One more time/what happens when you stop AIs

Christmas Girl said:

Welcome, Sandrina11
And we are glad you found us! Warm welcome to you!

Kind regards, Susan

tlmac said:

AI Past 5 Years
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

Sandrina11 said:

Breast Cancer Action

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.

Sandrina11 said:

Frustration

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.

phoenixrising said:

Sounds pretty frustrating
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