Aromatase Therapy Timing Key in Breast Cancer Survival

doxie

Renya,

The Stage IV women will have more experience answering your quesiton.  It's great that your mets are receeding.  

Those of us ER+ w/o mets are expected to be on antihomornals like Aromasin for 5 years.  Some MOs want their patients to be on these longer.  I would be very surprised if your MO would suggest anything less than 5 years.  

ruthbru

If it is working, you definitely want to stay on!!!!! Going bald is not a usual SE of anti-hormonals. Mine was fine, totally normal.

ptdreamers

Renya, I too am losing hair but I guess it is a small price to pay if it keeps the beast at bay. I have another three and half years to go.

lisa2012

Well, heck! I started to take 2000 ius of Vit D. What is the downside? Might as well get it up.

nrb3

If I'm understanding the risk/benefits of tamoxifen vs aromatase inhibitors and the oncotype score correctly, then I'm not understanding my oncologists treatment regime for me.  I had stage !!A ER+,PR+ invasive ductal with 1 positive node.  I had a bilateral mastectomy because of my extremely dense breast, and had 26 lymph nodes removed. I had  early menopause long before my cancer and have been osteoporotic for 12 years, since I was 48.  I have already been on bisphosphonates for 7 years and have been on 50,000 vitamin D weekly for 12 years.  My  bone density has steadily increased with treatment, but I still have areas with osteoporosis, the rest are osteopenic.  I was on a 5 year drug holiday  from bisphophonates and was on a hormone patch  when I was diagnosed with cancer.  Because of my bone history, my oncologist wants me to be on Tamoxifen for 2-2 1/2 years and then switch to an aromatase inhibitor.   I am currently taking Tamoxifen and am experiencing few side effects.  I don't see the risk/benefit of an aromatase inhibitor as favorable for me.  My oncotype score gave me only a 4% chance of recurrance in 10 years if on Tamoxifen for 5.

mybee333

I do understand your question, I think, but I am wondering why you were started on Tamoxifen first and not directly on an AI as you have been post menopausal for some time.  The last time I saw the oncologist, I discussed my low risk of recurrence vs. the side effects of the AI with her.  She said that while what I was saying was true, she felt the true benefit was in preventing an occurrence in the other breast, 1% per year of life.  So in 20 years that would be a 20% risk.  That's a little scary for me but I have soooooo much trouble with the medications.  Having had a bilaterial MX however, this is not true for you.

nrb3

I'm starting on Tamoxifen to help build bone density.  I would like to stay on Tamoxifen the entire 5 years.  I don't want to take a chance with my bones on an AI.  I know an AI would be given with a bisphosphonate, but you can't stay on bisphosphonates indefinatley and I want my bones to last a potentially long time.  I will never be able to take hormones again for my bones, so my bone med options are becoming limited.  I'd like to stay on Tamoxifen as a bone builder and for cancer, and save the bisphosphonate for down the road.  My oncotype score was 1, so my tumor should be very responsive to Tamoxifen.  I feel blessed to have onlly a  4% chance of recurrance with 5 years of Tamoxifen.  I also feel my life is just as threatened by osteoporosis as cancer.

nrb3

What your oncologist said is interesting to me.  I'd always thought the adjuvant treatments were more to prevent distant metastisis.  It is scarey.  I hope you can tolerate Tamoxifen. 

mybee333

You know, I thought I read somewhere that the anti-hormonals didn't realize do much to prevent cancer from occurring in the other breast.  I was surprised when my doc. said that; I had never heard that before.

april485

mybee3, my doctor is putting me on tamoxifen rather than an AI too. I am post meno and have been for 7 years now. Her reason is my strong family history of osteoporosis (although my dexa scan this past July showed normal bones for me) and also because for DCIS, AI's are still in clinical trials although expected to be approved soon for DCIS as well as IDC and other BC. Anyway, if I don't do well with Tamoxifen, she will switch me to Aromasin. I am still on the fence about any of them! I already have some osteo arthritis and if I have joint pain, I will not be able to function at work. I already have enough pain in my hands, wrists, neck and knees/hips without adding the pain for the AI's! Ugh...hoping I do well enough on the tamoxifen that I won't have to worry about the AI's for a while anyway.

nrb3

I did some reading last night, and came across something that said the greatest chance of recurrance is in the first 3 years.  I think that depends on how fast growing your cancer is.  That's why some doctors start with the strongest med first.  Overall, the chance of serious side effects of each med are decreased on the switch regime since their likelyhood of the worst effects increases with treatment duration. 

