Had it with arimidex

Blundin2005

Lowrider, JO-5, ruthbru.....Speaking only for my experience....I was so grateful for women like yourself who helped me to get through that damned treatment.  Month after month I'd come here and learn so much about the disease, the therapies and myself.  I believe that the support and encouragement like this that you gave here is invaluable to any woman who needs to take this medicine.  I for one was not offended by similar support when it was sent my way.

I was frustrated though that the puzzle pieces couldn't be fitted together for me or the others.  I thought they (the docs) were keeping silent and asking us to soldier on because they had something to hide.  In fact, they didn't have anything to hide.  They simply had no better answers and their silence began to speak volumes....even my friends who are doctors and researchers....and none of them tell us what to do....it's our choice to use the information provided and make a decision.  That's all it's ever been.  We simply are adverse to be between the rock and hard places and that makes us human.

I hope too not to offend when I speak up.  But life isn't perfect and I have not doubt that many people here turn a cold shoulder to my ideas....this too is human.  But I believe, (and what do I know) that we all need to continue to speak our minds until we're heard....and we are heard....the makers of Arimidex changed their information inserts based on our collective screams of their denials.  So at least women now are better informed.  And our screams came from so many of the women here who went directly to them or to the FDA.  

These drugs were a good idea and helped extend our prognosis.  But I'm glad they continue to work on other ways to get us there. 

Now for some good news....I hear from my "doctor/researcher friends" that so many good things are happening for us breast cancer people.  One friend told me that he worked 35 years for the results that he's achieving.  I guess we need to be patient.  He and his friends know precisely how hard that is for us all.  

Hugs to you all. 

"Never run faster than your guardian angel can fly"

Marilyn 

Shirlrae

Joycey57, It has been one week since I stopped Arimidex due to severe back and leg pain, along with blurred vision,insomnia and many other symptoms. I am feeling so much better. The constant fatigue is still there,but a little less. I am also on Prozac,but will have to stop it before I go on Tamoxifen. Hopefully my Ono will prescribe another anti depressant, they do help with hot flashes and many other things. For now I will enjoy a small vacation from the meds. My first intro to my Oncologist after double mastectomy,he gave me a prescription for both Arimidex and Tamoxifen, I discussed it with my pharmacist and he said if it was him it would be Tamoxifen. I chose Arimidex because I thought it to be more effective, it isn't worth it to feel so terrible all the time, so I am hoping Tamoxifen won't be so disabling, Good Luck.

mollyann

There is no established overall survival benefit yet for Arimidex. That means when they count up the women who died from all causes on adjuvant Arimidex, not just breast cancer, it seems to have no real survival benefit over those who don't take it. There are so many hormone suppressing deaths like cardiac, bone fractures, stroke, fall, suicide, neurologically-related fatal car accidents, etc., that taking Arimidex may prove to be better for recurrence but not for overall survival.

Ask your doctor about the ongoing studies being inconclusive for overall survival.

MonicaSmith

I have re read all these posts and want to comment about SEs.  Aches and pains are the result of Arimidex WORKING.  It's function is to prevent estrogen entering cells.  This means it effects the good and the bad cells.  Estrogen is required by muscle cells.  My gyne explained it to me.  I feel like Arimidex races round my body to find new sites and off we go again.  I was on HRT for years, my skin was great, I kept weight off and exercised regularly.  I went off HRT when I was first diagnosed in 1997 with BC and rejected Tamoxifen.  9 Years later BC returns same breast new location.  Would it have returned had I taken the drug?  I ask myself that much of the time.  So I put up with the aches and pains and hope that it 10 years I am free.  If there is anyone else who plans to stick with it can you contact me I would like to find a buddy or two to share this with and share the the remedies and rituals to help sleep and live a full life.

pj12

Monica,

There is a thread in this same category called Arimidex. We are kicking and screaming and moaning and groaning but taking the drug and glad to have it as part of our arsenal against breast cancer.  We are a supportive group and I am sure you will find support for sticking with the drug there.

pam 

mollyann

So given the logic that the aches, pains, strokes, fractures, blurred vision, cardiac problems means Arimidex is working, does it mean if you don't feel bad, it isn't working?

If you don't feel 90 years-old should you stop taking Arimidex?

And where did the claim come from that pains mean more effectiveness? I would like to read that in a medical source.

Thanks

pj12

there was a British study that suggested women with more SEs were getting more benefit from the drug BUT that was ultimately proven not true.

