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One more time/what happens when you stop AIs

ohilly
Posts: 446
Joined: Jan 2008

No one responded to my post about this, so I'll try again: I've only been taking Femara, but I'm already wondering: so what happens in 5 or 10 years (new research shows we might have to be on this stuff longer) when we stop taking our aromatase inhibitors? Does all the estrogen come back and then put us at risk? Do the side effects go away?

Has anyone asked their onc this?

Ohilly

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

Well you forced me to confess. I stopped taking Aromasin in October 2007. The onc took me off for 3 months to see if it was causing a problem. The problem continued so it wasn't the medication but I decided to not restart. It wasn't just the main side effect which was hot flashes all the time but it was very expensive and the onc told me it was only helping me 'slightly'. I decided it wasn't worth it. The way I understand it the medication helps some people greatly. I just am not one of these people.

Sandrina11
Posts: 8
Joined: May 2009

Hi Marcia,

I was diagnosed with invasive ductal carcinoma in 2005. I had a lumpectomy and 2 nodes removed, no node involvement. Tried Aromasin and Arimidex for 8 mos. No chemo or Tamoxafin.

My onc only told me to stop each one for 2 weeks. The side effects just kept getting worse.

Eight months later, I stopped the AI's altogether. Most of the side effects stopped except for the burning in my legs. His explanation for numbness and burning was it couldn't be caused from the meds.

Since you stopped in 2007, I wonder how you have been feeling since and what measures you have taken, if any, to help your survival.

I am anxious to know of anyone else who has stopped their meds and the outcome.

I do hope you are doing well and my thoughts and prayers are with you and all who share this terrible disease.

cruf
Posts: 931
Joined: Oct 2000

I took Tamoxifen for 5 years with minor side effects(hot flashes and vaginal discharge).I had no wt. gain at all. I took Femara for 8 mos and then switched to Aromasin for 1 1/2 years but stopped because of joint pain, wt gain, high cholesterol, dry eyes,low thyroid, trigger fingers, heel pain, etc. I've been off meds since Oct 2007. I still have high chol, low thyroid(both of which I take meds for), Hand, knee and heel pain , . I didn't have any of these symtoms prior to the meds. I am 57 so I guess it could be aging but I'm more convinced that the Aromasin and Femara started them. Hope this helps you see that you are not alone.Good Luck! HUGS!! Cathy

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

I have other health problems. I don't know what is causing some of my problems. I've seen a PCP and a dermatologist and neither could find a cause. I also was diagnosed in 2006 with Parkinson's. This has caused trouble with walking and small finger movement.

I was diagnosed in 2003 and had four cycles of chemo, a mastectomy, four more cycles of chemo, 6 weeks of radiation and was on Tamoxefin for 9 months and Aromasin for 2 1/2 years. The surgeon removed 15 lymph nodes and two still had cancer in them after the initial four cycles.

I don't know what the outcome will be. I guess time will tell.

tlmac
Posts: 272
Joined: Feb 2004

In women whose ovaries have been removed or are no longer functioning due to menopause, our only estrogen is produced when an enzyme called aromatase converts a hormone in our body into estrogen. AI's block aomatase from making this conversion. Once we stop taking our AI, the understanding is that aromatase goes right back to work. It's also possible that AIs might not work indefinitely but until this is proven, in a clinical trial, we just don't know.
The research on how long we should take our AIs is ongoing. What we know is that AIs trump Tamoxifen for post menopausal women. The clinical trial comparing the two was stopped so that the Tamoxifen group could be moved to Arimidex. Post menopausal women taking Tamoxifen for 2 or more years are often switched to one of the AIs because everything we know so far says they offer us more protection. Clinical trials are also studying whether 7-10 years of AIs offer more protection than just 5. A similar clinical trial of Tamoxifen years ago proved that 5 additional years was not beneficial.
Since there is, to date, no clinical proof that the AIs stop working after 5 years, I've chosen to continue taking Arimidex (with my oncologist's support) and wait for additional trial results. I started out with horrid joint pain for which I took Bextra until the FDA ordered it discontinued. I no longer have any pain (not sure when it finally went away). What I do have is insomnia (I'm retired so it's not a big thing for me)and thinning hair along the hairline, on top and at the temples (hate the thinning hair). I use a restorative product called K-Pak by Joico, take 750 mg of Biotin daily, have highlighted my hair to camouflage and have had it cut and styled a little spikey on top to look like there's more that there really is. I'm one of the lucky ones who never had hot flashes so the benefits of Arimidex, for me, currently outweigh the side effects.
Right now I believe staying on AIs past 5 years is on a case by case basis following a discussion with your oncologist to determine individual benefit. At least that's what it was for me. Hope this information helps.
terri

