arimidex

[Becky Stockwell]

My oncologists wants me to try this drug. I have been dx with stage 1 breast cancer, and need some imput. I see many of yu have hideous side effects with arimidex... I really need to know if I should take this drug. I have stage 4 ovarian cancer and have no ovaries(currently in remission) I had 18 chemos and the drug side effects sounds worse than chemo. I have more of a risk or recurrance with my stage of ovca than with the .9cm tumor grade 2,removed with lumpectomy
DCIS high grade with comedronecrosis in 20% of the tumor, no lymph involvement and clear margins.
No radiation because of my other disease. Any imput you may give me will be greatly appreciated.
Thanks Becky
[e-mail]

[Carol]

Becky, I had radiation, unlike you. But as far as the Arimidex, I think you should keep in mind that most people who write in to sites likes this are ones that have challenges to overcome, and they are not necessarily in the majority. I did feel at the beginning that I had some joint stiffness, and I know now that keeping my weight down is also a challenge, and I have to work harder at it by maintaining a low calories diet and getting very strenuous exercise. But after 11 months on Arimidex, I feel just GREAT, like my old self. I think it is possible to adapt or adjust to the medical regime, and to come out of it feeling good despite a few initial challenges. So give it a try. You may be lucky the way I am and cope well if you give it a little time and stay active with a good diet and a positive attitude. I also take Glucosamine Chondroitin (as I have done for years) to assist with the joints. I guess it doesn't work for everyone, but it seems to work for me. Anyway, I am proof positive that you can live with Arimidex and feel terrific. Best to you, and don't discount this life-saving medicine because of reports of negative effects from others. You may be very different, especially if you give it a few months' try. Carol

[Kathy]

Does anyone have experience with how long it takes to "recover" after going off arimidex? Or do you "recover"?
I had a lumpectomy, chemo and radiation and now am on arimidex for 6 months. Joint pain, hands and feet swelling,
hot flashes. I was sent to a neurologist and was diagnosed with carpal tunnel which I never had any problem with before.
He said that arimidex causes nerve damage. I've had severe pain in my radial nerve on the dominant hand and in the left thumb. Also my eyelashes periodically fall out then come back. Any responses would be appreciated.

[Kathleen Fairfield Ohio]

I have been on Arimidex for one and half years. I had lumpectomy and radiation and started on Arimidex in Jan of 2005. I had been to a meeting on it when I was first starting and saw women crying from the side effects and saying they had to wuit it becaue they simply could not tolerate the pain. I thought they were just weaklings and knew I was tougher than that. Well after 1 1/2 years, I am miserable. The first six months I really thought I was going to do well, but I would go off of it tomorrow if something else became available. The side effects that this drug company expects people to tolerate is unacceptable, but they know that they have us between a rock and a hard place. I too, have the nerve damage in the right wrist and thumb. It is so painful that I cannot even touch the area and it is difficult to do actives of daily living like combing my hair, hooking my bra etc.

I beleive it causes nerve damage as a friend's daughter who had been on it for four and a half years now has numbness of all her extremities. She is counting the days until she can stop it.I doubt that nerve damage goes away after stopping it. Once nerves are damaged they are slow to never in returning to normal.I an an RN. My oncologist has offered to let me take it every other day but what good what that do? I visited my family doctor last month and because of all of the pain I have been having in my joints he deceide to draw a Vitamen D level. It was half what the normal value should be and he is putting me on prescription vitamen D 50,000 I.U. I have had an intake of 600 I. U. for years so there is no explantion for why it is so low. I think it is probably an undiscovered side effect of Arimidex. One thing is for sure, if the level stays that low I will soon be experiencing fractures!!

I am hoping some drug company will soon come up with something less toxic to the body. All of us are nothing more than lab rats for this medication as it has just now been on the market for five years. They have no idea what meds will do to people until they are actually given to millions of people. As an RN it was always my policy to not take any medication that had not been on the market at least 5 years.I had no choice with this one.

