CancerCompass message board discussion started by Malki on 3/20/2008 http://www.cancercompass.com/message-board/message/all,22168,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was taking arimidex for a year before I switched over to aromasin. It seems to me that after prolonged use both create the same joint and bone stiffness, swelling and pain. Recently, I have been experiencing pain on the bottom of my leg so that it is hard for me wear shoes. I also get cramping in my toes at night. I really don't know what to do as I don't want to get used to pain killers. I took Darvocet for a while, but one of my doctors told me that 'it is a bad drug," so i stopped. In addition, I am also taking Lexapro for depression and clonazepam for anxiety. I wonder if any one else experienced these side effects. Before my breast cancer the only medication I took was Darvocet, as i have spinal stenosis. Now, I have a medicine cabinet full of drugs and i still can't sleep at night. I need help!!!! Malki Thu, 20 Mar 2008 00:00:00 GMT  On 3/20/2008 Malki wrote:I was taking arimidex for a year before I switched over to aromasin. It seems to me that after prolonged use both create the same joint and bone stiffness, swelling and pain. Recently, I have been experiencing pain on the bottom of my leg so that it is hard for me wear shoes. I also get cramping in my toes at night. I really don't know what to do as I don't want to get used to pain killers. I took Darvocet for a while, but one of my doctors told me that 'it is a bad drug," so i stopped. In addition, I am also taking Lexapro for depression and clonazepam for anxiety. I wonder if any one else experienced these side effects. Before my breast cancer the only medication I took was Darvocet, as i have spinal stenosis. Now, I have a medicine cabinet full of drugs and i still can't sleep at night. I need help!!!!I've been taking Aromasin since Dec '07...and experience severe arthritis-like pains.  Joint pain, bones are howling, stiffness, etc.  It is very difficult for me to walk when I first get out of bed.  I believe it is the Aromasin and not the cancer (Stage 4 breast with mets to bones) that is causing the pain.  I, like you, never took any meds before the diagnosis and now have a counter full.  I take Vicodin (2-3/day) to relieve some of the pain...some days it works better than others.  I also take Benadryl allergy at night to sleep (had been on Ambien but it made me feel like a zombie).  I'm taking a low dose (37.5 mg) of Effexor for anxiety and that seems to help as well.  Hang in there and be strong--it makes the cancer wonder what we are up to!I've beachbabe Thu, 20 Mar 2008 00:00:00 GMT i am on arimidex,have been on it sence sep of 07  i had all the aches in my joints pain even in my chest  my arms legs  ached at diffrent times  during the day but i was told it tkes  6 months on the med s  and then it will stop   the aches and pains and i have to say  it  has gotten better and the hot flashes at night i  have still  , but i have to say the past 2 night s  i havent woke with any hot flashes  but it may change now that im bk home , i had to have surgery again and of course they had me on some heavy drugs in the hospital  i have never tken  the aromasin, i will be staying on the arimidex as it seems to be working for me   good luckOn 3/20/2008 Malki wrote:I was taking arimidex for a year before I switched over to aromasin. It seems to me that after prolonged use both create the same joint and bone stiffness, swelling and pain. Recently, I have been experiencing pain on the bottom of my leg so that it is hard for me wear shoes. I also get cramping in my toes at night. I really don't know what to do as I don't want to get used to pain killers. I took Darvocet for a while, but one of my doctors told me that 'it is a bad drug," so i stopped. In addition, I am also taking Lexapro for depression and clonazepam for anxiety. I wonder if any one else experienced these side effects. Before my breast cancer the only medication I took was Darvocet, as i have spinal stenosis. Now, I have a medicine cabinet full of drugs and i still can't sleep at night. I need help!!!!  freeatlast Thu, 20 Mar 2008 00:00:00 GMT  On 3/20/2008 freeatlast wrote:i am on arimidex,have been on it sence sep of 07  i had all the aches in my joints pain even in my chest  my arms legs  ached at diffrent times  during the day but i was told it tkes  6 months on the med s  and then it will stop   the aches and pains and i have to say  it  has gotten better and the hot flashes at night i  have still  , but i have to say the past 2 night s  i havent woke with any hot flashes  but it may change now that im bk home , i had to have surgery again and of course they had me on some heavy drugs in the hospital  i have never tken  the aromasin, i will be staying on the arimidex as it seems to be working for me   good luckOn 3/20/2008 Malki wrote:I was taking arimidex for a year before I switched over to aromasin. It seems to me that after prolonged use both create the same joint and bone stiffness, swelling and pain. Recently, I have been experiencing pain on the bottom of my leg so that it is hard for me wear shoes. I also get cramping in my toes at night. I really don't know what to do as I don't want to get used to pain killers. I took Darvocet for a while, but one of my doctors told me that 'it is a bad drug," so i stopped. In addition, I am also taking Lexapro for depression and clonazepam for anxiety. I wonder if any one else experienced these side effects. Before my breast cancer the only medication I took was Darvocet, as i have spinal stenosis. Now, I have a medicine cabinet full of drugs and i still can't sleep at night. I need help!!!!I have been taking arimidex since 2006 and have had no joint pain.  