Aromasin

I am a 13 year Breast Cancer survivor, but now have been diagnosed with mastastisis in sternum & rib. Had radiation & was put on Femora, that had all the side effect of the new drug - Aromasin & the hip that I am now taking for last 8 months. The knee, leg, ankle pain is awful. Stiffness in hands & can hardly move fingers somedays. Exaustion everyday. I was told I had Carpul Tunnel when they did nerve testing, & also was told I needed a hip replacement after an MRI.  I never had these aches & pains until I was put on these drugs. I feel it is the drugs causing all the pain & stiffness. Has anyone got off these drugs & are now free of the pain? Or is it permanent damage that will require surgery to fix? I feel if I have surgery to fix the problem now, won't it just come back if I am still on the Aromasin for a few years.. I am really confused with the diagnosis from doctors?? Do they really know about all the problems these drugs are causing? They seem to quick to fix it with surgery. Any suggestions on whether the pain goes away after being off these medications would be so helpful to know.

Joan

Hi Joan,

There are hundreds and hundreds and hundreds of women who have really bad side effects with the anti-estrogen drugs.  They induce an especially severe chemical menopause (above and beyond normal menopause) that can really play havoc with the body's immune, nervous and joint systems. And no, it doesn't seem like most of the drs have any idea just how excruciating ill these drugs can make a person.

Yes, there are women who have stopped taking these medicines and have recovered from their pain and symptoms.  sometimes it takes a while, but is possible.  And there are women who have stopped taking them and have become cancer free, or at least in remission.  It takes determination and persistence, but is possible.

My recommendation is to find a naturopathic practitioner (whether it be a dr, a nutritionist, an herbalist, a homeopath or practice of ayurvedic or traditional chinese medicine) and work with them to construct a natural regimen that will limit your body's access to cancer-feeding estrogen while continuing to meet the hormonal needs of your body's many systems.

Feel free to take a look at what I did when I was diagnosed with highly estrogen-receptor positive metastatic breast cancer and could not tolerate the anti-estrogen drugs.  My regimen is not a guaranteed answer for anyone else, but you can get a great idea of things you can start doing to decrease your estradial level while simultaneously providing the nutrients your body needs.  Many elements of my regimen factor in the need to treat fibromyalgia and arthritis - so there are supplements in it that should help to relieve your bone pain, also. 

my story

http://motherearthtreasurechest.blogspot.com/2008/08/my-stor

my regimen
http://motherearthtreasurechest.blogspot.com/2008/09/my-pers

Wishing you the best of luck and health,

Tre

Hi, I am so sorry that you are experiencing the pain. I know what you are going through. After radiation and chemo the doctor put me on Arimidex, it was horrible pain and nausea. Then I took Aromasin for nearly a year and it was finally the pain and the depression that drove me back to the doctor to "rethink" it. I used to knit and crochet all the time but my hands were so bad I needed help changing channel on the TV! Besides the fact that it was costing me $300 a month out of pocket. My doctor changed me to Temoxiphan and its been a month. My hands are so much better I bought yarn today to begin an afgan. The hip pain is there but is brought under control with pain meds and I am hoping that it will get even better. I am 66 and not willing to sacrifice myself for 5 years to Aromasin and only a couple percent worse risk. Everyone has to make their own decision on this, the doctor will not really help you out. That is mine, I thought I'd tell you. You are in my prayers, be better. Rosalie

Dear Joan - I am a five year survivor, diagnosed at 37 with stage 3 breast cancer (20 positive nodes).  I was treated with intense chemo, I skipped radiation (long story), and then I was put on tamoxofin.  I developed extremely serious blood clots while on tomaxofin and so quickly was moved to arimidex, then femera and now aromasin.  I changed meds because of the joint pain which can be significant.  I have been on aromosin for a year and a half now and have found that the pain has begun to diminish.  I will continue the regimine for a total of 10 years since I flunked tomaxifin.  I recently began Zometa because of worry about my bones (since you have bone mets which are extremely serious I hope that you are being treated with Zometa as well as aromasin).  Zometa also caused severe bone pain which lasted a few days.  I have also done dietary changes etc., but my cancer spread while on that regimine alone ( to additional lymph nodes).  The side effects can be really upsetting but metatsis to the bone is even more painful. I am a trained scientist, I have read all the studies, and believe that in spite of the side effects that aromasin is my best option for long term survival.  Everyone has to decide which side effects they can bear and how much risk they can stand - and what is right for one person is not right for another.  I don't think that i would jump to surgery which also has side effects and pain. I have young children so I tolerate the joint pain and osteoporis.  I hope that you find the answers you need and feel better.  Amelie