I have not felt good or had a really good day for over a year now. i used to walk daily and swim at least three times a week and hike. Now I don't even get the house cleaned half of the time. I used to dance all the time, now if i go dancing for four hours I pay for it for days. i am alswyas tired. i used to blame it on the radiation, but i really belive it is the medication now. i am single and men do not want to date someone who cannot move about. I did not take my Arimidx yesterday and I am not taking it for the next week to see if I can start to feel like a human being again. I would like to not take it again forever, but I am afraid not to. I am beginning to think I would have prefered chemo therapy, go through the hell for a year or so and have it over with. This dragging out the misery for five years is a living hell. I also notice that I get depressed easily and can cry at the drop of a hat. This is not my personality at all. All and all I would say I am completely miserable on arimidex and would love to get off of it. A lady a church who has been on it for 31/2 years is becoming cripped with arthritis and in constant pain. She goes to NorthWestern University for treatment. She is begging her doctor to take her off but they refuse. That is because they have no idea what it is like to live on it.

[Liz]

Here's a side effect not mentioned so far.I have always had very strong teeth but during the last year they have started to break off. It has suddenly occurred to me that this may have something to do withh Arimidex.Have any of you experienced this problem?
Also a question for Kathleen - you say that you wish that you had chemo. I'm takng Arimidex even though I had chemo - are you saying that maybe I don't need to take it.

[Kathleen Fairfield Ohio]

For Liz:

they told me I didn't need chemo because mine was stage 1 and not in the lymph nodes. If it was in your lymph nodes, you needed chemo. I had afriend in that situation. She had chemo and is on Arimidex 3.8 years and is becoming a painful arthritic cripple. Her hands are all knarled. she had no arthritis before and is trying everything including yoga to try and get some relief.

I have been on it 1.8 yrs. Have always had good teeth. so far they are OK

[Liz]

Kathleen Fairfield Ohio wrote:

For Liz:
they told me I didn't need chemo because mine was stage 1 and not in the lymph nodes. If it was in your lymph nodes, you needed chemo. I had afriend in that situation. She had chemo and is on Arimidex 3.8 years and is becoming a painful arthritic cripple. Her hands are all knarled. she had no arthritis before and is trying everything including yoga to try and get some relief.
I have been on it 1.8 yrs. Have always had good teeth. so far they are OK

Kathleen
I am interested in the fact that you are taking quite large amounts of Vitamin D.Can you tell me how many mgs you take a day so that I can discuss with my oncologist.

[Sheila]

It breaks my hear to hear your stories. I know that I got excellent treatment at Northwestern Univ Hosp (Chicago, and none of the doctors have stopped working with me just because I said I wouldn't take the Arimidex. It is a very individucal decision--everyone's case is different and there risks--but we women have the right to stand up for ourselves. I'm not telling anyone not to take it--I just hope that you all know that you do have a choice. My radiation oncologist and I have a running joke--she brings up Arimidex every time I come in and I smile and say, "Nope, haven't changed my mind." She listened to what I had to say and agrees that the decision is mine. We still get along just fine! I'm 52 years old and the quality of my life is just as important to me (if not more so)than the quantity. That's just my personal situation and opinion. And--I feel great!

[Kathleen Fairfield Ohio]

Liz wrote:

<quoted text>
Kathleen
I am interested in the fact that you are taking quite large amounts of Vitamin D.Can you tell me how many mgs you take a day so that I can discuss with my oncologist.

I just began taking the Vit D this week. Vit D blood level should be over 35. Mine was very low at 12.5. My family doc who is an internest/endocrinologist is the one who picked it up, not my oncologist. He did the Vit D level because I am having so much joint pain and tingling in my hands ( nerve damage) esp.the right one. He has prescribed Vit D 50,000 units once a week for three months and then once a month there after. I have to get blood work repeated at the end of the first three months. He said that once my D level is back up, he is hoping I will get releif from the pain. I also continue to take my calcium supplement three times a day as I have done for many years. That contains a total of 600 I.U. of Vit D. I chose this famly doc years ago when I worked with him at the hospital. I was the head nurse there and observed that he was a very good doc (not all of them are). I have read the blog from a person who said they are doing Vit D study at Washington University. I found their web site and read what they have on line. After reading what they had, i.e. that they are thinking that the Arimidex is interfering with the liver's ability to convert Vit D. If this is the cae, I don't beleive that taking large doses of Vit D, which must to be converted by the body with the addition of sunlight to be usable by the body, will do any good if the Arimdex is inhibiting some internal mechanism from converting it to usable molecules by the body. We shall see. I called the University as there was number on the web site, to see if I could be a control in their study, but they want you to live near the University.
I certainly won't be any worse off for giving it a try and the drug is relatively inexpensive. At least I am hoping that, because Vit D is a fat soluble vitamen and not as easily eliminated by the body as the water soluble ones i.e. Vit C or the B vitamens. A,D and E are fat soluble so they can reach toxic levels in the body if they are converted and stored as they body normally does. I think if I take these high doses for three months and there is no change is my blodd level, that indicates that the Arimdex is interfering with conversion and or absorption by the body in some way, BIG time. I see my onclologist every three months and my next visit will be 08/22. I will log on again then to let you know if she is up to speed on this. I doublt it since she just tells me to more or less,live on Ibuprofen. If this is the case, I intend to get her on her toes and looking. A friend and church memeber at my parish, is having worse symptoms than me. I sent her all the info I have on Vit D last week and she was taking it to her oncologist vist yesterday. I am waiting for a reply from her visit as she was going to bring it up to her oncologist as well. If we all work together to demand some answers, and thank God for the internet on this one, maybe we can get some answers/solutions. Proactive is the name of the game if you are a patient these days!!!! I find it completely unacceptable that this drug company has used us all as a bunch of lab rats and continues to substainialy underplay the side effects and decrease in quality of life caused by this drug. Unfortunately, they know they are the only game in town for millions of women.