I had not heard of the stroke-heart complications of Arimidex. 

pam 

ruthbru

Here are some statistics taken from a British Study comparing Al's to tamoxifen:

"Anastrozole can significantly reduce the chances of the disease returning or spreading to other parts of the body and ultimately, save the lives of many women with early breast cancer. In the group of patients who started taking anastrozole, rather than remaining on tamoxifen:

- The risk of dying was reduced by 29% 

- The risk of the disease returning was reduced by 45%

- The risk of the disease spreading from the breast to other parts of the body was reduced by 39%"

My notes are (happily) three years old; and may be somewhat out of date, but these numbers have stuck in my mind; my doctor told me that Al's would give me a 40% risk reduction in reoccurance; double the 20% risk reduction that my chemo gave me.

mollyann

Ruthbru, that study only seems to compare the differences between Tamox and Arimidex. The study doesn't compare Armidex and nothing.

So when you compare the risk of dying being reduced by 45% those are relative risk statistics. Relative risk means if 6 people out of a hundred taking Arimidex survived and 4 people out of 100 taking Tamoxifen survived breast cancer -- that's a 50% improvement over Tamoxifen. Because 6 is 50% greater than 4.

It doesn't mean the Arimidex patient survives 50% more than a person taking nothing.

Your doctor gave you misleading relative risk statistics. You should go back and ask him for the absolute risk statistics. Doc, what is the percentage of my being alive from all causes (not just breast cancer) taking Arimidex vs not taking Arimidex?

ruthbru

Yes, those were relative risk reductions; my absolute risk reduction by doing chemo AND taking Al's went from a 46% chance of it NOT reoccurring to a 76% of it NOT reoccuring. I compare it to playing Russian Roulette with a 4 chamber gun; before there were 2 bullets, I've gotten it down to one......I can chip away at that last bullet with exercise, eating right etc. etc. I am well aware that I can't get rid of it completely.....nobody can, we all just have to do our best and then be able to live with the consequences of our decisions.

Blundin2005

I found this article on these boards last May and tucked it away after I shared it with my doctors.  Forgive my memory that I can't remember who posted it (Link below):

Journal of Clinical Oncology, Vol 27, No 6 (February 20), 2009: pp. 840-842
© 2009 American Society of Clinical Oncology.  

 COMMENTS AND CONTROVERSIES

Up-Front Use of Aromatase Inhibitors As Adjuvant Therapy for Breast Cancer: The Emperor Has No Clothes

Bostjan Seruga, Ian F. Tannock
Division of Medical Oncology and Hematology, Princess Margaret Hospital, Toronto, Ontario, Canada

http://jco.ascopubs.org/cgi/content/full/27/6/840

I did not find this argument made for later stage development of breast cancer...only for "Up-Front Use..." and I think that is an important distinction.  

And since the doctors in the article synthesis this complex information much better than I ever could, I'll leave it at that.  

I thought it was worth sharing here again as it contributes to this discussion.

Edited to add this follow up Correspondence to the article from doctors

http://jco.ascopubs.org/cgi/content/full/27/35/e255 

CORRESPONDENCE

Aromatase Inhibitors As Adjuvant Therapy for Breast Cancer: Overall Survival Versus Disease-Free Survival As a Primary End Point in Clinical Practice

Alfonso Sánchez-Muñoz, Nuria Ribelles, Antonia Márquez, Elisabeth Pérez-Ruiz, Emilio Alba
Medical Oncology Department, Hospital Clínico Universitario Virgen de la Victoria, Málaga, Spain

To the Editor:

We have read with great interest the articles by Seruga and Tannock1 and Montemurro et al2 discussing the use of aromatase inhibitors (AIs) as an adjuvant treatment for early stage, hormone receptor-positive breast cancer.

....and this one

http://jco.ascopubs.org/cgi/content/full/27/15/2566 

 CORRESPONDENCE

Aromatase Inhibitors As Adjuvant Therapy for Breast Cancer

Filippo Montemurro, Massimo Aglietta, Lucia Del Mastro
University Division of Medical Oncology and Hematology, Institute for Cancer Research and Treatment, Torino, Italy
Department of Medical Oncology, National Cancer Research Institute, Genoa, Italy

To the Editor:

We have read with interest the article by Seruga and Tannock,1 who critically analyzed the role of aromatase inhibitors as up-front drugs in the adjuvant treatment of postmenopausal hormone receptor-positive breast cancer. Although we basically agree with the line of reasoning of the two respected authors, we feel that some of their conclusions need to be taken with caution.

I didn't paste the whole article but you can find them in the link above.... 

These are doctors having this discussion.....imagine how hard it is for us to try and sort this out! 

Best wishes to all as always,

Marilyn

"Never run faster than your guardian angel can fly"

mollyann

Thank you, Marilyn,

The article shows that there is no demonstrated (OS) overall survival benefit from Armimidex. OS means surviving death from all causes, not just breast cancer.

The dissenting set of doctors who wrote the letter are arguing that this (OS) survival should not be an "endpoint."    They believe disease free survival (DFS) is the issue-- recurrence/death from breast cancer is important. The letter writers have disregarded the deaths attributed to the drug so that heart, stroke, fall, suicide, fracture-related death are removed from decision-making.

