CancerCompass message board discussion started by Roz57 on 9/13/2005 http://www.cancercompass.com/message-board/message/all,2936,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been having such bad side effects from Arimidex - painful hip and knee joints and down the bones of the legs, fingers and wrists - that my oncologist has told me to try Aromasin to see if the side effects are lessened. I am wondering if there is anyone out there who has also changed and how the are doing since taking the new drug. I was on Arimidex for almost 2 years of which the first 3 months were fine, then gradually the aching started and for the last 3 months or so I can actually feel my body deteriorating. If there is anyone out there who sees this will they let me know how they are doing on the new drug and what the side effects are? Regards Ros Roz57 Tue, 13 Sep 2005 00:00:00 GMT Hi Roz, I have just switched to aromasin from arimidex this week, so I can't comment on the side effects yet. The reason I changed was because of hot flashes, but I recently began having a lot of pain in my thumbs and wrists. I had only taken arimidex for 3 months before the pain started. I just thought it was arthritis, but another woman suggested it might have been the medication.I think she is right. I'm hoping the pain subsides with aromasin and will keep you informed every so often. akl55 Akl55 Sun, 02 Oct 2005 00:00:00 GMT Thanks for replying and it would be great if we keep each other informed about our progress. Since posting this message I have been to my oncologist who also agreed that I should not be subjected to such side effects of Arimidex and has just authorised through the medical aid Aromasin and I take my first pill tomorrow. I hope the side effects are not so bad but again they could be worse. I have not suffered from hot flashes though, thank goodness, just excrutiating pain in the hips and knees and leg bones. There is another wonderful website in uk if you are interested, you can post serious questions and they also have a coffee shop which is really a lot of fun. It's www dot breastcancercare dot co dot uk. Funnily enough it was a lady in Philidelphia who told me about it on this web site. Go well regards Roz. Roz57 Mon, 03 Oct 2005 00:00:00 GMT I will keep you informed on my progress with the aromasin. After i week on it, my hot flashes are maybe a little better. I'm keeping my fingers crossed. The pain in my thumbs and wrists has not changed yet. I hope you have good luck with the new med. I have not seen my oncologist since this pain began, but will see him in January. Thanks for the web site address. I will check it out. Be well, Arlene Akl55 Wed, 05 Oct 2005 00:00:00 GMT Roz I just joined this site and posted a message very similar to yours before I read yours...neither medicine is without the pain in the hands and joints....there should be a better way...Joni Jonip Thu, 20 Oct 2005 00:00:00 GMT After 3 months on Arimidex I had excruciating wrist, hand, and arm pain. I went off of it for a month, and took 6 days of prednisone. The pain subsided, so I tried Aromasin. after only 2 days, the pain came back. I have opted to not take any more pills as I felt so lousy,so am going to take my chances that my breast cancer will not return. After 6 weeks of no pills, the pain has not gone away. I am trying tylanol for Arthritis now, but am afraid the pain could be permanent. Time will tell. I had an MRI to see if a pinched nerve in the neck was the cause of my problems, and it was not. The Doctors answer is pain pills or therapy, but I haven't tried that yet. I'll keep you posted. Lois Loisve Sun, 13 Nov 2005 00:00:00 GMT Just keeping in touch and wondering how you are doing on Aromisin? I've almost finished 2 months of it now and my hip and leg bone pains aren't so drastic, definitely getting a better nights sleep. I am getting very stiff heels though in the morning but when I have been on the healthwalker for 10 minutes they seem to limber up. Hope you are doing ok and keeping well. Regards Roz x Roz57 Tue, 15 Nov 2005 00:00:00 GMT Well, I decided to stop taking the aromasin one week ago as my hand and wrist pain wasn't any better with that med. My doc doesn't know yet. I see him in January. I must say that my hip pain has subsided a little, but the thumbs and wrists aren't any better. I'm seeing a bone and joint doctor next week. I've already had a shot of cortisone in my thumb and it helped. I think that maybe I won't go back on any of the meds because I really don't like ANY of the side effects. I guess I'd rather take my chances than feel like crap the rest of my life! I'll stay in touch and you do the same! Stay well!! Arlene Akl55 Tue, 15 Nov 2005 00:00:00 GMT I liked your message because I feel the same way. I am a 3 plus yera Breast cancer survivor. I took Tamoxifin, and stopped due to shortness of breath, and then Arimidex for 2 years , and then stopped it because of what my oncologist called fibromyalgia. The side effects were making it too difficult to functionm. I just had a total hysterectomy(ovaries and uterus out) to make sure there is no estrogen hiding in my body, and now my doc wants me to take Aromasin. He said if I have side effects I can stop and then be done with these meds. Hopefully, it willbe OK. I;ll le you know. Tina Tinas Wed, 11 Jan 2006 00:00:00 GMT Hi Tina, Just got into my e-mail today to find your message. I have now been off aromasin since November 2. I must say I feel 100% better than when on it. However, my wrist pain was just dealt with