ohilly
Posts: 446
Joined: Jan 2008

I got more information from you than I did my doctor, so thanks. I don't know if you have followed all my posts about my thinning hair from Femara, but I can see I'm not the only one who has this effect. I wonder if the hair will grow back once we stop taking the drug? Can you tell me where you get K-Pak by Joico, and what is it? (I am already using Biotin, does it help?).

Ohilly

Christmas Girl's picture
Christmas Girl
Posts: 3641
Joined: Apr 2009

I joined this amazing group just last month. I believe this is the first post I've seen from you; therefore, it's very nice to "meet' you!

And, I'm writing to say thank you - so very much - for the information you've provided here. I just went through all of this with my onc in March. Marked that 5 year anniversary for completion of all invasive treatment (surgery/chemotherapy/radiation) by becoming a member here. Was diagnosed at 45, way before menopause. Chemo included chemically-induced menopause. Following rads, 2 years of Tamoxifen. Then, 3+ years & now still counting with Arimidex.

My onc is actually involved with the current clinical trial you reference. Therefore, participation was offered to me. I declined, because I didn't want to possibly get the placebo - thereby, experiencing not even the possibility of benefit. He agreed with my choice. My onc is at the forefront of the breast cancer crusade. I am, and have always been, very grateful to be within his care.

On behalf of others here who may be in the same situation without a good understanding as to exactly why, and also on behalf of those who may soon be offered this specific choice of continuing treatment - thank you, again. You did a beautiful job of translating medical jargon into layman's language!

Kind regards, Susan

tatooedinpink's picture
tatooedinpink
Posts: 96
Joined: Apr 2009

Terri, one more question for you. I have been on Arimidex for about 3 weeks. I stayed menopausal, so was able to switch from Tamoxifen. I have really started gaining weight. I've been naturally thin all my life, but at 50, not sure whether it is menopause, Arimidex, or or related to lifestyle change. I have gained 20 lbs in last year, 10 of it in last 3 mos, and it pisses me off! I am doing some moderate exercise, but guess I am going to have to start exercising every single day. UGH!

Debbie

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

That was some good info Terri. My doc says I'll be on anti-estrogen meds for 10 years once I complete treatment.I'm 59 .I didn't know about all the scary side effects.Yikes!

cabbott
Posts: 1046
Joined: Aug 2006

Dear Ohilly,

I asked my oncologist about the length of time I would be on aromasin and what happens after that. The answer was and is complicated. The short answer is that the research isn't in yet and they don't quite know when to quit and what should come after that. The 5 year course came from tamoxifen which is a very different drug. Tamoxifen worked by blocking the estrogen receptors with a weak estrogen-like substance. If the cancer cells were fueled by full-strenth estrogen, the weaker estrogen-like substance was like feeding a car watered-down gas. In a short amount of time the cells quit growing and "starved" to death for lack of fuel.Unfortunately, most of us have a variety of messed up cells in any given tumor. If a few of the cells did not require estrogen as fuel, they would survive to multiply and take over. In addition, a few of the cells in the tumor might have the ability to survive and multiply on the weaker fuel provided by the tamoxifen. Again, if those cells were in there, after about 5 years those few cells might have multiplied to where they were about to become a problem. If the cells were dependent on tamoxifen for fueling their growth, stopping the tamoxifen would stop them from growing. Thus, based on this theory, patients would be put on tamoxifen for 5 years and then taken off of it so that first the primary tumor would be halted and then any cells dependent on the tamoxifen would be halted. That's my version of what I understand of the theory behind the 5 year limit on taking tamoxifen. More theories of how folks metabalize Tamoxifen have come up since and I'm not sure how that affects the premenapausal folks that are now taking the drug.

