming august, I will be 3 years from cancer detection and the drs will pull back putting me on 6 month check ups. Can't wait. Planning to walk the relay April 1.
You must make your own decisions as far as these drugs go. I tried each one and finally decided to accept arimidex because weighing them all, it was the one that I can live with. Get a little paper fan and carry it with you ALWAYS. Many things can be used as a fan, but nothing beats a real fan!
Good luck and blessings to you.

tlmac
Posts: 272
Joined: Feb 2004

Hi Marliece, There's been a lot of discussion on Arimidex on this board. In addition to the comments here, you might want to do a search of the board and read through what others have said. I've been on it since May 2003. I was 53 when diagnosed and had gone through a "gentle menopause" at 50. Only had 1 hot flash at the time and have had zero since going on Arimidex. I dress in layers because I do get warmer quicker than I used to. My experience with joint pain is similar to Sassy Sally in that it is most severe first thing in the morning and mostly in my hands. I often wake up with the needle and pin numbness in my arms but this also goes away. I continue to take 20 mg of Bextra but nothing else for pain. I take supplements for joint problems and am looking into Alpha Lipoic Acid currently getting good reviews for the treatment of diabetic related neuropathy. In the time I've been on Arimidex, 2 close friends have recurred while taking Tamoxifen, one is now stage IV. I can't imagine how bad the side effects would have to get before I'd let go of the best protection on the market today for ER+/PR+ survivors. I'm at the age where aches and pains are part of a majority of my friends daily life. I'm just glad to be here. Good luck with your decision.
terri

DeeNY711
Posts: 482
Joined: Apr 2003

Marliece, one of the things that I urge you to do is to weigh the inconvenience of any treatment against your own comfort level with making the decision to skip it and then having a recurrence discovered. Would you wish, too late, that you had done everything possible when afforded the opportunity? Plenty of us do everything possible and then unfortunately find ourselves navigating metastatic cancer, so accepting everything suggested to you is no guarantee. Just be sure you can live with the consequences of your decisions.

I was on Arimidex for 18 months before it was discontinued due to catestrophic treatment failure. It was cancelled because there is no point in taking it anymore. During the time I was on it, I learned that my internist was not only unhelpful, but useless in trying to assist me to navigate pain management. When the drug was discontinued, the aching in my hips at night went away, and my pain level on a scale of 1 to 10 is zero right now. However, if I were standing in my own shoes now after deciding to refuse Arimidex 18 months ago, I would be kicking myself. Hope this helps.

Love,
Denise

BMase's picture
BMase
Posts: 2
Joined: Mar 2005

I was diagnosed with breast cancer in august 2004, had the lump removed, had tissue excision and sentinel node biopsy. Nodes were negative (Thank God), so my onc. put me on Arimidex on October 1 and I began Radiation on oct 26. Completed radiation in december. Joint and muscle pains began in late November and have gradually increased to date. I have tried pain meds, exercise, diet and meditaion and it has at times helped. But at this point, I have decided to stop the arimidex and go with naturopathic and holistic treatments. My tumor was small...I am ER/PR positive and believe that the pain, at least for me, is not okay.

But each of us is different in our reactions to Arimidex, as well as Tamoxifen and others. We each must know our own bodies and where we stand on quality of life. As a musician, the joint pains, wrist pains and swelling in my hands cannot be compromised. So, we will see how I feel in a few weeks after the medicine works it's way out of my system. I have gone to a hand specialist to help with the pain..and he has given me cortisone shots, which have helped. Next step would be surgery to open up so the tendonitis, which has developed, as a result of the medicine has a larger space. I am going to see if going off the arimidex helps to ease this...and I do believe it will. I did not have joint pains, muscle aches and the various side effects before starting the medicine.

I don't want to scare you...this is one person's reaction to the medicine. Your's may be totally different. Listen to your own body and heart. That will not let you down.

DiO
Posts: 51
Joined: Mar 2004

Thanks for your input. I am one who has so far chosen to live with the joint problems to get the benefit of the drug. One of my concerns has been how many of the joint symptoms will resolve when the drug is stopped, or if it's something I'll have to deal with even after. Please post again and let us know how you are doing after being off the Arimidex for a few months.

Good luck and God bless, Di

BMase's picture
BMase
Posts: 2
Joined: Mar 2005

Di,
Thanks for your email. Just came back from the hand specialist and two cortisone shots later and a really heart to heart discussion has confirmed my decision to clean out my system and start fresh. Have an appointment with a naturopathic physician and will dsicuss supplements, diet, nutrition, etc and keep you all posted. I'm taking the first steps in flying (as Kubler Ross so poignantly states). Am believing that a Higher Power than me has my life in control and will see me through this part of the journey to health and wholeness. Thanks for your prayers and will let you know how the side effects are after a few weeks off the meds.

peace
barb

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