Is there anyone who could not take AI's?

Myra Lynn · 02-26-2012, 09:53 PM

I had a shock last week when my doctor said that Aromasin was adversely affecting my liver. I thought that we had finally found an AI that I could tolerate. He said that I had tried all 3 and was now off AI's. It is just over a year since I started Femara and then switched to Arimidex. I am post-menopausal and 95% ER+. Is there anyone else who has faced this situation?

rhondalea · 02-27-2012, 06:51 AM

I haven't taken AIs, but I have reason to believe that I may not tolerate them (or tamoxifen, which I'm supposed to start tomorrow) very well based on direct-to-consumer genetic profiling. Our genes determine how we metabolize certain drugs.

Here's a list of the known Cytochrome P450 Drug Interactions:

http://www.ildcare.eu/Downloads/arts...teractions.pdf

And here's a link to a power point presentation that explains how our genes affect drug metabolism.

http://www.genemedrx.com/explainreport.ppt

I am just learning about all this, and it's tough going because I don't have the scientific background to understand it easily, but you might want to might want to find out if there's anything else you can take (or stop taking, because certain supplements can act as inhibitors and inducers) to improve your ability to tolerate at least one of the AIs.

rhondalea · 02-27-2012, 08:54 AM

An alternative might be conjugated linoleic acid. A study involving the anti-aromatase activity of white button mushrooms postulates CLA may be responsible:

http://www.ncbi.nlm.nih.gov/pubmed/17178902

I PDF'd the Natural Standard monograph and uploaded it to my Dropbox account if you'd like to read more about CLA.

dropbox.com/sh/4n8bzeo73d93k64/ULu-_ZSZNj/NS-CLA.pdf

The above will open like a normal web link, but you will also be able to download it as a PDF if you want to keep a copy.

The monograph doesn't specifically mention the anti-aromatase activity of CLA (and I intend to get on Natural Standard about that), but it does explain the pros and cons of using it, generally, as well as the other purposes to which it's put. There are also several studies in Google Scholar and PubMed about CLA's anti-aromatase action, but it might be more productive to use "white button mushroom aromatase" as the search term.

karen z · 02-27-2012, 09:44 AM

I think you will hear from others who have had tolerance issues. I am not sure whether any have been for the same reason as you.
But you will hear from folks!

Myra Lynn · 02-27-2012, 03:56 PM

Thanks Rhonda, interesting links. And Karen, I do hope I get more feedback.

I am frankly in a real quandary. When I developed trigger finger, I went to a hand surgeon who thought it could be related to Arimidex. I thought I would manage it. Tried acupuncture, which didn't work, and then a cortisone shot which improved things. Very surprised when my onc decided to take me off Arimidex and switched to Aromasin. Part of me thinks I should return to Arimidex. The onc says I am increasing my risk of recurrence by 2%, but that he thinks I just can't tolerate the AI's. Femara quickly landed me in the ER with acute pain, so that was ruled out earlier.

DianneS · 02-27-2012, 06:50 PM

I could not take AI's. They made me really nauseated for weeks. I went off of them and felt better almost right away. Awful stuff. I am taking alternatives from my naturopath that keep the bad estrogens low. Working, so far.

tucker

Myra Lynn · 02-27-2012, 10:35 PM

Thanks Dianne, reminds me that we are individuals within this group, much in common, but with unique differences and challenges. I so appreciate hearing from you and others as I try to sort this out. It can be a difficult, lonely process.

rhondalea · 02-28-2012, 06:22 AM

I should have been a little clearer in my first post, but I was getting ready to take the cancer cat to the vet, and the little that's left of my mind was elsewhere. As I was driving in the car, I rewrote the post in my head--not helpful, I know--but I wasn't able to get back here until this morning.

As the chart indicates, different genes are involved in the metabolism of each of the aromatase inhibitors. As for me, I'm an intermediate metabolizer for one gene, and an ultra-fast metabolizer for another. (This may cause a problem for me when I start Tamoxifen, because both genes are involved; on the other hand, they may cancel each other out. Once I switch to AIs, though, it's going to be a bigger problem.)

Gene testing is available, and even if your doctor won't do it (although he ought to, and for specific information on the relevant genes, it would be better if he did), you can have direct-to-consumer testing done (with a mailed-in spit test). Even if you choose not to, it is important to know that a dose adjustment may be all that is necessary to compensate for your specific metabolism of the drug you choose. Without testing, that may take some trial and error, but it doesn't mean you can't take aromatase inhibitors at all.

With that said, if I were in your situation, I know that I'd demand another go at Aromasin. I've had some terrible problems with my thumb (because of my thyroid), so I am painfully familiar with how disabling it can be to have a wonky digit, but in a choice between that and the worry forgoing preventive treatment would cause me, I'd choose the former.

I wish you the best in getting this resolved. Please let me know how it turns out.

Myra Lynn · 02-28-2012, 07:16 AM

What I like about my onc is that he does everything gradually. I've been taking Aromasin 3X wk, rather than 7X but it has already affected my liver. The Arimidex seemed the best. Just a permanently swollen finger. I think the effect of AI's is cumulative and, after a year, I developed the trigger finger, which kept getting worse, despite weekly acupuncture. The hand surgeon felt it was likely that it was Arimidex-related.

Anyway, all thoughts are appreciated as I research this and try to sort it out. I'm seeing my surgeon next month. Will talk to him too.

rhondalea · 02-28-2012, 09:33 AM

Yeah, I'm a total ditz. I wrote "Aromasin" but I meant "Arimidex." It's one thing to have a problem with the finger and quite another to have liver damage.

I really hope you find a solution. If I run across anything that looks helpful, I'll be sure to post it.

tricia keegan · 02-28-2012, 02:49 PM

Myra I had a trigger finger/thumb in my first year of Arimidex and was'nt sure if it was related to that or from the Taxol I had just finished. I was glad to see it disappeared by itself after the first year and I just agreed to another two years of arimidex to take me to seven years so glad I stuck with it!

Melissa · 02-28-2012, 06:25 PM

What does your doctor mean by affecting your liver? My enzymes, at times, are elevated while taking arimidix. My oncologist says this happens in 2% of patients. Over time my elevated liver enymes have normalized. Maybe this is the case and yours will normalize. Of course, I continue to take AIs because of the many nodes involved. Wishing you the best!

Myra Lynn · 02-28-2012, 08:49 PM

Thanks so much to all of you. As always, you are the best support system and have given me food for thought. I feel in better shape now to make a decision. Will probably wait to speak with my surgeon in March and my onc in April. By then, I will know what my numbers are and how I feel when I'm off all AI's and can decide what I would be willing to tolerate.