last week. I was finally diagnosed with tendonitis in that wrist. It was very painful and depressing because I work with my hands. I am a hairstylist. I finally got a shot of cortisone which seems to have taken care of the pain. I am totally convinced that the arimidex started all those problems with my hands. I also have trigger finger in 2 fingers of the same hand. I feel that I probably had a tendency toward those kind of problems, but it's funny that the symptoms never appeared until 3 months on arimidex. The whole thing started with tingling and numbness and just was exacerbated as time past. Other side effects included hair loss (that has stopped) and a rise in my cholesterol (that is back to normal). I see my doc in 2 weeks and will announce that I am done with the meds. I am six years past my treatment and had 5 years of tamoxifen. I feel like my quality of life is most important now. Keep in touch! Arlene - Akl55 Fri, 13 Jan 2006 00:00:00 GMT Arlene, It is great you are a 6 year survivor! I am glad you are done with your meds. In your last message, you say you've been off aromasin since Nov. 2. Why did you go off it? I just started aromasin, and I am very concerned with the dizziness. I've only taken it for a week. I am extremely sensitive to all medication. My oncologist told me I am one of the most sensitive to meds he has seen. I hope this dizziness goes away. Did you have dizziness? The arimidex was terrible, and I had hair loss ,too. It has started growing back thank goodness.I am glad I'm done with arimidex. Good luck with your hands! I know that must be very frustrating as a hairstylist. I'll let you know how this aromasin works out. If I have bad side effects, and if the dizziness doesn't go away, I'm going off it. God Bless you and I'll keep you in my prayers. Tina Tinas Sun, 15 Jan 2006 00:00:00 GMT Tina, I went off the aromasin as a result of the problems I was having with my hands as well as the other side effects. I pretty much felt bad all the time in terms of pain in my hip joints and hands. My oncologist didn't tell me of any of the side effects of these meds. It was a friend, who is a survivor as well, that told me. I then began trying to find any information I could about the side effects. That is how I came upon this website. I read of the pain and other things being experienced by women on arimidex, aromasin and femara and realized that I was having the same things happen to me. It is all due to the lack of estrogen. I decided that I wanted to keep all the estrogen I could for as long as I can. I am 55 years old and was feeling as if I were 85. I would rather have a better quality of life at this point, thus the reason I stopped the meds. I didn't make the decision lightly. I have to say that I feel better than I have since last March which is when I first started the arimidex.I did not have any dizziness with any of these meds. Hope yours goes away! Arlene Akl55 Sun, 15 Jan 2006 00:00:00 GMT I just found this web-site and I'm soooo excited that I'm not crazy. I started Armidex 4 months ago and at first had no side effects. As time went on I started noticing strange things, like falling, extreme hot flashes that went on all day and all nite, extreme aches in my shoulder, wrist and hip, nasty sores on my buttocks, down the back of my leg and on my upper arms. First these sores would itch. When scratched they would start hurting. None of them healed. Throughout all this I was extremely anxious. I finally called my Onocologist and told him some of the discomfort I was having. He took me off the medication immediately (I have moved out of state and can't just go to him for a quick check up). I have been off the medication 3 weeks. I don't see any improvement, but I have an appointment to see the onocolgoist, an orthopedic Dr and a dermotologist this coming week. I'll keep everyone posted! Thanks for having a web-site such as this. Curly Head Mon, 16 Jan 2006 00:00:00 GMT Hi, I was placed on femara and took it for almost a year. I asked to get off the femara twice before my oncologist switched me to aromasin. I had bone pain and felt 90 years old. I am 57. I know I will get aches and pain with age but this has been more than a normal agin process. My oncologist told me I was the only patient complaining of bone pain. I now have been on aromasin and the bonoe pain is maybe 15% better but the pains in my wrists are getting wors. I can't use my left hand much due to trigger finger. I am considering going off this medicine because I am in pain and wouldn't be surprised if some of thes medicnes get recalled in a few years for the harm they aren causing. I have had a reoccurence two years ago . Before that I was cancer free for 12 years. When I was on tamoxifen I only had hot flashes which I can deal with. I am happy to talk to you and don't feel so alone with this pain. Dragnfly Wed, 08 Feb 2006 00:00:00 GMT Thanks for responding to my message. I am no longer having pain in my hands and wrists. I saw an orthopedic surgeon in the beginning of January and got 3 cortisone shots in my hand and wrist. The hand was for trigger finger.I can't tell you how much better I feel. All the pain is now gone. I have not taken the arimidex or any other drug since November. I saw my oncologist 2 weeks ago and told him of the side effects I had. I also told him I was not going to take any of those meds. He then told me that a recurrence was unlikely considering all of the results of my bloodwork over the years. (6 years since the end of treatment) I