Arimidex Side Effects, Real or Imagined?

kennethewood
kennethewood Member Posts: 10
edited March 2014 in Breast Cancer #1
OK. I just passed my third anniversary of surgery. So, I'm pretty happy with that. I did the whole pizza; mammogram, modified radical mastectomy with lots of lymph nodes removed, intensive chemotherapy, 33 sessions of radiation, follow-on Herceptin chemotherapy, and now Arimidex. A pretty amazing trip for a 58-year-old male. I still have plenty to look forward to because I'm going to be a grandfather for the first time this coming September.

My problem/question is this; I feel like crap every day. Some days it's better and some days it's worse. It's kind of like that feeling that you get when you're coming down with the flu or a bad cold. I ache all over and feel listless and lethargic. I did develop lymphedema in my right arm, but that is well under control. I had physical therapy and now have sleeves and gloves which control that situation just fine. I have had discussions with my oncologist and primary physician about the fact that I never ever feel really good. Relatively simple blood tests and routine physical examinations have revealed nothing. My primary physician sent me to one of the top rheumatologists in our area. After two visits to the rheumatologist, which included some blood tests for afflictions that I don't remember, she said, "Yes, you have fibromyalgia." I find a diagnosis for fibromyalgia to be a bit hokey, because it is a diagnosis that results from eliminating most other possibilities. We can't find anything else so it must be fibromyalgia. The rheumatologist didn't give me anything further except to try some swimming and, "Have a nice day." I have had discussions with my oncologist about quitting the Arimidex. But, I don't like the idea of increasing my chances of a reoccurrence, so I don't want to take that route.

So here's the situation in a nutshell. Mentally, I am blaming all of my "feeling like crap" issues on the Arimidex. My oncologist took me off Arimidex for three weeks about a year and a half ago and it didn't help. So, at the end of the three weeks he left me off it for another three weeks for a total of six weeks. I am betting that it takes more than six weeks for the effects of the Arimidex to go away. I have had intense discussions with my oncologist and my primary physician about the effects of Arimidex. Seeing as I am a male, there is no clinical evidence about the effect of Arimidex on males. The subject population is simply too small to get any data on. I have read lots of information about Arimidex. The data, at least as it applies to females, indicates joint and muscular aches and pains. It also indicates is some weight gain may occur. And through all of this I have managed to add 50 pounds which I really don't need. The clinical information about Arimidex also reads, "some weight gain may occur". There are also some known the mental side effects to this drug (depression). And, as I suspect is the case with most other survivors, on those days that I really feel like crap, I begin to wonder whether or not the cancer reoccurrence has started.

So, I am caught up in kind of this whirlpool thing. I feel like crap, so I don't get much exercise. Eating is a satisfier, not a motivator, so I pretty much eat what I want when I want to. I don't eat a whole lot but I don't watch it very well either. And, I don't get much exercise so that doesn't help either.

My question to the group is this. Are there other survivors out there who have completed the five-year regimen for a Arimidex? Did you have similar symptoms? Did the fibromyalgia like symptoms go away after you finished the five-year Arimidex treatment? Is there light at the end of the tunnel, or will I feel like this forever? If I am going to feel like this forever I'm definitely going to have to make some serious adjustments. It would certainly be a relief to know that this Arimidex is the primary cause of most of my problems, and once I complete the five-year Arimidex treatment all of my problems will go away. Now that I have finished writing this, that doesn't seem to make a lot of sense to me, either. So, writing this has at least been personally revealing.

Ken Wood

Comments

  • kennethewood
    kennethewood Member Posts: 10
    #2
    It's me again. I am the original poster. Oh by the way, I forgot to mention that my primary physician has given me a prescription for Tramadol. I take one or two of these every six to eight hours to help ease the fibromyalgia issue. It does seem to help, at least more than half of the time. And, while it does lessen the fibromyalgia affects, most of the time, I think that the lessening of pain, when it does happen, does bring with it a certain mild euphoria effect. I don't know if it's the drug itself that causes the euphoria or the fact that the pain is lessened somewhat that makes everything seem a little bit rosier. But even with that, life ain't no bed of roses.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #3
    I'm on exemestane, another aramatase inhibitor that works about the same way. Letrizole is the third variety. As I understand it, joint pain, is a known side effect of all of them, but some people are able to reduce their problem by switching from one to another. I've got a manageable case of it so far, but I definately get the aches and pains. It was most noticable after a short course of cortisteroids for a sinus problem. All the pain was gone for a lovely week. Then it returned, though my hips have remained less painful than initially. The doctor explained that you can't stay on steroids. They do rotten things to your kidneys and you need them. But pain is pretty rotten too. Right now I'm enjoying a vibrating massage cushion for my back as I work on the computer. It's heated and the combo seems to relax that area when it gets tight. I exercise EVERY day. The time that fits in my schedule is devestatingly early: every morning at 5:30 sharp I'm at the YMCA for spinning (M&TH), weight lifting(T&S)), aerobics(W) or yoga(F). Sundays I go walking when the weather is good. I can't run, but I manage a good walking pace most days. Getting out of bed in the morning is the most painful time. I've learned to use what they do in yoga at the end of a session. When we "wake up" from a relaxation session laying on our back, we wiggle our fingers and toes. Then we turn on our side in the fetal position. When we are ready, we sit up and take a few deep breaths. The wiggle time and slow moves to get up really help prevent the owww's when my toes hit the floor. The exercise helps too. I feel fairly pain-free for several hours after working out. My oncologist said to use ibruprofin or Tylenol if the pain was bothersome, but I don't use it often. Sometimes I use one of those muscle rubs, but I can't see a lot of difference. I have noticed that I have a little less achiness after eating salmon. The omega 3's are supposed to be helpful for joint conditions, so it may not be a total fluke. I have added a small handful of walnuts to my diet when I need a snack. They also have omega 3's in them to a lesser degree. Tumeric is a spice that may be helpful for joint aches, but I can't say I have noticed much difference with it. So good luck! Please post if you find something that works well. I'd be interested too!
  • Susan956
    Susan956 Member Posts: 510
    #4
    kennethewood said:

