Octobergirl
Eastern Seaboard
Joined: Mar 2009
Posts: 309
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Sep 9, 2011 01:39 PM Octobergirl wrote:
I am so disappointed to read this study...and more worried than ever about the effects of Femara/aromatase inhibitors on my bones and body. My DEXA showed 7% bone loss in 1 yr. and osteoporosis. All this for NO increase in survival?
Octobergrace
Diagnosis: 3/25/2009, IDC, 1cm, Stage IIIa, Grade 2, 4/13 nodes, ER+/PR+, HER2-
treeskier
Denver, CO
Joined: Sep 2011
Posts: 52
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Sep 12, 2011 07:14 PM treeskier wrote:
Dear Octobergrace,
It's not as bad as it sounded to you. It is not saying there is no survival benefit to your AI treatment. It is saying that the meta-analysis (a statistical way of adding up the results of a bunch of different research studies, so we know what happened over a very large number of patients) found that even though these drugs reduce your chance of your cancer coming back, it's not clear that they raise your chances of living longer. My understanding from the article is that they think people with heart disease have taken the AIs for breast cancer and then died of heart disease, and that balances out the decreased cancer deaths due to the AI therapy. The article says this didn't show up in the individual studies, just in the combined data. That could mean that it's just one kind of people whose deaths are speeded up by the AIs, and only in the big data set did they have enough instances to show the problem. I'm no MD, so I hope someone will correct me if I'm misunderstanding it.
Here's my conclusion from the study. After a couple years of AI therapy, which won't be wonderful for our bones (I'm also frightened of osteoporosis), we should ask our oncologists whether a switch to tamoxifen will be a good idea.It sounds like people on tamoxifen should do the opposite after a couple of years... to avoid that "cumulative toxicity" which AIs may have and which they know tamoxifen has.
I also saw something (don't know if on breastcancer.org or elsewhere) saying one of the most common osteoporosis treatment drugs is looking like it reduces the risk of breast cancer returning! So, if you already have osteoporosis, check into that. Sorry I don't know the name of the med. Good luck!
Ellen
Diagnosis: 8/2/2011, IDC, 1cm, Stage Ia, Grade 2, 0/6 nodes, ER+/PR+, HER2-
Blundin2005
Bracciano, RM Italy
Joined: Oct 2005
Posts: 1,336
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Sep 19, 2011 04:43 AM Blundin2005 wrote:
I just finished to read this article. This is one of the reasons that I support www.breastcancer.org. I'd have been a long time waiting to hear this news without them.
My first response was vindication. I suspended Arimidex after 3.5 years. One of the most difficult decisions I'd made in my life. The joint pain, cognitive confusion and heart palpatations where more than I could tolerate. I had every exam possible to manage these symptoms including a brain MRI after sobbing to my gyn about my memory loss and confusion. They found a small vascular spot.
I think too that a medical professional would find a trove of patient information in these boards that would paint a clearer picture of possible correlations to comorbidity issues. The problem is that patients find face time with doctors difficult to obtain. But we talk a lot to each other here.
Our bodies are so different from one another. We've said often that one size does not fit all and never will. So these findings are one more piece to our puzzle that will help women who follow us.
Best wishes to all as always,
Marilyn
"Never run faster than your guardian angel can fly"
DX 15 Aug '05, Stage1/grade1, 1.5 cm, IDC/DCIS, 0/2 nodes, ER+PR-,HER2 5% Dx Oct 2008 bladder papilloma low grade
SoCalLisa
San Diego, CA
Joined: Jan 2006
Posts: 8,035
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Sep 19, 2011 06:53 AM SoCalLisa wrote:
As it turned out, my timing in hormonal therapy seems to be fortuitous..I started tamoxifen in 2001 for two years and the switched to arimidex right before it was approved by the FDA..I did a total of five years..at the time in 2006, I attended a Strong Women Summit and was told in private by a leading
breast cancer MD that was enough...seems she was right and I lucked out...I will be an 11 year survivor in a few weeks..
