Alternative drug to Arimidex

painterly

Did any of you gals who take Grape seed extract have joint pain?  I have been getting it lately similiar to that which I got from Arimidex. I may have been taking too much. Will knock it back a bit and see what happens.

painterly

Janeluvsdogs:

I was re reading past posts and I noticed you asked a question that I missed concerning my hormone testing. My estrogen result was at the low end around 3 which my ND said is in the desired level. (Now it will be a battle to keep it there).

Glenis

3jaysmom

yep,me too..off all of them.  i know they were conspiring to take any little i had in life from me. am terrified of not taking them, and reoccurring, but could have no quality of life w them!   3jaysmom

FireKracker

i went off the arimidex last friday and i am still losing my hair and spending the morning on the bowl..ugh.i dont want to go back on it...

Anonymous

I know this is a hot topic - but I refused all the estrogen blocker medicine. With exercise, diet changes, taking vitamins ( eliminating soy, processed foods full of hormones and antibiotics -meats etc.) and taking I3C I have reduced my estrogen level significally without all the long term side effects. So your doctor saying it's not proven is NOT correct.

I went to a naturapath and it sure was worth it. By seeing a naturapath, they have the knowledge to tell you what supplements you need and most important what brands that are most pure.

agape3

I am so grateful I found you all!  I so appreciate the dialog that has been most informative; i.e.,l3C, DIM, etc.  I've been researching alternatives, and so wanting to talk with others who are in the same boat as I am.  Just 3 days ago, I went off the Arimidex, after taking it for 3 months. I have not had any peace about taking this drug.  I've been through all the chemo and radiation, and lately, I have been having "vaginal yeast" issues.  I spoke, by phone to a Naturapath about my concerns with this drug (the aches in the hands and knees and on-going yeast issue). He suggested that I immediately go for a hormone profile which would establish a baseline for estrogen, and then every 6 months have it checked. He suggested that because I am immune depressed after all the bc treatment, the Arimidex could be suppressing the immune function even more to be able to clear up this problem.  

Psalm 46 

agape3

I concur with Rose47 regarding diet....very, very important, along with balanced pure nutritionals.  I vegetable juice a lot of greens and take BarleyMax, (a powdered juice of organically grown young barley greens alfalfa) I purchase from the hacres.com website, a wealth of natural health information and they also respond to questions, via email for free.  If anyone is interested in a phone consultation with my naturapath doctor, I would be happy to pass along his information; he is in Oaklahoma.

delorisann

Try OPC3 from market america or you buy it from ebay

unsure1

I was put on Arimidex today. When I got home I read all the side effects and I'm not sure if I want to risk taking it. I also have COPD and this drug scares me. Just not sure which way to go.

whatdoido

I have been on Arimidex for over one year and am sick of the polyps that I have been getting. 

The drug also causes blood clots so I am also forced to use blood thinners along side the Arimidex.  I have been to an oncologist/ gynocologist who suggested that I get a hysterectomy to stop estrogen so that I could stop the arimidex! Then I researched the possibility of getting heart disease (which runs in my family) from a hysterectomy and found that the risk was even greater then a recurrence of breast cancer. My oncologist will not be my doctor anymore if I switch to a natural estrogen reducer. He points out the fact that there is no clinical evidence to suggest a success rate greater then hormone blockers like arimidex. So, I guess the fact remains that the cancer industry cannot make enough money on natural remedies, so they just refuse to do research on them. Are the only people that can afford to do research, the drug companies? Where does all the cancer research funds go from cancer charities? Why is nobody testing the natural remedies? How do I find a naturapath doctor and will insurance even cover it? I feel lost and confused and scared to stick with arimidex and also scared to stop using it. 

heartnsoul76

Hi whatdoido:

I haven't started Arimidex yet, but my onco told me that's what she plans for me. I don't want to take it, partly because of the problems you are having. The medical community leaves us in a bind - "if you don't take this then we won't help you". I hate that, and I'm afraid that's what my onco will say.

I have always wondered what happens to all the money the cancer charities raise. It needs to go to the alternative medicine people so they can give us other choices with peer-reviewed studies and survival rates. We need some real numbers to make our decisions, and even Big Pharma hasn't given us those on Arimidex. I feel like our era of bc patients are all guinea pigs with the latest ideas they have. I keep telling myself our mothers' generation didn't have all these drugs and they did just fine - I think. Would be nice to see some studies about their results based on their choices. But it seems like everything is buried!

