Arimidex - Coping with the SE's

kira1234

Love it march on the FDA. I can see it now!

On another note did you see my post about the AL's being chemo. I am serious he did say that. In fact he was rather concerned my wanting to take it with the SE's I got from the 1 chemo treatment I did get. I actually had to talk him into giving me the stuff.

otter

[Post deleted -- changed my mind.]

otter

Enjoyful

Kira -

I looked up the definition of "chemotherapy" and it's defined on medicine.net as

1. In the original sense, a chemical that binds to and specifically kills microbes or tumor cells. The term chemotherapy was coined in this regard by Paul Ehrlich (1854-1915).
2. In oncology, drug therapy for cancer. Also called "chemo" for short

So since AIs are drugs, I suppose they fall into this category.  I always thought of chemo in the sense of the first definition because chemo actually kills cancer and normal cells.  AIs just deprive cells of estrogen. 

E

ruthbru

One more appointment tip: I always wear a necklace, earrings and rings; makes me feel less naked!

Having done chemo (shudder); I would no way equate Arimidex to it. I felt that chemo was, "Kill or be killed". To me, Arimidex is life insurance.

Enjoyful

Hahaha...ruthbru, I purposely leave the jewelry off because I'd feel seductive if I wore it!  I figure, it's their job to look at me nekkid.  If their retinas are scarred after doing so, sucks to be them.  :-)

E

kira1234

Ruth and E you two gave me a great laugh. Boy I need to do more of that you made my day.

LtotheK

I am no doctor, but I think Tamoxifen falls into what we understand as a chemo-agent.  It trolls for rogue cancer cells.  People often think it's an estrogen blocker, it's not.  It really acts the way Enjoyful describes chemo.  An AI is an inhibitor, it behaves more like an anti-depressant, for instance, in changing the regulations of the hormone pathways.  Since ER+ tumors use estrogen as food, it removes that option by blocking aromatase, still an estrogen present even if ovarian function is suppressed or replete.

As you all probably know, even post menopause, aromatase is produced in the body.  This is why the ageing process can be so extreme on an AI:  even menopausal women have access to some estrogen after menopause.  Tamoxifen, on the other hand, doesn't block estrogen produced in the ovaries (pre-meno women are getting most of their estrogen here).  Removal of ovaries or Lupron are options for pre-meno women who have higher risk or can't tolerate Tamox.  They would then be put on an AI, if I understand correctly.

Tamox was used in pre-and post-meno women before AIs were popular.  It is still an option, but the AIs have been shown to be much more effective in post-menopausal women.  Sadly, there is scant info on hormonal therapies in the pre-menopausal, set, posing a myriad of very scary questions (heart disease from depriving the body of estrogen too early, for instance).

They truly function very differently.

lwd

Ruth and E,

You are funny.  I'll have to think about the jewelry thing!  Although it probably wouldn't be the right thing for me.

I'm reminded of about 6 months back when I was doing so well that the onc suggested that he only see me every 2 months, while continuing my monthly Zometa treatment.  I had casually told him that I guess I'd better get used to this once/month meeting, with a big sigh.  Well, after he suggested the bi-monthly thing I said, laughing, and without thinking, "Well, but you're the only reason I come here once a month!"  Sometimes I'm nuts!

I really would have preferred the bi-monthly visits, but he went ahead and scheduled me every month.  I guess he took me seriously.  And after that I didn't dare say, "I wasn't serious!  I was just joking!"  And, now I'm thinking maybe he thinks I'm a little attracted to him, which is totally ridiculous.  I love him as an onc and he is totally professional, and no, I'm not attracted.

I think my nerves made me say it, but I am so embarrassed when I think about it.  Jeez!  And I could have eliminated that monthly meeting, at least for a while.  But, now I don't dare approach the subject.  And, he probably doesn't, either!

Oh, what we go through!

Lane    

NativeMainer

LWD--go ahead and bring it up with your onc.  Sometimes patients feel uncomfortable when appointments start getting spaced out, so the appointments stay the same a while longer.  Or he could have simply forgotten about spacing them out, and ordered a monthly appointment out of routine.  Chance are good he doesn't remember your comment!  If you don't want to deal with it face to face, try calling the office and leaving a message. 

kira1234

My Dr. idn't compare the AL's to chemo, he said they were chemo in pill form. This is what I found on line about the AL I am on.

http://www.chemocare.com/bio/femara.asp

susand

lakewoman, I would love to read your old posts if you dont mind.  Thanks!

Ruthbru, you always make me laugh.  I love your glass half full attitude.  I think of AI's as an insurance policy too.  I know I complain about the side effects but secretly I am so glad I am here and healthy enough to feel the Se's.  I dont know if that makes scence but I guess I am just thankful to be here.

