All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: I need some convincing to stay on Femara...
Posted on: Sep 8, 2009 10:11PM
OK, like some of you, I'm questioning if I'm going to stay on Femara. In addition to what can be seen in my profile, I have tested negative for the BRCA 1 and BRCA 2 genes. My oncotype score was 21, so I had 4 rounds of TC. I had my ovaries/tubes removed shortly after I found out I had BC. I am now having Zometa infusions which may have anti-breast cancer properties.
Since I started Femara two months ago, my hair and nails have virtually stopped growing. My joints ache every single day.
Considering everything, do I really hafta stay on Femara???
Posts 1 - 23 (23 total)
Sep 8, 2009 10:38PM Mom_of_boys wrote:
Thanks for the quick reply, MOTC! I'm going to look into it... My onc gave me a list on Friday of anti-breast cancer foods to focus on. I guess I'm to the point where I need to weigh the pros and cons of Femara and other AI. Maybe I'm just tired of this journey and all of the SEs that come with it!!!
Sep 8, 2009 10:41PM Mom_of_boys wrote:
Thanks orange. May I be so naive as to ask what the CYP2D6 status is?
Had a liver MRI last week since my liver enzymes are a bit high right now. Liver MRI said all okay there, but my onc still wants to find out why they are high. Seems to me that my liver may be in overdrive from everything it is being asked to process!
Sep 8, 2009 11:40PM , edited Sep 8, 2009 11:41PM by sushanna1
Note that many oncologists do not recommend the test that is marketed to measure one's ability to metabolize tamoxifen. Not sure if that is what Orange 1 is talking about, but if it is, your doctor may not suggest it. I am trying to remember what my oncologist said when I asked about the test a year or so ago. I think that she said that it had not been fully tested and that there was too great a chance for contamination. There is a thread on the subject somewhere on the board. I think that the title is something like "Test to Metabolize Tamoxifen".
Regarding the femara, I suggest talking to your oncologist re: switching to tamoxifen or simply trying to put up with the femara for a couple of years then switching. I did five years on tamoxifen and have made through 2 1/2 years of femara. My goal is to make to three years then try for four. I don't have joint pain, but do have hair thinning. Tamoxifen was much easier for me, but some have problems with it as well. Good luck, but take a look at the stats before you give up on AI's.
Sep 8, 2009 11:47PM , edited Sep 8, 2009 11:49PM by carol1949
Just remember it is your body. You don't have to take any medication that you don't feel comfortable with.
I stopped taking femara about 6 weeks ago... and feel so much better. Less aches and my hair has thickened up almost immediately.
I do take Lugol's iodine with the approval of my oncologist. It does almost the same thing as the femara which is to block estrogen in the breasts. I encourage you to do lots of research and most importantly listen to your inner being. (Your intuition).
Incidentally, my lumps in my remaining breast are smaller than the last mammogram and my oncologist said she thinks it is from the Lugol's.
I also have contact with a local physician who left traditional medicine because shewas tired of the "system". She encourages holistic and alternative therapies.
Sep 8, 2009 11:47PM arbojenn wrote:
I just want to let you know that in my experience, while the side effects of Femara can be bad, for me it worked miracles. I have a recurrence and before my reconstructed breast was removed, I was put on Femara to see how I would respond as several of the tumors were visible. I could actually SEE it work: so many of the tumors shrank, some even disappeared. The onc can help you cope with the side effects. Tamoxifen is for pre menopausal women as their ovaries produce most of the estrogen in the body. After menopause, an enzyme called aromatose is secreted by the adrenal glands and is turned into estrogen in other tissues of the body. The Femara prevents your body from secreting this so the tumors have no estrogen to fuel their growth. Discuss this throroughly with your doctor before making any decisions. I am so happy to have the Femara option this go round: for my primary, chemo was the main line of defense. As the Femara is working for me, I do not have to go through that this time.
Sep 8, 2009 11:55PM apple wrote:
I'm sticking with it.
5 cm is big. i had 24 rounds of chemo and a bunch of cancer challenges. my nodes after my first 12 rounds of chemo were still growing and a brief stint of femara made them shrink immediately.. still i did 12 rounds of taxol. I am now on Femara - it's been 2 months. you learn how to deal with the effects... exercise, a religious diet, lots of water and rest. it's very tolerable and i feel so much safer.
(mine was 5 cm too)
Sep 9, 2009 04:11AM London-Virginia wrote:
I echo all the plus comments on Femara and outcome. In the UK now it is the first line of choice for post menopausal women and no offense to anyone but research does now clearly show an advantage with AIs over Tamox. (of course, there are always reasons why an onc may prescribe either drug for a particular situation). I persisted with exercise, taking calcium and D3 supplements and all the things that on this Board people suggest helps, and they certainly did work for me. I sympathise absolutely with how fed up one can get on this journey.