april485, I know a little of your pain.  I was on Raloxifene, , at one point for 1 year, before cancer, to treat my osteoporosis.  I was also on a bisphosphonate at that time.  I had injured my hip years before in a car accident but didn't have pain until Raloxifene.  The aching stiffness in my hip was so awful. I also had pain in my femur.  That's when I was taken off both those meds and was only on the hormone patch.  My life was so much better on hormones.  Alas, they're a thing of the past.  Because of the problems I had with Raloxifene, which is a milder drug than Tamoxifen, I was leary of what would happen on Tamoxifen.  I really haven't had any problems on it.  Maybe because I went a few months without hormones after I pulled my patch before starting Tam.  Maybe because I'm older now.  I did have a hip replacement inbetween both experiences, so I'm sure that had a major impact, but I'm generally doing much better this tiime.  Mild hot flashes, compared to drenching constant ones, sleeping normally compared to insomnia.  My understanding is that the AIs are much worse in the aching bone pain department. 

Outdamnedspot

April485...I sound like you, same age and meno hx.  My MO told me at the first visit, that I would be on Tamoxifen for 2 years and then switch to an AI for 3-5 years.  At my first three month check-up she changed her mind and said Tamoxifen for 5 years.  I was a bit taken back as everything I have read seems to point in the direction of her original plan (for IDC).  She thinks that the protection and results (risk of recurrance) are the same on either regime. 

I'm wondering if it is that I am tolerating the Tamoxifen so well?  She mentioned the cost of AIs which really isn't a concern of mine.  She said she would reconsider AIs if I was closer to 65.  Not really sure why and maybe I should have asked, but it could be as here in Ontario, are drugs are paid for by the government once we turn 65.

The way I am looking at it right now, is I see her again in September and will  see if the plan changes again!

I have osteoarthritis as well, and I take a supplement that is Natural Eggshell Membrane.  Pure and simple and I swear by the stuff.  I take it daily and can tell if I miss.  Google it, there is lots of information on it and my MO said it was okay to take it.  I know another arthritis sufferer who has excellent results with it as well.   

Golden01

My MO recommended an AI for 2.5 years and then switch to Tamoxifen as he felt there were some treatment advantages. I went for a second opinion at an NCI designated research center and the doctor did not feel there was much difference in outcomes changing the order and felt going with Tamoxifen first would give me time to "work on your bones". I am osteopenic and also have a strong family history of heart disease so want my weight, cholesterol, etc., to be as low as I can get them before starting the AI. My MO concurred. So I've been on Tamoxifen for a little over a year and will make the switch as planned. I also read a number of the studies the MO referred to myself and did not feel the differences in which order you took the drugs were always significant but that you had both over time seemed more important. My internist has offered the option of starting on one of the bone building drugs a year or so before I switch to an AI. I have DEXA scans once a year and have held steady but not improved. My Vitamin D levels though have actually fallen, in spite of daily supplements, so I've upped the amount to 4,000 IU a day and am getting out in the sun! 

brady

I experienced "vaginal atrophy" as a result of bc anti-estrogen treatments. I also had my obgyn recommend creams or ring - and my oncologist also said no.

It was then suggested by my obgyn that I could monitor whether the estrogen topical cream was entering my system through blood tests before and after - so I could see for myself, as there are no guarantees and obviously the two medical fields are NOT acting as informed teams.

Since I'm 3c-4 BC, I decided not to take any risk, but that appraoach might make sense for others living with a little less high risk.

lisa2012

I am considering asking my MO to switch me to Tamoxifen. I am so achey, hurt so much in the morning, improves over the day but makes me nervous about anything but modest exercise. Does Tamoxifen give you the body aches like Aromasin?
And I know what you mean about wishing it were easier- my sister had no issues with Tamoxifen or Aromasin, total of 6 years. Luck of the draw, I guess.

anastasia31

Hi Lisa2012,

I was on arimidex for a whopping 5 months and the only SEs I had was hot flashes.  Zero joint pain.  I read where women that increased their vitamin D suffered less from joint pain.  I was taking 5,000 IU per day.  I tolerated arimidex well, but went off of it as my estrogen levels were higher on arimidex than off.

lisa2012

wow! So what did you do? and how did you find that out about your estrogen levels?? That is wild!

RMlulu

Bump

4sewwhat

Bumping again!

april485

Was really interesting to read back on what I wrote BEFORE starting the meds. Instead of my MO giving me tamoxifen, the new studies for DCIS showed benefit from aromasin so she put me on that due to my family history of blood clots and strokes and the fact that I used to smoke. Now, I am 6 months in to my personal hell of aromasin and I am still terrified to NOT take it due to recurrence risks and the fact that if DCIS does recur, 50% of the time it is invasive IDC. Sooo, I suffer through this evil drug and am having a VERY hard time with the joint pain just as I had suspected I would. I was praying that I would be one of the lucky ones with minimal side effects, but no such luck.

