Postmenapause IDC Women: What AI are you taking?

peacestrength

Postmenapause IDC Women:  I'm curious what AI you are taking?  Is there a preferred AI for IDC?   

Your responses are appreciated!

SpecialK

I am currently taking Femara.  I started on Femara but developed a trigger finger  after six months, so switched to Arimidex.  I took that for a year, but had some other joint related issues, so switched back to Femara, as that is what my onc prefers.  I believe that this is his choice, not specifically because I had IDC, but because it shows a statistical edge in recurrence prevention.  Since 80% of BC is IDC, logic would indicate that statistical edge would apply.

corky60

My MO prescribed Aromasin.  She said it was the most gentle of all the AIs.  When I couldn't tolerate the knee pain she said there was no sense in trying another AI because they would be worse for me.  I am now trying Tamoxifen.

SpecialK

It is important to note that because some women have trouble with AI related joint pain, or other side effects,  they sample one or more of the drugs to get the best fit. 

RMlulu

After telling my MO in no uncertain terms that I refuse to take HT...I did listen, I did accept RX, and I did take a 1 month vacation after active treatment to recoup&regroup&recharge.

I've just completed 10 months on Aromasin!  For me the tiny white pill has been uneventful...I do exercise, walk, dance, play...no weight gain...no aches or pain:).  I see my MO every 6 months (my choice) and will have annual bone scans...I'm grateful that AI has been a nonevent...my fear was greater than reality.

I think the biggest thing is discussing AI with your MO, having a plan, journal how you are feeling...any aches pains hot flashes night sweats so you have a basis ....that way you know if you are having SEs from AI or just aging body...

Best Wishes as you move forward in your treatment!

(((Hugs)))

Cindy

peacestrength

Thanks everyone for your responses.

SpecialK - I too have understood that Femara has a statistical edge.  Being node and ER positive, I selected Femara because of this but glad/want to hear from others.

okiecountrygal

I started out on Arimidex and took it for three months.  I had lots of joint pain and hot flashes.  I was switched to Aromasin in January and it has been a much better fit for me.  I still have joint pain but not as bad and I really don't have a problem with the hot flashes anymore.  Just an occasional flash once in a while but not every day several times a day like I did on Arimidex.  I was really hesitant to switch but am now glad I did.  Hope it's doing its job.  Guess that is always the worry.

Momof4gramof3

I've been on Arimidex now for almost a month and the worst so far is the vaginal dryness and increased hot flashes. I'm due to go see my MO for my first follow up next week. We'll see how that goes. I'm not sure she'll want to change anything after only a month trial, but we'll see.

mammalou

still on Tamioxifen here.

wintersocks

Letrozole, My onc prefers it. Didn't realise it had a statistical edge. On it 2 years in Sept. Hand/wrist/knuckles sore.  Hair is thinner. 

NatsFan

Finished my 5 years of Femara last year.  MO preferred Femara for me, but did say if I couldn't tolerate the s/e we could try others.  It got rough at times, but I got through it.  I did, with my onc's permission, take 4 different one-month "vacations" from Femara when the s/e got too bad.  I got a lot of relief during those vacations, and probably would not have made my 5 years without them.  Now I'm noticing a lot of relief from joint pain - I can actually get up from a seated position and walk away smoothly - no more stiff walking for a bit while the joints loosen.  I can actually walk away without looking like a 95 year old.    I'm scheduled for my next DEXA later this year - I developed osteopenia on Femara despite almost daily exercise including weight bearing exercises, so I'll be interested to see what my bone density is like now that I'm off of Femara. 

Anonymous

I could start a new topic similar to this one but has anyone asked their doc what "post-menopause" means, as in does it mean you've not had a period for over a year, or does it mean you are actually done with going through menopause, entirely?  I've never gotten an answer that made too much sense.  For what it's worth, am on Tamoxifen but was put on it after chemo-induced menopause. 

sheila888

shelly  Interesting question !

I did ask my DR that because I was only 9 months post menopausal when i was diagnosed

Because it wasn't a full year I was treated as pre m.....

