Topic: After Arimidex

Congratulations on finishing.  It must be such a relief to be finished with it.  Congratulations on making the five year mark and may you have a long, happy and healthy life.

 I ahve been on Arimidex for 7 months.  I am tired, mildly depressed, having mild hot flashes and I am losing a lot of hair.  I hope that I will adjust to the drug and that the SE's will not get any worse. the only thing that bothers me is the hair loss.  I am trying a shampoo but it is too soon to tell.  Did you experience hair loss?

By the way, thanks for offering your experience.

 To dmk123

 Thanks for your posts. It is so good to hear that there is "light at the end of the tunnel" !

 I too have hair loss on top and at the crown.  I have been on Arimidex for 18 months, but the hair loss seems to have happened suddenly recently.  At first I thought it might be the neurontin that I was taking for a couple of months.  The more I read, I think it probably is the Arimidex though.

Even worse for me is the joint pain in places that I definitely have not had before.  Its in my feet and is so crippling.  I can hardly walk.  Did you have the joint pain and if so, what helped the pain.?  I want to get walking but this "feet" pain issue is not making it very possible.

Also, I hve been taking Biotin supplements for the hair loss.  Its supposed to help.  Did your hair loss slow down while on the drug.  I am also worried this loss will go on and on while on the drug. !!     Thanks in advance for any help !

There is light at the end of the tunnel.  Phew!!

My hair loss was at the crown too.  I didn't notice for a long time because I rarely look back there.

I still have joint pain in my arms and hips.  I think mine is also due to Lipitor.  I take an anti inflammatory if it is really bad.

I think Curlylocks, You have a very good idea with the Glucosmine.  Many have tried it.  Now, don't laugh.  I used to give it to my old arthritic cat.  Vets orders.  I must try it also.  How much a day do you take?

Wish, men do have to take hormonal therapy, for prostate cancer.  In their case, the therapy suppresses testosterone levels.  Sometimes this is accomplished, in part, by giving them estrogen! 

I did some googling, and found a website describing the SE's associated with treatments for prostate cancer:  http://www.prostatecancerfoundation.org.  [I edited the original link, because it was too wide for the page.  Go to the main page to see the pages with SE's.] 

That website says, "There are six broad categories of side effects that are typically associated with prostate cancer treatments:   urinary dysfunction, bowel dysfunction, erectile dysfunction, loss of fertility, effects due to the loss of testosterone, and side effects of chemotherapy.  Depending on the treatment strategy used, some or all of these effects might be present."

Here's a list from that website, of SE's just from the testosterone deprivation.  Don't these sound familiar?: 

"The list of potential effects of testosterone loss is long:  hot flashes, decreased sexual desire, erectile dysfunction, fatigue, osteoporosis, weight gain, decreased muscle mass, anemia, and memory loss.  Most men who are on hormone therapy experience at least some of these effects, but the degree to which any man will be affected by any one drug regimen is impossible to predict."

I even read just today in my OncologySTAT newsletter that estrogen can fuel an especially aggressive type of prostate cancer in men.  So.... men who've been given estrogen to suppress their cancer could end up with a worse form of it, because of the treatment! 

I'm really not trying to be argumentative.  Really.  :)

It's just that prostate cancer is common, and it is sometimes just as aggressive and potentially lethal as BC can be.  And, the treatment is sort of the inverse of our BC treatments.  In other words, the misery of a cancer dx and treatment is spread pretty evenly throughout "humankind".

otter 

Otter,

<<<men>do have to take hormonal therapy, for prostate cancer>>>

Thats news to me. Hubby had prostate cancer 10 years ago a very aggressive form. Had the surgery to remove the prostate followed by rads. He was never put on any hormonal therapy and Dr never mentioned it. He was going for follow ups every 6 months but last year Dr switched him to once a year. He was 45 at time of DX.

Enjoy the day, Karin

I took 2 years of Tamoxifen and 3 years of Arimidex which ended March, 2006 after an original diagnosis of Stage 1 in 2001.  I too experienced MASSIVE hot flashes, not frequent, but bad when they happened.  They didn't last long but were definitely intensified with any ingestion of alcohol.   I also experienced intensifed muscle pain in areas that already bothered me; lower back and hips. I can say that when I stopped taking Arimidex,  the hot flash intensity decreased and I went from about 3 a day down to 1. My muscle pains also decreased in intensity and some actually disappeared.  My only concern was going off of Arimidex after the five years.  I posted on another forum ( recurrence and metastatic disease) asking of anyone knew if docs were prescribing it for longer than 5 years. 