The aromatase inhibitors are very different drugs. They lower our estrogen output to near zero. There doesn't seem to be any other fuel that they produce that would feed ER + cells. Mind you, my oncologist warned me that even though this drug works to greatly reduce ER + cancers, if I have a reoccurance it will probably be a harder to treat ER - one. He didn't have to explain that to me. If there are any ER - cells sitting around in my body, the lack of estrogen wouldn't be a hindrance to their survival and they could possibly multiply until after a while they become the big problem. Natural selection at the cellular level apparently explains the process doctors observe. But at least as of last summer my oncologist( a guy with one heck of a great reputation and an international reputation at that) couldn't tell me whether I would need to go off the aromatase inhibitors after 5 years or if I would be staying on them or if I would be advised to go onto another drug. The research, he said, was still being done. Keeping my estrogen level down for life might stop the cancer growth for life. Or maybe not. New drugs may be invented that might work even better or with less side effects. Or maybe I will be advised to go back on tamoxifen to start another 8 year cycle (I was on the 3 years of Tamoxifen, 5 years of exemestane regime) all over again in hopes that rotating will trick all those nasty little cells to kick the bucket.

As for side effects, my doctor felt that if the drug was causing them being off of it for about three weeks should cause the side effects to go away. I tried a short holiday for about a month when I couldn't shake an ongoing respiratory infection. I didn't get better. Turned out I had a lung cancer problem. The joint pain went away after getting the vitamin D problem straightened out. Being off the aromatase inhibitor didn't help at all. So if you are having side effects you can talk to your doctor about taking a drug holiday and see if that will help. If it doesn't, you may need to find out what else is going on. Good luck!

C. Abbott

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

I found your post to be very informative, and answered alot of questions i had been wondering about. You explained it in a way even i could understand.
my best to you
Jackie

mmontero38's picture
mmontero38
Posts: 1523
Joined: Dec 2007

Thanks, C. Abbott, you always explain things so thoroughly. I have stopped taking the Tamxoifen as of yesterday for a brief spell to see if the horrible joint pain and the charlie horses on my calves will go away. I woke up Thursday with so much pain that I couldn't walk and my fingers on my hands felt numb. They were so stiff and swollen that I couldn't bend them. And all this started 3 months after I started taking the Tamoxifen, it just got much worse as time progressed. I am now taking a short break to see if my symptoms go away. My vit d level is high, I take glucosamine, and calcium so now it's a matter of wait and see. I am not sure if he will change me to Arimidex once I'm done with this mini break but I'm hoping all these symptoms go away. Hugs, Lili

tlmac
Posts: 272
Joined: Feb 2004

Wish I could say I'm certain Biotin works but I'm not. I take it because my hairdresser highly recommended it and I'm willing to swallow one more supplement if it helps even a little. It's been about 6 months now and I do believe I see less hair swirling the drain when I shampoo. Perhaps that's just wishful thinking! The K-Pak, also recommended by my hairdresser, is unavailable to me locally (small town in the Ohio Valley) and pretty pricey online so I get it through my hairdresser. She buys it with her discount at a beauty supply company and sells to me at cost. I've also stopped shampooing daily after being told it strips the hair I have left of nutrients and weakens it. I shampoo no more than twice a week but do rinse and add conditioner in between shampooing (hate that greasy head look).
You asked if hair comes back once we all finish taking our Arimidex or Femara and there's just no way to tell. I have elderly women friends who have extremely thin hair, I assume due to a lack of estrogen as they age, and none of them has ever taken Arimidex or Femara. I worry that I might stop taking a drug that could extend my life for reasons of vanity only to find the thinning would have happened to me naturally as it has to a handful of my dear friends.
I stopped comparing my life before cancer with my life after cancer because it just depressed me horribly. Instead, I concentrate on how lucky I am to be alive and how much I still have to live for and it's helped me come to terms with no breasts, thin hair, insomnia, weight gain and that fear of a recurrence. I wish I could be more reassuring, Ohilly, because I can tell from your posts how deeply this has affected you. Does it help at all to know you aren't alone?
terri

ohilly
Posts: 446
Joined: Jan 2008

Yes, tlmac, it really does help to know I'm not the only one. I have a pretty similiar 'hair regime' to yours: I only shampoo a couple of times a week, take Biotin, etc.

Having my hair not come back the way it was was really hard for me, but I think I am coming to accept it. Someone on this board said that you have to accept your life the way it is now, not look back (always pining for the way you were pre-cancer) or ahead (worrying about recurrence). That is so true. I was the most distraught when I still thought my hair would come back the way it was, but now that I know that that will not happen, I'm in a better place. I also did what you did with the different hair cut and trying to camouflage it, which is making me feel better.

