Aromatase Therapy Timing Key in Breast Cancer Survival

Nocmom

I am new here, so want to thank everyone for their questions and comments.  I finished FEC the end of November, had L lumpectomy with axillary node dissection the end of December, and completed radiation 3 weeks ago.  My OD wants to start me on Femara.  I have read up on all the side effects for all the AIs, and after all the SE from the chemo and rad., I am scared to death to start any AI.  I don't doubt I'll have SE with the AI,  and the one that scares me most is the problems with the bones.  My Vit D level is very low (13), and OD wants it a minimum of 30.  And have problems frequently with low potassium level (3.2 last week).  Started on Caltrate plus 50,000 IU of Vit D once a week for 12 weeks.  Not wanting to start AI with labs at the low end of the stick.  Agreed to consider starting after 5/17 because I want to listen to a teleconference by a doctor from the 2011 San Antonio Breast Cancer Symposium related to my DCIS and AIs. (among other things r/t DCIS) on that date.  OD was ok with that.  So, thanks for being here, and all the great info I've already read.  I'll let you know how it goes with me!

purple32

wow!

7% in one year? That frosts the cake for me. I may have to insist on the evil Tammy.

I met with an MO yesterday who gave me an Rx for arimidex. I told her I already had osteopenia AND have broken 3 bones. So, she is having me get another Bone density scan (Its been 5 yrs) She said if they are "REALLY" bad , maybe we will go to tammy . ( I am post meno at age 54)  but otherwise, this would work better, and I can also take fosomax.

***ALSO, yes, this onc is saying 10 yrs. gives greater benefit than 5.

Arimidex for me ?I dont think so!

RoxanneC

I had osteopenia when my Oncologist put me on Arimidex - she started me on Zometa one month after the Arimidex. My latest bone scan was 6 months ago and it showed that I no longer had osteopenia. The Zometa  had strengthened my bones. She stopped the Zometa shortly after that, and just this week, she took me off the Arimidex. She'd also had me taking Vitamin D, and Citrical with D,  which I still take.

I do, and have had, alot of aches and pains - which my regular Dr. diagnosed as Fybromyalgia. 

If one of your SE's from the Arimidex ( or any other AI ) is pain, your Onc. should give you an RX for pain meds. I was given an RX for Vicodin. When I take a whole pill, it would make me nauseous, so I started cutting them in half. A half every 3-4 hours really helps. 

For me, I could deal with some pains - as long as I knew that what I was taking that was causing it, was keeping my estrogen down to keep my cancer from recurring. I'm 51 and took Tamoxifen for 2 1/2 years, then Arimidex for almost 3 years.

God bless you all!

BTW - I just reached my 6th survivor anniversary in March of this year!

mybee333

I agree that just a small amount of a pain killer does wonders!

Timbuktu

Memorial Sloan Kettering website has a utube on breast cancer.  The head of the hospital says that no one knows what will happen beyond 5 years on arrimidex so they leave it up to the patient to decide.

It's a fairly new drug.  It takes decades to know what it will do.

TKSit

Just dc'ed Arimidex 5 weeks ago because of bone pain & fatigue. Could barely walk or use hands. On Femara now for about 3 weeks and feel bone pain & fatigue beginning again. Could not tolerate Tamoxifex either. I had hyster & ovaries removed last yr. My question for you ladies is, why do I have to take anything? My cancer was only slightly hormone receptive & I am not producing much because of surgery. AI's are msking me fatigued, chubby, fridgid & depressed, all which increase chance of cancer recurrence! I did so well with surgeries, chemo & radiation. It is frustrating that now I am having such a horrible time. Can anyone relate?

ruthbru

survivornot, you should check out to some of the stage IV forums. Some of the ladies there would be able to help you sort this all out and give you some better advice for you situation. Best of luck!

nancyjac

The study concludes that the overall survival rate of of those on aromatase inhibitors who did not have a recurrence (i.e. death from other causes) was less than those on tamoxifen.   Well.....DUH......most on aromatase inhibitors are post-menopausal (i.e. older) than those on tamoxifen (pre-menopausal). Older people die more from all age related causes than younger people, just ask your insurance actuary.  They needed a study to determine this?  Have to wonder about the smarts of all the MDs and PHDs were involved in this study.

doxie

Nancyjac - My thoughts exactly!  Seems rather obvious.

