CancerCompass message board discussion started by Jonip on 10/20/2005 http://www.cancercompass.com/message-board/message/all,3222,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was on arimidex for a year and began suffering severe bone pain in my knee joints and in my hands....so the ONC switched me to Arimidex, and while it seemed slightly better for a month or so, it is back again to being very painful....now the suggestion is Celebrex...however I see no reason to take another $200.00 a month medicine to counter the effects of a medicine that is supposed to help prevent the return of cancer....what happens if I stay off all medicine. Am I tempting fate. I was lucky first time, the lumpectomy seemed to have gotten it all and I had radiation and no chemo (it had not gotten into my Lymph nodes) but because I was estrogen positve I was told I needed to be on something for 5 years!!!...I feel worse now that before the surgery....any thoughts out there??? Joni Jonip Thu, 20 Oct 2005 00:00:00 GMT Jonip: I have hormone responsive breast cancer (stage 1). My surgery was Oct05, chemo & radiation. I began arimidex April06. I have to do alot of standing on my job. When I started back to work fulltime, I looked like a 90-yr old moving around. I was fine walking for short periods. After sitting down, getting out of the chair was difficult to say the least. I took some physical theraphy which helped a great deal. There is so much info out there, I'm never sure if what I've decided to do the right wasy to go. I've decided that taking the arimidex is a necessary evil. Hormones are in the foods we eat or own bodies produce hormones. Arimidex is like a 1st defense against oestrogen produced in the breast. If I'm not mistaken, it blocks the development of the hormone in your system. I am also taking Wellbutrin XL for the hot flashes & mood swings. The hot flashes are fewer especially at night. I found huge relief with a product called "Chillo pillow". It works between your pillow case & pillow. It provides cool relief at the base of your neck and seems to absorb the heat. I just found this message board and already have it on 'my favorites' list. Thank each and everyone that replies. We are sisters in this daily fight! Chemocurl Chemocurl Sun, 23 Oct 2005 00:00:00 GMT I am a member in very good standing in the joint pain,muscle pain,cramping in fingers,increase in cholesterol,and of course the all important NIGHT SWEATS!!!! club.Oh, forgot weight gain, and I can't even exercise! Anyway, I decided that all this still beats another round of breast cancer. I too use a chillow. I also found a great sleep shirt at www.redhotmommas.com The material wicks away any moisture so if you do sweat, you feel dry almost immediately. Hang in there, we have alot of company. Love and Hope,,Bobbie Frobbi Sun, 30 Oct 2005 00:00:00 GMT I have been on Arimidex since 2001. I have had some joint and muscle pain and some back pain this year. I asked my doctor if I could stop taking it and she said it is not an option because of the excellent protection it provides. When I asked about some of the other drugs people have mentioned on this site, she said they all have similar side effects and that she only knew about problems with feet and hands and does not think the back issues are related to Arimidex (she sees 30 patients a day so I guess she has some knowledge I don't). I have never heard of the chillow. Does anyone know where to get that? That sounds really useful. I find that if I am hot one minute I am going to be cold the next. I also have found that the night sweats get better over time but the hot flashes during the day get worse. For some strange reason, I have found that when I feel one coming on I can often stop it by breathing deeply. At work, I was able to get a net type chair instead of a solid one and that did a world of good. For exercise, I ended up doing stationary bike instead of treadmill. It has a fan on it and my feet do not hurt as much. I also put vaseline on my feet before I put my socks on and it seems to be better. Hope some of that helps...Love, Mary Marep Wed, 02 Nov 2005 00:00:00 GMT Hi.....I was on Arimidex for only about 3 mos--9-04 till 12-04. My body could not handle it( Arimidex made a mess out of my intestines!!) I have been on Aromasin for almost a year and I too, had joint pains. I use to take FYI from Garden of Life and found that it was very helpful BUT very expensive so I switched to FeelAnew. At first I was sorry for switching (the joint pain was bad!!)but