I hope all of you ladies have a wonderful Thanksgiving.  Here is a big Thank you from your BC friend.  We have so much to be thankful for.

ruthbru

Yes it does Susand...if we can be working on quality of life issues instead of just simply staying alive issues....that is a very good thing.

and enjoyful, about the jewelry.....if he's seduced; oh well...... then he's seduced!

kathylev

I'm wondering if anyone has seen a rheumatologist for help in dealing with the SEs of Arimidex.  It seems to me that many of our symptoms mimic those of arthritis and maybe a rheumatologist can help. Also, who does acupuncture?   Is it a regulated practice?  Besides the constant ache, I'm now having difficulty opening jars and bottles.  I cannot take most pain medications and anti-inflammatories and need to find some other form of relief for these symptoms.   

And just so I don't end on a grumpy note - despite BC, the gift that keeps on giving, I want to wish you all a very happy, lovely Thanksgiving!    I recently found out that I am going to be a grandma (first time) in May and am extremely thankful and aware of the blessings in my life.  

 I'm wishing you all joy and peace this weekend and throughout the holiday season!

Kathy

Dilly

AIs and Chemo: my BS, who has been a BC specialist forever, calls AIs a "2nd generation Chemo".

kira1234

Lost-Creek, My Onc. also calls the Al's chemo. He works with Moffit, so I'm sure he knows what he is talking about.

Enjoyful

Congrats, Kathy!  Fantastic news!

Medigal

How can ALs be Chemo when Chemo is supposed to destroy cancer cells and ALs have nothing todo with that.  Arimidex especially just is supposed to suppress estrogen.  I also have not heard that Arimidex destroys our good cells like Chemo can do.  So where is the similarity??

Raj20

My weight increases from 62 to 75 within 3 and half years with arimidex. I am finding difficult to cover my tummy with hanging clothes as I feel awkward to use fitting dress. Sometimes I feel horrible by seeing myself. I reduced my food intake to great extent making myself weak and miserable some times before. But  now I don,t bothered, it seems normal. Life is very funny after BC.I don,t know how long I have to carry on with this.

kira1234

http://www.chemocare.com/bio/

Medical,  My Onc. also called it chemo. I didn't ask him much about it. He just was letting me know it was chemo, but I would not have the reaction to it I have had with the IV chemo. Boy the Femara is really messing me up. I go back and read what I wrote, and it makes no sense.

This is a web page about chemo drugs.

Dilly

Medigal, I didn't ask my BS that question and took her at her word. My guess is that each new generation of chemicals will become more and more specifically targeted, and less "scorched earth".

If you starve the cancer cells, don't they die?

kira1234

As I understand it the tumors can shrink while using the Al's. Am I right about that? There is so much I really don't undrstand about all this stuff.

molly52

Enjoyful, I am wondering about your comment re feeling like you have been beaten with a bag of hammers.  I thought somebody else might have responded.  Very colourful description.

In my early years, I might have felt that way.  I think mine was related to overwhelming fatigue.

How long have you been on Arimidex? Is this pain everywhere, or in joints or bones or someplace else?   

Medigal

Kira:  Thanks for that interesting webpage about "supposedly " Chemo drugs.  In my opinion the reason they are calling all these drugs Chemo drugs is because they help us in different ways to fight the cancer.  Not in the same way Adriamycin and the IV ones do but for  example if Arimidex helps keep us alive longer by blocking estrogen then they consider it a "cancer" drug and class it with the other Chemo drugs.  I think this is really stretching the explanation quite a bit and the ALs should just be called "cancer fighting drugs" or something similar.  Chemo has a special meaning to me and I would never consider Tamoxifen, Arimidex or any of the ALs as Chemo drugs.  Just my opinion.

 I never read or heard about Arimidex or any Als being able to shrink tumors.  My Onc did tell me that my Arimidex will resolve my problem with fibrocystic breasts so maybe that is how they got that connotation for them shrinking tumors.  However, fibrocystic disease is not the same as bc tumors, thank goodness!

 Rajkumari: That 62 to 75 weight gain?  Is that in our same weight measure like pounds?  If it is, 75 lbs for a young woman even if she is very short is very thin.  I don't understand why you are concerned about your weight.  Just curious.

Carol570

OK I am very new to everything - including this site - just recovering from a lumpectomy and lymph node dissection.  Trying to get informed in order to make some decisions around treatment going forward.  I can handle the radiation.   But, I am very concernd about Arimidex and would really appreciate knowing more about the quality of life I can expect if I decide to go with this.  I understand it kills the production of estrogen which is good as far as BC goes but, joint pain, bone loss, vag dryness - no sex life, depression etc.  makes me think I should only consider this should I get BC a second time.  I want to live for sure, don't want the BC back, not a wimp - I can handle night sweats, hot flashes etc.   but, sex life, mental health bone loss???  Is the benefit of not geting BC a second time worth it?  If the benefit was life - absolutely. In other words I am thinking maybe get another 5 or 10 years of quality life in. 

otter

Medigal, I suspect the numbers rajkumari cited for her weight are kilograms, not pounds.  Maybe she can clarify that, since those of us here in the U.S. tend to be units-challenged.  (There aren't very many countries left in the world that still use non-metric units of measure.)

