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Post by KelleeM on Apr 2, 2016 10:02:05 GMT
I know there are several Peas who have been through breast cancer treatment. I'm wondering if anyone is willing to share their opinions on taking aromatase inhibitors after you've completed treatment, specifically if you were post menopausal. I took Arimidex for 18 months before stopping last September. I had reached the point where the joint pain was seriously impacting my quality of life. I told my oncologist what was going on and he suggested I take a 3-4 week break then try Femara. I took the break and thought about taking the Femara and decided not to. I saw him a couple of weeks ago and he was appalled that I wasn't taking anything. During my previous visit he seemed pretty much okay with me not taking anything if that was my choice but this time he genuinely seemed upset that I wasn't taking anything. I promised to reconsider and a week ago I started taking the Femara that I had since last September. By Tuesday the joint pain was back and by Thursday (the last day I took it) I had broken out in a rash, which later turned into hives, on my upper chest/neck. I called Thursday and told him I was not taking it any longer. He called in a new prescription for Aromasin. I was shocked at the price of it (the generic version) and finally agreed to get 10 pills to try it. I'm now second guessing myself again. I was okay with my decision last September but my doctor's reaction made me rethink it. I know that no one can make this decision for me. I guess I'm hoping someone has some insight that will help me make an informed decision. I'm going to tag melissa in hopes she has a minute to chime in as I know she's a survivor as well as an ob/gyn. |
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gsquaredmom
Pearl Clutcher
Posts: 4,086
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Apr 2, 2016 11:11:02 GMT
No experience, but wanted to wish you well and suggest getting a second opinion with another doctor
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Post by christine58 on Apr 2, 2016 11:16:37 GMT
Second opinions are always good....
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Post by utpea on Apr 2, 2016 11:44:19 GMT
My only thought to share with you was the way Femara was framed by my oncologist.
The hope is that all the surgeries, chemo & radiation eradicated the cancer I had in my body. Taking Femara was like an "insurance policy" against any future reoccurrences.
I'm not sure what has kept me cancer free for 17 years, but I have a set of teenaged twins who need me around. I'm thankful for all the treatments science had to offer. I'm sure you'll make the decision that is best for you.
(((Hugs)))
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Post by miominmio on Apr 2, 2016 12:03:50 GMT
Have you checked out Ann Silbrrman's blog "but doctor I hate pink"? She also has a Facebook page. She lives with metastatic cancer, and will always give you links to relevant research if you have any questions. Lots of cancer patients are following her. (And I think she used to be a Pea)
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valleyview
Pearl Clutcher
Posts: 2,816
Jun 27, 2014 18:41:26 GMT
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Post by valleyview on Apr 2, 2016 15:57:05 GMT
PMd you.
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Post by lucyg on Apr 2, 2016 17:45:52 GMT
I didn't take anything after treatment (surgeries, two different chemos, radiation) was complete. I wasn't a candidate for it at the time, although I think since then they've become more all-encompassing about who gets what. Anyway, I don't know about all that stuff.
When thinking about treatment, I always remember something I read in Dr. Susan Love's Breast Book: that a large percentage of BC patients isn't going to die of BC even if you didn't treat it with chemo. That some smaller percentage is going to die no matter what you throw at it. That really there is only about 10% of patients whose lives would be saved by chemo, but of course, you don't know who that 10% is. So you give chemo to almost everyone.
I had a very aggressive breast cancer but I haven't had a peep of a recurrence in the 18 years since chemo. Still, I tend to think that for most people, the chemo (or other meds) are an insurance policy, not necessarily an imperative. If it bothers you to take it, that may be a very reasonable cause not to take it.
BUT just because I have an opinion, doesn't mean I actually know a damn thing. I would listen to Melissa and the other doctors on this matter.
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Post by Basket1lady on Apr 2, 2016 18:11:04 GMT
I haven't had BC and can't offer any constructive advice there. And I hate to throw more pills at the problem, but can you take something for the joint pain? Maybe that could be a compromise?
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Post by mikklynn on Apr 2, 2016 18:33:41 GMT
No advice, I just wanted to say I'm sorry you are having a tough time!
DH has had to make decisions based on quality of life. He ended up on a reduced dose of one medication due to intolerable side effects.
I'm wishing you the best of health!
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Post by KelleeM on Apr 2, 2016 18:52:34 GMT
Thanks to all of you for your responses and the PMs as well  The Peas rock!! I'm going to make an appointment with my gynecologist and discuss this with her. Maybe she'll have some insight to offer. A second opinion is never a bad thing, right? And lucyg...you never fail to make me smile with your responses! Thanks!  |
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melissa
Pearl Clutcher
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Post by melissa on Apr 2, 2016 21:12:05 GMT
Here's my story, FWIW.
Lumpectomy, chemo then bilateral mastectomy and bilateral salpingo-oophorectomy (meaning bye bye tubes and ovaries).
A few weeks later, started on Arimidex. Ended up with arthritis in every joint in my body. Had to get up and walk on the treadmill in the morning to be able to function. Stayed up at night at work moving my fingers in case I was called urgently into surgery. It was pretty lousy. Took a 6 week break as recommended by my oncologist. Within 2 weeks, all my large joints were back to normal. It took longer for the wrists, fingers and toes. Took tamoxifen for 5 years without issue. At the 5 years mark, we decided to try Aromasin aka Exemestane (generic name). Have been on it for 4 years with minimal issues. I did develop some arthralgias last summer. Had noticed that my generic had changed. Oncologist wrote a prescription for a specific generic but then my insurance changed and I was back on a different generic. I'm doing just fine on it now. Had a bone density just this week and it was NORMAL!!!
Something to think about. You don't HAVE to take an AI. You can take tamoxifen. The survival/recurrence rate is only tiny bit different, like 2%. I did well on tamoxifen. Tamoxifen is also likely to be much cheaper. I pay very little for Aromasin thanks to a law in NJ that mandates a certain degree of coverage for oral cancer medications.
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Post by KelleeM on Apr 3, 2016 0:25:07 GMT
Thanks melissa. My concern with Tamoxifen is that I'm obese and have read there's a high risk of blood clots. I pulled out my gynecologist's business card and found she has a website where you can schedule an appointment and fill out lots of the medical history ahead of time. I made an appointment and was able to add a note that I wanted to discuss the medication issues as well. |
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melissa
Pearl Clutcher
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Post by melissa on Apr 3, 2016 3:01:33 GMT
The oncologist was appalled you were not taking anything because the statistics you were given for your cancer depended on you taking at least 5 years of hormonal therapy. We now understand that 10 yrs is even better than 5 years and the risks that were once a worry are lower than originally thought and do not seem to increase over time. For example, the DVT/PE risk of tamoxifen seems highest in the first 2 years.
While you are rightly concerned about DVT/PE risk, you have to balance that with the risk of cancer recurrence. I don't know if you also had chemo and radiation, but for tumors with hormonal receptors, the treatment that is the most critical are these medications- tamoxifen or an AI.
As a word of warning, I've found that not all gyns are really up to date on these medications nor fully understand the side effect profiles. I frequently speak to other gyns on this topic.
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Post by KelleeM on Apr 3, 2016 15:11:29 GMT
Thanks for the additional information melissa. I did have chemo and radiation. I appreciate the heads up about the gyn possibly not being as well informed as I was hoping...we'll see. I need a pap anyway so it won't be a wasted appointment. |
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The Peas rock!!