DX 2000-IDC-DCIS-LCIS- 2B..POS NODE--ER+. PR+, HER2 NEG
Diagnosis: 11/24/2000, IDC, 2cm, Stage IIb, Grade 1, 1/8 nodes, ER+/PR+, HER2-
Blundin2005
Bracciano, RM Italy
Joined: Oct 2005
Posts: 1,336
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Sep 19, 2011 12:44 PM Blundin2005 wrote:
So Cal Lisa -- Yes, you did luck out and congrats on 11 yrs.
Here's an article that I think adds to this discussion and it makes sense to me.
jnci.oxfordjournals.org/conten...
Marilyn
DX 15 Aug '05, Stage1/grade1, 1.5 cm, IDC/DCIS, 0/2 nodes, ER+PR-,HER2 5% Dx Oct 2008 bladder papilloma low grade
Octobergirl
Eastern Seaboard
Joined: Mar 2009
Posts: 309
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Sep 19, 2011 01:35 PM Octobergirl wrote:
I have an appt. With an endocrinologist this month to advise my team re osteoporosis issues and continued use of aromatase inhibitors. I have asked about a change from Femara to Tomoxifin. I have no doubt that osteoporosis has as much potential to incapacitate and kill me as does breast cancer recurrence.
Thanks for posting the additional info.
Octobergrace
Diagnosis: 3/25/2009, IDC, 1cm, Stage IIIa, Grade 2, 4/13 nodes, ER+/PR+, HER2-
SoCalLisa
San Diego, CA
Joined: Jan 2006
Posts: 8,035
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Sep 19, 2011 01:42 PM SoCalLisa wrote:
The good news is that my bone density decline stopped when I stopped the arimidex. I took fosamax for a couple of years..
DX 2000-IDC-DCIS-LCIS- 2B..POS NODE--ER+. PR+, HER2 NEG
Diagnosis: 11/24/2000, IDC, 2cm, Stage IIb, Grade 1, 1/8 nodes, ER+/PR+, HER2-
treeskier
Denver, CO
Joined: Sep 2011
Posts: 52
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Sep 23, 2011 11:24 PM treeskier wrote:
Does the Fosamax increase your bone density a lot? I am so glad to hear you are doing well.
My husband the epidemiologist says 80% risk doesn't mean I'll be 80% sick, it means I can be one of the 20 unlucky ones who keep fighting, or one of the 80 lucky ones who walk away. (Or 10/90, or whatever they say my odds are.)
What has impressed me since my bc diagnosis is how much they damage you in the name of making you well. I believe my surgeon and rad. oncologist are top-notch and they are very happy with my outcome (so far) but I really feel damaged, and I know it will be more when I am spending 5 years on Femara ... or whatever AI/tamox combo ends up happening. As one of our sisters said on another board of bc.org, bc sucks.
Ellen
Diagnosis: 8/2/2011, IDC, 1cm, Stage Ia, Grade 2, 0/6 nodes, ER+/PR+, HER2-
robinb
Joined: Sep 2011
Posts: 1
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Sep 25, 2011 06:55 PM robinb wrote:
I guess I have good timing as well for deciding to read this article and looking for advise. I would like to hear from anyone who has taken tamoxifen and then arimidex. I have done well with tamoxifen (on it for 1 1/2 yrs) but since treatment has put me into menopause, my doctor wants to switch me to arimedix. I'm concerned about the side effects. I work full time and I'm on my feet all day. Also, I take medicine for my blood pressure and heart disease runs in my family. Interested in your thoughts.
Diagnosis: 6/2009, IDC, Stage IIa, Grade 3, 0/1 nodes, ER+/PR-, HER2-
treeskier
Denver, CO
Joined: Sep 2011
Posts: 52
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Sep 25, 2011 10:15 PM treeskier wrote:
This breastcancer.org site has a great chart comparing the side effects of the different AIs. They don't all increase heart disease risk :-)
I have the understanding that 2 1/2 years on tamox and then 2 1/2 on an AI is a common practice for situations like yours. Maybe you can ask your onc about staying on the tamox for another year since you do well with it. Again, this website has research reports about that.
