Arimidex

I did, too
lreilly,

This is a long response, but I hope it helps...
I was there, too. My first oncologist had me on Arimidex and insisted that I stay on it. I was miserable for four months, because I was too scared to stand up for myself. Finally, I brought a friend with me who had no problem being my voice.

To make a long story short, I left him and found an oncologist who would listen to me. My pain was real and I did not think one should take drugs to rememdy the side effects of other drugs, and this what my first oncologist wanted me to do. I was miserable.

You may be like me, and do not respond well to drugs. I can't remember the 2nd drug I was given (I think it began with a "T" but it was not tomoxiphen). It also caused me to have painful side effects. I would ask your oncologist to try a different drug. If he/she doesn't want to consider this option, I would consider finding another onocologist.

If I have learned but one thing while on this journey, it's that we need to learn to take control of our destiny. We may not make the choices that the doctors may want us to make, at least not all the time, but they don't have to live with the cancer--we do.

My current oncologist, is willing to have me try anything. He let me experiment with natural rememdies (they didn't work, but at least I tried them) and he is also very creative about how to approach taking these cancer meds (ie adjusting the scheduling, such as one month off and 3 months on, or every other day).

Everyone reacts to these meds differently. I have not been able to take any of the meds without suffering from most, if not all, of the side effects. Currently, I have stopped all meds to get my body back on track. My dr told me we will talk at my next visit in July. In the meantime, I am off all drugs.

I think eating right foods and exercise are essential to a healthy lifestyle, but since we don't really know causes cancer how do we know that changing what we eat can prevent cancer? I was a health food vegetarian and was dx with invasive breast cancer 3 years ago. Where I live, it is on record that this area has the highest ocurrance of breast cancer in the state. Does that mean that we have a more unhealthy diet than other people in this state? It is also recorded that this area has one of the highest incidents of bc in the country. I find it very hard to believe that this is due to poor diets, since many people in this state are very oriented to an outdoors lifestyle (hunting, kayaking, hiking,...).

I don't doubt that there may be natural rememdies, but we don't know enough about them. There has not been enough research done on these drugs as to how well they are able to reduce the probability of reocurrance of cancer or prevent it. Regardless, I tried them anyway.

Even though I love my new oncologist, I have considered going to the Women's Center in Ohio (Cinncinatti?) with the hope that they can help me with my med issues (if I cannot find a resolution here). I find it hard to believe that there is no drug (natural or otherwise) that cannot reduce the chance of recurrance without making one miserable in the meantime.

I would begin by testing your current oncologist's ability to listen. Based on how well he/she listens (I mean really listens) take your next step and take control. At least you will know that you have been an active participant in your treatment without totally disregarding what your oncologist suggests. I value the doctors' expertise (even the arrogant ones, such as my 1st oncologist), and I believe that they do have our best interest at heart; however, I have to keep reminding myself that inspite of this, they are not the ones forced to live with cancer--we are.

Hope this helped.

dmc

dmc_emmy said:

I did, too
lreilly,

This is a long response, but I hope it helps...
I was there, too. My first oncologist had me on Arimidex and insisted that I stay on it. I was miserable for four months, because I was too scared to stand up for myself. Finally, I brought a friend with me who had no problem being my voice.

To make a long story short, I left him and found an oncologist who would listen to me. My pain was real and I did not think one should take drugs to rememdy the side effects of other drugs, and this what my first oncologist wanted me to do. I was miserable.

You may be like me, and do not respond well to drugs. I can't remember the 2nd drug I was given (I think it began with a "T" but it was not tomoxiphen). It also caused me to have painful side effects. I would ask your oncologist to try a different drug. If he/she doesn't want to consider this option, I would consider finding another onocologist.

If I have learned but one thing while on this journey, it's that we need to learn to take control of our destiny. We may not make the choices that the doctors may want us to make, at least not all the time, but they don't have to live with the cancer--we do.

My current oncologist, is willing to have me try anything. He let me experiment with natural rememdies (they didn't work, but at least I tried them) and he is also very creative about how to approach taking these cancer meds (ie adjusting the scheduling, such as one month off and 3 months on, or every other day).

Everyone reacts to these meds differently. I have not been able to take any of the meds without suffering from most, if not all, of the side effects. Currently, I have stopped all meds to get my body back on track. My dr told me we will talk at my next visit in July. In the meantime, I am off all drugs.

I think eating right foods and exercise are essential to a healthy lifestyle, but since we don't really know causes cancer how do we know that changing what we eat can prevent cancer? I was a health food vegetarian and was dx with invasive breast cancer 3 years ago. Where I live, it is on record that this area has the highest ocurrance of breast cancer in the state. Does that mean that we have a more unhealthy diet than other people in this state? It is also recorded that this area has one of the highest incidents of bc in the country. I find it very hard to believe that this is due to poor diets, since many people in this state are very oriented to an outdoors lifestyle (hunting, kayaking, hiking,...).