 

On 3/18/2009 Yorkie Lover wrote:

I am a 13 year Breast Cancer survivor, but now have been diagnosed with mastastisis in sternum & rib. Had radiation & was put on Femora, that had all the side effect of the new drug - Aromasin & the hip that I am now taking for last 8 months. The knee, leg, ankle pain is awful. Stiffness in hands & can hardly move fingers somedays. Exaustion everyday. I was told I had Carpul Tunnel when they did nerve testing, & also was told I needed a hip replacement after an MRI.  I never had these aches & pains until I was put on these drugs. I feel it is the drugs causing all the pain & stiffness. Has anyone got off these drugs & are now free of the pain? Or is it permanent damage that will require surgery to fix? I feel if I have surgery to fix the problem now, won't it just come back if I am still on the Aromasin for a few years.. I am really confused with the diagnosis from doctors?? Do they really know about all the problems these drugs are causing? They seem to quick to fix it with surgery. Any suggestions on whether the pain goes away after being off these medications would be so helpful to know.

Joan

 

Hi Joan,   I did hormonal treatments for many years and aromasin seemed to do the most for me.  It took my tumor markers (CA27 29)all the way down to 29 which was lower than when they discovered my cancer had come back.  At one point, when I was doing Tamoxifen, they were all the way up to the 700's, but the scans did not show progression so my onco kept me on tamoxifen. With the tamoxifen, I was thrown into menopause and also had the bone and muscle aches with it and gained a LOT of weight. I was only on arimidex for a short time before going to Aromasin which kept everything under control for a long time.  I did have bone pain.  At one point they were actually treating me for arthritis, but I am still not sure if I had it at all.  I had a knee replacement about 6 years ago and think that it corrected most of my other aches and pains.  I was walking off balance and did not realize how much that could effect your back and joints  It probably sounds crazy, but I do not really recall what other side effects I had from it, but know I was upset when we had to switch because it meant the cancer was active again. I am one of these people who forget pain once it is gone and guess I should document things more.  I actually did have carpal tunnel surgery and am sure that was caused by my job....also have had bunionectomies and some foot surgery because my feet are a mess.   I really don't have any bone pain now except for my shins and they found my one leg is a little shorter than another so it is probably from that and orthodic inserts seem to help. All of the bone and muscle aches I had from the medications did go away.   Right now I am doing chemo, have lost hair as well as my sense of taste and am constantly congested and get muscle cramps, but not as much as I used to.  Cutting off your estrogen definitely effects your bones.  So you get zometa or anything to help with your bones? 

 

On 3/18/2009 Yorkie Lover wrote:

I am a 13 year Breast Cancer survivor, but now have been diagnosed with mastastisis in sternum & rib. Had radiation & was put on Femora, that had all the side effect of the new drug - Aromasin & the hip that I am now taking for last 8 months. The knee, leg, ankle pain is awful. Stiffness in hands & can hardly move fingers somedays. Exaustion everyday. I was told I had Carpul Tunnel when they did nerve testing, & also was told I needed a hip replacement after an MRI.  I never had these aches & pains until I was put on these drugs. I feel it is the drugs causing all the pain & stiffness. Has anyone got off these drugs & are now free of the pain? Or is it permanent damage that will require surgery to fix? I feel if I have surgery to fix the problem now, won't it just come back if I am still on the Aromasin for a few years.. I am really confused with the diagnosis from doctors?? Do they really know about all the problems these drugs are causing? They seem to quick to fix it with surgery. Any suggestions on whether the pain goes away after being off these medications would be so helpful to know.