I used to work retail for years and it's like that -- on your feet all day. If you have to stand in one place a lot, it helps if you have a low stool and rest one foot on it at a time.
Take care and good night.
Ellen
Diagnosis: 8/2/2011, IDC, 1cm, Stage Ia, Grade 2, 0/6 nodes, ER+/PR+, HER2-
Wabbit
Indianapolis, IN
Joined: Feb 2011
Posts: 1,501
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Sep 25, 2011 10:41 PM Wabbit wrote:
Since the AIs are prescribed to postmenopausal women is it really a surprise that there would be more deaths from other causes in this older group ... thus less survival benefit being shown? The older the patient the more likely they already have ... or will develop ... other medical conditions which could lead to death.
The Tamox or Tamox/then AI group is younger ... in some cases much younger. It just makes sense to me that their survival statistics would look better.
Diagnosis: 3/2006, IDC, 3cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Oct 9, 2011 11:14 PM Fearless_One wrote:
WhiteRabbit, that's an excellent point.....
"Just when she thought the world was over, the caterpillar became a butterfly"...Proverb..
GiGiL
Joined: Apr 2011
Posts: 373
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Oct 14, 2011 03:35 PM GiGiL wrote:
WhiteRabbit that is excellent logic to my way of thinking. I thought of that as well. I am just about to start on these things, and no matter what I read I don't know which way to go with it. I am post-menopausal and I want to do it as right as I know how to. My physician recommends the Tamox first and then the AI. She will however, take my wishes into consideration. I am going to refer to the above mentioned chart of side effects and get a decision going soon.
Diagnosis: 5/6/2011, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Oct 14, 2011 09:26 PM charlottesmama wrote:
I just started generic Aromasin a few weeks ago. Now I'm so confused! Should I be taking this at all? My bones are good and healthy, as is my heart. No other health issues at all. My bc showed up last year when I was 50, and was slow growing and hadn't spread. I wonder if the side effects (achy joints, foggy brain and wicked hot flashes) are worth it. Is the Aromasin going to offer me enough protection?
A/C, Start date: 2/8/2011. Uni-MX and DIEP 5/3/2011. Taxol start: 6/3/2011
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Oct 15, 2011 01:44 AM mgm1953 wrote:
I started on Tamox at 51, then after my estradiol levels went down was switched to Femara. No bad immediate side effects from either, except for extreme vag dryness, (which may or may not have occurred with menopause anyway.) and horrible insomnia.
Insomnia continues. I'm on ambien etc.
And I got osteoporosis. I'm on Alendronate. I did hear that one of the calcium supplements helps fight BC.
And I got a recurrence, 1 yr after I stopped taking both of these! Was it growing all along? Would it have been more severe w/o hormone blockers? Did I eat too much tofu meanwhile? Who knows?
Hugs to you all
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Oct 21, 2011 10:04 PM charlottesmama wrote:
Achy in my joints every day and night. Joints vary, and since I'm on my feet all day, who knows? Just using motrin now since serious pain-killers scared me. Ugh.
A/C, Start date: 2/8/2011. Uni-MX and DIEP 5/3/2011. Taxol start: 6/3/2011
treeskier
Denver, CO
Joined: Sep 2011
Posts: 52
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Oct 22, 2011 06:21 PM treeskier wrote:
Sounds miserable, Charlottesmama. My BS said stretching has a lot of benefit so I'm trying to build that habit. I'm committed to taking an AI for the long term, or AI and then tamox, because the things I read and the docs I respect believe it really changes the odds of recurrence.
What I've gathered on the AI threads is that people who really suffer SEs from one AI don't necessarily have them with another. After some reasonable time of trying aromasin, you could try femara.
Hope it gets better!