I can't find a naturopath doctor here in Atlanta - I think Atlanta is so connected to the status quo that everyone else is run out of town. Atlanta is the headquarters for the American Cancer Society, then there's the CDC and Emory (who are connected at the hip). I think all the cancer money in Atlanta goes to these Big Three and everyone else better toe the line or they don't get anything. I really think I'm going to have to go out of town to find a good naturopathic/medical doctor. It does seem like it's all a racket! 

mollyann

There is medical school in Philadelphia that is going to start clinical trials of iodine as an adjuvant therapy sometime in the future. I think it works as a substitute for Tamoxifen or AIs but is not toxic. Till the clinical trial is over in ten years we have to wing it...

http://www.open.salon.com/blog/jeffrey_dach_md/2010/06/14/iodine_as_breast_cancer_treatment

I don't think your doctor can legally turn you away if you refuse a therapy. Don't more than half of the people who start Arimidex stop it? They can't all be without oncologists.

heartnsoul76

Thanks for that great link! Yes, I'll be winging it after I say no to my onco about AIs, but I will print off this report and show it to her among others and see if she is willing to think outside the box - and help me with dosages, etc. You're right, she'll at least keep monitoring me - I don't know what she would say if I said I wanted to try something like DIM and frankly, I still don't know if depleting your body of estrogen is the right thing to do anyway. That would probably blow her mind right back into the box if I started talking about estrogen possibly helping protect against breast cancer.

heartnsoul76

Well, I just got back from a very limited discussion with my onc about taking DIM instead of Arimidex. She hasn't had the chance to look over the info I sent her about DIM, but when I asked about Arimidex not really preventing cancer - just pausing it - she seemed to be giving me the same old line about "we use it for 5 years and then we hope by then something else has come along that's better". For some reason, she said measuring estrogen levels were not important? She said there was no correlation between estrogen and the effectiveness of an AI. I said well, how do you measure the effectiveness of an AI, and she said the cancer doesn't come back! And she said people have no problems with joint pain on Arimidex, which I've heard other doctors always say the same thing, too.

BarbaraA

Sorry HnS, do you buy that there is no joint pain when taking Arimidex? Who does she think she's kidding? My onc even admitted to me that most of his patients taking it have joint pain. I'm not taking it. I'll keep on doing what I'm doing since it seems to be working for me.

heartnsoul76

Yeah, it was an awful discussion. I was disappointed to hear her so blatantly dismiss claims of joint pain. What, do they think we don't read about these things? She said I wouldn't start the Arimidex until after rads, so I guess I should wait to start the DIM until then, too, but yeah - I'm doing what you're doing...I really hated walking into that "protocol" wall.

Member_of_the_Club

A private doctor can certainly refuse to treat a patient, its a free country.  Heartnsoul it sounds like you need another onc, I think you should refuse to see her.  I will say that my only side effect on Arimidex has been hot flashes, and thats probably from the Zoladex instead.

heartnsoul76

It was depressing. She was definitely having a bad day, and apparently wasn't expecting this discussion. She had a med student with her, and was preceded by a PA in training so it was chaotic for her, I guess. I'm not supposed to go back for another month; maybe she'll be prepared next time. But it was definitely a depressing day for me. Kind of knocked the wind out of my sails - I think I'll go lay down and turn off the phone. 

islandgirlpr

Do you know the number for the "desired levels of estrogen for non-reoccurence?"  My estrogen level is 18...semms pretty low to me.  I'm 65 and due to my low cancer markers, blood tests, and onco test, no rads or chemo were prescribed.  But after reading about the side effects of arimidex, I'm very concerned about taking it.  I already have osteopenia, and I certainly don't want to make it worse.

somanywomen

Islandgirlpr or anyone.....How do you get your estrogen level tested?...Which Doc?..I was almost 90% and would like to see how arimidex has effected that number....thank you

BarbaraA

Somany - I had my test done through Genova Diagnostics Lab. I did a 24 hour urine test. The test was ordered through my nutritional biochemist, Dr Joe Veltmann.

islandgirlpr

It was in my four page blood work-up.   I just joined this discussion group today, but already have found valuable information.  I did some research on DIM and find this very promising.  I have the Arimidex in my medicine cabinet, but I really have a bad feeling about taking it.  I am going to talk to my onco and say I am not refusing this treatment, but want to delay it and try another avenue.  If my markers go up, it's Amiridex for me.  But if they stay the same or go down, why put myself through this?  Hopefully, he will listen and work with me.  I'll let you know.

tahoe1780

This may be helpful:  "Myomin is an all natural formula of Chinese herbs that has been shown to help metabolize unhealthy estrogens and promote proper hormonal balance. Studies show that it also inhibits aromatase, an enzyme that converts androgens (testosterone) into estrogen."  You may Google it for lots more info and sources.

