Aromasin, Arimidex, how do you know if it is really necessary?

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Aromasin, Arimidex, how do you know if it is really necessary?

by Fanny on Tue Aug 05, 2008 12:00 AM

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The current protocol recommends the above aromatase inhibitors.  I had severe bone pain with Arimidex, so have started Aromasin.  Joint pain, not as severe as with the first, sleeplessness, hot flashes (thought to have left behind me forever!!), ankles, feet, hands swollen.  Hobble a lot!

My question is this.   DCIS with microinvasions. Why exactly do they think 5 years of this stuff is the hallmark.? I have read No INFO which suggests that 3 years wouldwork or 7years? Had wire insertion to locate cancer. (Awful) Had excisional biopsy, had further surgery for clear margins, sentinal node clear.  Had radiation.  Some fatigue which began to lessen until Arimidex. Much pain.  Change to Aromasin which I understand is also a steroid. 

Is drug is worth 5 years of feeling miserable?  Next appt. intend to pick the Doc's brain, why?  How do you know?  Is my cancer such that 5 years of my life SHOULD be given over to this?

Frustrated, Fanny 

 

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by trehouse60 on Tue Aug 05, 2008 12:00 AM

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Hi Fanny,

I suspect that 5 years of treatment is recommended with the anti-estrogen drugs because when they were first developed, 5 years was the accepted hallmark for being "cured."  (Cancer-free is the more correct term.)

Also, past studies have shown that the older anti-estrogens lose effectiveness after 5 years, but were thought to keep the same effectiveness up to 5 years; maintaining the drug for the maximum period of effectiveness was considered good practice. I know that more recent studies, some still in progress, are questioning the 5 year period, especially with Tamoxifen, but I can't give you the exact data because I did not record the sites.

If you choose to go off the Aromasin because of the side effects, you would certainly not be the first to do so.  Many ladies cannot tolerate the side effects, and choose not to subject themselves to being so sick, myself included.  Neither would that mean you have to just  give up and let the cancer take over if it is still there.  There are many alternative therapies, ranging from very strict protocols to much simpler treatment with herbs, supplements and diet. (The latter was my choice, and I am having great success, to the point that the radiologist and oncologist can no longer say that what was definitely shown by surgical biopsy to be metastatic breast cancer in my lungs in Feb this year  was still cancer as of late June.)

Some women cope with the anti-estrogen drugs through use of  complementary therapy with herbs, supplements, immune system boosters, very weak phytoestrogens, etc. Results range from lessening of side effects for some to no side effects at all for others.  (every woman's body chemistry is different - so not every therapeutic regimen is going to work the same for every woman.  Diet, other medical conditions and/or medications, general over-all health, all these and more are determinants as to how well a therapy will work.)  Some women use Reichi, some accupuncture, some exercise, and many use a combination of a whole lot of things.

Many of the researchers involved in cancer treatment, both
traditional or other, believe that every one has cancer cells in their
body at least some of the time throughout their lifespan. People with healthy immune systems are
able to fight these cells off on a regular basis, and the cancer cells
just never have a chance to clump together and thrive.  The theory is
that when something goes wrong with that healthy immune system, e.g.
illness, injury, toxic build up in the body, etc, these cancer cells
get the chance to start banding together to form tumors or invade lymph
nodes or the blood stream, exhibit rapid growth, and the result is what
we know as cancer.

So, theoretically, even with successful
surgery, chemo, and/or radiation, it's still possible for cancer to
exist in that person, just waiting for the conditions to become right
once more, especially if the cancer had gotten into the lymph system
before or during treatment. That is another reason why the
anti-estrogens are recommended for that hallmark  period of 5 years.

The
implication here is that if you do choose to go off the Aromasin, as
certainly is your right to do, and as many other women have done, you
really seriously need to consider doing something in its stead to kill
off any cancer cells that remain, and to optimize your immune system so
that any other of the nasty devils that come along in the future can't
get a foothold on you and put you back in the same situation. 

I have some excellent references and links for you if you want to check out complementary and/or alternative therapy.