I don't doubt that there may be natural rememdies, but we don't know enough about them. There has not been enough research done on these drugs as to how well they are able to reduce the probability of reocurrance of cancer or prevent it. Regardless, I tried them anyway.

Even though I love my new oncologist, I have considered going to the Women's Center in Ohio (Cinncinatti?) with the hope that they can help me with my med issues (if I cannot find a resolution here). I find it hard to believe that there is no drug (natural or otherwise) that cannot reduce the chance of recurrance without making one miserable in the meantime.

I would begin by testing your current oncologist's ability to listen. Based on how well he/she listens (I mean really listens) take your next step and take control. At least you will know that you have been an active participant in your treatment without totally disregarding what your oncologist suggests. I value the doctors' expertise (even the arrogant ones, such as my 1st oncologist), and I believe that they do have our best interest at heart; however, I have to keep reminding myself that inspite of this, they are not the ones forced to live with cancer--we are.

Hope this helped.

dmc

Emmy... thanks for sharing..
Emmy... thanks for sharing.. I really needed to hear that too... There are so many things to consider in this venture and I guess some of us are a little intimidated by or doctors and their expertise... I know that I knew I had this lump for a long time.. each mamogram they said I was fine.. I never even brought it up to the radiologist figured if it was anything to worry about he would see it.. not until it grew to the point I could feel it standing up did I finally voice up...should have never gone silent! Again thanks for sharing.

~T

I agree that I feel worse
I agree that I feel worse now than during chemo and radiation. I've been on Arimidex for 3 months and before that it was Femara for 3 months. Same side effects on both meds - lower back aches, leg stiffness after inactivity and vaginal dryness. Right now I'm willing to do whatever I can to prevent recurrence, but I don't feel my side effects are horrible. I guess you're the judge on whether the side effects/risks outweighs the benefit of taking the meds.

dmc_emmy said:

We know
T,

You're right! We should feel as though we know our own bodies and have the self-assurance to protect it. I hear the same story, over and over again, from so many women who were complaisant and did not question a doctor's interpretation of a test result, even though they knew that something was wrong--myself included.

I, also, knew something wasn't quite right, but it never occured to me that it could be cancer--infection maybe, growing pains most likely... It was the summer of 2006 and, since it was such a beautiful day, I decided to ride my bike down to a local facility to have a mammogram, instead of going to my regular GP. I didn't feel like taking the long drive to my own doctor, nearly an hour away, just to have a routine mammogram done. That was my first mistake.

When it came back "normal," I thought I had just been worried for nothing and continued to enjoy my summer off from work. Even though I would often be awakened by sharp pains, I ignored them and was stupid enough to think that I was simply over-reacting. That was my second mistake.

It was around November, and I thought I should get a long over-due PAP done. The PA asked me how long I had had the lump, and I causally responded, "Well, it seems like forever." She was not so casual. She gave me the name of a surgeon and told me to go see her. Well, school had started and I was back to a hectic schedule, and I didn't really see the urgency. I had other things on mind, a very needy special ed caseload and my daughter and I were, for the first time since teaching in the district, finally at the same school-she was a senior in hs. We thought this was going to be the best year, ever! Besides, the lump had been there for a very long time, why worry now? That was my third mistake.

I finally got around to calling the surgeon (should I mention I saw some urgency now, because whatever was growing inside my breast was now external) and, after a little phone tag, we connected. She must have seen some urgency, she saw me the next day, it was December 10th.

To shorten this story a bit, the surgeon confirmed that it was invasive bc and, though it did not show up on the mammogram, it was growing at a very fast pace. She scheduled surgery for the first week in January, by that time, it had gone spread to a (yes, only one) lymph node, but it was the size of a golf ball.

I'm glad my PA didn't take this casually, but so much for the best year ever.

I suppose, as I think about the past three years, I realize that I have learned some valuable lessons from all of this: be confident in yourself, know when to speak out, and seek a second opinion if you're not satisfied. I also learned that life is good, but it's not always fair.

dmc

I am so sorry that it took
I am so sorry that it took so long... I understand trust me. Never again will I be silent when I have a concern. It is our life... not just a doctors mistake.

~T

Hi Ireilly. I am not on
Hi Ireilly. I am not on hormone therapy yet, but, I think they have talked about tamoxifen for me. But, I am still in rads, so, not taking it yet. Sorry you had problems with Arimidex. I wish you good luck!