BarbaraA

I take myomin daily.

pixelpup

Can someone who is PR+ use Progesterone Cream?  I'm confused... Thanks.

mollyann

Have you looked at The book, What your Doctor May Not Tell You About Breast Cancer? By Doctors Lee and Zava? That will answer all your questions. Lots of us hear have read it.

Also, there is a great book by Dr. Uzzi Reiss, Natural Hormone Balance.

Good luck.

Azz

Hi Island Girl:

Not sure of my exact estrogen level - on test I had done it was "less than 100 pmol/L" as opposed to normal postmenopausal level of "up to 220 pmol/L, so it must be low. After lumpectomy, axillary dissection, 15 radiation treatments, saw my oncologist today who wouldn't even discuss alternatives and insisted I start Arimidex in a few days regardless of the fact that I already have osteopenia, early macular degeneration and am very concerned about the SE of this toxic drug. I asked about taking bioidentical progesterone and she said NO. I should be in bed but can't stop worrying about this decision and what I'm going to do. I really hoped she would be open to at least trying bioidentical hormones, chrysin, CoQ10, Indol-3-carbinol and so many other natural remedies. I will lose her as an oncologist if I don't go with the Arimidex so this is a very upsetting decision, especially when courageous researchers are actually looking at other more natural treatments. I just turned a youthful 70, was feeling great until this diagnosis and like you, have low cancer markers, low oncotype score but had a few scattered cancer cells in the sentinel node so was subjected to dissection - all nodes were negative. Still don't know why I had to have radiation and now I'm faced with this decision about Arimidex.

Here is an interesting report on a recent presentation at the American Association for Cancer Research conference:

http://www.aacr.org/home/public--media/aacr-press-releases.aspx?d=2218

http://www.ncbi.nlm.nih.gov/pubmed/16216245

http://www.ncbi.nlm.nih.gov/pubmed/16413774

And an interesting write-up about Chrysin as aromatase inhibitor

http://www.naturalnews.com/026086_cancer_chrysin_estrogen.html

Nancy2010

You can get survival percentages at Lifemath.net; just put in your path data.  My onc used adjuvantonline for a survival graph but I think that's only for doctors access.  I was surprised to see, based on my particular data, the very small benefit from any type of hormone therapy.  I said no to chemo, tami, and any AI.