Joan

 

 i have been on fermera and arimadex and every since i stated taking i have been feeling sick on and off then i stop for a few days then i start again cause i feel overly drugged.. i have been having bodyaches and pain and joint pain ,just some weird things going on with my body . i stopped taking fermera then went to arimadex for just a few weeks not has bad but i was noticeing swelling and gaining weight hot flashes was not has bad.. keep in mind i dont have my ovaries anymore had a hyst. and which i wish i never gotten due to me feeling so uckky all the time not sure why.. i started back on fermera and felt like it was to strong for me so i stop taking for a few weeks to experiment to see if my symptom would stop and feel a little better but still with body aches was off for about  two weeks .. my dr thinks i may have fibro myalgia be monitored by a rhematologist for the next month or so .. my oncologist thinks i am nuts with all my syptoms .she thinks not all my sypmtoms are not realated to these drugs but not that i have been on this web site i see i am not alone..i am going to try aromasin next but i am kinda scared ,what do you think of tomoxifin did you get alot of side  effects let me know..maybe i can ask my oncologist for that one... i had stage 1 breast cancer last year and hope it never comes back. it was hormone fed per my doc forgot the name of what i had but i know that it had somthing to do with hormones feeding the cancer.. please write back,, thank you

The side effects of Tamoxifen might not be so bad for you, but if you are not tolerating Femara or Arimidex, I very sincerely doubt you will tolerate Aromasin. (I could not tolerate the Tamoxifen, Arimidex or Aromasin - they were all a very bad combination with my fibromyalgia.)

Sincerely,

Tre

 

On 3/18/2009 Yorkie Lover wrote:

I am a 13 year Breast Cancer survivor, but now have been diagnosed with mastastisis in sternum & rib. Had radiation & was put on Femora, that had all the side effect of the new drug - Aromasin & the hip that I am now taking for last 8 months. The knee, leg, ankle pain is awful. Stiffness in hands & can hardly move fingers somedays. Exaustion everyday. I was told I had Carpul Tunnel when they did nerve testing, & also was told I needed a hip replacement after an MRI.  I never had these aches & pains until I was put on these drugs. I feel it is the drugs causing all the pain & stiffness. Has anyone got off these drugs & are now free of the pain? Or is it permanent damage that will require surgery to fix? I feel if I have surgery to fix the problem now, won't it just come back if I am still on the Aromasin for a few years.. I am really confused with the diagnosis from doctors?? Do they really know about all the problems these drugs are causing? They seem to quick to fix it with surgery. Any suggestions on whether the pain goes away after being off these medications would be so helpful to know.

Joan

 

My mother had stage 2 breast cancer last july 2007 and underwent mastectomy. she did not go through chemo or radiation but was advised to go on tamoxifen. she took tamoxifen for about a year until there was suspicion of liver cirrhosis (which is a common side effect of tamox).she shifted to Aromasin and she's been in good shape. her tumor count is very low, i think the last one was 4. recently, we were surprised that there seemed to be some problems with her bone.she underwent a bone scan and the doctors could not tell whether its osteoporosis or bone metastasis..I feel that it's aromasin which caused these to her bones. fortunately though, she is not experiencing any pain yet. Is this a common effect of aromasin?

 

yes, there are lots of bone problems with aromasin - seemingly more than the drug company wants to admit or than the drs realize

Sorry to hear about all the troubles you have had with the Femora & Aromasin.  I have had all the side effects also with both of these, aching bones, crippling of my hands & fingers, exaustion. Weight gain on the Aromasin. I did take Tamoxifin 13 years ago when I was first diagnosed with breast cancer, I took this for 5 years after Chemotherpy. I had severe night sweats,weight gain, tiredness & bone aches, bothersome, but not so crippling as the Aromasin & Femora has been. I am now also receiving Zometta intervenous treatments as well to strengthen the bone to help fight off cancer cells from invading. Will not know if these treatments are working until next bone scan in October. A long time to wait to see if this is helping & extremely expensive.

I do hope you find a medication that helps, it is very difficult to know what will or will not help. I find it very hard to communicate with some of the doctors to get a good feeling that I am doing all the correct things, I sometimes  feel like a number not a person every time I go in for an oncologist visit.  Keep in touch.

Joan