Wanting to reject the option of Aromatase inhibitors

doxie

hap_k  To help assist in understanding your risk of local and/or distance recurrance, and within what time frame, it might be helpful for you to research Luminal B ER+ HER2- cancer. Since you indicate you are PR- and grade 3, I would guess your tumor might be Luminal B.  This type of cancer carries a 50% higher risk of recurrance than the Luminal A.  Luminal B ER+ HER2- is generally identified as having high proliferation such as Ki67 > 20% or a high mitotic rate.  There is not an absolute definition yet, but some include negative PR.  

Omaz

This is a little off topic but I wanted to share in case someone else falls into this situation - I was 51 at dx and premenopausal.  Chemo put me into chemopause and after a year+ on tamoxifen, 20+ months without a period and undetectable estrogen I was switched to letrozole.  I had hourly hot flashes since the beginning of chemopause and within about a month of letrozole my hot flashes got a lot better.  Hmm, very suspicious - we tested my estrogen and it was 200+!  Then I learned that letrozole can cause chemopaused ovaries to recover and so it was with me.  I didn't have periods, note, but started making enough estrogen to reduce my hot flashes.  I went back on tamoxifen and have had my estrogen checked twice now and it is back to undetectable (and my hot flashes are back to 'normal').  I just wanted to share because women in the peri-menopausal age range who have gone into chemopause can have recovery of ovarian estrogen production on AIs.  This would make the AI ineffective.

momand2kids

This is always an interesting discussion to me.  I was pre-meno at dx and could not take tamoxifen--so I had to go on lupron shots monthly and letrozole.  did this for 3 years--just went off lupron at my request so we could see if I was in menopaus--no period since June when I went off (and none since chemo in 2009) so I think it is a safe bet.

The early days of both of these drugs were  hard for me--could not tell which one caused which problem.  Having now been off the lupron for a few months, I can tell it caused my "fuzzy head" and some of the joint issues.

 I had been toying with going off letrozole--- I still have about 1.5 years on it--- but so far bones are fine-- the main issue for me is vaginal dryness and lack of libido.... and I am trying so hard to work with those two things, but I am glad it is only those two.... 

I think I will have my estrogen checked in December at my next appt- I did not know the ovaries could act up again.... sigh....

My onc is a true believe in hormonal therapy above all--- I have great respect for her-- and I think she is right-- but the QOL is important--- and if mine had been significantly worse, I think I would have gone off since I had chemo and radiation..... this is the great mystery, we just never really "know".   

Timbuktu

ruth, thanks for that post.  it gives me such hope. i can endure 6 months of anything if it will help prevent a recurrence.  i didn't know things could improve.  thanks again!

Timbuktu

Are people saying that the aches and pains that AI's create can become permanent?  What worries me is what is causing all of this pain.  What is happening to my body?  It's one thing to go through a temporary difficulty and another to be doing permanent damage to all the joints in your body.

hap_k

Doxie, Thank you for that information. I will do more research. I am ER+ 1/PR -/ HER2- with a high proliferation rate Ki67. Negative lymph nodes. 0/4.

Although I keep reading that the tests for high proliferation rate are not reliable, it's something I wish I didn't see on my path report.  

HLB

Wow Omaz, that is the first I've heard of that!! Kind of scary as I have been on letrozole for two months and feeling fine. I stopped my periods with the first chemo tx in Jan 2004. I never took any antihormonals since then so I hope that is long enough to be in menopause that the letrozole won't wake up the ovaries. So interesting.

Omaz

HLB - Here is a link to an article from 2006 about the recovery of ovarian function.  LINK

ibcmets

I've been reading this thread for awhile even though I'm stage IV from the start ER+.  At stage IV, the choice was obvious for me to take the AI's.  I have ibc with spinal bone mets from 6/09.  I've been on Zometa & Femara for 3 years and doing well.  This treatment has done wonders for my bones.  I do have arthritis that has been helped quite a bit by exercise but my bones are actually stronger now.  I almost went off of Femara the first 6 months as I had a lot of bone pain & sleepless nights, but managed to stick with it.  SE's mostly have subsided except for hot flashes.