[RPM]

I was on Arimidex for 7 months, I began to have joint pains at the fourth month, especially my knees and hips,then ankles. Called my oncologist after 7 months and she's taken me off for 3 weeks but now I have tingling in both ankles,and sciaitia like pains
i am sure it all came from the Arimidex.

[tussy]

Liz wrote:

Here's a side effect not mentioned so far.I have always had very strong teeth but during the last year they have started to break off. It has suddenly occurred to me that this may have something to do withh Arimidex.Have any of you experienced this problem?
Also a question for Kathleen - you say that you wish that you had chemo. I'm takng Arimidex even though I had chemo - are you saying that maybe I don't need to take it.

Hi Liz: I've been on Arimidex for 1.5 years now. I had stage I with lumpectomy and radiation. I was put on Arimidex in May, 2005. For the first six months I had trigger thumbs, very painful. I couldn't bend them and when I did they would lock. I started taking a baby Aspirin daily and that seemed to have helped. I still have some joint pain but not servere enough to warrant complaining. But, just recently my teeth too have been chipping. In fact just today my front tooth chipped and I too have always had strong teeth. This drug is so experimental and no one can give us straight answers. I am hoping it keeps the bx at by but at the cost of losing my teeth and having huge dental bills, I don't know.

[Theo]

I just started taking Arimidex, I asked my oncologist about the weight gain and the joint pain that I ahve been hearing about with arimidex. I am already fat although I walk at least 30 to 40 minutes everday. I too get stiff. I am really afraid about taking this pill. I had stage1. I too had radiation. I am thinking about stopping the arimidex all together.

[Sheila]

I have been on arimidex for a year. My biggest problem is constant diarrhea. Does anyone else have this problem? I also have problems with my teeth - I thought it was just me, until I found this board, I am now very relieved to find I am not alone. Also my hands are sore in the mornings. My doctor won't listen. He told me to stop the arimidex for 2 weeks - to see what happens.

[Lois]

Liz wrote:

Here's a side effect not mentioned so far.I have always had very strong teeth but during the last year they have started to break off. It has suddenly occurred to me that this may have something to do withh Arimidex.Have any of you experienced this problem?
Also a question for Kathleen - you say that you wish that you had chemo. I'm takng Arimidex even though I had chemo - are you saying that maybe I don't need to take it.

I have been on Arimidex almost 3 years and my teeth are now chipping. Never had a previoous problem. also my dentist became alarmed at my last exam due to white patches on my gums, sent me to an EMT doctor who did not see any problem, he felt the white patches might have been due to the chemo and radiation but now I am wondering if this is another side effect of Arimidex. Is anyone else experiencing similar problems with their teeth, mouth or gums?

[Sheila]

Lois and everyone,
Yes, I am having trouble with my teeth. I have been on arimidex for a year. I did have the best teeth in my family when I was growing up, but now they are chipping, cracking and just plain falling apart. I did not have chemo or radiation because I had a lumpectomy followed by a mastectomy with immediate reconstruction - and the reconstruction failed. It became infected, and by the time I actually got to the medical oncologists, it was 'too late' for chemo etc. I was, I admit, talked into the idiotic idea of reconstruction. I was very iffy about the idea. And it's a CRAZY idea because if it goes wrong, there goes the rest of the treatment. So I'm stuck with arimidex, side effects and all. I have to say, finding you ladies has cheered me up; my md seems to think - or at least he tells me - that all my problems are in my head.