also had tamoxifen for 5 years. It made me wonder why he even started me on it in first place. If I do have a recurrence, I'll deal with it at that time. In the meantime I'll keep my fingers crossed tnat I stay healthy. I hope the same for you! Akl55 Fri, 10 Feb 2006 00:00:00 GMT I was so happy when I found this web-site. I was on Armidex for about 3 months when I started feeling like I was 90 years old. I could hardly walk and my body ached. My oncologist made me feel like I was complaining. She said we are all getting older and she to has pain when she gets up. She said my pain was not from my meds but would switch to something else. I started femara and again in a few months I had the same symptoms with very very sore hands. I stopped the femara and my body feels a little better but my hands are very painful. I went to an orthpedic surgeon and I have 3 trigger fingers and a cyst in one hand. I know it is due to the femara but of course they don't even respond to me when I said that. I can't get an injection in that hand because I am afraid that it will cause me to get lymphdema in my arm. I was told surgery was my only alternative. I did find a web site that said massage, warm parafin, soaking hands in hot water a few times a day. I am going to try these alternative before I get any surgery. Maybe when I am off these drugs my hands will heal. It makes me so depressed because my work involves my hands and I can hardly use them. I see my oncologist next week and she wants to start me on Aromasin? What I have just read I think it is the same as the other drugs. Does anyone feel the same way? I am a 4 1/2 year survivor on meds and I think I want to stop now. I want to be healthy but I do not think these drugs are good for anyone. Does anyone have mouth lesions? That was another thing I think is due to these meds but my doctors don't think so. I just want to feel better. Again, I am so happy to find the site. Bonbon1 Fri, 28 Apr 2006 00:00:00 GMT Sorry to have taken so long to respond to your message. I've been out of town for a week. I think that until the doctors have taken any of this medication, they need to listen to their patients and their complaints. I also believe that you need to be your own advocate for your health needs. I made the decision to go off of arimidex based on a lot of searching the internet on the side effects of these meds. Some women have different responses to these meds. I myself know of at least 2 other women who are on arimadex and have none of the side effects that I did. As for the cortisone shots in your hand, I had three in my surgery hand and wrist and had no effects other than relief from the pain which has not returned. I feel that had I remained on the med I would not be able to work. I can't tell you how much better I feel since I've been off of it. If I were you, I would take the shots. I wish you well. Arlene Akl55 Sun, 07 May 2006 00:00:00 GMT The past 2-1/2 yrs I've been on arimidex following a recurrence of breast cancer. I had a mastectomy following my original diagnosis 26 years ago. I felt well on no medication for 22 yrs. The stiffness, muscle and joint pains in wrist, shoulder and hips are getting worse. Since I'm 78, the pains were attributed to old age. I've stopped taking arimidex 3 weeks ago but the oncologist wants me to switch to aromasin. Are the effects less? If I do not take anything, will the pain subside? Phiza Sat, 23 Sep 2006 00:00:00 GMT Hi Roz: This month I am a 5 year breast cancer survivor.I started with tamoxifin, then arimidex and femera. My doctor wanted me to start aromasin but I decided to stop all drugs 5 months ago. I had body aches and severe had pain with trigger fingers in both hands and all my doctor could say was " we are all getting older and she to had pain" That was the last straw and I decided to be my own advocate and do what I had to do. I was told my only alternative to the trigger fingers was surgery. That was not an option for me as I have to work and that meant 6 weeks recovery one hand. That was not an option for me. I knew all my pain and hand problems was because of the drugs. So, that was why I made the decision I did. Today I am feeling much better. I still have one hand with stiffness and trigger finger but I can live with that. I had an MRI six months ago and everyting seemed to looked okay. I wish you well whatever you decide on. Bonbon 1 Bonbon1 Sun, 24 Sep 2006 00:00:00 GMT  On 9/13/2005 Roz57 wrote:I have been having such bad side effects from Arimidex - painful hip and knee joints and down the bones of the legs, fingers and wrists - that my oncologist has told me to try Aromasin to see if the side effects are lessened. I am wondering if there is anyone out there who has also changed and how the are doing since taking the new drug. I was on Arimidex for almost 2 years of which the first 3 months were fine, then gradually the aching started and for the last 3 months or so I can actually feel my body deteriorating. If there is anyone out there who sees this will they let me know how they are doing on the new drug and what the side effects are? Regards Ros My mother (74) was changed from arimidex to aromacin. She is having excrutiating pain in her breas and in her arm when she lifts it. She decided to cut down to one every other day and says she feels better - less pain - she is scheduled for her first mammography since her surgery a year ago. Well see - she is positive and feels she is cured. I hope so. Good luck to you too Gladys Mon, 25 Dec 2006 00:00:00 GMT