I am going to opt out of the discussion of whether Arimidex is "chemo in pill form," except to point out that it's really a matter of semantics.  It's sort of like debating whether a Ford Explorer is a car or a truck, or whether the madrone is a tree or a shrub.  Does it really matter what arbitrary group we put something in, as long as we know what we're talking about? 

Yes, most people use the word "chemotherapy" when they're talking about anti-cancer drugs that kill rapidly-dividing cells.  That type of "chemo" includes the truly nasty things like Adriamycin, Taxol, Taxotere, Cytoxan, methotrexate, Gemzar, cisplatin, epirubicin, etc.  But, the word "chemotherapy" can also refer to any drug used to treat cancer -- not just the cytotoxic drugs.  In that broader sense, "chemo" can include Herceptin and Tykerb (not too surprising), but also tamoxifen and the AI's.

Maybe I'm missing something, but I guess I don't see why it matters whether Arimidex (or Femara) would be considered "chemo".  Seems like the important thing is for us to understand what Arimidex is, what it does, and why we are taking it.  (That would be true for any drug we're taking, of course.)  And, FWIW, the AI's are being used as neoadjuvant therapy to shrink tumors down to a manageable size.

I guess I didn't opt out after all.

otter

Curlylocks

Carol,

I understand your fears about Armidex.  Some ladies have severe side effects while others do quite well on it.  Dont let other people's posts and individual situations allow you to steer away from a very important weapon in reducing reoccurance for er/pr+ bc.  The ladies that are doing well will not post here!

I am 46, diagnosed at age 41 with a large 4 cm grade 3 tumour with 3 positive lymph nodes,  I was also er/pr+ and her-.

I was thrust into instant menopause at 42 through Zoladex injections and then had my ovaries removed 2 1/2 years ago.  It has been a tough ride for me, however, I have survived it and am doing quite well now. 

I have even started running for the first time in my life almost 5 months ago and feel wonderful!  Currently get a few hotflashes thru the day and some at night but generally sleep pretty well despite being in menopause... my body has adjusted.

Do I regret making the decision to take Armidex?...No I want to do everything possible to prevent a reoccurance.  I have been on Armidex for 4 1/2 years, have had no issues with bone loss and last dexa scan last year was still within normal range. 

Yes  quality of life is important, however, if you were to have a reoccurance due to not deciding to take an AI...could you live with the "what if's"? Make a decision about how an AI may impact your quality of life -- if and when that happens....

It is better to beat this beast down to the ground the FIRST TIME then waiting for it to come back again..... it may be more aggressive than the 2nd time around.....just something to think about.  

 I will get off my soapbox now but want you to be informed before you decide not to take the AI's as you think you will have severe quality of life issues....

All the best in your decision.

Michele

kira1234

Thanks otter, As always you put things into perspective.   I do pray it does what it is meant to do, keep the cancer away. My feeling for what it's worth is my Onc. who knows how badly my body reacted to the one chemo treatment I had wanted to reasure me that what I'm taking now taking although considered a chemo treatment will not give me the horrible SE's the accepted chemo drugs gave me.

JanetinVirginia

Michele - that's wonderful news that you have had no bone loss - and you;re almost done!!!

Does anyone know why Arimidex makes you gain weight?  The sheet that came from the pharmacy says one side effect is "weight change" - so I assume that means you may gain weight or lose weight.  I finally got my rx filled, but thought I'd wait until after Thanksgiving to start.  Very nervous to start it.

And speaking of Thanksgiving - I wish each of you a peaceful day filled with the joy of family or friends.

Claire_in_Seattle

Janet,  I think the weight gain is most likely to be the cumulative effect of less activity.  Seven months into Arimidex, I have not gained any weight.  I do know that if I didn't keep up my normal activity level, I would gain weight quite quickly.

I learned that one the hard way a number of years ago when I switched to a less physically-demanding job.  Guess what happened.  So I am not going there.

Happy Thanksgiving too!!! - Claire

mersmom

Funny (kind of) story to share. Was not feelng well on Monday,by 8:00 p.m. wnet to bed....woke up shivering and in pain. Woke my husband and told him I wanted to go to the hospital. I felt bad...we had a terrible storm and the roads were compact snow and ice.Ended up I needed to have my appendix removed. Tried to tell the nurse in the operating room not to put a blood pressure cuff on my right arm...he insisted that for the short time I waas going to be under it would not matter.

ENTER THE SURGEON on call....low and behold it was the surgeon that did my lumpectomy and partial mastectomy. He laid into him (the nurse) like no tomorrow,had the cuff removed and announced he would talk to him later and to stay out of his way during the rest of the surgery and that he would see to it they never worked together again. I was then put under and missed the rest of the conversation.

All went well...3 tiny slits...glued and taped. No stitches! I go back to see him in 10 days. Can hardly wait to get the goods on the rest of the conversation. 

Happy Thanksgiving Ladies.