Just wanted to tell you that I have a friend that had early bc ER+.  She did not take an AI, not even tamoxafin.  5years later, she got cancer in the other breast.  She thinks if they had put her on an AI, she would have not had a reoccurrence.  She's now stage IV. 

If you are highly ER+, consider taking AI's even with the SE's.  Do your research on the drugs.  I do believe you can go a lot longer without any reoccurrence if you take them.  I'm telling you this because you have an opportunity to prevent stage IV bc with AI's.  Some onc's are actually keeping their patients on them longer than 5 years. 

Terri 

Member_of_the_Club

I'm on year 7 -- 5 years of tamoxifen and 2 on arimidex.  I am in the best shape of my life, have run two marathons in the past few years, and I am thinner than when I started.  I have had NO aches and pains.  There is some thought that regular exercise prevents the aches and pains -- it is certainly true in my case.  My only side effect has been vaginal dryness and discomfort that is now gone because of vagifem (which is completely safe).

So in my case, I have had close to no side effects.  I would not assume that it will be a bad experience.  I haven't been on these boards in quite a while precisely because I have no reason to be.  Most people are like me -- that are handling these meds just fine, and so you won't hear from them.  

ruthbru

Awesome Member of the Club! I wondered where you were off to. I think you are right, I have 5 other local acquaintances who are either on an Al or tax. None of them are Internet users, none have had any complaints. It is only natural that one seeks out help/advice if one is having issues, otherwise people are mostly just off living their lives (unless they are computer nerds like me ).

Anonymous

I've stopped posting on the AI SE threads - mostly repeats now.  But still the best info on how to deal with any SE's.

I am with Member, in my 6th ( very, very grateful to have it as an option) year on Arimidex.  Any mostly gone, easily manageable, and feel good.

With a GRADE 3, only slightly E+, I hope the hap K gives a great deal of attention to Doxie's post. Also, have you had the Oncotype DX test, that is predictive, but information of results based on taking Tamoxifen, or some kind of hormonal treatment. Good luck with your decision.

HLB, sorry to hear of your progression, hope all treatments are effective.

hap_k

Sunflowers, thanks, Yes, have been told I will get the Oncotype test & I'm looking the Mammaprint test, too. 

Considering all options. Also just heard from a friend, now cancer free for 12 years, who did take Arimidex 5 years and within a year got osteoporosis despite being a serious athlete--runner/walker, with several published books on health and fitness. Big shock to her. I'm getting my new bone scan soon (last one showed osteopenia).

Hap 

Anonymous

Hap K - my bones have gotten STRONGER on Arimidex.  Genetics also play a MAJOR role in bone density.

Momine

Hap, I do think it really differs depending on overall risk. When I plug my stats into PREDICT, it tells me that of 100 women with my stage/grade/type BC, 64 will be alive in 5 years with surgery alone. The combo of chemo and AI will up that number to 86. When you look at 10-year survival, it is more dramatic with 28 women alive if they do only surgery and 68 alive with the combo of chemo and hormone blockers.

I am taking the femara and gladly, but I can see how it becomes a real debate if the difference in longterm survival is slight. However, I would like to add that I am also one of those for whom it really hasn't been too bad so far. The main SE I have is achy joints, but if I move it goes away, so it is entirely doable.

fmaury

Hi Hap,



I am in the exacr same situation. My oncologist is a nice and reputable doctor bur I have not seen him since I started zoladex injections and Arimidex. I am starting to experience wrist, hand and neck pain. I already have some arthritis in the neck and don't want to destroy my bones for the sake of a few percentage points in decreased mortality risk. My risk is low to begin with because my tumor was smaller than 1cm and the sentinel node biopsy came out clear. I see my oncologist now and will discuss the risk/benefit of this therapy. I don't mind continuing with induced menopause (might as well get it over with) but ruining my bones is a different story. Depending on what he says I may also seek another opinion at Johns Hopkins in Baltimore (I live in DC).

purple32

REzOK

You said: "Fast forward 3 years...a few days after turning 53 at exactly the 1 year point of being officially post meno comes my "turn". (See my diagnosis below with the addition of 100% for both ER and PR.) After chemo (as HER2 pos), I begrudingly started with Aromisin. Yes, I read every dreadful thread about all of these drugs but FOR ME, that 100% kept lighting up like a marquee in my head. After 3 months my QOL became unacceptable. Maybe I could have tolerated some of the se's but the combination of them all, particularly becoming drier than a prune was too much. Decided I would give Tamox. a try ..."