Weirdly enough, when I started taking Femara my nails got stronger. Perhaps the two aren't related. Would it be possible to get some tests done to see if your magnesium and other vit/mineral levels might be a bit low? I would perhaps consider an ordinary multivit/mineral but not in big doses. I have found all these things helpful.
Thank you ladies with your comments about the cort of neo adjuvant effects of Femara - very encouraging. My Prof of oncology is very committed to Femara and is runnign a trial to see how 10 years on AI works. IT will be a while before the results are through, and it might be one would use a series of different AIs over that time, but it is sounding positive.
Anyway Mom, I hope you find some peace and comfort soon -
Sep 9, 2009 09:00AM Member_of_the_Club wrote:
My onc says that the benefit of AIs over tamoxifen is real but very, very small. He said this has been consistently shown over many studies. So while AIs are the first choice if you are post-menopausal, switching to tamoxifen will not sacrifice much of anything. If the SEs of an AI are so bad, it may be worth it. This is especially true since the original poster is considering no hormonal meds.
Sep 9, 2009 10:10AM Mom_of_boys wrote:
Thank you everyone for your responses. It gives me a LOT to think about... I've pretty much blindly followed my onc's recommendations until now. I think I'm going to make an appointment to talk to her some more after I do more research on my own. Again, thank you for your responses!!!
Sep 9, 2009 11:23AM kim40 wrote:
Well I guess everyone is different as to what they can or cannot handle or want to handle. I'm on Femera too. I don't have my ovaries out yet, but I do receive Zoladex injections to put me in menopause. I have achy joints but I know why I have achy joints. And to me, it is worth it. Femera is my safety blanket
Sep 9, 2009 11:52AM Mom_of_boys wrote:
One more thing I should add... I had a liver MRI last week. FORTUNATELY, it came back ok. However, my liver enzymes are still up. I'm concerned I'm throwing too much at my liver for it to process.
Sep 9, 2009 01:20PM OneBadBoob wrote:
You may also want to ask your doctor about possibly switching to Arimidex or Aromasin--they are also AI's but some women to better on one than on another.
Sep 9, 2009 02:35PM London-Virginia wrote:
Good luck Mom!
Sep 9, 2009 05:50PM orange1 wrote:
My onc at Mayo (who conducted much research on the metabolism of tamoxifen) explained to me that tamoxifen is not the active form of the drug. Tamoxifen is what is known as a pro-drug, it must be metabolized by the body into its active form called endoxifen.
The potential problem is when tamoxifen is not effectively metabolized to endoxifen. An enzyme in the liver called CYP2D6 is responsible for the metabolism of tamoxifen into endoxifen. About 7% of Caucasians and African Americans are "poor metabolizers". They inherited a genetic form of the CYP2D6 gene that does not allow tamoxifen to be converted into endoxifen. In hormone receptor positive BC, poor metabolizers have significantly higher rates of breast cancer recurrence than good or "extensive metabolizers". There have been a few studies published that demonstrated this effect.
There is a simple blood test that will tell you your metabilizer status. It costs only a few hundred dollars and some insurance will pay for it. I think its a good idea for all patients that are considering taking tamoxifen to be tested.
If you are not an extensive metabolizer, consider an AI instead.
This test is especially important for Her2+ women on tamoxifen, because they have exceptionally bad outcomes if they are poor metabolizers. For more on this, see the Her2+ forum.
Sep 9, 2009 05:55PM , edited Sep 9, 2009 06:26PM by orange1
When clinical studies of AIs were ongoing, CYP2D6 metabolizer status of tamoxifen was not routinely tested. Thus intermediate and poor metabolizers were included in the tamoxifen study arm even though it turns out in retrospect, that they were not likely to benefit as much as extensive metabolizers. This decreased the apparent effectiveness of tamoxifen in the study - making AIs look relatively better.
The authors of this study looked at the effect of accounting for intermediate and poor metabolizers and created a model to look at how results might have been, had metabolizer status been taken into account. Results indicate that tamoxifen may be just as good or better at preventing recurrence as an AI, depending on assumptions of the effect of intermediate and poor metabolism on outcome.
Warning: this article is pretty technical, but worth sharing with your onc if you are on an AI because it is supposedly better.
If your are a poor metabolizer, an AI is likely to be better for you.
Pharmacogenomic Variation of CYP2D6and the Choice of Optimal Adjuvant Endocrine Therapy for Postmenopausal Breast Cancer: A Modeling Analysis
Rinaa S. Punglia, Harold J. Burstein, Eric P. Winer, Jane C. Weeks
Affiliations of authors:Departments of Radiation Oncology (RSP) and Medical Oncology (HJB, EPW, JCW), Dana-Farber Cancer Institute, Brigham and Women's Hospital and Harvard Medical School, Boston, MA
Correspondence to:Rinaa S. Punglia, MD, MPH, Department of Radiation Oncology, Dana-Farber Cancer Institute, Brigham and Women's Hospital, 44 Binney St, Boston, MA 02115 (e-mail: firstname.lastname@example.org ).
