CancerCompass message board discussion started by marjen on 3/1/2008 http://www.cancercompass.com/message-board/message/all,21548,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had a lumpectomy and 11 node removal, but no signs of cancer anywhere in the margins, bones, blood, etc. I had the full regime of chemo and radiation, 2 years of tamoxifen and now I'm on the final med: I started with Femara and this caused joint pain. I switched to Arimidex, and the same occurred. I'm now on my final choice - Aromasin - and I have the same pain in my feet, ankles, heels, knees, shoulders, elbows, fingers, wrists...and like others, I feel like a 90 year old.  Mornings are the worst, and after moving around for about a half hour, the pain subsides.  I exercise 4-5 times a week at Bally's: walking on the treadmill, 3 reps of 18 different weights, and the eliptical trainer for 15 minutes.  I feel great when exercising, but the next morning it's back to the same old pain.  In addition, like others, I cannot seem to lose weight, especially in the belly.I tried quinine sulfate for cramping when I was on Tamoxifen, and that was GREAT, except it has been removed from the shelves for purchase, even with a prescription.  I had edema and was given Requip, Furosemide and Potassium, but they have not helped much.Topical creams like Sportscreme and Salumpa patches have helped some for temporary relief.  I take Motrin and Asprin, and drink Condroiten/Glucosomine (sp) daily.  I'm now at a loss as what to do.  Is there a doctor out there that has any suggestions? marjen marjen Sat, 01 Mar 2008 00:00:00 GMT I am not a doctor, but I can tell you about my experience with the joint pain from the Femara I take.  Symtoms sound the same as yours.  My Oncologist asked me what made me think that Femara was resposible for the joint pain.  I said because I didn't have it before I took it....duh!  Goodness, they act like they have never heard of side effects from these drugs.  I am not saying I am going to quit it, just some help, please.  My family doctor started me on Lovaza for high cholesterol (Omega 3 acid ethyl esters or in simplier terms refined highly potent fish oil)  He said this may help your joint pain because he had talked to a Rhumatologist (spelling?) that was prescribing it for arthritis pain.  It started to help RIGHT AWAY!  I still have it, but toned down to where it has totally changed my life. I was blown away that my Oncologist never suggested this for joint pain....so I am going to ask him when I go in for check up this month.  I don't know what it has done for my cholesterol yet, as I just had my blood drawn this morning after one month of treatment.  I never had high cholesterol before Femara either, but I know what my Oncologist would say about that, also, so why bother. Anyway, I have never seen anyone talk about the Lovaza for joint pain on this site before, so hopefully my experience can be of some help to others.Best wishes to you.Linda Lou Linda Lou Wed, 05 Mar 2008 00:00:00 GMT Linda Lou,Thank you for your response.  I was so surprised to see how many people had similar complaints about these meds.  I was taken off all meds on Monday, so I'm monitoring the pain and stiffness.  They want to rule out rhumatoid arthritis.  I think Aromasin and the others are just too strong for me and it's creating the pain.  I asked if I could take it every other day or every other week, and she did not want to do that.  She is thinking of putting me back on Tamoxifen instead.  I go back next week, and I may be off all meds for a month to let my body recoup.  I have seen some relief, but it is too early to tell right now.  I will ask about the Lovasa next week.  Thanks for your help!margie marjen Thu, 06 Mar 2008 00:00:00 GMT Margie,I am a breast cancer survivior and as you, I´m going through anti-hormone treatment. The joint pain is caused by the lack of hormones. Hormones help the body to built collagen, which is the basis of the joints. You can´t built collagen without strogens. So, that´s what old women suffer, arthritis. I am becoming 40, but in the mornings I feel like having 65. What I do to fight stiffness and joint pain is I take a warm bath every day, and that helps me until the house work and some exersice does the rest. That´s what we have to go through to stay alive, but now something else we can do for ourselves during these 5 years of antihormones. I took Femara, and it was so painful, moved then to Arimidex and now I am with tamoxifen. I feel just right but still, some stiffness and joint pain. But my ovaries were taken away too, so at the end of these five years, there´s no way I could absorb any calcium for my bones because again of the lack of hormones, so, what I have been doing is taking calcium because the mollecular form of the antihormone medicine, is so similar to strogen mellecula that you do absorb calcium in your bones. I have five years to deposit as much calcium in my bones as I can, after that, my bones strengh will start to decrease with the subsecuence of bone breaking. Let´s face it, we are different from what we were before cancer, but could still make a difference in the lives of thouse around us, because we are alive!RosemarieOn 3/6/2008 marjen wrote:Linda Lou,Thank you for your response.  