annettek

This is my personal experience with Arimidex. I bit the bullet and decided to try it. I was fearful that in myown way I was outsmarting myself by not taking what every medical professional told me I needed. One pill, that's all I took. I decided to try it at night, before I went to sleep. I was calm and actually thinking it would be a good thing. I  took a bath and went to bed. I fell asleep shortly after. Then I woke up. And went back to sleep. This repeated itself through the night interspersed with bouts of explosive diarreah. I woke up (for tenth time) and got ready for work feeling like I was on the worst kind of speed. I skipped my vitamins as I did not want any extra enhancements adding to the mix. One pill, the night before. I got to work and was hyper and of course tired, from the lack of sleep. But felt like, ok, if this is the worst, I will just take the pill very very early in the morning and then I will be able to sleep. Maybe the diarreah was stress or something. That was fine until about 1pm in the afternoon, I was standing outside talking to a friend and my left arm went numb. Like I had just woken up after sleeping on it. I shook it and commented how odd it felt. Then she looked at me and said how glassy my eyes were and I said not much sleep last night. I sat down and then my left leg was tingling. I said this is ridiculous, it must be from me being scared or something, one pill could not do this that quick. So I got up and laughed it off and went back upstairs to the office. By the time i got back my eyes were watering and I felt my head was pounding,my eyes were burning and red.I shook it off, again, saying this is CRAZY, I must be getting sick. My brain was completely spinning. My sister came over and asked me what was wrong as my eyes were so red and glassy and I was holding my arm funny. I said I did not know. I hadnever felt this bad in my life...inclduing when I go the BMX...at least when I woke up from that I anticipated something would hurt. But this was weird. Like nothing before. I called my husband and said I didn't know if I could drive home so to hang in case I needed to call him. I made it home crying the whole way. By the time I got home I was convinced it was not the pill but that I had undergone a small stroke. My neck was was sore and the left side was weirding out. My husband got home and sat withme and got me to take a hot bath. Once I sat back in the tub I got really really MAD! I said I must be nuts honey...because one pill could not do this to a person. He corrected me and said I knew better than that. He reminded me of the two times in his life when he had violent side effects following the first or second dose of two different drugs. He reminded me of the drugs back in high school that people (him and his friends,not goody two shoes me:) took and how one little pill did an awful lot. I started crying harder. I sadi what if it doesn't get better? My arm and leg are numb and I have shooting spur type feelings in my foot. My neck hurts and I my stomach is rumbling loud enough for him to hear it. I turned on the jets in the tub to massage my hold body ...and kept crying. I was too scared to take a tylonel or an ativan because I did not know if it would make &it& worse...he told me to get mad so I would not be scared...(he knows me well) so i did. I went on to say not only would I not ever take a FRIGGIN AI of any kind again but I damn well would quit smoking without adding more drugs to the mix. Somehow I had slowly started to buy intoit all...the big name hospitals and the big name docs telling me I NEEDED THIS STUFF. Now don't get me wrong...i am not a fool and if I had a more agressive cancer I damn well would do what was neccessary. BUT...this is why I had a BMX, this is why I started a regimen to suppress the estrogen naturally based on clinical trials...this is why I changed my diet, this is why I decided to stop smoking...to battle the BC so I could live a good life. So I got good and mad. Mad atmyself for not trusting my gut which has led me right since all of this began. I was mad that there untold women suffering horrific side effects so they can make some magical 5year mark while their life is compromised in so many other ways along the path to get there. NO. My sister called as she was worried about me and said she had never been so scared in her life when she saw me that afternoon. And let me tell you my sister is no alarmist and in fact would be the first one to tell me it was inmy head. She said you know, maybe that is why so manypeople can't believe you have gone through all of this...as you are healing so well and have generally been getting stronger and healthier...maybe if you had taken the AIs right after surgery like they wanted you to you might have been sicker like everyone seemed to expect you to be. And maybe you would not haveknown the difference thinking it was all part of the process of breast cancer. That you were supposed to feel like &hit. And I thought about that and I have to agree. Don'tget me wrong, I have had some rough days since the BMX but not anything like what happened to me yesterday. But if I hadnot had eight weeks of healing before trying this poison how would I know how to feel? I had never had breast cancer andsurgery before...all of the symptoms would have gotten swept up in the general Bc aftermath....Let me say this,  Ivcould never have dreamed it would hit me that hardvthat fast. I stayed home from work today and rested. As the day has gone on most feeling returned with just my upper arm and elbow and knee and heel tingling/feeling weird still. My stomach is racked. A little gross aside...I went to the restroom and after wiping...there was blood. Now I know where I wiped and have neverhad blood from my rear before in 54 years. I start screaming a bit ago for my husband and we looked it up...yep, one of the rare side effects...I missed that one in my reading..I am hoping that I had a hemi I did not know abotu suddenly decide to bleed (dont they do that? soemtimes) from all the diarreah....If it continues until tomorrow I will go to doc. But i am sick of docs rightnow. Pissed at docs right now. So here it is almost 24 hours following one dose  of arimidex. My story, my experience. No wonder so many write of their pains, I will never glossover those plaintive writings again when reading them. I truly believe none of them are exagerrating and they must feel like theya re going nuts to have that stuff start popping off in their bodies. My case might be unique and the effects extreme. I can only liken it to a poison that my body is trying to get rid of. The bitch is the drug can linger in your system for 50-60 hours. I will stick with that and not pay attention to someone who called astrazeneca and was told each dose can actually remain active within for 10-11 days. Nope. In this case I will use mind over matter to get over this mini catastrophe. And be grateful that now I do not have to play the what if game. I don't care what brand or formulation, I will not put it in my body again. It scared me and I hope I don't have lingering anything from it. God bless all of you who can handle it. I cannot.

althea

azz, I never did take arimidex, but I did take tamoxifen for 26 months.  I stopped and was nervous about telling my onc.  The anxiety was ill spent.  I feel certain he nearly yawned when I told him I stopped taking tamoxifen.  I don't think I've heard of people getting dropped by their doctors for opting out of a prescription.  If you have other choices in your vicinity, you might be better served by someone else. 

Annette, I'm glad you're too far from azz to have the same onc!  Your story is scary and eye opening.  I'm thinking you should really get your experience on record with whoever keeps records on side effects.   I feel certain someone in the hormone therapy section will know the ropes and help you get your side effects on record.