As
you look at stuff, keep in mind that your particular cancer likes
estrogen and needs it to thrive -  Arimidex, Aromasin, etc, induce a
chemical menopause, and that's why they work.  Some people will
recommend estrogen replacement with phytoestrogens (plant estrogens)  to counter the side effects of the
anti-estrogen drugs, but I recommend caution: phytoestrogens may well relieve the side
effects, but they can also undermine the action of the drug.

There are two
types of phytoestrogens:  those that have a very
strong estrogenic effect, and those that have a weak estrogenic
effect.  Much of the more recent research I have seen indicates that strong
phytoestrogens feed breast cancer, whereas weak phytoestrogens can act
the same as the anti-estrogen drugs, thereby starving cancer.  Take a close look at any herb or supplement you might consider (and some foods, e.g. soy.) If it's listed as a strong phytoestrogen, do every thing you can to verify its safety in the context of  breast cancer before incorporating it into your diet or regimen.

 "Dr Susan Love's Breast Book, 4th ed,"  is a great text - you will find  the most up-to-date and comprehensive information about breast cancer and breast health in this one book.  Susan Love herself was a victim of breast cancer, and she and her research foundation are committed to not only helping women survive well, but in totally eradicating breast cancer within her lifetime.

Another excellent book is Ty Bollinger's "Cancer: Step Out 0f the Box." see Ty's website:

www.cancertruth.net

I know from having exchanged email correspondence with him myself, that  Ty is a very caring man dedicated to helping people beat cancer by finding alternatives to traditional treatment.  While the first few chapters of his book can be considered controversial, they are well-worth reading to gain a different perspective on how cancer treatment is viewed across the entire cancer-treatment spectrum.  The latter chapters of his book deal specifically with the most popular and effective alternative treatments.  He details protocols, gives names of practitioners and clinics and contact information , and overall excellent advise on how to decide if any of these treatments might be right for you.

The best overall reference online that I have found is Webster Kehr's www.cancertutor.com.  There's a lot of reading - many, many links to follow within the site, but it's because this man is very thorough - he is dedicated to leaving no stone unturned, and the data is referenced as best it can be.

 "Prescription for Nutritional Healing" by Phyllis Balch is an excellent natural healing reference book. It is the "Bible" for many herb shops and natural health stores.   I recommend that instead of buying it, you go to a major bookstore with a pen and pad of paper, use the table of contents and the index and take notes, because the book costs about $40, and much of the information it contains for the average person will go unused.

 "Beating Cancer with Nutrition" is very highly recommended by more than a few posters on this board.  Although I have not used it personally, I have some familiarity with it and think it at least worth while to look at for someone trying to decide on the nutritional side of complementary/alternative treatments.

http://imaginis.com and  http://www.cancerlynx.com have excellent articles on non-traditional treatment and other issues pertinent to breast cancer survivors: e.g. lymphedema, persistent pain, etc.

The thought of stopping Aromasin can be pretty scary, but the spectre of dealing with the side effects for 5 years can be pretty scary, too, so I hope my comments will be helpful to you.

If you want more specific information, you are certainly welcome to send a private message with your questions, and I will do the best I can to help you learn.

Sincerely, Tre


RE: Aromasin, Arimidex, how do you know if it is really necessary?

by musician on Thu Aug 07, 2008 12:00 AM

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I also had the same procedure as you with the Mammosite radiation and started on Arimidex, after 3 months, changed to Aromasin.  Same symptoms as you. Been off Aromasin for 2 months and I havent told my onc yet. Sure he'll be upset.  I have one more I can  use, Famara.  I had the oncotype test and my chances are 89% of having it again.  My thought is "do I want to feel so bad for 5 years or take my chances"  I chose so far to take my chances (and Pray hard. I also have friends who also chose to  stop the drug, because of the side effects. Good Luck with your decision.

On 8/5/2008 Fanny wrote:

The current protocol recommends the above aromatase inhibitors.  I had severe bone pain with Arimidex, so have started Aromasin.  Joint pain, not as severe as with the first, sleeplessness, hot flashes (thought to have left behind me forever!!), ankles, feet, hands swollen.  Hobble a lot!