===================================================================

Ellen,

I SO respect your choice, and I hope and pray tamox is kind to you.

Take Care!

purple32

fmaury

Why not get a bone density scan?  (I'm just guessing your onc will tell you to continue the meds.... most ppls. bones do NOT get stronger on an Al!!!!!)

hap_k

Momine, If I got the kind of predicted benefit that you get, I would be much more interested in exploring AIs, but the numbers I get from Predict! and also CancerMath tell me the risk benefit ratio just is not in my favor. I hope everything works for you!

Fmaury, Yes, I will probably go for second opinion somewhere. I really sounds like you should. I'm with you on the osteoporosis issue.

Right now I am trying to find a MO who will order Symphony (Mammaprint is part of that). I am not impressed by  Oncotype DX. I have read a lot of journal articles about both. Mammaprint used to require a fresh sample from tumor but now can work from the same kind of sample Oncotype uses. Except that Symphony (Mammaprint) looks at 70 genes rather than Oncotype's 21 genes (actually only 16 genes, 5 genes are there just for reference). More is not always better but Mammaprint looks at all the genes involved in the metastatic cascade, leading to the growth and proliferation of cancer, Oncotype does NOT. Oncotype leaves out important information.

I've spent hours talking with a researcher friend about Symphony (Mammaprint). Oncotype is not approved by the FDA (has not even tried to be approved); but Mammaprint is! Mammaprint also has the lion's share of the market in Europe where Oncotype is simply not popular.  It is also covered by Medicare! I have been chasing all over to find a qualified MO in my area who will even consider using this FDA approved genetic test. Just today, I finally found one who is actually in the same practice as one doctor who flatly refused. 

My feeling is that a lot of MOs are working on volume--one size fits all. Well, I have only one life & one body. I want the mistakes made in taking care of it to be MINE! If a doctor makes a mistake I want it to be on the side of thinking of the best way to treat the kind of cancer that I have and taking account of health risk factors I already have, not just saying "take this" because that's what they have said to the last 300 women early stage BC.

Long before I got cancer this August, I have had doctors try to tell me that I needed medications or dangerous tests that I did not need. I even had a highly regarded, award winning gynecologist who committed surgical malpractice and lost his license. I didn't find out until years afterwards (we had moved away from the area) that I was one of his victims! So my confidence in doctors and their advice is not a given. They have to earn my confidence!

Best of good luck to everyone, Hap 

Hap 

hap_k

Kayb, I hear what you're saying, and I know that about Oncotype. But one could also say that they did not apply for FDA clearance because they did not have the data sets required to get approval (and they did not--they had gaps in their data). It's a lot like saying I could have been an Olympic athlete if I had raced, but I didn't practice, qualify, apply, or run. But if I had, I would have been a star! 

I think it means something that  Mammaprint did have complete data sets, and did everything to get cleared by the FDA which was not easy. (BTW, I don't work for anyone in the medical field.) My only interest is that women with BC (that includes me) have access to useful information. Mammaprint is still the most used genetic test in Europe. As a former resident of the UK that also means something to me. And Medicare approves it, so why is it so hard to get?

Anyway, I am getting it--finally. Where there is a will, there is a way! There good MOs who are open-minded. I believe we will be hearing more about Mammaprint in the future (in a good way).

Hap 

Aruba

I will start Arimidex I am sure as soon as I am done with rads.  I was surprised with Oncotype that thel pool of people for the results used is so small.  I had onco of 26, so was in the intermediate area and wanted every detail in making my decision on chemo since I had no nodes or LVI involvement etc.  I called the company and found that the 2 studies used involved under 600 people each to base their projections.  Have no clue about Mammoprint, but find it amazing with Onco that such a small pool size is used and they still so unsure of this intermediate area that a new clinical study underway for that group (think it called TaylorRx or something like that).  Results for that won't be known for some time, but they did lower the scores for chemo recommendations for that trial.

mybee333

Thank you for the link to Predict.  I had not heard of it before.  It indicates that 3.6 women with my dx out of 100 will be alive in 15 yrs. as a result of anti-hormonal therapy.  I have experienced awful side effects on the two AI's I have tried. I have been on them 11 mos. total. I have looked at lots of research studies.  Someone is right that the ones in Europe appear to be more reliable, which is scary, due to the influence of the pharmaceutical companies in the U.S.