This is an interesting thread.  I was wondering about the diminishing of SEs after 5 years.  I have only been on the Arimidex for 6.5 months, so I do have a way to go yet.  I think, though, that the time to be on this drug will lengthen after further research.  At any rate, I did ask my GP if the arthritic problems I am getting would go away, and she said probably not after 5 years.  But, like many of you, the problems are occurring in areas where there was a "weakness" anyway.  However,  the vaginal dryness and pain is not something I want to keep with me and I am currently using lots of Replens and twice weekly vagifem.  You know, I read that your body temp could reach as high as 106 during a hot flash?  Imagine that!

Wishiwere:   the hot flashes will stop.  It was unbearable for 5 years and now it has stopped!!  Hot weather and alcohol are the worst.

GayleB:   It is disappointing to learn that your GP said that arthritic conditions will continue after the 5 years of Arimidex.

BUT I keep reminding myself that side effects are a smallp price to pay for keeping Cancer at bay.

I have only been taking Arimidex since the end of June, and at first I cried with every pill and would say only 1000+ left to take. I had a lot of SE's at first but strangely except for hot flashes and a little stiffness they are gone, but not forgotten. I fear they will return at any given moment! I just read on the homepage under answers about menopause, that the Vagifem I use was studied and shown to raise our estrogen levels.. sh.. is there nothing safe once you've had BC? I was just getting comfortable again. I am glad to know that some of the SE's do go away after 5 years. Congratulations to those who have completed their course. I wonder if someday they will tell us to take it forever? Wishing you all the best.

Exactly half an hour ago I decided I AM DONE WITH ARIMIDEX! I was going to wait until I could talk to my doctor but I couldn't face one more day. Panic was setting in. Over the past few days the side effects have very suddenly escaleted and become intolerable. It began as just the fatigue and bone pain (pretty severe, but since I suffer from alot of pain anyway, I figured 'just keep going'), blood pressure climbing. I also was worried about some sharp weight gains, since I spent most of my life horribly overweight and lost it ALL 4 years ago...a real miracle...the weight gain was traumatic! But I have also become very nervous and irritable (like...look at me wrong and I'll bite your head off), and finally, for about the past 4 days, extremely depressed; severely! The initial physical ones I could 'live with' for 5 years. The addition of the last two, though, pushed it over the edge. The depression, particularly, is a killer. I was going to wait and speak to the doctor, but really can't. It's SOS! I can't believe I did this, but I have never seen depression move so quickly and so paralytically! Now I have to face my doctor....HELP!

Hi guys,  I'm back...and I mean 'I'm BACK'!  I'm going to post this on all of the arimidex groups because I really want others to know.  If it hadn't been for a post awhile back (sorry, I forget who posted it and don't have time to check right now) I would have 'just kept going'...but that post nagged at me.  I wasn't 'depressed' about the cancer...it really was an extreme 'chemical depression' that took me down so quickly I couldn't think straight!  I had been on arimidex for nearly 2 months and was dealing with all of the pain, fatigue, weight gain, etc...but the depression came on suddenly and for no reason...and it was a black hole! 

I met an acquaintance who looked at me and said 'what's wrong with you'?  She didn't know about the bc etc, and I poured out the whole thing.  Turns out she is a doctor and her husband a psych.  She told me to call my onc and tell her 'SOS, I'M IN TROUBLE WITH THE MEDS!'.  I was too depressed to do that, but got home and went to take my meds...and just decided...'no. I'm not doing this,'  The next morning (SEVEN HOURS LATER!!) I woke up with the alarm (instead of hours before it) for the first time in 2 mos, and the first thing I noticed was that everything had colors again!  The change was DRAMATIC!  I called my onc and she said not to worry, just stop taking it and we'd discuss 'change'.  I feel like myself again! 

I encourage you that if you are experiencing sudden depression, take it seriously! 

SOOO...I have nearly 2 boxes of arimidex to send as a gift to anyone who's insurance does not cover it and is tolerating the treatment.  It would be a blessing to me to be able to help out.  Our medicine is socialized here and I am so blessed by not needing to pay for it.  Please contact me here or post a personal reply.  Love and strength to each of you and thanks for your input, it really helped! 

I just finished five years of Arimidex about six weeks ago.  This afternoon I noticed "spotting",, never had any before,,  so will call the Onc tomorrow, I guess.  I am 55.  Still painful sex, actually, not still not interested!!  ugh!! 

Hi there..I finished up with arimidex two years ago..

I have finally been able to lose weight on a low fat diet

It did not work when I was on it...

the aches and pains gradually lessen, but I have

to say I still have some of them..for me the wrists

and above the ankles..

I still have to take the fosamaxD for the bone density loss I had

from the arimidex..

But folks, I am here and almost eight years out now.. 

I did have some hair thinning and it has improved a bit..

it was worth it to me..