[Beth Dallas]

Kathy, I would be interested in hearing more about what your neurologist said about Arimidex. Had s/he read something or was it personal experience? I would like my oncologist to get this kind of feedback. I don't think oncologists are getting the whole picture about this medication.

Kathy wrote:

Does anyone have experience with how long it takes to "recover" after going off arimidex? Or do you "recover"?
I had a lumpectomy, chemo and radiation and now am on arimidex for 6 months. Joint pain, hands and feet swelling,
hot flashes. I was sent to a neurologist and was diagnosed with carpal tunnel which I never had any problem with before.
He said that arimidex causes nerve damage. I've had severe pain in my radial nerve on the dominant hand and in the left thumb. Also my eyelashes periodically fall out then come back. Any responses would be appreciated.

[Beth]

Kathy of Mobile, AL. you said that your neurologist said that Arimidex caused nerve damage. Could you tell me the name of the doctor. I need some advice. Thanks

Kathy wrote:

Does anyone have experience with how long it takes to "recover" after going off arimidex? Or do you "recover"?
I had a lumpectomy, chemo and radiation and now am on arimidex for 6 months. Joint pain, hands and feet swelling,
hot flashes. I was sent to a neurologist and was diagnosed with carpal tunnel which I never had any problem with before.
He said that arimidex causes nerve damage. I've had severe pain in my radial nerve on the dominant hand and in the left thumb. Also my eyelashes periodically fall out then come back. Any responses would be appreciated.

[Karen]

I had Stage 2b breast cancer, followed by chemo & radiation. I have been on Arimidex for 3 1/2 months & have joint pain in hands, feet, knees, and carpal tunnel that came out of nowhere. I've been going to a wonderful physcial therapist & with lots of little "tricks" the carpal tunnel has improved, but is definitely still there. I'm hoping things will settle down after 6 months on the pills, which some women report. I will not have the surgery for carpal tunnel as I don't want to risk a full blown case of lymphodema in that arm. Some of the things that keep the carpal tunnel at a managable level: cold laser treatments from the physcial therapist, regular massages (helps whole body), sleeping on my back instead of side, wearing a wrist brace at night, wrist rest at the computer (full of beads, not gel), and Advil (one at night, one in the morning). Anyone else have the carpal tunnel issue from Arimidex?

Kathy wrote:

Does anyone have experience with how long it takes to "recover" after going off arimidex? Or do you "recover"?
I had a lumpectomy, chemo and radiation and now am on arimidex for 6 months. Joint pain, hands and feet swelling,
hot flashes. I was sent to a neurologist and was diagnosed with carpal tunnel which I never had any problem with before.
He said that arimidex causes nerve damage. I've had severe pain in my radial nerve on the dominant hand and in the left thumb. Also my eyelashes periodically fall out then come back. Any responses would be appreciated.

[Cindy]

I am also on Arimidex. I had a lumpectomy in Jan of 07 and 6 1/2 wks of radiation. Even though my 1st oncologist said "you have to have chemo" I did not & found a new dr.I have been taking Arimidex since April and have experienced hair loss, nose bleeds,& a severe burning sensation in my back. I am already on Welbutrin so no depression. My regular dr finally did blood work to ck cholestrol levels & they were fine. When I discussed all this w/my oncologist he just blew me off & said the only side effects from this drug was SOME bone loss & they would do dex scans for that. Have an appt Sept 12 & will ck on Vit D. I already eat healthy & taking an all natural vit but very concerned about taking this drug.

[Helen Celia]

I was diagnosed in May 2005, stage 3, early stage, had lumpectomy, sentinel node biopsy, followed by repeat surgery some six weeks later to clear margins, micro spot found in 1 lymph node only. Had chemo followed by radiotherapy, followed by tomoxifen for 9 months, at my last review 4 months ago was swapped to arimidex, felt good for a couple of weeks to get off tomoxifex even lost weight I put on approx 10 kilo since taking tomoxefin, now have put on about 10 kg again, have swelling and pain in all joints especially hands, fingers, feet, knee, hip, and am that tired I can bearly get to work let alone do all the house work, I was a neat freak and I hate the quality of life now, I cant walk without noticable frail gait of an elderly citizen I am 51, have a 13 yr old and cant make lunches and only cook tea when I have the energy, I am thinking of going back to tomoxifen if you can? or maybe going off all drugs, I was healthy before being diagnosed, any advice