I have also been on "Mangosteen" since before that and attribute that for my lack of joint pain.  you can just "google"  Mangosteen to find out more about it.  I have night & day sweats but they have become much less severe and less often.  I use 20mg of melotin at night for sleep and because it kills cancer cells.  I also take 3 tablets of valerain root and if I wake up in the middle of the night, I rub an herbal ointment for sleep on my upper lip with helps.  Most health food stores "especialy Whole Foods" can help you with sleeping aids that are herbal and not harmeful.  Good Luck,       Jackie  Yackiejay Thu, 20 Mar 2008 00:00:00 GMT Hi, I too had same problems, joints, stiffness, depression. Went back to taking tamoxifin, not nearly the side effects that other drugs have.  Kimarie Kimarie Fri, 21 Mar 2008 00:00:00 GMT I have been on all three of the AI drugs: began with Arimidex, switched to Femara, now on Aromasin. Side effects are the same with all of them. I had horrible pains in my joints, in my arms and legs, at night sometimes I'd have hip pain, and I have extreme hot flashes--both number (40-50 a day at one point) and intensity (dripping sweat, feeling like I was on fire). I've twice skipped my AI drugs for a week just because I needed some relief and the side effects did improve. (So if they ever let us stop taking these drugs maybe the side effects will go away forever!) My onco very much does NOT want me to stop the medicine so she has encourage me to do whatever I need to to control the side effects. So she has me on Percodan 5mg as often as I need it. And truthfully, I have found that I keep the pain well under control with 1 Percodan in the morning and 1 around lunch time. Late evening I usually have milder pain and I take a couple of Darvocet. (I don't know why your doc said it is a bad drug. If you don't take too many I can't see why it would hurt.) I was worried about addiction, etc. but I have never felt the need to take more pills than I need to control the pain, which my onco says means I am not addicted. One other thing that has really helped--exercise. As hard and painful as it is, the more you move, the better you feel. When I can get out and take a long walk my aches and pains are not nearly as bad. We have to hang in there for the long haul, so don't worry about the pain meds. Take the pills, take long walks, do whatever you need to do to feel better. Suzie M Fri, 28 Mar 2008 00:00:00 GMT I am on Arimidex now for about 1 month. I have much bone pain . I have found that Omega 3 Fish Oil Capsules and Calcium with Vitamin D helps me a lot. The pain is much less now. I still get headaches and dry eyes but the bone pain was the worst of the side effects.The Fish oil and Calcium is cheap and they really do help me. It's worth a try,it may help you all.Hugs Shirley ShirleyM Fri, 28 Mar 2008 00:00:00 GMT Hello.  I have been taking the other aromatase inhibitor Femara for 4 yrs. and also experience many of the same symptoms as you are having.  I have 2 ideas for you instead of pain meds.1. Physical therapy in water, specifically in a heated pool2. AcupunctureI have found acupuncture helps and that means frequent treatments, maybe weekly for awhile and then bi-monthly.  Most insurances now cover acupuncture or if yours does not maybe you can find a foundation that funds cancer patients' alternative therapies.  I refuse to take pain meds as I don't want to tax my liver anymore than it's already been due to so much chemo.   I hope this info helps you a little.  I am just thankful that I am still here after having breast cancer twice (1st time in 1989) Reoccurence in 2003 with mets to the sternum. Femara seems to be working for me and I'm living with the side effects!  Good luck.  Hadia  Nbhadia Sat, 29 Mar 2008 00:00:00 GMT After 2 1/2 years on Tamoxifen, I was afraid to switch to Arimidex because of all the stories I had heard of the bone pains.  I already had knee and hip arthritis and spinal stenosis.  I have now been on Arimidex for 9 months without any pains.  We will all react differently to these meds, but don't automatically blame them for new problems.  Be sure to be tested to rule out other conditions.  I attended a lecture just a few nights ago where an oncologist recommended 1)  switching to a different AI to see if pains subside or to Tamoxifen, and 2)  try 1000 mg D3 supplements.  