Thanks for reaching out,

Ohilly

Christmas Girl's picture
Christmas Girl
Posts: 3641
Joined: Apr 2009

The hair thing... My mother - no cancer, no chemo, no drugs - began to complain loudly many years ago about thinning hair when she entered natural menopause... :-)

It took me a very, very long time to finally accept & resolve the personal issues of pre- & post- cancer life. I now know I spent way, way too much energy & time hoping to get my "old" life back. You are so correct in that a big part of acceptance of the "new" is to cease comparison between the two. Because this can be ultimately self destructive. Yes, even with permanent limitations - I am grateful to be alive. And, I'm finally at peace with my revised self & lifestyle.

I like to use this "books" analogy, which helped to turn my frustration & disappointment into grace & dignity:

From birth to diagnosis is "Book I" of my life. It's been written & published (years ago), now out of circulation. No chance to revise/edit the story. It is what it is, as it always will be. However, the story of my life certainly doesn't end with "Book I"...

"Book II" is from diagnosis to present - not yet finished, since my story continues. Many, many chapters - hopefully! - remain to be written.

I sincerely hope your post, and mine, may help others here who are struggling to find their own ways into their own "new" normals.

Thanks for sharing, terri.

Kind regards, Susan

Sandrina11
Posts: 8
Joined: May 2009

I am so sorry to hear of your other health issues.You have certainly been through so much.

But, you have prevailed and are a strong person with a lot of will to keep going.

You didn't mention if you have gone back to taking any meds. Have you?

Some suspicious microcalcifications have been spotted recently on a digital mammo of mine. Since that was my first digital one, my surgeon onc doesn't know if they were there or not on a regular mammo.

So, like the rest of us in this unholy sisterhood, you just wait and see what will develop.

I forgot to mention that I had 8 weeks of radiation.

I do a lot of research on the internet about breast cancer and came to my own conclusions about whether or not I will accept from doctors, the way I wish to be treated with meds, etc.

Of course, my choice is an individual one and I don't know the consequences of making the choice that I did. I only know that I did not have any quality of life on the AI's.

This choice of mine, is certainly not right for most people.

I do take a lot of supplements, at this point in time, that may or may not help. Most doctors don't know much about them so I do my own thing.

So, please take care and keep in touch, if you wish

Marcia527's picture
Marcia527
Posts: 2731
Joined: Jul 2006

No I am not taking medication. I do take a daily multi-vitamin.

At least they spotted it early even if a regular mammo didn't see it.

Yeah, who knows how everything will turn out. I had an aunt and uncle where the aunt was sickly since before I was born. He was healthy. He died in his fifties and she lived to the nineties! I guess you just got to live while you are here. If we do make it to the rocking chair at least we will have a lot of good memories. At least if we don't get dementia-ekks don't want to go there!

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

An interesting link for those who have discontinued their meds and are estrogen positive. This trial is over in June 2010. I'm really interested in seeing the outcome.

(Thanks to Joe for showing me how to create a link)

Christmas Girl's picture
Christmas Girl
Posts: 3641
Joined: Apr 2009

And would be most interested in this topic.

Please try again, or just type it in. MANY THANKS!

Kind regards, Susan

Sandrina11
Posts: 8
Joined: May 2009

Hi Phoenixrising,

I am really interested in the link you suggested. However, it doesn't come up on what is highlighted in blue. Could you please just write it out?

I really would appreciate it.

I am so happy that I found this website today.

I do hope that even if I address one or two people that anyone who feels like putting their 2 cents into whomever I write to, will do so.

My main objective is to keep my immune system high, if possible. We all have cancer cells in us but, in a lot of us, the cells go awry for some reason or another.

I do take a number of antioxidents. I believe in mind over body.

I did see that Boron that is in some vitamin pills enhances estrogen so I take a vitamin that doesn't contain that. I also stay away from soy as there are different opinions about taking it if you have cancer.

Please be well.

Christmas Girl's picture
Christmas Girl
Posts: 3641
Joined: Apr 2009

And we are glad you found us! Warm welcome to you!

Kind regards, Susan

Sandrina11
Posts: 8
Joined: May 2009

for the warm welcome Susan. You have lifted my spirits today. All the ladies here are so wonderful to share their thoughts and knowledge.

I did look at the link and it certainly looks like an interesting experiment.

I am very cynical about things, so I hope you ladies will bear with me.

