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Old 04-07-2007, 12:09 PM   #1
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Teresa 51 HB User
Unhappy Arimidex

Is anyone on arimidex? I've been on it for 2 yrs. and I am having a lot of side affects. My doctor assures me it can't be easier than taking a pill, but I don't know how much longer I can take this!

 
Old 04-07-2007, 12:44 PM   #2
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cjammom HB User
Re: Arimidex

hi Teresa..I have just switched from aromasin because I was miserable..its been about a month and a half now on arimidex..and I know exactly how you feel! Some days I feel like I am 90! I have alot of muscle and joint pain..have tried my other meds to help with the pains..I am going for pt. because I now have plantar fasciitis and it seems to help with alot of the muscle pain..I do the exercises that they give me, on both legs..I am also taking elavil and relefen, which is an anti-inflammatory..My biggest concern is while I have to take all these other drugs to countact the pains that I have..what other side effects will I have..it isnt easy..I am 4 yrs from diagnosis, and once I finish my 5 yr drug therapy..I honestly think that I will not do any more, no matter what they come up with! I hope you can or do exercise, I believe that you will feel even stiffer if you dont.
Have you tried any of the other AI's, you know each of them are made a little different, you might just have some success on one of the others..aromasin or femara.

 
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Old 04-07-2007, 04:16 PM   #3
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Teresa 51 HB User
Re: Arimidex

Quote:
Originally Posted by cjammom View Post
hi Teresa..I have just switched from aromasin because I was miserable..its been about a month and a half now on arimidex..and I know exactly how you feel! Some days I feel like I am 90! I have alot of muscle and joint pain..have tried my other meds to help with the pains..I am going for pt. because I now have plantar fasciitis and it seems to help with alot of the muscle pain..I do the exercises that they give me, on both legs..I am also taking elavil and relefen, which is an anti-inflammatory..My biggest concern is while I have to take all these other drugs to countact the pains that I have..what other side effects will I have..it isnt easy..I am 4 yrs from diagnosis, and once I finish my 5 yr drug therapy..I honestly think that I will not do any more, no matter what they come up with! I hope you can or do exercise, I believe that you will feel even stiffer if you dont.
Have you tried any of the other AI's, you know each of them are made a little different, you might just have some success on one of the others..aromasin or femara.

 
Old 04-07-2007, 04:24 PM   #4
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Teresa 51 HB User
Re: Arimidex

Thank you for responding...I first tried tamoxifen and I was so depressed I couldn't get out of bed. I switched to Arimidex and it did not take long for me to start having bone problems. I also have gotten Morton's Neuropathy, which is nerve problems in both feet which makes it almost impossible to walk. I have also gotten severe arthrithis in my SI joint in my hips. The ortho dr. said he felt like the neurophy in my feet was due to the arimidex. My oncologist will not address any of the medication problems which has made me really upset with him...he says all I have to do is swallow the pill. Thanks for writing...it helps to know I am not the only one having problems with this med.

 
Old 04-08-2007, 01:55 PM   #5
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cjammom HB User
Re: Arimidex

Hi Teresa..I also have neuropathy in my feet..I get pins and needles in my toes.It's funny..but I think we must have the same oncologist!!Mine will not acknowledge that I have these pains..I think he thinks its all in my head, he told me the other day that"there are women who never get over the diagnosis of breast cancer"..well, he doesnt even know me well enough to make that conclusion about me. My husband was with me..and thankfully he told him that he is all wrong..that I am in pain!!
Can you tell me what Wortons neuropathy is, I have never heard of that?
I went out to a party last night, and danced like there was no tommorrow..had a blast!, but oh am I paying for it today, I swear that today I must be 100 yrs old..I am going to get a cortisone shot in my knee tommorrow, I hope it works!!
How much longer do you have? Is your onc. planning on 5 yrs, or more?
I have looked around on various sites..and believe me, we arent the only ones having problems!!!

 
Old 04-08-2007, 04:21 PM   #6
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Teresa 51 HB User
Re: Arimidex

I have 2 1/2 years left on med. My Morton's Neuropathy is in my feet; it started in my right foot- tingling sharp shooting pains. I had a lot of foot cramping(I don't know if that is related). I went everywhere to find out what was wrong and then finally I went to ortho dr. he said it was Morton's Neur.
The sharp shooting pain left and I developed a pain deeper in my foot. The dr.said he sees this a lot in women that are being treated for cancer. It has to do with swollen tissue surounding the nerve. The nerve finally develops a small tumor. Seven months ago my left foot started the burning etc. thing and I am wondering if it will duplicate my right foot. I did receive steriod injections in my foot, hips, and end of spine. The knees should not be too bad. Some dr. give lidocaine first so the site is numb.