I am going to get to the one year mark as the MO said it can take that long for the body to adjust to these AI's and if still having issues, I am going to take my chances with tamoxifen or try Femara or Arimidex if I can talk her into it.

This stuff is EVIL! I am having a hard time making my hands type this and I am at work where I type a lot! My employer has been fantastic and has been letting me tack my lunch hour to the end of the day and leave an hour earlier since I really start to feel bad by late afternoon. I tried taking at night, but my worst side effect at night was insomnia. I tried taking in the afternoon, but I also have the sleeplessness issue so early morning is best for me.

My QOL is pretty poor and I am thinking of taking a month off and then restarting as I have heard side effects are less intense for some who have done this. Anyone concur witht this? Please post if you have less intense SE's after an AI vacation and a re-start. TIA!

lisa2012

I was on Arimedex 3 mos, Aromasin 9 mos, Femara 1 mo- and now Tamoxifen 3 mos. Tamoxifen is better (hands better and I can go down stairs etc) but my back and hips are still paintful most of the time. In bed especially. So  I don't know. My onc said if it gets worse he will do a bonescan. Ugh, I'd rather just take ibuprofen for a while!

k8eekatt

The osteoporosis medicine being studied has been shown to reduce recurrence about 1/3 more than with out it, and its called zolodronic acid for generic and Zometa for name brand.  Its very expensive, and also makes many people feel sick for months after an infusion.  Novartis does offer patient assistance which must be asked for by your onco, for those who qualify.  The recent San Antonio conference covered this also.

k8eekatt

O dear, I am so sorry to hear of your suffering.  I did not feel bad on Tamoxifen, I had hot flashes, but mostly felt fine.  I was premenopausal for a year after chemo, but the chemo took out my ovaries so then I was switched to an A.I. I bit the bullet taking Anastrozole for months and felt so anxious.  Then went to Femara (letrozole).  So much sadness and worry!!! But it did seem to let me sleep better.  I have had a year on A.I.s and now I just switched to aromasin (exemestane).  I am still feeling unhappy but its a lot better.  My dreams are troubling, but I don't wake up and cry for half an hour.  I encourage you to ask about changing A. I.s; you just need to stick with them for about 2.75 years then the benefit is the same as taking Tamoxifen and you can switch back to that if your doctor says its fine.  I can walk instead of hobbling now and its only been a couple weeks.  The arthritis and spine pain with femara were aweful and I was diagnosed with osteopenia.  Also my finger joints are much more smooth, they were starting to get so swollen they were locking sometimes on femara.  I wish you the best.  It might help to keep a daily log of your observations; weight, joint pain, exercise, sleep etc.  I noticed a huge drop in my activity on femara just because moving was so much more painful.  Everyone is different and each body will respond to the medicine in its own way.  I sure hope I get a better ride with aromisin than femara (!!!)  You might also ask if Zometa or zolodronic acid infusion every 6 mo. to protect your bones and also it is shown to reduce recurrence about 30% better than with out it.  Many blessings and good healing to you!

k8eekatt

You might ask your doctor to review the data on the estring, which only supplies estrogen to the local vaginal area and it does not raise blood levels except in 10% of patients.  You could do a before and after blood draw I suppose?

hollyboo

b8eekatt,

The osteo infusion lowered recurrence of cancer? Or fractures?

Thanks for the info!

hollyboo

Lifestooshort1

Hi Ladies, was diagnosed in 2006...had the whole she-bang of treatment...been on Aromasin since Jan 2007.  Anyone have any feedback on how long you've been on it?

lisa2012

I was on the 3 different AIs for 13 mos (Arimedex 3, Aromasin 9, Femara 1). My MO changed me to Tamoxifen for all the reasons you guys  list above. I am postmenopausal and ovaries are out. It's been 4 mos and it is better than the AIs were though I still have back and hip pain. He said that while the AIs are marginally better in cancer prevention for people in my age group etc, some people can't tolerate it and Tamoxifen is far better than nothing. Sigh.

Dogsneverlie

GiGiL - - I am in the same situation as you are - and just not sure which way to go....having a bone density done next week to see how that pans out - had one at 38 after hysterectomy but now turning 50 next week.  I think we are swaying towards the Arimidex vs. Tam but probably depends on bone density.

Feeling lost on this one but one step at a time I guess!

Anonymous

Have any of you tried Cymbalta to help with stress and joint pain? When first diagnosed, I sent myself into a tizzy with worry. My doc chose Cymbalta as I had been interviewing ONC's and two of three said taxol, which has joint pain as a side effect. I sailed through chemo with very little joint pain or neuropathy. 

Onc said if I have too many problems with joint pain, He will prescribe it again to see if it will help.

lastminuteD

Has anyone seen their oncologist since it was announced at ASCO the new recommendation for AI's will be 10 years instead of 5 years?