Since this is a philosophic difference, if a patient is informed she can make the decision herself. Do I want to take a drug that has severe side effects and  has been not been proven to help me live longer? Or do I want to reduce my risk of RECURRENCE of breast cancer with no survival advantage?

ruthbru

Here is another thought to add to this very good discussion. All of us (not only those on Als) should be working closely with our primary care doctors to monitor our overall health; I have choleserol checks twice a year, regular blood pressure monitoring, blood levels checked twice a year, yearly bone density scan, pap, and pelvic ultra sound (the last 3 more often because of the Arimidex). That way if there is a red flag (caused by Al's or not), we will be on top of it. And, of course, we should all be making sure to exercise, keep at a normal weight, take the calcium & vitiamin D, eat more fruits & veggies/less fat, drink alcohol sparing (which is what everyone, BC or not, should be doing anyway).

MonicaSmith

MollyAnn

i do not know what percentage of women suffer the bone pain and all the unpleasantness.  I just finished talking to a neighbor who does not have BC and who is experiencing the same pains and has very low estrogen levels and does not take HRT.   So in some ways, yes, it is telling us our cells are not absorbing estrogen. It would be so great if it just targeted the cancer cells and not all the other functions that need estrogen for easy riding!  Now for all those with no pain & no problems who knows.  Maybe they have another cushion in their body.  When i was on HRT I felt and looked great.  My experience is based on me and you guys. I am not a scientist nor a statistician.  When reading stats watch out they do manipulate them.  Next time I visit my fabulous onc I will ask that question and ask her do many women who do not take HRT experience the same pain and do most women on AI's experience pain etc.

Bren-2007

Based on my age and type and stage of cancer, the benefit of Arimidex to me was about 4%.  I tried it for a week and had severe nausea and vertigo.  I stopped taking it.  If I was younger or Stage II through IV, I would have persevered with the medication.  I also tried Tamoxifen for six weeks .. with the same SE's, plus depression. 

I was 51 when dx'd and my tumor was IDC 7 mm.  I had a lumpectomy and radiation.  I've been cancer-free for 3 years now. 

I also had a total hysterectomy before I got cancer.  I had been on HRT for 4 years, but that was stopped immediately when I was dx'd.   

I have lots of menopausal, age-related aches and pains, as well as arthritis to my C-spine and shoulder blade.  I don't know if this would have been worse if I had stayed with an AI or not.

Best wishes .. I hope you can make a decision that works for you.  Please understand, I do not recommend that others choose the path I took.

Hugs,

Bren

arnie2two

I quit Arimidex on March 17th after only 5 months.... I struggled with the decision but decided on quality rather than longevity.  I felt like someone was drilling on my joints.  Like, Jo, I still have pain but no where near as bad as while on Arimidex.  It has to be an individual decision... I went to a thread called "Recurrence while on Al's" and the percentage was much higher than I had expected.  I decided then and there to take my chances.  I see my Onc. on the 28th for the first time in 3 months and I know he WILL NOT BE happy with my decision...but it's my life my choice.  

(((((((((((((hugs to all my sistahs)))))))))))  janet

sas-schatzi

Have not posted in quite awhile. Husbands lymphoma is focus now. Can not stress Genelex drug interation programs being a source to protect ourselves from drug interactions. We reduced his side effects majorly by the drug interation program.  But you have to educate yourself about the site and it does have some quirks. My frustration is -------if the doc's had used this program they would have known there was as drug interaction. Whats even more saddening is my  my insurance company that is all ecompassing -could have picked up on it , because  they subscribed to the program. SO, what I have been through didn't have to happen.

I'm a nurse. What makes me depressed. Is the things that could be avoided if everyone used the tools provided them. I should nor you should have to do our own research. We have a right to depend on our pharmacologist . What I have learned is they have access to the programs and they don't use them.    iI you think i'm wrong

1.ask them the c450 cytochrome for each drug that your on

2.ask them cyp interaction of all chemotherapeutic drugs and your usual drugs

ruthbru

It is very depressing but very true; each person has to do the research, be armed with knowledge and be his/her own advocate. I shudder to think how many people get 'lost in the shuffle' because they don't!!!

Blundin2005

A friend sent this article to me this morning with the comment "duh."  I thought to the women here who told us how to report symptoms of drugs to the FDA....it's mentioned too in this article.  I hope that the link works.

http://www.nytimes.com/2010/04/13/health/13seco.html?emc=eta1 

"Never run faster than your guardian angel can fly"

Edited for this comment:  I just had a thought that an ignore button has it's place, but not when patients want to speak about their care.  Listening is important even when we don't necessarily think that we'll agree...we always learn something from the exchange.

Marilyn 

ruthbru

Good article Marilyn, thanks.

sailorgalsails

How are you doing now? I read your post from 2010, quitting arimidex....I am considering the same route