I guess it sounds like I complain alot...I really am happy to be alive and have had an early diagnosis. I know many women experience worse....my mom had breast cancer in the 60's. I sure it was estrogen receptive; back then they gave women hysterectomies as part of treatment. She had a bad time and finally lost her battle with cancer at the age of 42.
So we are truly blessed to have the treatment we have, but it sure is miserable sometimes, isn't it?

I hope your injection goes well and you get some relief. When the shots work (sometimes they worked -sometimes not) it is wonderful!!!
Take care.
Teresa

 
Old 04-09-2007, 04:45 PM   #7
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cjammom HB User
Re: Arimidex

No Teresa, you can vent all you want..I too am very happy to be alive, I try to just alleviate the pain any way I can without having to take too much medicine..I had the cortisone shot in my knee today..it feels a little better. Next week my rheumie will inject something different, cant remember the name of it, but it is supposed to replace some of the fluid that goes away with osteo...so I figured I would give it a try..having an injection once a week for three weeks.
I am so sorry to hear about your mom. They surely have come along way with treatment and survival these days! My prayer is that they will one day prevent it, and/or cure it!!
all the best to you
cj.

 
Old 04-10-2007, 03:05 PM   #8
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Teresa 51 HB User
Re: Arimidex

Glad to hear you are getting some relief with your knee! I think with spring and a little cortisone we might can kick our heels up a little. I couldn't wait to check my messages, I felt like you would let me know how your visit went.
I have a doctors appointment Friday(gp). I called my oncologist today to inform him I was scheduled a mammo in Sept. This would make me a yr and 2mos since my last. I guess I have been expecting them to tell me when I should go. I am supposed to have a mammo every six months. I guess I will see the mammo babes soon. They call themselves the mammo babes...the ladies have been very supportive. Gotta go...stay intouch. Teresa

 
Old 04-11-2007, 01:15 PM   #9
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cjammom HB User
Re: Arimidex

Teresa, I am surprised that your dr. said to have a mammo every six months, although I would like to have them that often myself..I go once a year..
I asked my onc. last week if I could go for an MRI as there has been alot in the news lately about the added benefits..he said the insurance companies wont pay for it! I was very upset about that..I had a mast. and always worry about the cancer returning in the other breast...dumb insurance companies!!
What other side effects are you feeling? and how are you dealing with them..
I was dx with plantar fasciitis, fibromyalgia, carpal tunnel, osteo in the knees, hips, shoulders and spine...before cancer...I hardly even get a cold..so feeling this way is really tough on me..but luckily I can see the light at the end of the tunnell..only 1yr and 2mths left of treatment!!
good luck with appt. friday!
cj.

 
Old 04-11-2007, 03:52 PM   #10
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Teresa 51 HB User
Re: Arimidex

I didn't see this one, I guess that answers my other question.
You really can see the light at the end of the tunnel...treatment is almost complete!!!!
I have fibro as well - I haven't been treated for it. I have carpal tunnel as well, SI joint arth. and bone cyst, end of my spine is severly diseased, etc.
I wonder if when we finish treatment some of these problems will improve? Surely the fibro and muscle problems.
Are you taking anything for the osteo? Fosomax or Boniva? I know prior to starting the med you had a bone scan...how often do you get a bone scan?
Once again thanks for the info...you don't know how much this has helped me. I have friends but no one to correspond with regarding BC.

 
Old 04-12-2007, 04:07 PM   #11
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Re: Arimidex

Hi Teresa, No I am not taking anything..I dont know if someone...fogot to tell me too or what..I will ask at my next appt..thanks for reminding me of that.
Let's see I was diagnosed 4yrs ago in january and have had 2 full body bone scans. I have no idea what protocol is on that one. I dont even know if they would have sent me for this past one, 2 months ago, but I was really complaining about all the pain, bone and muscle, that I was feeling..but luckily it was all clear..just the arthritis stuff..i have had 2 scares, a spot on my liver that seems to come and go..I have no idea, what thats all about..I guess different techs see different stuff..but the last had nothing! they also said that I have a lung nodule..that really sent me over the edge when they first told me..its small, so there isnt anything that they will do about it now..just wait and check on it in about 6months.. Have you ever had the full body bone scan? You should ask about it if you havent had one yet..I cant remember if you said whether you had any positive nodes? I did, that could be the reason for the bone scans..looking for mets. there. Did you get diagnosed with fibro after the cancer!! Its amazing to me how many women out there seem to be afflicted with all the same issues!
Its always nice to talk to someone in the same boat!! My friends really dont understand..and frankly, they probably dont want to hear about any of it! Everyone's got there own problems!!!
cj.