My question is this.   DCIS with microinvasions. Why exactly do they think 5 years of this stuff is the hallmark.? I have read No INFO which suggests that 3 years wouldwork or 7years? Had wire insertion to locate cancer. (Awful) Had excisional biopsy, had further surgery for clear margins, sentinal node clear.  Had radiation.  Some fatigue which began to lessen until Arimidex. Much pain.  Change to Aromasin which I understand is also a steroid. 

Is drug is worth 5 years of feeling miserable?  Next appt. intend to pick the Doc's brain, why?  How do you know?  Is my cancer such that 5 years of my life SHOULD be given over to this?

Frustrated, Fanny 

 


 

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by Lovemysquirrels on Sat Aug 09, 2008 12:00 AM

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Fanny,

        I hear you load and clear. I am very frustrated with being made to feel this is something I HAVE to do or else. I have much bone pain, muscle pain, fatigue..blahhhblah blah the list goes on. Now from the Femara I am having alot of bone loss and high cholesterol. I really want to stop taking anything. I feel I have been thru enough already. The Doctors make you feel like if you don't you will die sooner and if you do you get all these serious side effects that you not they have to live and deal with day in and day out. They make you afraid not to take it. I have been on this med for 1 yr and 2 months and it sucks....

Good luck!! 

On 8/5/2008 Fanny wrote:

The current protocol recommends the above aromatase inhibitors.  I had severe bone pain with Arimidex, so have started Aromasin.  Joint pain, not as severe as with the first, sleeplessness, hot flashes (thought to have left behind me forever!!), ankles, feet, hands swollen.  Hobble a lot!

My question is this.   DCIS with microinvasions. Why exactly do they think 5 years of this stuff is the hallmark.? I have read No INFO which suggests that 3 years wouldwork or 7years? Had wire insertion to locate cancer. (Awful) Had excisional biopsy, had further surgery for clear margins, sentinal node clear.  Had radiation.  Some fatigue which began to lessen until Arimidex. Much pain.  Change to Aromasin which I understand is also a steroid. 

Is drug is worth 5 years of feeling miserable?  Next appt. intend to pick the Doc's brain, why?  How do you know?  Is my cancer such that 5 years of my life SHOULD be given over to this?

Frustrated, Fanny 

 


 

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by Shemay on Sat Aug 09, 2008 12:00 AM

Quote | Reply
FANNY, MUSICIAN AND LOVEMYSQUIRRELS..... I am so touched by your messages. Tre gave you excellent suggestions and links to research. I just want to add this information which I hope will be helful for all of you. My main healthcare giver is a geneticist/medical/alternative doctor who highly recommends the natural supplement Avemar http://www.cancercompass.com/cancer-news/1,12705,00.htm .................... http://en.wikipedia.org/wiki/Fermented_wheat_germ_extract .............. http://www.rejuvenation-science.com/avemar.html ...... http://www.avemarresearch.com/TOC.html

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by kcmarrio on Mon Aug 11, 2008 12:00 AM

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I was diagnosed with BC in Jan of 2006,  I had a lumpectomy and was put on chemo.  I ended up with peripheral nueropathy in my legs, and have side effects from it.  I started taking Tamoxifen after my chemo was over, and I had little or no side effects.  Just a few months ago I started to bleed and had to go in for a D&C, I was told that it can be a side effect from the Tamoxifen and I was put on Aromasin.  It has only been two months and I am in so much pain, my joints and my bones ache, I have swelling in my feet, and terrible headaces.  I get minor pain killers from the doctor, (and they always try to make you feel like a drug addict).  I guess my main question is, does it get any better?  If there were a fire in my house I would burn to death before I could get to the door.  I am gaining weight from the meds and the menopause, and it seems to make it worse.  Can anybody help me with this, I feel like I am 100 years old.

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by RebeccaAH on Tue Aug 12, 2008 12:00 AM

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In November of 2007 I had a lumpectomy for tumor and 1 sentinol node was positive as well.  I made it through 3 rounds of chemo before becoming to sick with water retention and some heart issues. I moved into radiation and made it through my 30 treatments. While none of this was pleasant, I am finding this next stage the most difficult.