Background: Adjuvant endocrine treatment with aromatase inhibitors improves disease-free survival compared with tamoxifen in postmenopausal women with estrogen receptor-positive breast cancer. This difference could be due to differences in tamoxifen metabolism because levels of endoxifen, the active tamoxifen metabolite, vary with the number of mutant alleles, including the *4 allele, of the gene encoding cytochrome P450 2D6 (CYP2D6).
Methods: We created a Markov model to determine whether tamoxifen or aromatase inhibitor monotherapy maximized 5-year disease-free survival for patients with the wild-type CYP2D6 genotype (wt/wt). Annual risks of recurrence with aromatase inhibitors and tamoxifen in breast cancer patients who were not selected by CYP2D6 genotype were derived from the Breast International Group 1-98 trial. Genotype frequencies and the hazard ratio for cancer recurrence on tamoxifen among patients with the *4/*4 genotype relative to the wt/wt or wt/*4 genotypes (HR*4/*4 = 1.86) were based on data from an analysis of the North Central Cancer Treatment Group trial of adjuvant tamoxifen. We explored the impact of CYP2D6(*4) heterozygosity on disease-free suvival for wt/wt patients by studying a range of effect (ie, recurrence on tamoxifen) estimates, from no effect of the single mutation (Effwt/*4 = 0, recurrence rate in wt/*4 patients same as that in wt/wt patients) to complete effect (Effwt/*4 = 1 recurrence rate in wt/*4 patients same as that in *4/*4 patients).
Results: With HR*4/*4= 1.86 and Effwt/*4 = 0.5, the 5-year disease-free survival of tamoxifen-treated patients with no mutations (wt/wt) was 83.9%, that is, essentially the same as that (84.0%) for genotypically unselected patients who were treated with aromatase inhibitors. With greater HR*4/*4 estimates, disease-free survival with tamoxifen exceed that with aromatase inhibitors in wt/wt patients, even at lower assumed Effwt/*4 ratios.
Conclusions: Modeling suggests that among patients who are wild type for CYP2D6, 5-year disease-free survival outcomes are similar to or perhaps even superior with tamoxifen than with aromatase inhibitors. Endocrine therapy tailored to CYP2D6 genotype could be considered for women who are newly diagnosed with breast cancer, particularly those who have with concerns about either the relative toxicity or the increased cost of aromatase inhibitors.
Editied to add: wild type (wt/wt) corresponds to extensive metabolizer, *4/*4 corresponds to poor metabolizer and wt/*4 corresponds to intermediate metabolizer.
Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
Sep 9, 2009 06:30PM , edited Sep 9, 2009 06:30PM by orange1
More on tamoxifen and CYP2D6 - a direct copy of NanaA's post from another thread - this article talks about drugs that can interfere with the metabolism of tamoxifen:
I googled CYP2D6 and found a pharmacy times web site that listed all the inducers and inhibitors . I printed out the page and web address at the bottom is as follows: http:www.pharmacytimes.com/iss... It was a 2 page article about CYP2D6 and types of metabolizers ,and the reactions with certain meds and and a list of inhibitors and inducers. Hope you can find it with this address. If not google CYP2D6 and look for a pharmacy times link. Of all the pages I looked at this one was the most easy to understand. Good luck finding the info you want. Annette
Sep 9, 2009 10:17PM artsee wrote:
Mom of boys......What other drugs are you on? I had raised liver enzymes last year as well and my onco took me off of all drugs and supplements. By process of elimination we found that a drug called Amitryptiline was the culprit. When I no longer had that in my system the levels took a down slide big time and I was back to normal.
Sep 11, 2009 01:03AM dlb823 wrote:
Mom_of_boys ~ I couldn't tolerate Femara, so I'm doing a natural estrogen modulator instead, along with some serious exercise and diet modification. Refusing or going off an A/I is obviously a very personal choice, but after a lot of reading up on natural alternatives for this phase of my tx, I'm comfortable with what I'm doing (after a mast/chemo/rads).
There are a couple of threads here you may want to check out if you haven't already. One is called DIM (which is an estrogen modulator; the other one is I3C). There's also a thread entitled "Natural Girls" where we discuss this topic (Tamox/A/I's/alternatives) quite a bit.
I would never encourage or advise anyone to go off an A/I, but I do think women should know that there are natural alternatives. Deanna
Oct 13, 2009 07:42PM , edited Oct 13, 2009 07:43PM by carol1949
Deanna could you please tell me more about the 13C and the dim and also where you can obtain it? Also, approximate cost.
p.s. You can personal message me if you prefer.