Since I am new here, I may vent more than you would like. Perhaps some of you have already done this. I hope this will not be a turnoff for all of you. If it is, just say,"Get over it". LOL

It seems to me that none of us would qualify for the trial because we are not newly diagnosed and some of us do not fit the criteria. Also, 100 people is such a small amount to test, I think.

And, yes, a lot of these clinical trials are tested on people that are not the people with more advanced cancers. I have noted that in my research. So, if "Eureka we've found it," is determined, I am very skeptical.

Anywho, there is a site called www.askapatient.com, which is certainly not scientific, but will give some info on how patients are reacting to medications. Go into ratings. I chose Femara as the med. You will see how many people claim to be suffering side effects from it. Not all do.

Then you might want to check out anything else on the page.

There are many scientific experiments being done that seem promising. I just wonder how it is decided which ones Big Pharma chooses to go with.

Thanks so much for lending an ear! I have a lot more I wish to discuss but I don't want to bore you or scare you away now that I have found you all.

Hugs,
Connie

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007
Christmas Girl's picture
Christmas Girl
Posts: 3641
Joined: Apr 2009

Yep, it works!

Very interesting... Thanks, so much!

Kind regards, Susan

Sandrina11
Posts: 8
Joined: May 2009

In case anyone is interested this is a proactive site for women with breast cancer and is not affiliated with any drug companies. I have been a member for several years now and get their newsletters, which are now on the internet.

I had tried to do some research for them concerning the side effects of AI's but, could only get info from English speaking countries. Other countries had the info in their own language. Some of the side effects listed were different from what OUR FDA listed. That's how I got involved with the research.

I was also interviewed about my concerns and side effects from a journalist in the LA Times, several years ago.

You may want to check out their site. I did answer one of their surveys at one time. It is a very informative site.

http://bcaction.org/index-php?page=ai-report

If I got the URL wrong, just search out Breast Cancer Action Org.

It is the adrenal gland which now produces estrogen if you are postmenopausal and turns androgens into estrogen.

Some of the sites I go into are very technical and I don't understand the procedures being used to test out scientific theories. However, I do believe there is something already just down the pike from one of these theories and I hope I will be around to be a part of it.

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

Hi Connie, I periodically go to their site and see what's new. I saw all the se from the AI's, it's a huge list isn't it? Ohilly had read it and started a thread concerning the se of the AI's and what we're not told. Sorry it's probably a few pages back at least.
This board moves pretty fast sometimes. Thanks for bringing it up again.
jan

mgm42
Posts: 494
Joined: Nov 2007

Went to this site and found the articles most informative, although a bit disheartening. But I believe the fact remains clear -- the doctors can't predict the long term effects of aromatase inhibitors and AI's do have a strong effect on the quality of many bc patients lives. My big question is -- are the side effects permanent. Guess I may never know the answer that question. Marilynn

Sandrina11
Posts: 8
Joined: May 2009

Ladies I am really frustrated and I don't knoiw how to cope with this.

As I mentioned earlier in comments, I had stopped AI's after 8 months of se. They started 2 weeks after I started the Arimidex.

In the meantime, in 2008, my surgeon onc, who was also acting as my medical onc. had told me that I no longer had breast cancer. He is considered a Top Doc, the ones who other doctors perceive to be the best in their field. Also was on the cover of NJ's Top Docs.

I asked him how he came to that conclusion and he said because nothing had shown up. However, after I went for a digital mammo, there are suspicious calcifications not seen before.

My question is, why hadn't any of my doctors suggested the digital mammo before? I had looked up info on it and requested one myself. I also had requested an MRI in the past.
He never thought it was necessary. I did. So I had one twice. There is a problem for me to have them again. Medicare makes it very difficult.

So he wanted me to do 3 biopsies and I refused. I figured that those calcifications could have always been there on the regular mammo but didn't show up. Now I am at a bi-rad 3. I want to see if there are any changes since my last digital before I go for biopsies.

I had already been to several medical oncs. The first one didn't make me feel like I was a part of my treatment. I believe there was a personality conflict, as well. He didn't think out of the box. Didn't know how much I knew, either.

Another one I went to, seemed to have a terrific background, especially in research. Aha, I thought he is the one for me. Turns out he really didn't see a lot of patients and because I chose not to take Aromasin, he didn't see the need to see me anymore.