I have had a full hysterectomy.  In these cases, research indicates no advantage to taking Tamox. There is some small advantage to taking an AI but no one seems to have researched what this might be because there is no money in proving that the AI is of too small of a benefit to use.  I too wonder what all this pain is doing to my body.  I have been off of Aromasin for one month and my feet ache constantly.  I limp when I walk. My arthritis has advanced and is now in four major joints. I am concerned too because there is a strong family history of both osteoporosis and heart disease on both sides of my family. I was taking Aleve, Motrin and Norco daily.

The combination of no ovaries and an AI is called an 'estrogen blockade'. I was suicidally depressed on my last AI.  I am trying to decide if there is any benefit to living the next 4 yrs of my life in pain, feeling depressed, fatigued and as if life is not worth living.  I couldn't exercise much due to the joint pain and bodily aches.  I tried. I went bike riding every other day with little benefit in the summer. I have developed osteopoenia within the past yr. and have lost 1 inch in height since my hysterectomy made me prematurely menopausal. The long term effects of these AI's have not been studied; the drugs are too new.  The sole objective, and in advanced cases it is an imperative objective, is to maintain or reduce tumors or prevent recurrence.  Studies  look at the cancer stats. not the long term effects because there is no money in this.

I also have fibromyalgia. I don't believe either MO I have worked with has taken into consideration the fibromyalgia or the hysterectomy in prescribing these AI's, that only come in one dosage, btw. I am very frustrated in this whole decision making process and feel I am on my own.  As my current Onc. said - the decision is up to you.

I have a prescription for Femara sitting unfilled on my dresser.

pteney

Hey Molly, wow - i'm glad i'm not the only one fighting this AI stuff!!  I said i'd start Aromasin today, thought i'd start this morning but i couldn't make myself do it, and said i'd start tonite, like i always took my pills.  Then I found out my husband is having surgery next week so I think that I don't want to be fighting new possible se's as we have to go out of town for the surgery.  What to do, what to do??? Hopefully i'll decide soon. Hugs, Patti

mybee333

I think it is good to try them, but don't believe every woman can tolerate them.  Women in the 50-59 yr old age category have the highest rate of difficulty and have the highest rate of discontinuation, primarily due to pain. The Ai's are very effective in maintaining and reducing tumor size in advanced cancer.  This is something to consider seriously.  My looking at research showed this very clearly.  Try them and see how you do.

My mind must have been working on this overnight.  Here is a link from BCO: http://www.breastcancer.org/risk/new_research/20120830b.jsp 

It indicates a greater risk of recurrence in ER + cancer related to sleep deprivation.  I was only able to sleep 6 or less hrs. all summer on Aromasin.  I had been a practitioner of daily exercise prior to dx and my 5 surgeries, but the use of the AI, in combination with surgical fatique made that extremely difficult. Exercise can cut risk by 50% (I've read elsewhere on these boards).

btw hap - Long living also runs in my family.  My father's grandmother lived to 99, his mother into her 90's, unfortunately with dementia. Interestingly enough, there is no h/o BC in either family but an uncle w/ prostate CA in both.  Oh - one Great Aunt with BC in her 80's. Maternal Grmo. went from 5'3" to about 4'8", died of heart disease at 83. These issues, heart, bone and cognitive functioning, are all a concern.

Let me note - I post these concerns for early stage BC.  For those with more advanced staging, there are different things to considerations, the weighting of these issues is different, I am certain.  We are all concerned with recurrence, but some have greater immediacy as far as their own individual situation.

pteney - my se's came on very slowly.  I wanted to let you know so maybe you could start, and then see how you do.

Blessings2011

I tried to use the Cancer Math stats in an argument with my MO. I said that taking the AIs would give me an 8 month longer life span than without, which wasn't worth it to me.