Being HER+ I needed Herceptin anyway so I got a full chemo radiation treatment

I took Femara for 5 years at that time I was almost 18 months post Men..

i hope this helps you

Hugs

Sheila

ziggypop

I have read (can't remember where) that AIs should not be used until 2 years past the last period; until this point Tamoxifen is used. y doc has me on tamoxifen for 3 years (my last period was over 2 years ago so I'm not entirely sure why, but I think that it has to do with bone density - tamo increases bone density in post menopausal women so I think he's considering that to be a good thing). The plan is to do Tamoxifen for 3 years then a year of an AI then back to tamoxifen for a year. Don't know for certain what the rational for this is, but I think it's a trade of thing with bone density vs edge of recurrence. 

MakeLemonade

Was also wondering about pre, peri or post menopausal.  I am 56 and had a period in January.  The one before that was November, but before that was every month with a VENGEANCE  :-(    I thought I was getting my period in February which is why I think I did my self breast exam which is when I found my lump.  Didn't get my period ... but now feel vaguely crampy again.  My fear is that it is going to come on Tuesday night ... and they are going back in to get the one remaining spot on Wednesday.  Won't that be fun dealing with both things! 

Blood tests taken as a result of my GYN appointment in December FINALLY showed that I was officially in perimenopause with estrogen decreasing and FSH increasing.  

Impatiently waiting for MO appointment on April 17 where I guess I will get answers for this next phase of the journey :-)

Delufox

I am a newbie to this. In the past three weeks, I went from an annual mammogram to IDC, 13 oncotype hormonal positive. What is AI?

auntienance

Letrozole, 2 years 3 months. 2 years 9 months to go!

ziggypop

Delufox - Sorry that you have to be here. An AI is an Aromatase inhibitor. Basically if you have an ER+/PR+ cancer, it means that your cancer cells have receptors on them & you can think of these receptors as locks that require a certain shaped 'key'. Estrogen & Progesterone are the key shape that unlocks these receptors & when they do the cells are 'fed' and can multiply. 

The idea of hormone treatment for estrogen positive cancer is to cut off the supply of estrogen and progesterone so that the cells aren't 'fed' and basically stave and die off.  

Blessings2011

Took Arimidex (Anastrozole) for a year, then crippling, life-threatening SEs got me a two-month drug vacation from my MO. (She was really sorry I waited so long to report the SEs to her.)

After two months, ALL the SEs went away, and she started me on Femara (Letrozole). So far, so good... after six months, the worst SE I have these days is a trigger finger in the morning that goes away within the hour.

Amazing, how similar drugs can have such different SEs, and how different women can react to the same drug!

Delufox

thanks zingypop, I feel like I am in a twilight zone. This was not on my radar! Haven't had my first med oncologist or rad oncologist appt yet but want to be knowledgable on what will be discussed. I am assuming no chemo with a low octotype score but nothing has gone as predicted. Everyone keeps saying, oh, the odds are with you. I should play the lottery! What should I expect from these appts? I have ICD, 1.4 cm tumor, er, pr positive, her2 - , 13 oncotype. 55 yr old and so scared

ruthbru

Took Arimidex for 5 years with no problems.

What I think oncologists do is; prescribe whichever Al he/she is more familiar with. All are equally effective, so if you have trouble with one, you are not putting yourself at more risk by switching to another.

dwill

Anastozole (Arimidex)  since May 2, 2013--it suppose to be great for defending against the big C, but I have many SEs.

Moderators

The main Breastcancer.org site, in its section on Aromatase Inhibitors, includes helpful information about AIs in general, and links to more about each option. 

It ends with this statement that's relevent to some of the discussion here:

"If you're experiencing side effects from taking one aromatase inhibitor
medicine, tell your doctor. You may be able to take a different
medicine. Arimidex and Femara have similar chemical structures, while
Aromasin has a different structure."

The site also provides information about the tests (and results) that can answer the question Is It Menopause?