I was first put on Arimidex and was so nauseated I felt like I needed to be nibbling all of the time or I would throw up.  I have never experience this type of nausea before, usually when nauseated a person doesn't want to eat.  More than the naseau was the joint pain.  Ankles, toes, fingers, wrists and lower back/shoulders.  I made it through 30 days of this and the doctor said it was definately side effects of the drug. I stayed off from it for two weeks to make sure the nausea went away and confirm the side effect.  I started Aromasin yesterday so have only had two doses, and unfortunately my joints are very painful at this point.  I'm not sure if it is from the new meds or if it is just hanging on from the Arimidex.  I gained weight through my chemo, more through  the month of Arimidex and was just starting to feel in control after being 2 weeks drug free.  Now on to the Aromasin and hoping for some weight loss as I know extra fat isn't good for cancer cells as well.

Suggestions for weight loss? Joint Pain?  I am seeing someone that does "Healing Touch" every other week and that is truly a blessing.  I feel so much better during that time and for a couple days after.  Wish I could do more.

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by kcmarrio on Wed Aug 13, 2008 12:00 AM

Quote | Reply

I went to see my Oncologist last night, I told him about the pain in my joints and the headaches.  He said that he would try me on Femara, but all those pills have the similar side effects.  He told me that there was a shot available that would still have the side effects but a lot less.  I am trying the Femara first, you have to get the shot in your rear every month.  I can't take off a half a day every month to drive to the hospital, can't afford to miss the time, and I hate needles.  But, if this doesn't help I am taking the shot.  I asked why and how long I have to take this medication, and he told me another four more years and no less, and that it takes that long to make sure the cancer isn't coming back, that five years is the benchmark.  As far as the pain goes, some people don't have any side effects or just minor ones, it's just us lucky ones that have the pain. 

As far as the weight gain goes, my Dr. told me that I could take the Alli that is out on the market since it doesn't stay in your system and since I take my anti estrogen pill before bed.  But I would ask your Dr. first before you do anything.  The next best thing is walking, but hey if I take a pain pill first and my husband holds me up I might be able to walk  LOL. 

I wish you luck.  If you find anything good out let me know!!!!!!

RE: Aromasin, Arimidex, how do you know if it is really necessary?

by Shemay on Wed Aug 13, 2008 12:00 AM

Quote | Reply
From what I understand Avemar decreases the side effects of these drugs. Here is a link with some studies done on it's efficacey with breast cancer.http://www.pharmalivesearch.com/PhL/EUISearch.do?qgeneral=Arimidex+%28aromatase+inhibitor%29+%28cancer%29Avemar&search=Search&searchType=defLink&q=&tabid= If you go to the home page of Avemar.com you can contact them and ask for opinions on your particular side effects. Best of luck

On 8/13/2008 kcmarrio wrote:

I went to see my Oncologist last night, I told him about the pain in my joints and the headaches.  He said that he would try me on Femara, but all those pills have the similar side effects.  He told me that there was a shot available that would still have the side effects but a lot less.  I am trying the Femara first, you have to get the shot in your rear every month.  I can't take off a half a day every month to drive to the hospital, can't afford to miss the time, and I hate needles.  But, if this doesn't help I am taking the shot.  I asked why and how long I have to take this medication, and he told me another four more years and no less, and that it takes that long to make sure the cancer isn't coming back, that five years is the benchmark.  As far as the pain goes, some people don't have any side effects or just minor ones, it's just us lucky ones that have the pain. 

As far as the weight gain goes, my Dr. told me that I could take the Alli that is out on the market since it doesn't stay in your system and since I take my anti estrogen pill before bed.  But I would ask your Dr. first before you do anything.  The next best thing is walking, but hey if I take a pain pill first and my husband holds me up I might be able to walk  LOL. 

I wish you luck.  If you find anything good out let me know!!!!!!


RE: Aromasin, Arimidex, how do you know if it is really necessary?

by Shemay on Wed Aug 13, 2008 12:00 AM

Quote | Reply
Sorry somehow that url was distorted. Try this one......you will have to add Avemar into the search box......... http://www.pharmalivesearch.com/EUISearch.do?q=s%3Achem.CBO8 +(s%3Achem%5C.001TG)%20(s:nci%5C.C95FB)&qgeneral=Arimidex+(aromatase+inhibitor)%20(cancer)&searchType=defLink&useraction=searchRelatedConcept
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