I also knew I needed to give them a chance. Well I am not sorry now!! I feel pretty good. Plus I have been able to exercise!! I hope this info was helpful!! Kathy Kathy G. Fri, 04 Nov 2005 00:00:00 GMT Thanks, this does help. I think I will also look at FeelAnew for a little bit of help with the joint pain. Thanks again, MareP Marep Thu, 10 Nov 2005 00:00:00 GMT I too am on Arimidex for one year. I have terrible joint pain. MSM helps. give it a try. I also experienced hair loss. Anybody else? All the best Happydays Thu, 10 Nov 2005 00:00:00 GMT I was just reading a message in which you mentioned 'feelanew'. What is it and where did you get it? I have taked MSM in the past but without the grand results most people have. chemocurl Chemocurl Thu, 10 Nov 2005 00:00:00 GMT FeelAnew----this is what the box states......Joint Comfort Glucosamine & Chondroitin with Nexrutine. From reading the box Nerutine is a patent-pending natural COX-2 inhibitor. I found this product in Vitamin Shoppe (I live in New York) I have found that my knees and feets do not hurt as much since I have been taking this product (about 8 weeks) I hope this info has been helpful!! Kathy G. Sat, 12 Nov 2005 00:00:00 GMT Hi. Just want to comment on the celebrex you mentioned. It is a questionable drug to say the least. Don't take it. -Kitty Cousinkitty Mon, 28 Nov 2005 00:00:00 GMT Hi ,I found your message very iteresting. Since I had arthroscopic knee surgery 1 year before I was diagnosed with hormone receptive cancer, I never thought that the increase in knee pain could be from the aromasin.It is very limiting and find it hard to do my favorite exercise ( dance class). The knee surgen sugest physical therapy which I will do but at least I can't blame my knee pain on knee surgery that just didn't solve my knee problem when it could very well be the medication. I simply never thought of it. very enlightening. And yes I have had weight gain ( belly fat ), since I have always been rather slim this disturbs me as well as fears of diabeties with weight gain since I have a family history of this and did have gestational dibeties in 2 pregnancys. However, It would be foolish to risk a return of cancer if the meds can possibably prevent it . someone once said to me that you draw a line down a peice of paper , mark one efficacy and the other toxicity. and from this you can make a reasonable decision. A rock and a hard place. Thanks for sharing , ravenitz Ravenitz Mon, 02 Jan 2006 00:00:00 GMT Yes, knee pain. great difficulty in execising which I use to love I now find it so easy to blow it off. And yes belly,belly fat. Does this now mean that with weight gain one now has to worry about dibeties ? Hope I dont sound too negetive, I mean I am reading a great book, and I do have an adorable grandchild. Thank You for sharing, rosa Ravenitz Mon, 02 Jan 2006 00:00:00 GMT Has anyone out there found a solution to the weight gain and the joint pain from taking aromasin? I have just started exercising, but some days,, man... I hurt so bad I feel 80. Where do you find the feelanew? Kathyp Tue, 09 May 2006 00:00:00 GMT cheapest place I have found yet is ebay stores. Helen44 Fri, 12 May 2006 00:00:00 GMT Thank-god I am not the only one who is gaining weight with the aromasin. When I was on Tamoxifin I was actually losing weight slowly, but since he switched me to the aromasin, I have noticed my tummy is getting bigger. I would rather be on the tamoxifin but it was iritating my liver and causing my liver enzymes to elevate. Plus I dont think I had as much pain in my joints than I do now. Especially my feet and hands. I am glad I found this site because it makes me feel better about these things. But I want to know will the weight come off after we quit this medication. Does anyone know this answer. Plus I have steattle hepatitis caused by the tamoxifin and cannot crash diet because it will affect my liver, can you tell me what kind of diet I could be on without damaging my liver furter. Summer76 Wed, 11 Oct 2006 00:00:00 GMT Check breastcancer.org for information about how Celebrex is helpful in preventing reoccurance - while helping with joint pain caused by Aromasin, it is also helping with prevention.  I had the same type of breast cancer and treatment.  I am balancing the question of the risk of reoccurance with what has become debilitating pain and a significant decrease in quality of life.  I plan to talk to my oncologist  ASAP.  Today was especially bad since I twisted my ankle & fell down while moving, caused in part by my unreliable knees.  