Ask if you can take a break
Ask if you can take a break and switch to another AI. Some women have found that they have less se when they switch to another AI. I had a hard time with Arimidex and now I'm trying Aromasin. I may have to get an antidepressant with this one but I'm not crippled up yet like I was with Arimidex. Good luck to you.

hugs
jan

phoenixrising said:

Ask if you can take a break
Ask if you can take a break and switch to another AI. Some women have found that they have less se when they switch to another AI. I had a hard time with Arimidex and now I'm trying Aromasin. I may have to get an antidepressant with this one but I'm not crippled up yet like I was with Arimidex. Good luck to you.

hugs
jan

I hope you feel better soon!

I hope you feel better soon!

arimidex adverse effects
i have carpal tunnel syndrome from using arimidex; my onconologist didn't believe me so i made a print-out of the facts from the arimidex website that says arimidex can cause carpal tunnel syndrome
in those predisposed to it, and mailed it to him. he also didn't seem to be aware of the fact that trials are taking place on using arimidex after five years. seems to me there should be a 'clearing house' where oncons can go check up-to-date information.

dmc_emmy said:

We know
T,

You're right! We should feel as though we know our own bodies and have the self-assurance to protect it. I hear the same story, over and over again, from so many women who were complaisant and did not question a doctor's interpretation of a test result, even though they knew that something was wrong--myself included.

I, also, knew something wasn't quite right, but it never occured to me that it could be cancer--infection maybe, growing pains most likely... It was the summer of 2006 and, since it was such a beautiful day, I decided to ride my bike down to a local facility to have a mammogram, instead of going to my regular GP. I didn't feel like taking the long drive to my own doctor, nearly an hour away, just to have a routine mammogram done. That was my first mistake.

When it came back "normal," I thought I had just been worried for nothing and continued to enjoy my summer off from work. Even though I would often be awakened by sharp pains, I ignored them and was stupid enough to think that I was simply over-reacting. That was my second mistake.

It was around November, and I thought I should get a long over-due PAP done. The PA asked me how long I had had the lump, and I causally responded, "Well, it seems like forever." She was not so casual. She gave me the name of a surgeon and told me to go see her. Well, school had started and I was back to a hectic schedule, and I didn't really see the urgency. I had other things on mind, a very needy special ed caseload and my daughter and I were, for the first time since teaching in the district, finally at the same school-she was a senior in hs. We thought this was going to be the best year, ever! Besides, the lump had been there for a very long time, why worry now? That was my third mistake.

I finally got around to calling the surgeon (should I mention I saw some urgency now, because whatever was growing inside my breast was now external) and, after a little phone tag, we connected. She must have seen some urgency, she saw me the next day, it was December 10th.

To shorten this story a bit, the surgeon confirmed that it was invasive bc and, though it did not show up on the mammogram, it was growing at a very fast pace. She scheduled surgery for the first week in January, by that time, it had gone spread to a (yes, only one) lymph node, but it was the size of a golf ball.

I'm glad my PA didn't take this casually, but so much for the best year ever.

I suppose, as I think about the past three years, I realize that I have learned some valuable lessons from all of this: be confident in yourself, know when to speak out, and seek a second opinion if you're not satisfied. I also learned that life is good, but it's not always fair.

dmc

natural therapies
Hi dmc,

I just posted a blog to you but called you emma - sorry about that! I will therefore repeat myself and reply to you again. Basically, I was wondering what natural therapies you were referring to when you said you tried them and they didn't work. Were they for the sole purpose of reducing estrogen in your system or for some other reason?

I have just completed 6 cycles of chemo and am due to start on Arimidex. The side effects really scare me and I am thinking about trying a DIM supplement which reduces the estrogen in your body naturally without all the nasty side effects!

Have you heard of this?

blaircoff said:

Arimidex
Hi Emma,

I note in your blog that you have tried several natural therapies but you said unfortunately they didn't work. Were the therapies you tried for the purpose of reducing the estrogen in your body or were you taking them for a different reason?

I was dx with invasive breast cancer (multi-focal 1.5cm,8mm,5mm + 1 infected lymph node)in Dec 2008. I have just completed 6 cycles of chemo and am due to start on Arimidex. I am unable to take Tamoxifen because of a genetic blood clotting disorder.

I am very nervous about the side effects of Arimidex and am considering taking a natural DIM supplement to decrease the estrogen in my body. Does anybody out there know about this or has anyone tried it?

Would really appreciate some help in my dilemma!

friend is doing well
Hi blaircoff. I have a friend who is on Arimidex and says she is not experiencing any side effects. She started off on tamox. but had to change over to arimidex because she tested post menapausal. I wanted to know because I am getting ready to try Femara, another postmen. med.
Wish you well on your decision. I have been struggling with this decision as well.