    It's me again. I am the original poster. Oh by the way, I forgot to mention that my primary physician has given me a prescription for Tramadol. I take one or two of these every six to eight hours to help ease the fibromyalgia issue. It does seem to help, at least more than half of the time. And, while it does lessen the fibromyalgia affects, most of the time, I think that the lessening of pain, when it does happen, does bring with it a certain mild euphoria effect. I don't know if it's the drug itself that causes the euphoria or the fact that the pain is lessened somewhat that makes everything seem a little bit rosier. But even with that, life ain't no bed of roses.

    Ken,
    I have been on Arimedex for about 1 1/2 years. It does cause joint pain and stiffness... and becuase of that it take real discipline to force yourself to stay activice and exercise. I am currently taking shag lessons... a fun way to exercise. I find that when I dance I don't think about how stiff my joints are....I also find that the more I make myself exercise the better I fell. Don't know if it will work for you... but you might give it a try..

    God Bless....

    Susan...
  • 24242
    24242 Member Posts: 1,398 Member
    #5
    Ken,
    I would venture to say the side effects are more to do with the chemo than with the drug taking. I had six rounds of 5 drug therapy at a time and no one wanted to talk about the side effects at the time because it might delay the therapy at hand and the system didn't want that. It was hard to continue when I got a raging staph infection and finally had to slow the regime. I spent the first 5 years of my survival getting diseases treated and the layers of pain were unbelievable. They would give one drug for something and the pain continued till I was on 5 medications and then finally on Methadone as well. For a few years I stayed like this but the whole time still feeling like I did at diagnosis of cancer is the only way I could discribe it. I felt like I had the flew 24 hours of the day along with the incredible pain to endure. Finally after about 5 years I was finally at wits end and 60 lbs heavier. Most drugs come with their own set of side effects as well. There is a certain of the population that is very sensative all that we are given and all that is done to us. There is plenty of evidence of this as well now. I have several arthritic conditions, irritable bowl, several nerve disorders which was the balk of pain source.
    I am now 10 years out off all medication and more often than not now out of pain. I have good and bad days and accept that I will never be the same. Getting back to fitness and changing the way I do things has brought me to a place the medical community thought I would never see. Thank God I did not listen to them and quit working and wanting a certain quality for my life. There is hope but one has to fight for it I sure did. I never stopped telling them how I was suffering and that shouldn't be happening in todays world. I was young and loud and truly got tired of fighting them for the help that I so deserved.
    Keep on fighting for what is yours to have
    Tara
  • kennethewood
    kennethewood Member Posts: 10
    #6
    24242 said:

    Ken,
    I would venture to say the side effects are more to do with the chemo than with the drug taking. I had six rounds of 5 drug therapy at a time and no one wanted to talk about the side effects at the time because it might delay the therapy at hand and the system didn't want that. It was hard to continue when I got a raging staph infection and finally had to slow the regime. I spent the first 5 years of my survival getting diseases treated and the layers of pain were unbelievable. They would give one drug for something and the pain continued till I was on 5 medications and then finally on Methadone as well. For a few years I stayed like this but the whole time still feeling like I did at diagnosis of cancer is the only way I could discribe it. I felt like I had the flew 24 hours of the day along with the incredible pain to endure. Finally after about 5 years I was finally at wits end and 60 lbs heavier. Most drugs come with their own set of side effects as well. There is a certain of the population that is very sensative all that we are given and all that is done to us. There is plenty of evidence of this as well now. I have several arthritic conditions, irritable bowl, several nerve disorders which was the balk of pain source.
    I am now 10 years out off all medication and more often than not now out of pain. I have good and bad days and accept that I will never be the same. Getting back to fitness and changing the way I do things has brought me to a place the medical community thought I would never see. Thank God I did not listen to them and quit working and wanting a certain quality for my life. There is hope but one has to fight for it I sure did. I never stopped telling them how I was suffering and that shouldn't be happening in todays world. I was young and loud and truly got tired of fighting them for the help that I so deserved.
    Keep on fighting for what is yours to have
    Tara

    My sincerest thanks to all of you for your replies. It really does help.

    Ken Wood
  • Joyce74
    Joyce74 Member Posts: 1
    #7
    i have been on arimidex for 10 months. i too have joint pains, especially in my shoulders. i also have tendonitis in my left shoulder and left wrist, recently diagnosed.i had amastectomy on the right breast-figure that one out. i've been thinking about asking my oncologist if i could switch to tamoxifen since that may be beneficial to your bones and joints and i also have scoliosis and osteoporosis. i'd appreciate replys from anyone in a similar situation.

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