Pompeed

Getting older every day and that's not going to change.  Which means, even before the cancer detour, the slope was down hill.

Per MD advice, I tried the Tamox.  Gave that up after two months.  Was switched to an aromatase.  That lasted about two weeks.  Called the MD and said I was done.

Have decided it's better to live now and do what I can do while I have the strength and the energy to do it.  

Rather than take the drugs while hoping to live longer later but being bed ridden with side effects now.

Risk / reward analysis.   

babyboomeri199

The pharmacy from Bi Mart called me up and told me that my doctor had faxed my hormone pills persription today! I asked the pharmacy gal where the hormone pills come from! She told me India! And that it has the same side effects that the chemo had but not as bad! It still makes me very worried about taking it! The pharmacy gal told me the people in India ship the meds to the usa! And this makes me wonder if the FDA really approved of the this hormone pill! Let me know what you think! My husband would like to know if the side effects are pretty common or not from the hormone pills!  email me back and let me know what you think! My email is! ladysingstheblues@rock.com

mybee333

I would think that pharmacies have drugs manufactured all over the world that still meet our FDA standards.

nancyjac

Like other manufacturing operations, drug plants have been moving to Asia because labor, construction, regulatory and environmental costs are lower there.

The critical ingredients for most antibiotics are made almost exclusively in China and India. The same is true for dozens of other crucial medicines, including the popular allergy medicine prednisone; metformin, for diabetes; and amlodipine, for high blood pressure.

Of the 1,154 pharmaceutical plants mentioned in generic drug applications to the Food and Drug Administration in 2007, only 13 percent were in the United States. Forty-three percent were in China, and 39 percent in India.

Bottom line is that most prescriptions drugs are not made in the US so your choices are take them from where they are manufactured or don't take them at all. 

lorithelion

These AI's suck and the Mo's won't admit it. They say,one can reduce the side effects by doing thus and such. Well I have been doing everything that was suggested to me and still suffered demorilizing,as well as very debilitating side effects. Including depression, fatigue, and joint pain while I was on these AI's.  I was 60 when I was diagnosed with stage 11 ,DIC,grade 2-3 bc in my left breast. I had a bilateral mastectomy and no radiation since I had High dose radiation to my chest and back when I was 14 yrs old due to a neurofibro sarcoma on my thoracic spine in my chest.No one told me that I was at high risk to develope bc. It is lucky that I had a mammogram every year since I turned forty because thats how they diagnosed it in august 2012 just after I had turned 60 in may. Now I have been told that I am also at risk for heart disease since I had the radiation at 14.It's interesting that one of the articles in bc.org suggested that AI's are assosiated with other health problems that could possibly cause one's demise before a recurrence of bc can happen,thus, as I understand it,possibly affect the stats on bc recurrence for my type of bc. I don't know. all this information can be confusing and demorilizing.Do I want to significantly decrease my chance of getting a recurrence of bc by taking these toxic AI's,and suffer the horrible side affects,including in my case, a very increased risk of heart disease,or should I avoid taking them and possibly have a much better quality of life before I die. I am sorry, but I refuse to be a statistic either by the MO's that prescribe these AI's and seem to minimise the side effects, or the drug companys who promote these toxic drugs and make billions off the suffering of women because, in my opinion, they know that people who have experienced cancer are afraid and will grasp at any straw of hope. I think that most women would agree that we need some empathy from the medical community and much better communication.We need to be listened to, not treated like experiments.Last time I looked we are human beings just like every one else, only we unlike every one else, have one thing in common.We have been touched by cancer. Even at 60 or older, we still have lives to live. Remember the hypocratic oath. "First do no harm."

mybee333

I think the MO's minimize the side effects because they don't know what to do about them, can't predict who will have the most trouble with them and don't know what else to offer to help.  Doctors don't go to school for 12 years to say "I don't know".  They like to have the answers and with cancer, sometimes there are no answers.