Her answer? "This has nothing to do with life span. Would you rather live the rest of your life WITH a recurrence or WITHOUT?"

She said that her job was to try to reduce my risk as much as possible.

I also used the fact that I was severely disabled by fibromyalgia and other orthopedic disablilities, and didn't need any additional pain.

But something happened in March - I went on a gluten-free diet, and about 80% of my fibro pain went away.

I still have some joint aches now and then, but nothing like it was, where I couldn't even get out of bed some days.

Have been on the Anastrozole for a month now. So far, so good.

Omaz

Blessings - I just started the gluten free diet too (though there is probably still some gluten in there) and I think, that's think, I am noticing improvement in my knees!  What is the mechanism behind it?

hap_k

Bone scan this morning. My new very integrative, open-minded medical oncologist (who has ordered my Mammaprint genetic test) needed my bone scan results before he would consider Rx for Aromatase Inhibitors. Results of scan: my running/walking has maintained and in some cases improved my numbers for my bones below the waist. Yippee! However that was achieved while I was still taking HRT. Not taking HRT anymore as of August, obviously, so my bones may go down dramatically, like my sister's did when she stopped HRT. Went to osteoporosis in a few months.

But I already have osteoporosis in my upper body bones because the bone scan of my wrists shows that they are down by 30%+ (that means the arms will be near the same).  Did you know that most bone scans do not include the wrists? I didn't know that. This same doctor had done my scan in 2006. The other place that had done my intervening scans never looked at anything but my lower body. Not all bone scans are equal. Like so many things in life.

Hap  .....wishing everyone better health and happy days! 

hap_k

Hi Kayb,

 I have read that about Tamoxifen. One of its few pluses  It's obviously been mentioned as a strong possibility if it's suitable for me, but my new MO says he is not asking me to take anything until we get my Mammaprint back and we look at what my genes are telling us, then factor that information in with my clinical factors. Then he will lay it all out if front of me, answer all my questions, and at the end of the day is it is MY choice. He will still be my doctor and support me as I work my way through this. I am really liking this guy. 

Everything looks good for me (stage 1, clear margins, 0Nodes), except for the the Ki67 25% (high proliferation), the very weak ER+ (which might even be Triple Negative!), and the Grade 3 cancer. Big gotchas! If we only had clinical factors to go on, I would proably be looking at Chemo + Hormone blockers being his suggestion. The Mammaprint may support that, or say the risk is LOW. Of course, I fear it's going to say High Risk, but we don't know yet. And even when I do know? Well, that day is not here yet.....

Anyway, there won't be any further developments until he has all the data and we are back from a trip to the beach where we will walk ourselves silly--rain or shine! 

Wishing you beautiful fall weather! Wishing everyone good news!

Hap 

SusannahW

Blessings, your post was so inspirational to me. I've been struggling with insomnia from both femara and Aromasin, but after reading your post I'm determined to really try to make Aromasin work. Thank you!



Susannah

fmaury

I thought I'd post an update on my discussions with my MO about hormonal therapy. I saw him a week ago for my second Zoladex injection and asked whether I really needed to be on an AI. I told him I was experiencing hot flashes (which I can leave with), difficulty concentrating, insomnia, and significant pain in my neck and hands. In a nutshell he said 2 important things 1) Hormonal treatment is strongly advised for me. Although I had a BMX and oncotype score shows a low risk of recurrence, I did have micrometastases in the sentinel node. Current clinical guidelines still make me a stage 1 but there is a very small risk that the cancer might have spread beyond the breast area, so keeping estrogens low reduces overall risk. 2) He thinks QOL is very important and should be weighed against recurrence risk so wants me to call if there is no improvement. If so, he will try switching me to another AI. If that does not work we will consider stopping the treatment.



I guess it's hard to argue with that kind of reasoning! It also puts the ball back in my court. So I am sticking with Arimidex for now but trying to minimize the side effects. This is what seems to be working lately: relatively high dose of Gabapentin (1100mg at night), 400-800mg magnesium and 600mg vitamin D. and then of course exercise so off for a walk I go!



All the best to everyone!

Caroline