Ellen
Diagnosis: 8/2/2011, IDC, 1cm, Stage Ia, Grade 2, 0/6 nodes, ER+/PR+, HER2-
LtotheK
Joined: May 2010
Posts: 1,937
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Oct 22, 2011 06:26 PM LtotheK wrote:
Hi treeskier--I'd love to read some studies on the increased benefit of an AI. In my case, due to my oncotype, it is about 2% (25% "increase" in BC survival on my stats according to onc). I think I'm pretty confused by all of this. Does anyone have a link to how it lowers chance of recurrence?
I also have osteoporosis in the spine now (thanks, chemo and insta-menopause). I'm reading here that Aromasin doesn't seem to have bad effect on bone health. So I'm revisiting the switch to an AI if necessary.
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Oct 23, 2011 12:57 PM Fearless_One wrote:
LtotheK, according to the hormonal therapy section of this website under "side effects comparison chart", osteoporosis is listed under both Arimidex and Aromasin, so I'm confused as well.
"Just when she thought the world was over, the caterpillar became a butterfly"...Proverb..
Medigal
Joined: Mar 2010
Posts: 1,343
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Oct 23, 2011 01:20 PM Medigal wrote:
I read the article and want to see one about what happens to bc women who take nothing but Arimidex for 8 years! My Onc refuses to take me off it or change anything. He said last visit I need the "extra help" from the Arimidex due to the type of bc I have and I need to keep taking it. My gyn is upset with me because I have developed a lot of vag dryness and problems and he insists I need to take something with a really small bit of estrogen in it. My Onc got furious and now I am caught between two hard-headed doctors! I already have Osteopena but my Onc feels the Arimidex is not deteriorating my bones enough to stop. I guess he will wait until I need a wheelchair and then I can stop! Is anyone else on this board taking just Arimidex for longer than 5 years and doing ok? That article concerns me but mailing it to my Onc will just infuriate him and I may end up without an Onc!
I called the makers of Arimidex and asked them about dangers of taking Arimidex over 5 years and they said they don't have records of women staying on it longer than that so they don't know what happens. Gee! Maybe I can be an Arimidex long-term guinia pig if I survive much longer!
Any info you can provide on what happens longer than 5 years on Arimidex will be much appreciated. I get bone density tests yearly and just take extra Vit D3 to protect bones but my fears are getting the best of me since I am soooo up in age! Thanks for any advice.
Medigal
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Oct 23, 2011 01:24 PM Fearless_One wrote:
Medigal, what trend to your yearly bone density tests show? If only slight decreases, I would certainly stay on it. Are you on a bone-builder, too?
"Just when she thought the world was over, the caterpillar became a butterfly"...Proverb..
Medigal
Joined: Mar 2010
Posts: 1,343
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Oct 23, 2011 02:51 PM Medigal wrote:
Fearless: The nurse told me this last bone density showed a small increase but not enough to be concerned about. She just said to increase my Vit D3 to 2000 IU from the 1000 I had been taking. I can't take Calcium or any bone-builders due to severe constipation problems and other pain they cause me. I drink very little milk so they are amazed my bones are holding up so well. I am just concerned by the fact I can find no one else taking Arimidex for this long and what else may be happening to my body that I don't know about.
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Oct 23, 2011 03:11 PM MJLToday wrote:
Medigal would your onc consider some sort of topical estrogen, such as Estring or one of the creams?
MJ '98 Stage 2 ER+/PR-/Her-, AC+Tam: Sep 08 bone/liver mets. Arimidex,Faslodex,Zometa thru 12/09, Aromasin+Everolimus thru 03/10, Abraxane thru 3/11,Xeloda 8/11,Armed Activated T cell trial 9/11, Taxotere/Gemzar now
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Oct 23, 2011 04:07 PM Fearless_One wrote:
Medigal, it sounds like you are doing well on it - if it were me and I were doing that well, I would stay on it. I know it's scary since it is longer than the 5 years that have been studied, but it sounds like you are being monitored well.