From what I've read, Arimidex seems to have the same side effects, and women are reporting significant brain disfunction from taking Femera. What's a gal 3 years out to do? Judit Sun, 18 Feb 2007 00:00:00 GMT  On 10/20/2005 Jonip wrote:I was on arimidex for a year and began suffering severe bone pain in my knee joints and in my hands....so the ONC switched me to Arimidex, and while it seemed slightly better for a month or so, it is back again to being very painful....now the suggestion is Celebrex...however I see no reason to take another $200.00 a month medicine to counter the effects of a medicine that is supposed to help prevent the return of cancer....what happens if I stay off all medicine. Am I tempting fate. I was lucky first time, the lumpectomy seemed to have gotten it all and I had radiation and no chemo (it had not gotten into my Lymph nodes) but because I was estrogen positve I was told I needed to be on something for 5 years!!!...I feel worse now that before the surgery....any thoughts out there??? Joni  Yaane Thu, 24 May 2007 00:00:00 GMT I was just reading all these messages and feel better knowing I am in the same boat.  I had a masectomy in Dec/o3 followed by chemo and radiation.  Started Tamoxifen in Aug/04 and was then switched to Aromasin almost a year ago.  While on Tomoxifen everything went great.  However 3 months into taking the Aromasin I started having joint pain in my fingers.  I t has gotton worse and my knees are know starting to hurt as well.  With the hand situation I can barely write anymore and is difficult opening bottles and even buttoning a shirt.  I  have also gained alot of weight (belly).  I still have another 2 years on Aromasin.  Does anyone out here who has been on it longer or is already off know if the joint pain goes away after.  Will I be back to normal? Or is it permanent damage?  I know it is better than a reacurrence (my cancer was 99% estrogen receptive) but I am a 43 year old who feels like she is 60!Waiting to hear from someone!Thanks,maggie Magali Sun, 01 Jul 2007 00:00:00 GMT  On 7/1/2007 Magali wrote:I was just reading all these messages and feel better knowing I am in the same boat.  I had a masectomy in Dec/o3 followed by chemo and radiation.  Started Tamoxifen in Aug/04 and was then switched to Aromasin almost a year ago.  While on Tomoxifen everything went great.  However 3 months into taking the Aromasin I started having joint pain in my fingers.  I t has gotton worse and my knees are know starting to hurt as well.  With the hand situation I can barely write anymore and is difficult opening bottles and even buttoning a shirt.  I  have also gained alot of weight (belly).  I still have another 2 years on Aromasin.  Does anyone out here who has been on it longer or is already off know if the joint pain goes away after.  Will I be back to normal? Or is it permanent damage?  I know it is better than a reacurrence (my cancer was 99% estrogen receptive) but I am a 43 year old who feels like she is 60!Waiting to hear from someone!Thanks,maggie My son who is a doctor asked me to check with the doctor to see what the percentage of improvement of my long term health was if I stopped the Aromasin.  Taking Tamoxifin first and then Aromasin later would improve my chances of surviving 5 years by 15 percent.  The Tamoxifin made me miserable and I gained a lot of weight so he switched me to Aromasin earlier than usual.  The Aromasin really made my joints hurt, or so I thought.  My doctor said that I could go off it for a month and see what the results were.  Because I had been on the first medication as long as I was, I had reduced my chances to 8 percent and then with the time on Aromasin, it had been reduced to 4 percent.  That 4 percent balanced against the pain seemed like a reasonable choice.  Now I am going on vacation for a month to a very dry climate and I want to see if that will ease the pain in my joints.  If so, I think I will just go back on the Aromasin and put up with it.  I'll do something else to attach the arthritis.  Hope this helps.  Know what you mean about the belly fat! Yaane Sun, 01 Jul 2007 00:00:00 GMT chemocurl(lol) my friend had super curly hair after chemo the first time and after the 2nd time it's striaght. Anyway where did you find the chillo pillow?I'm having a difficult time with hot flashes day and night. I took tamoxifen for 3 yrs and am now on aromasin and it's killing my joints. Going to see the dr next week.pp pattypoo Fri, 03 Aug 2007 00:00:00 GMT