I was so surprised to see how many people had similar complaints about these meds.  I was taken off all meds on Monday, so I'm monitoring the pain and stiffness.  They want to rule out rhumatoid arthritis.  I think Aromasin and the others are just too strong for me and it's creating the pain.  I asked if I could take it every other day or every other week, and she did not want to do that.  She is thinking of putting me back on Tamoxifen instead.  I go back next week, and I may be off all meds for a month to let my body recoup.  I have seen some relief, but it is too early to tell right now.  I will ask about the Lovasa next week.  Thanks for your help!margie  rosemariebeatriz Thu, 06 Mar 2008 00:00:00 GMT I, too, have had the joint pains from Arimidex, a common ailment. My orthopedist suggested taking osteo-biflex, for joint care tho it didn't do much for the pain, so he shot me with cortisone in my hands, the worst places for me. Drastic but it helps, and I am changing to Tamoxifen. He is suggesting I try a medrol pack for systemic cortisone relief of overall pain and swelling...I intend to ask my doctor about that regimen next month...I also was diagnosed with atrophic vaginosis, NO symptoms, at my annual  pap smear which my gyn said is also a side effect of the Arimidex. I have ulcers from it and had nose bleeds and vaginal bleeding, too, even tho I had a hysterectomy years ago...seems like too much for one person to take on at once...wish they could find something better as I have 4 1/2 MORE years to go! wixy24 Fri, 07 Mar 2008 00:00:00 GMT I'm a survivor like you and have been on Arimidex 13 months when I started having hand and knee stiffness and pain. The pain is worse in my right hand (perhaps it's because I use that hand more since I'm right-handed). I'm in my early 50's but I feel older than my 80-year-old Mom sometimes. I told my oncologist about this and she said I can stop Arimidex for a month to flush it out of my system, then take it again. She said this sometimes works on some patients. However, I'm afraid my body might start producing estrogen if I stop Arimidex, so I use reusable hand warmers which I purchased online and massage and exercise my fingers when I first wake up or after a period of inactivity. As for the weight gain, I do exercise on the treadmill and limit my food intake but I'm still gaining weight slowly. I don't have edema, though. I'm cautious about taking Aleve or Celebrex or other Cox-2 inhibitors such as Vioxx and Bextra because previous studies have connected some of these medicines with an increased incidence of heart problems and stroke, and this is not even mentioning their adverse effects on the kidneys (http://www.ccjm.org/pdffiles/WEIR.PDF ). On particularly bad days, I take a couple of ibuprofens but I rarely do this since ibuprofen is also an NSAID. I'm thinking of consulting a rheumatologist if the pain gets too unbearable. I haven't tried glucosamine yet.    SunnyHeather Wed, 19 Mar 2008 00:00:00 GMT  On 3/19/2008 SunnyHeather wrote:I'm a survivor like you and have been on Arimidex 13 months when I started having hand and knee stiffness and pain. The pain is worse in my right hand (perhaps it's because I use that hand more since I'm right-handed). I'm in my early 50's but I feel older than my 80-year-old Mom sometimes. I told my oncologist about this and she said I can stop Arimidex for a month to flush it out of my system, then take it again. She said this sometimes works on some patients. However, I'm afraid my body might start producing estrogen if I stop Arimidex, so I use reusable hand warmers which I purchased online and massage and exercise my fingers when I first wake up or after a period of inactivity. As for the weight gain, I do exercise on the treadmill and limit my food intake but I'm still gaining weight slowly. I don't have edema, though. I'm cautious about taking Aleve or Celebrex or other Cox-2 inhibitors such as Vioxx and Bextra because previous studies have connected some of these medicines with an increased incidence of heart problems and stroke, and this is not even mentioning their adverse effects on the kidneys (http://www.ccjm.org/pdffiles/WEIR.PDF ). On particularly bad days, I take a couple of ibuprofens but I rarely do this since ibuprofen is also an NSAID. I'm thinking of consulting a rheumatologist if the pain gets too unbearable. I haven't tried glucosamine yet.    Hi SunnyHeather,Since my initial email question, I have done just what you described.  