nancyjac

lorithelion,  I'm sorry you have had such a hard time.  We all form our perceptions based on our own experiences. My experiences have been very different.  I have a wonderful team of doctors that do listen to me and have communicated with me and answered all of my questions to the extent that there are answers.  IMO, though, it is my responsibility to ask the questions and follow up to make sure they are answered to my satisfaction.  My doctors are not mind readers.  It has been over 45 years since your spinal sarcoma diagnosis.  It is highly likely that no one had determined any connection between it and breast cancer or heart disease at the time you were being treated for it.  I doubt that it was a case of nobody telling you, there was just nothing to tell back then.  All drugs have side effecs, not just AIs.  Aspirin and antibiotics have side effects.  I am greatful every day for the doctors and scientists and drug companies.  Without them I would be dead.

lorithelion

I realize that there was little understanding of the side effects of radiation in the 60's and that it saved my life. What I'm really having trouble forgiving is the fact that no one, not even my parents shared with me that I had cancer and that I probably was going to die.At the time I was really terrified that this tumor could even happen to me. I had no one to discuss it with,no one to support me or explain what was happening to me. The whole thing was a big secret.I could not understand why everyone around me was crying all the time, or talking in whispers behind my back, or acting strange and remote when I asked questions. When I finally found out after the radiation tx, it had a profound effect  on me, now that I look back on it. Ever since then, I have found it very difficult to trust. As for me taking responsibility to ask the questions and getting them answered to my satisfaction. I tried to do that. When my MO started me on anastrozole, he told me that I might have a little joint stiffness. At the time, I thought great, I can tolerate that. I was already on antidepressants as it was an ongoing problem since I was in my 30's. Within 6 weeks my depression got worse and worse. I thought my AD meds were not working.After changing meds and dosages three different times through my MD, I finally came to the conclusion that it must be a side effect of the AI. I immediately went to my HO's office and was told by the triage nurse to stop the AI. In the mean time I looked up all the side effects of AI's again. Depression was not listed. Since that time I have learned that the ezyme aromitase facilitates the production of estrogen by certain cells in the brain. The estrogen in turn manages the levels of seratonin and dopamine in the brain which directly affects a persons mood,outlook,emotions etc. It is The AI's job to enterrupt that aromatase pathway by blocking it, or destroying the cells that make estrogen. Many women need estrogen for their brains to function, just like men need testosterone. As such, when all the estrogen goes away it directly  affects brain function in many women,especially those who don't have a lot of cognitive reserve. When my HO wanted to put me on another drug called Aromisin, I tried to discuss this with him. He told me just to work with him;that this drug had a different chemical structure so it might not have the same side effects. A few days later, after thinking about it, I called his office wanting to know what % of recurrence was if I chose not to take the Aromisin. He called me back and in a tone of irritation said that the risk of depression was only 10% for those taking this drug and that I should just work with him after all "For God's Sake, Your Life is a stake.% And your risk for recurrence increases from 12% to 20%. I guess that I was stunned that he would talk to me like that.It made me very angry. But because I did not want to get cancer again, I started the Aromisin. I did well for about 6 weeks until I suddenly started crying at work, snapping at people, having memory problems etc.,so I called the HO and was told to stop this medication as well. Upon seeing my other doctor, he told me not to start the new med called Femora, because if I was not completely recovered from my depression, it would be much more difficult to reverse it. When I next saw my MO he told me that it was ok to wait before I started the Femora and ended by telling me that the next visit he wanted me to see his NP. So that is where I stand today. I am probably not going to take it.

Timbuktu

I had to check who wrote your post because for a second I thought I had!

I have every symptom you do.  I was on arrimidex for 4 months and the pain got so bad it was hard to get out of bed.  And there is always the fear of where that pain is really coming from.  So I went off of it for 2 weeks and felt human again.  Then went on femara.  i've been on femara for 3 weeks and can rarely get through a day without a long nap.  The pains are not as bad so far but they are there.  it's painful  to make a fist, to walk, to bend.  And I have to excercize and lose weight to avoid recurrence but how do I do that?  

But of course the biggest fear is recurrence and so I am too afraid to go off of the femara.  Broke down and took aspirin last night to get to sleep...the aches were keeping me up.  But aspirin makes my stomach bleed!  lol

hard not to sound like an old crank, i'm getting sick and tired of being sick and tired but I know you guys will understand. 

mybee333

And now your post sounds like it could have been written by me.  I am taking a break from the Ai's, have started an anti-depressant and will next start Femara when I feel normal and better again.  So far two weeks and I am still tremulous, somewhat depressend, achey, although less so and stiff.  I have daily headaches. 