"Just when she thought the world was over, the caterpillar became a butterfly"...Proverb..
LtotheK
Joined: May 2010
Posts: 1,937
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Oct 23, 2011 04:42 PM LtotheK wrote:
Uh oh....I have a script for Fosamax I'm about to start. Please tell me these buggers don't add to constipation. It's already a full time job with the calcium, D and Tamox...
Fearless_One, were you on the thread with the latest Aromasin study on density? From what I can see, the very latest study shows no real difference in bone density and new cases of osteo for the placebo vs. Aromasin group.
Medigal
Joined: Mar 2010
Posts: 1,343
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Oct 23, 2011 05:40 PM Medigal wrote:
MJL: That was a cream my gyn wanted to prescribe for me which made my Onc go zonkers. He said I am allowed "nothing" except Replens for my vag problems and he was sending a letter to my Gyn. When I went last week to my Gyn for my vag problems, he just told me he could do nothing for me since I refused to use his estrogen cream and that it was only going to get worse! He wasn't very nice to me and I would get another gyn but he is the only one available on my healthcare plan! I am really in a fix so I bought more Replens and hope I can just help myself best as I can.
LtotheK
Joined: May 2010
Posts: 1,937
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Oct 23, 2011 06:16 PM LtotheK wrote:
Medigal, get thee to a naturopath. Mine was going to try out something they do in Europe, it is hyaluronic acid in suppository form.
Studies seem to indicate a little estrogen cream doesn't have a big effect on circulating estrogen, but I feel sure my onc would also say "no way".
In other news, I really don't like the sound of these two doctors about this, it's like it's your fault or something. It just sounds so not compassionate, as if it isn't hard enough anyway.
For me, the dryness I experienced during chemo was a major quality of life issue. I was miserable and burning a lot of days. I would take the risk. What's the point of living longer if I can't sit down because I'm on fire. I was so unhappy and nothing seemed to work to alleviate the daily difficulty of it.
treeskier
Denver, CO
Joined: Sep 2011
Posts: 52
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Oct 23, 2011 08:22 PM treeskier wrote:
On the breastcancer.org section on side effects of hormonal therapy, all 3 AIs are listed as having osteoporosis as a side effect. According to my MO and what I have read, the hormone estrogen plays some important part in formation of bone cells. AIs completely suppress estrogen so bone cells can't be built as well. (Tamoxifen just blocks the tumor cells from getting estrogen so your bones can still get it.) That doesn't match up with the recent research LtotheK mentioned.
Thank goodness the research reports on breastcancer.org are easy to search and are translated into regular English for us! If I find anything specifically helpful, I'll put it on the thread.
I had a lot vaginal dryness and sensitivity during part of menopause, not nearly the burning that LtotheK has, but enough to make me able to imagine what she is talking about. I am afraid that if I were suffering that much, I might be willing to use whatever topical cream made it better, even if it had estrogen in it. Docs who don't have vaginas don't know how intensely distracting vaginal pain can be. Can't walk without it rubbing, can't sit without... Oh, man. I send my best wishes for you to have sweet relief!!!!
Ellen
Diagnosis: 8/2/2011, IDC, 1cm, Stage Ia, Grade 2, 0/6 nodes, ER+/PR+, HER2-
kira1234
punta gorda, fl
Joined: May 2010
Posts: 2,657
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Oct 23, 2011 08:30 PM kira1234 wrote:
community.breastcancer.org/for...
This is an interesting thread about sex and the drugs we all are on!!
Diagnosis: 6/1/2010, ILC, <1cm, Stage Ib, Grade 1, 0/1 nodes, ER+/PR+, HER2-
LtotheK
Joined: May 2010
Posts: 1,937
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Oct 23, 2011 08:31 PM LtotheK wrote:
So we are on the same page, this topic discussed the newest study on Aromasin and bone loss. I read it carefully, though admit I'm super-dubious.
Here's the topic:Developed osteopenia in 1 year since Arimidex!