I had asked him about the SE of this AI and was told, "Well this works differently." The side effects are the same and actually, you are supposed to have at least 2 years of Tomoxafin
before taking this AI. Found that info on the internet, not from him. Excuse my spelling of the AI's. They may not be correct.

So, my question to you dear ladies is what type of mammos did you have? Have you ever questioned your doctors about the treatments or the what's and why's? Am I the only one in a fizzy about all of this?

I asked the doctor who dismissed me if the Aromasin had helped his patients. His answer was, "I don't know." What the heck does that mean?

My surgeon onc is now going into administrative work and research so I don't think he will be seeing too many patients, in the future. Now, I must find another medical onc and I don't know who to choose.

One was suggested to me but, I looked up his background and was unimpressed. He went to a foriegn school and had a patient complaint about him.

Any suggestions or comments would be appreciated.

Christmas Girl's picture
Christmas Girl
Posts: 3641
Joined: Apr 2009

I am totally confused by many points within your post.

Tamoxifen is NOT an AI. It is not an "inhibitor" - it is a "blocker"... Tamoxifen acts as a "blocker" between estrogen and cancer cells.

Arimidex, for example, IS an AI. An AI inhibits (suppresses) the production of estrogen.

These drugs are prescribed according to many different factors; for example, diagnosis specifics and where the patient stands regarding menopause. Some patients are best served with 5 years of Tamoxifen; and, some with 5 years of an AI. The newest category is the "combination therapy" - for example, 2 years of Tamoxifen and then 3 years of an AI. And, importantly, not all patients qualify for the "combo"... You state "supposed to have at least 2 years of Tamoxifen" because you read this somewhere on the internet? There is an awful lot of crap on the internet. "Supposed to" according to what? Whom? These drugs are not used as "cookie cutter" treatments - there are too many patient variables involved.

Also, the side effects of Tamoxifen and AIs are most certainly NOT exactly the same.

I speak from first-hand experience: 2 years of Tamoxifen and 3+ years now and still counting with Arimidex. However, I speak as an educated patient - not a medical professional. We must all be as informed as possible about our own health, and be our own best advocates. The internet is a wonderful tool; but, certainly is not the end all and be all for information. There is much information available via the net to ONLY the medical professionals themselves. Regular folks simply don't have the same access.

Digital mammography is not yet widely available. It's relatively newer technology, and many hospitals are just beginning to acquire the equipment.

I'm sure any doctor/hospital/clinic would be willing to administer any and every test you'd like - provided you're willing to pay for it, in full, if the need cannot be justified and your insurance rejects the claim.

I believe it is always best for the patient to position herself/himself as a partner to their doctor. Therefore, before you go any further, my best suggestion is to find a doctor you can feel comfortable and confident with as a partner. Then, discuss tests and medications.

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

A regular mammogram picked up my microcalcification. When something is suspicious they then do a diagnostic mammogram. I don't know much about the digital mammograms or how often they are used just yet as they are still pretty new. My impression is that they are superior to the regular mammograms. I don't know the cost of a digital mammogram but if you think it's important and medicare won't pay, then perhaps cover the cost yourself.

Some docs are bypassing the 2yrs of Tamoxifen and going straight to the AI's. Many women find that by changing to another AI relieves some of the se. Stangely they sometimes work differently on different women.

As far as questioning the oncs, docs and anyone else involved, yes, I most certainly do.
And there have been times I know they don't like to be questioned. One doc told me that you don't tell the pilot of the plane how to fly it. This was about a protocol and why I thought it should be changed. Most of them like it if you just trust them and do as they say.
Having said that I realize that there are some gals here that have fantastic oncs that welcome a little sparring. I think it's rare though.

Good luck to you in finding someone you're happy with. Perhaps someone here from your state can help you there. I'm at a point where if the aromasin doesn't get along with me then I am planning my next step and will determine myself what I'm going to do. Please don't get me wrong, I am quite willing to listen and ponder their decisions, then I go and do my own research.

I hope I've been of some help to you. I know some of the other ladies will be able to help you out more.

big hug
jan

Sandrina11
Posts: 8
Joined: May 2009

Thanks ladies for you input.

I do know there is quite a difference between the AI's and Tomoxifen. I am not sure why you think I didn't.

The web sites that I go into are the Mayo Clinic, MD Anderson, and many other scientific sites. So, these are not junk sites.

What I neglected to mention is that I also called the drug company that manufactures Aromisin and was told exactly what I said about taking Tamoxifin for at least 2- 3 years before the Aromisin. I just confirmed it on the internet, as well.