At this point what gets me through the day are the small pleasures, simple things that I am mindful of and remind myself that I deserve. It is those things that make life worth living and the struggle worthwhile.

lisa2012

I am in my third month of Arimedex. No issues the first month or so, now I have back stiffness and achiness in the morning and stomach discomfort. Could that be related? I am trying to take the calcium but I swear it slows my digestion, have never taken it though I've tried over the years (I am 57)



I guess it's good that it exists for us. Scary some of the side effects it can cause!!!

mybee333

I would say the stiffness and achiness are the Arimidex. Muscle and bone pain are the most freq. reported side effect.

yes - it is pretty scary.

lisa2012

Hmmm. I am on my third month. I am only noticing the stiffness and achiness mostly when I get up. Could more stretching and exercise help? Never had depression, have been having low moments but processing a lot of the last year. 3 surgeries, chemo, reconstruction, etc. maybe a new bed would help? How different are the AIs?

mybee333

I think the AI's are all different for all people.  Aromasin is a steroidal, the other two non-steroidal.  That means diff. things for diff. women. I  would take the calcium and a D3, maybe magnesium.  I developed osteopenia within the past year. I had a total of 8 mos. with the AI's.  I would think the supplements are imperative for your bone health.

lisa2012

Mybee, what did you end up doing? Are you on any AIs? What are you taking for your bones? How long since you finished chemo?

mybee333

I did not have chemo or radiation.  Neither were recommended.  My oncotype was 16.  I had a uni MX. I am on a holiday from my AI - Aromasin.  After 3 1/2 wks. off of Aromasin, my feet and ankles still hurt, swell and I have other issues. I am scared to try Femara.  Am wondering about Tamoxifen, although I have an unfilled Femara script here. I take almost 7000 IUs of D3, calcium, magnesium, fish oil, a B complex, Flex a Min, and a biotin complex for all the potential side effects, etc. I think will add daily Asprin per Dr. Susan Love.

I was just on Cancermath.net.  It showed no additional benefit as far as 15 yr. survival rates for me with an AI as I have had a full hysterectomy - I have no ovaries.  I had my hysterectomy 3 1/2 yrs. ago. My potential cancer death rate is 11% -in the spring it is about 10% and I don't know if that is with or without an AI. They don't specify. But at initial dx it was 13% w/ therapy, with therapy being ovarian ablation w or w/o AI or Tamox. I am trying to weight all this out. Doesn't seem like much benefit - No benefit according to Cancermath, for me at least.

I am going to take a break from the Lexapro.  I am grinding my teeth, having daily headaches and feeling a little snowed. I would really like to simplify all of this.  Really.

Thanks for asking 

lisa2012

Hmm... I also noticed the not-amazing reduction rates with AIs. In fact, it almost seemed like the chemo reduced it LESS than the AIs!! And i can tell you that the chemo just plain sucked. I had no major issues, and it sucked. Sorry.

So if I can get some calcium going ,without constipation or stomach upset, I will see what I can do with the Arimedex.Stiff and creaky in the morning, OK for the rest of the day. Ugh, ugh, ugh.

mybee333

Chemo would have given me a reduction of 2%.  My MO said it was not worth the long term side effects for that low of a benefit. I estimate my current risk with the AI's to be about 3%. I started Femara last night but if I feel as I did on Aromasin, I will not continue. AI's reduce your risk by 50% overall.  So benefit is very individual and based on your overall risk.

lisa2012

Hey Mybee, my diagnosis was very similar to yours. However, my oncotype was 38 and I am BRCA positive. 

50% seems pretty good...I sure hope I can stay on the arimidex for a while. It's tolerable though I'm still figuring out what it does (2.5 mos on.) What are longterm effects of aromatase inhibitors? Everyone I know with estrogen positive tumors seems to take it. I have a cousin who is triple negative, and she can't take it. However, doesn't she then have a higher chance of recurrence? or is this all voodoo?

mybee333

We do have a very similar diagnosis but unfortunately due to your oncotype score, chemotherapy was definitely indicated for you.

The long term effects of Aromatase Inhibitors are essentially unknown but there are some effects they have seen in the short term that could be problematic in the long term, including impact upon heart, bones, cognitive functioning. Every system in the body is impacted due to the lack of estrogen however this needs to be weighed against the risk of recurrence and the mortality risk.

lisa2012

Good point.