Also, for those of you with severe hot flashes/sweats, after I didn't have improvement when taking Effexor 75, 150 or even 225 mg, I now take 0.1 mg Clonidine and have greatly improved  (no, I'm not normal, but I rave about the difference) ! maylo Sat, 29 Mar 2008 00:00:00 GMT I have read many complaints on various blogs about joint and bone painand sleeplessness in those who take Arimidex. For those suffering jointand bone pain from taking Arimidex, I have some news. My doctor(s)recommend calcium and vitamin D supplements which have helped megreatly and will probably help you. It seems Arimidex may inhibit yourability to absorb Vitamin D and thus inhibits your body’s ability toabsorb calcium(?) Anyway, get your blood D levels tested and don’t besurprised if they are low. Ask your doctor how much calcium and vitaminD are right for you. Also, a moderate exercise program (swimming isgreat) will help with sleep and muscle pain. I have been taking acalcium supplement and about 200 percent of daily recommended D forabout 3 weeks and I already notice a big difference. If you are takingan aromatase inhibitor, it would be a bad idea to stop without talkingto your doctor about the vitamin D/calcium connection first. YesWeCan Sun, 30 Mar 2008 00:00:00 GMT  On 3/28/2008 Suzie m wrote:I have been on all three of the AI drugs: began with Arimidex, switched to Femara, now on Aromasin. Side effects are the same with all of them. I had horrible pains in my joints, in my arms and legs, at night sometimes I'd have hip pain, and I have extreme hot flashes--both number (40-50 a day at one point) and intensity (dripping sweat, feeling like I was on fire). I've twice skipped my AI drugs for a week just because I needed some relief and the side effects did improve. (So if they ever let us stop taking these drugs maybe the side effects will go away forever!) My onco very much does NOT want me to stop the medicine so she has encourage me to do whatever I need to to control the side effects. So she has me on Percodan 5mg as often as I need it. And truthfully, I have found that I keep the pain well under control with 1 Percodan in the morning and 1 around lunch time. Late evening I usually have milder pain and I take a couple of Darvocet. (I don't know why your doc said it is a bad drug. If you don't take too many I can't see why it would hurt.) I was worried about addiction, etc. but I have never felt the need to take more pills than I need to control the pain, which my onco says means I am not addicted. One other thing that has really helped--exercise. As hard and painful as it is, the more you move, the better you feel. When I can get out and take a long walk my aches and pains are not nearly as bad. We have to hang in there for the long haul, so don't worry about the pain meds. Take the pills, take long walks, do whatever you need to do to feel better.Suzie,I was on Arimidex for 1 year and now Aromasin for a year.  The side effects are just so bad - constant pain and I am trying not to take too many other drugs.  I take Effexor for depression and have xanax when my TMJ gets real bad.  The pain got so bad that I was raiding my med. cabinet for any pain pills left over from surgery in Aug. 2005.  I go to Jazzercise 2-4 times/week and walk when I can.  I try to stay as active as possible.  I am also on Crestor for high cholesterol.  I've tried to handle the cholesterol issue naturally but was unsuccessful.  Everyone in my family is on meds for this.  I am single, 52 yrs old and own a house.  I can't afford to have someone do everything for me so I have to keep active in order to keep up with things at home.  My problem is this.  I just went off Aromasin for 2 weeks and feel so much better.  My oncologist suggested this to determine the cause of the pain - joints and muscles.  I know that Aromasin is the culprit for most of the pain but some of the other meds I'm on have similar side effects.  So the last thing I want to do is take more drugs.  I'm already on way too many for my liking.  And don't get me wrong - I am very grateful to God to be here.  But tomorrow I have to call my oncologist - it's been 2 weeks - to tell her how I feel.  I know she wants to put me on Tamoxifan and I'm having a hard time accepting that.  She says I need to be on AIs for at least another 3 years.  I'm just looking for the best treatment, that causes me the least pain and does not have some other weird side effect like a link to uterine cancer.  Thanks for letting me vent but I'm so frustrated.  2ndChance Tue, 15 Apr 2008 00:00:00 GMT Amen to your comments! I am starting to think that the Aromasin is worse than Arimidex or Femara, at least for some of us. I met a nurse last week who was also a BC survivor like us and she had switched from another AI drug to Aromasin and she found she also had even worse pain. So I may ask to switch back to Femara, see if it eases up a bit. I'm also unwilling to switch to Tamoxifen because I worry about the more serious side effects (another cancer? no way!) and like you I hate taking a lot of meds. I was 47 when I was diagnosed and not taking anything but a multivitamin and the occasional aspirin. So it is hard for me to accept taking an AI drug plus all the drugs to manage the side effects of the AI drug! But if you can get some real relief, maybe one more drug is worth it? My doc put me on Percodan and assured me I would not get addicted and she was right. I have taken about the same amount from day 1 and it really does relieve the pain to a great degree, enough to let me function. Maybe your