It also mentions it is for advanced cancer which I don't think I have at the moment.

I am happy to hear that questions are asked of your doctors. You are correct that not all of them like to be challenged. I will bring in info to them to back up everything that I question them about. I am not an easy patient.

It is wonderful if you can have a lot of faith in your doctors. I am not one of them because of all the things that have happened to me with them over the years. Not just about the cancer.

I do believe there might be a cure out there already. I am not the only one that feels this way. However, it doesn't behoove the drug companies to find a cure quickly because the bottom line IS, the bottom line.

When I go into the web site Therapeutics Daily, and into oncology, I see all the scientific experiments being done and exactly how they are carried out. A lot of them are forward looking.

I also see among the lists of things to look at, what the companies expect to make, in the millions, if their drug or whatever is approved. They already figure that out.

In another site that I visit, I see what the pharmaceutical companies are telling their salespeople on how to present the drugs to the doctors. Their tactics have had to change because the salespeople or drug companies are no longer able to get away with offering perks to the doctors to push their pills.

One doctor said to me, "Oh, your one of those who think there is a conspirisy. "No, it's a money thing" I said to him. This is why I am so cynical and don't believe doctors are gods.

They do the best that they can with the info they get from the drug companies. So, I really can't fault them entirely.

I don't mean to put down anyone for following doctor's orders. If they work for you what more can one ask for? I seem to be one of the ones who has many reactions to drugs for some reason.

I am thrilled that we are still here to debate our thoughts on line. How great this is for me.

Friends can sympathize with us, but don't really know what we go through.

Have a great weekend and keep on staying well and feisty.

Hugs
Connie

djteach's picture
djteach
Posts: 275
Joined: Apr 2009

Hi everyone!
I'm reading this thread with growing concern about myself. I have not been a full partner in my treatment because I trusted my onc., until recently. I'm reading about tamox, and al's, where does femara fit in all of this. I was post menop.when I was diagnossed at age 48. I was on femara for 3 1/2 years then switched to tamox. when a lung met was found. I will check out the sites you have provided for more information. I just wanted to thank you for openly discussing your stories, your choices and why you made them. Of course, I always learn something on this board.

Ohilly, my hair was thick on femara and is now thinning on tamox. Who really knows? Drs. can only give you their best guess. There are no absolutes in medicine.

Love and gentle hugs,
Donna

Sandrina11
Posts: 8
Joined: May 2009

Since I am a Connie Come Lately, I don't know all the things that were previously discussed.

Consequently, you may already have this info.

BREASTCANCER.ORG is a very informative site that gives very easy to understand explanations.

Where it says "Search" on the upper right you can probably find answers to what concerns you.

Donna you may want to put in Compare Arimides, Femara, and Aromasin. That's what I did. There will be many answers for you.

Susan, my bone of contention with that last doctor who wanted me to take Aromasin was the fact that he didn't tell me that I should have taken Tomoxifen for 2-3 years before hand and that it is usually for more advanced cancer. I had neither.

If you put the word Aromasin into the search part, of the site I have mentioned, you will see it says that very thing.

And, perhaps you are right that I should be more patient with the doctors that I see. It's just that I want to know everything, not just the things they wish to tell me. I find that really upsetting. I can't ask questions if I don't know exactly what is going on.

That is why I ask for copies of all my reports and keep all my mammo X-rays and discs in my home. I take them with me whenever I need to do so. I have been to different hospitals and radiology groups for tests and I am not going to remember who has what of my records, if I leave them there.

The only doctor that has a complete record of my health problems is my PCP and then myself. Other specialist don't seem to communicate with one another. I had asked one onc if he had spoken to my surgeon onc and he said, "If he wants to speak to me, he can call me."

Is this a vanity thing with doctors?

I really want to find as much info that I can and maybe we can all come to some conclusions as to what is best for us. For most, it would be what the doctor prescribes.

You all may want to look into PubMed or Medical.net. Some of these you may have to join, but they are free.

The Journal of Clinical Investigation, or www.jci.org is very technical. It is for researchers and the public. You have to keep looking for things that pertain to breast cancer. Not an easy feat. Not easy to understand for us, anyway.

Let me know if any of these sites were helpful. Maybe they will bring up more discussions on what is found since I really can't cover all the info myself.

Take care my brave ladies.

Connie

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