• The Mods

ziggypop

Delufox - It's a whirlwind of info when you are first diagnosed - I didn't know what any of it meant until my main treatments were over. Here's what I WAS told & it really helped me and helped me understand what the treatments are for.My oncologist told me "Breast Cancer that confined to the breast won't kill you." This is because your breasts don't do anything necessary for your survival. So the first line of treatment is generally to remove any cancer they can locate in the breast. When they do that surgery, they also do a biopsy of the nodes because the nodes are like a pathway the cancer follows to travel outside your breasts. If the cancer is in the nodes then you're at greater risk that it has maybe traveled somewhere else in your body. They will usually do a pet scan if there is nodal involvement, but even if the PET is clear, there is a possibility that a few cancer cells made it out of the breast & just aren't enough to show up - if someone is at a higher risk for this, then Chemo becomes an option. Chemo is systemic - meaning it treats the whole body - and it targets fast dividing cells (cancer cells - and also for instance hair cells). Radiation targets any little cells that might have been left behind in specific area where the cancer was found. The hormonal treatment is usually a pill taken every day for five or ten years. Which treatments you have will depend on a number of variable because there are all different kinds of breast cancer & it also depends on things like how big your tumor is, etc. 

When you go to your initial appointments, it's a good idea to take someone with you & have him or her take notes, because it's really hard to concentrate & keep things straight. You can also ask the doc if you can record the appointment.Also, if you feel the need and your doc has not already given them to you, ask him or her for anti-anxiety meds. This is tough and certainly a time when anxiety can run high. Ask the women here whatever you want to or come and vent or joke around. It helps to have people who get what you're going through & youll find a lot of support and a wealth of info here. ((hugs))

ruthbru

And write down your questions ahead of time, mark them off with a different color pen as they are answered (so you don't forget any). Like Ziggy said, bring someone with you and either take notes yourself or have them take them. Right when you leave, go through the notes & start writing down things to research and/or questions for next time. Get the number or e-mail of someone at the center, whom you can get ahold of with questions or concerns between appointments. Remember that there are no dumb questions!

I didn't ask for anxiety meds but I did ask for and get a prescription for sleeping pills, which helped me SO much. I wasn't sleeping at all, and you have to sleep to be able to cope.

peacestrength

Wow - this is great!  I liked reading all the responses.  It helps to understand what others are prescribed.  

The pre and post menopause that Shelly asked about is a difficult question to answer in a general way - for me, since I had my ovaries removed it's clear what state I'm in.  But before having an opph it was difficult to know if I was really post men even though my hormone levels indicated it because of chemo induced - that's why I was on Tamoxifen for a short time before my opph.

My MO orginally recommended Arimidex but after extensive research on my part, I chose Femara - this was a personal decision and if I need to switch in the future, I have that option.

Anonymous

Ruthbru - you are in N.Dakota? I am in S.Dakota so we're neighbors maybe?  I'm not sure I would say all AI's are equally effective.  I have read stats where one might have an edge over another, depending on pathology of one's bc.  For instance, the new "groundbreaking" drug from Pfizer, Paloma, in one article I read it is better for post-menopausal women, and yet another article says women that are "pre-menopausal" would benefit most.  Go figure. 

Shelly

flannelette

An acquaintance & I both got br ca. I don't know much about hers (15 yrs ago) except it WAS er+, she had lumpectomy, rads, no chemo, tried but could not tolerate tamoxifen due to depression, 15 yrs later was dx bone mets and is on Femara.

Me, stage 2b at the same cancer centre, where the oncs would pretty much all follow the same protocol, did 5 yrs arimidex with not even a word about extending it (just done a couple months ago)

It seems to me she has a much tougher row to hoe and so perhaps Femara has an advantage?

Just a thought -

SueEllenWisconsin

Hi D.  Our story sounds about the same.  See if the hospital has a "nurse navigator" to help you make appointments and navigate during this confusing, scary time.  I chose to have my surgery out of state because one of my daughters is a family practice Doctor and was there to go to all the appointments with me as well as arranging the appointments.  I was diagnosed end of January, had my surgery February 10 and am now eight weeks post surgery.  I am an Femara for about a month and side effects are manageable thus far.  Walking and stretching exercises help

ruthbru

Hi Shelly, yah, you betcha, I am in North Dakota. I just sent you a PM .

ruthbru

Flannette, I had a similar experience with a friend who had the exact same diagnosis and treatment as me. The only thing different was that she was pre-menopausal, so she was put on Tamoxifen for 5 years and I was on Arimidex. She, sadly ended up with mets, but by that time was post-menopausal and was switched to Arimidex.....so I don't think Femara is considered superior......maybe pathology makes a difference, but I'm not sure if doctors really know if or how yet, as the Als are relatively new drugs.