 
Old 04-14-2007, 06:36 AM   #12
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Teresa 51 HB User
Re: Arimidex

Just wanted you to know my dr appt was uneventful...this is a new gp
actually a resident, whom I've never seen before. She didn't have any of my records, so I have an appt to see her in two weeks. I told her about my symptoms and she told me not to focus on them...she said :"where the mind goes so goes the body." Hello!!! I think it is the opposite in my case; "where my body goes, so goes my mind". I love life and have always been active...she asked me if it was just the BC diagnosis that has thrown me. It might have for a while, but I got back on my feet, went to work and continued on until I couldn't do the heavy lifting(I had to push 400lb cart and lift heavy IV fluid boxes) I just couldn't do it anymore. It is a physical thing not a mind thing...anyway

My nodes were neg ...and my cancer was small. I was lucky they found it so early. I was diagnosised with fibro about a year ago...I guess I was diagnosised, everyone ortho dr., rheu dr, and therapist said initially they felt like I had it. I have not followed up on the fibro, I have been dealing with feet and lower spine. I will address the fibro now because that is what is causing me a lot of problems.

I'm going to go for now...I'm going to try to get my mind right so my body can follow. Funny, I still see myself much younger and quite surprised when I look into the mirror. The dr. said I shouldn't be talking about symptoms either, so next time we can talk about our pets.
Teresa

 
Old 04-14-2007, 07:27 PM   #13
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Re: Arimidex

Silly Doctors..Seriously Teresa, try physical therapy!! I have been going now for about a month..and I swear the muscle pain is so much better..not gone, but better..the joint pain, thats another story..going for synvisc injections as soon as my doc. sets up the appointment..then hopefully I'll feel my age again and not like a 90yr old arthritic woman. I take a very small dose of Elavil for the fibro...I just ran out and am waiting for them to be sent in the mail...for the last few days muscles have been spasmig again, and I am not sleeping at all...cant wait till it comes in the mail!!
About Pets..sorry cant reply on that one..I have none!! lol
be well
cj

 
Old 04-15-2007, 01:05 AM   #14
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Re: Arimidex

Hi Cj and Teresa

I've read your posts and its funny how I have similar issues. Not funny but you know what I mean. Right now I'm nervous about posting because I'm afraid of saying something I shouldnt. So please let me know if i do I'm a nurse and it is HARD not to share my nursing experience, but again they are my personal experiences.

I was diagnosed with BC May 30th 2006 following my mammogram. I found the lump as I've had severe fibrocystic disease all my life and had had 3 biopsies in the past so used to doing breast checks.

June 15th I had a lumpectomy which did not show clear margins on path so had my mastectomy July 13th. After that I went thru chemo and radiation and this past Dec. 12th I started my arimidex.

I don't really know all the side-effects and which problems i've been having are related to the arimidex. I got the neuropathy from chemo and my onc said it will go away in six months. I'm also diabetic so I don't expect it to go away totally. It is much better now, only in fingers and toes versus hands and feet. Then I've had pain in my right hip radiating down to my right knee. I has been a 10 out of 10 pain left at its worse. I initially thought it was bone pain from my arimidex but my onc told me usually the bone pain from arimidex is only in the hands and feet. Does that sound right? The pain down my leg is just on the outside part of my leg, not inner leg. I do have mega back problems from 38 yrs of nursing so they are thinking the pain is from my back problems like a pinched nerve? I do have an "old compression fracture" at about L2, and 3 bulging discs and lord knows what else.

I have done 2 weeks of physical therapy ordered by my rheumie and it has really helped. I am now able to lift my leg more than 2 inches off the ground without it hurting. The muscle and hip pain is better but not gone. Does this sound similar to your guy's pain????

There's also a possibility that I have a fracture right rib probably related to my radiation treatments. My radiation doc to me I would be at high risk for rib fractures following my radiation. Also I understand my risk for fractures is also increased if i'm on Arimidex. Were you guys told this? They said it may be fractured from coughing.

Cj...you said you have a lung nodule? Did they do any tests to diagnosis it? Did they give you any idea of what it could be? Six months to sit on it seems like a long time?? I have a lung nodule as well, smaller now, but I know what mine is is why I am asking. You are in NY right? Have you ever been to Arizona, California or New Mexico? Now I'm a bit nervous to ask much more on this issue in fear of breaking posting rules This is my first nite here and I don't want to be banned from something I say lol. Have you ever heard of Valley Fever?

Teresa, what profession are you in pushing boxes of IV fluid's? Work in a pharmacy or central supply? nurse?

I was tickled to find this place. I have a gf that has really been by my side through this but sometimes I feel bad talking about my cancer with her all the time so its nice to find someplace where you can talk about it.

Teresa? where are you from?

Thanks for sharing your stories

Linda




 
Old 04-15-2007, 11:33 AM   #15
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Teresa 51 HB User
Re: Arimidex

I think physcial therapy would help a lot...it's like muscles just keep knotting up along my spine.

Thanks cj!!!

 
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