onco will give you something stronger for pain? We gotta do what we gotta do, sisters, and if that means taking pain meds to stay on the AI drugs, then so be it. That said, I always respect the choices other women make. It is so hard to know what to do and we each have to decide what is right for us. Bless you all and buena suerte, good luck. Suzie M Tue, 15 Apr 2008 00:00:00 GMT On 3/28/2008 ShirleyM wrote:I am on Arimidex now for about 1 month. I have much bone pain . I have found that Omega 3 Fish Oil Capsules and Calcium with Vitamin D helps me a lot. The pain is much less now. I still get headaches and dry eyes but the bone pain was the worst of the side effects.The Fish oil and Calcium is cheap and they really do help me. It's worth a try,it may help you all.Hugs Shirley Ah, thank you Shirley. I can't believe I forgot the Fish oil! My cancer surgeon recommended it when I first started the AI drugs and was struck with the HORRIBLE pains. And I believe that it has helped, especially the pains in my knees that gave me the most grief. It doesn't eliminate the pain, at least for me it doesn't, but I really think it helps. And it is good for your heart, which is probably a good idea for those of us who got that lovely "red devil" chemo, Adriamycin. Apparently it is not good for the heart :( Suzie M Tue, 15 Apr 2008 00:00:00 GMT On 3/29/2008 Nbhadia wrote:Hello.  I have been taking the other aromatase inhibitor Femara for 4 yrs. and also experience many of the same symptoms as you are having.  I have 2 ideas for you instead of pain meds.1. Physical therapy in water, specifically in a heated pool2. AcupunctureI have found acupuncture helps and that means frequent treatments, maybe weekly for awhile and then bi-monthly.  Most insurances now cover acupuncture or if yours does not maybe you can find a foundation that funds cancer patients' alternative therapies.  I refuse to take pain meds as I don't want to tax my liver anymore than it's already been due to so much chemo.   I hope this info helps you a little.  I am just thankful that I am still here after having breast cancer twice (1st time in 1989) Reoccurence in 2003 with mets to the sternum. Femara seems to be working for me and I'm living with the side effects!  Good luck.  Hadia  I would love to try acupuncture, but here in Mississippi, antiquated and overly-friendly-to-physicians state laws make it almost impossible to practice acupuncture. As a result we have only one acupuncturist anywhere close to me and she is basically not taking patients. It's good to know it helps you, though. I may try traveling to Louisiana for treatments, although the cost may prevent that. Suzie M Tue, 15 Apr 2008 00:00:00 GMT  Hi SusieNo the Fish Oil Capsules and Calcium with Vitamin D, does not eliminate the pain but it really does help and like you said it is good for the heart and arthritis. I don't think anyone could go wrong by taking these supplements.Also I went to my Rheumy and he gave me Colchicine for the inflamation of the joints. It is also helping some. It is for Gout which I don't think that I have but I can't take pain pills b/c I have allergic reactions to them. After surgery they gave me Morphine and I had HIVES from head to toe and my throat started swelling shut. I went back to the Oncologist today and she still won't take me off the Arimidex,but I know it's the very best drug for me right now.Later she will give me Tamoxifen but not for several months.I hope you are feeling better and I will remember you in Prayer, NOTHING helps like Prayer.Hugs Shirley ShirleyM Tue, 15 Apr 2008 00:00:00 GMT  On 3/29/2008 maylo wrote:After 2 1/2 years on Tamoxifen, I was afraid to switch to Arimidex because of all the stories I had heard of the bone pains.  I already had knee and hip arthritis and spinal stenosis.  I have now been on Arimidex for 9 months without any pains.  We will all react differently to these meds, but don't automatically blame them for new problems.  Be sure to be tested to rule out other conditions.  I attended a lecture just a few nights ago where an oncologist recommended 1)  switching to a different AI to see if pains subside or to Tamoxifen, and 2)  try 1000 mg D3 supplements.  Also, for those of you with severe hot flashes/sweats, after I didn't have improvement when taking Effexor 75, 150 or even 225 mg, I now take 0.1 mg Clonidine and have greatly improved  (no, I'm not normal, but I rave about the difference) ! Are you still on the Effexor? 2ndChance Fri, 18 Apr 2008 00:00:00 GMT Yes, I'm still taking Effexor, but only because I found I was a happier person on it.  It never helped me with the hotflashes & sweats and might even cause some of my excessive sweats. maylo Sat, 19 Apr 2008 00:00:00 GMT  On 4/19/2008 maylo wrote:Yes, I'm still taking Effexor, but only because I found I was a happier person on it.  It never helped me with the hotflashes & sweats and might even cause some of my excessive sweats.the reason I was asking is because I'm trying to figure out which side effects are caused by which drug.  Going off the Aromasin for 2 weeks alleviated the muscle pain but not the joint pain.  I already had minor arthritis so maybe the Aromasin was making it worse. 2ndChance Mon, 21 Apr 2008 00:00:00 GMT