My oncologist pulled me off Arimidex and all the other meds for edema.  She told me to stop taking all the over the counter meds including vitamins, glucosamine, motrin, and the other diet aids.  I have been "pill free" for nearly 3 weeks now and I still have joint pain, but it has subsided and I can work the kinks out faster.  Stairs are still a problem after sitting for a while.  I stopped exercising for a week because I thought I'd see if this was contributing to joint pain.  I'm not sure it has, but I have to go back on the Aromasin on April 3....not looking forward to that.  Maybe flushing out my system will help me tolerate the Aromasin better.  I took the RealAge test and with all the exercise, it tested out that I was 5 years older than I am. But I feel 80....actually my mom is 87 and runs circles around me, so maybe 90 is more accurate.  There doesn't seem to be much we can do about this problem  It just doesn't seem right.Thanks for your response.  I wish you well. marjen marjen Sat, 22 Mar 2008 00:00:00 GMT Just an update on the Lovaza (prescription fish oil) I have been taking for a month and 1/2 now.  The joint pain continues to lessen each and every day.  I am riding a bike now.  My hands are no longer like "claws" in the morning.  Everyone can tell just by seeing me that I am better.  My original message is the first response above.  My primary Dr. put me on this.  I have since seen my oncologist and he was amazed that it helped so much and he knew nothing about how it might help joint pain.Linda Lou Linda Lou Thu, 27 Mar 2008 00:00:00 GMT  On 3/27/2008 Linda Lou wrote:Just an update on the Lovaza (prescription fish oil) I have been taking for a month and 1/2 now.  The joint pain continues to lessen each and every day.  I am riding a bike now.  My hands are no longer like "claws" in the morning.  Everyone can tell just by seeing me that I am better.  My original message is the first response above.  My primary Dr. put me on this.  I have since seen my oncologist and he was amazed that it helped so much and he knew nothing about how it might help joint pain.Linda Lou Hi Linda Lou,I have been off all meds, vitamins, diet aids, motrin, etc. for a month now, and I'm about 50% better, I seem to recover from the morning aches faster, but I'm still not satisfied.  I think if I stayed off, I might fully recover, but this week I have to go back onto my med regime.  I'm not looking forward to that.  I asked my oncologist about Lovaza and she said she would check it out.  I hope to try it.  I think she will be open to trying anything, as if my pain continues with Aromasin, she will put me back on Tamoxofin.  Keep me posted should Lavoza show even more improvement.  Thank you!marjen marjen Sun, 30 Mar 2008 00:00:00 GMT Hi Marjen,I continue to improve daily.  I suffered so badly, especially in the morning...hands, wrists, elbows, knees, ankles.  I picked up a stack of two plates and thought I broke my wrist it hurt so bad.  I am even starting to forget how terrible the pain was.  I was worried that it was too good to be true, but so far so good (over a month and 1/2).  I was amazed that my oncologist knew nothing about this.  He was impressed though, and did extra blood work (don't really know what) to make sure levels of whatever were ok.  Haven't heard anything...so must be good.  As I said, my regular doc prescribed this.  I sure hope that you can take the Lovaza and it will help you too as Aromasin inhibitors are clearly the best treatment.  I am relieved to stay on Femara.  I would have kept taking it even with the pain.  I took Tamoxofin for two years and now Femara until Sept. 2010 unless they change their minds before then.  I completed treatment Nov. 2003 for Stage II hormone receptor positive and so far so good.  I sure hope you find relief for your pain. Best wishes to you.Linda Lou Linda Lou Sun, 30 Mar 2008 00:00:00 GMT Hello Marjen I was on femara for 4 months and then the claw hands started.  Pills diddn't take the pain away so I stopped the Femara.  I sleep each night with wrist splints  on.  This allows me to sleep at night and there is slight discomfort in the morning.  One year later I still struggle with fine motor skills like doing up my bras and doing up necklaces.  The cold weather aggravates the condition.I decided not to take painkillers etc longterm because I haven't found them to be helpful.  I recommend the wrist splints when sleeping.  At least I get my sleep!  My hands hurt when I am driving too.   Hazel53 Fri, 04 Apr 2008 00:00:00 GMT Hi Marjen Also I developed cramps in the legs while on tamoxifen.  This was damm painful.  Didn't last long, but I was in tears.What I found to be useful is limit my intake of oranges and lemons and vinegar and sleep with my legs bent. Sleeping with the legs bent is really helpful.   Hazel53 Fri, 04 Apr 2008 00:00:00 GMT