Aromatase inhibitors/side effects/ scary
I am stupid. I never asked about all these side effects. This organization, BCA, surveyed almost two thousand women about the side effects. I won't go into the whole thing, BUT:
32.6% of the respondents had hair thinning (no wonder I have this!)
and there were more serious side effects listed (although a small percentage, don't be scared) like heart attack, stroke, and osteoporosis.
I also talked to someone today at the American Cancer Society, and she told me these drugs have only been around 6 years or so, that no one knows the long-term side effects.
I would have taken Femara (or some other AI, same thing as far as I'm concerned) no matter what because I don't have a choice, but I feel my oncologist and the drug company should have informed me of these side effects so I would at least be prepared. I am also having a lot of insomnia, which was listed as one of the more frequent side effects.
I know this is irrational, but I feel angry at Novartis for not telling me about all this. Yes, the hair thinning and other side effects are listed on their website, but in very fine print and (at least I believe) underreported.
What do you all think?
Ohilly
Comments
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I guess the doctors don't
I guess the doctors don't talk about side effects from medications because most people won't get them and will just worry on it. I asked my surgeon what my odds were of survival and he wouldn't even tell me that. He said I could be one of the survivors on the good odds side. One thing I've learned here is to ask about side effects. I think it is more common for doctors not to mention them. The drug companies make money on the drugs. So they are going to use fine print.
Yes these are new drugs and that is why they cost so much more than Tamoxifen. Aromasin was about $350 a month if you didn't have insurance. Ouch.0 -
AIs and side effects
I just started taking Arimidex a month ago. My dr. put in my records, yeah, I get all my records, and in them was the statement, "all side effects, etc, etc, were discussed." Balogny. We never discussed any side effects. (Haven't seen her since, in two weeks I will.) Anyway, I sure didn't know about the thinning hair. I am just now getting my hair back, I had my last chemo Feb. 17. Now, am I going to lose it again? Just kidding, I know thats the least of our worries. I guess it's my fault for not searching out this stuff more. I have noticed I don't sleep very well, only about every third night do I really sleep all night. Didn't know anything about that either. I thought it was the coffee, but who knows? Sometimes I don't know what to do, cause everytime I think I'm on the right tract, something else pops up that really throws me for a loop.0 -
severe insomnialibmama said:AIs and side effects
I just started taking Arimidex a month ago. My dr. put in my records, yeah, I get all my records, and in them was the statement, "all side effects, etc, etc, were discussed." Balogny. We never discussed any side effects. (Haven't seen her since, in two weeks I will.) Anyway, I sure didn't know about the thinning hair. I am just now getting my hair back, I had my last chemo Feb. 17. Now, am I going to lose it again? Just kidding, I know thats the least of our worries. I guess it's my fault for not searching out this stuff more. I have noticed I don't sleep very well, only about every third night do I really sleep all night. Didn't know anything about that either. I thought it was the coffee, but who knows? Sometimes I don't know what to do, cause everytime I think I'm on the right tract, something else pops up that really throws me for a loop.
LibMama, I am on Femara (pretty much the same as Arimidex) and am having severe insomnia, FYI. So your problems sleeping may be related to the drug you're taking.
Ohilly0 -
Side Effects
Hello, Ohilly. I understand your frustration. I took Tamoxifen 2 years - now taking Arimidex 3+ years... No side effects, at all, from the Tamoxifen. Now, the Arimidex - totally different story... :-)
My pharmacy provides a sheet of info about the drug, dosage, side effects, etc. for every medication. Automatically generated by their computer system. Do you not get this? It's not as comprehensive as that from the drug companies themselves; nevertheless, it's really helpful and not in fine print! Also, it's important to see your doctor(s) on a regular & frequent basis while taking these types of meds - to discuss side effects & so that the doctor can monitor them.
I'm certainly not sticking up for your doctor, nor any drug manufacturer. Once, I experienced a side effect that blew my mind - totally unprepared for it, not warned... When I pointed this out to my oncologist, his responses went something like this: "If we told EVERYBODY about EVERYTHING that MIGHT happen, people would refuse treatment; therefore, more people would die." Sorry for these harsh words.
Your anger is certainly not irrational. We go through so darned much, sometimes it's hard to take yet another thing... I always suggest, no matter what the circumstances - turn anger into action. You might feel better for it. In your case, maybe have a really open discussion with your oncologist. Best wishes to you.
Kind regards, Susan0 -
Side Effectsohilly said:severe insomnia
LibMama, I am on Femara (pretty much the same as Arimidex) and am having severe insomnia, FYI. So your problems sleeping may be related to the drug you're taking.
Ohilly
Ohilly hugs to you...
I have to tell you that I was afraid to post.. how the Arimidex had effected me.. I didnt want to scare anyone... but to let you know, I am now NOT taking any AFTER TREATMENT drugs...
I do know that some women have had no problems with it what so ever.. I on the other hand... ha!!
The insomnia, hotflashes, weight gain, mood swings, were tough, but the damage its caused to my joints, bones, and muscles, are still present
& I have been off the medication since the last week in February.
My Onc took me off it for 2 weeks to see how I felt.. & I was to go back and we would decide the next course of action.
Well, not feeling any better after those 2 weeks he said I had 3 choices... #1) was there were 2 different medications but in the same family as the Arimidex... with the same side effects.. as you know... #2) was take Tamoxifin... my statement to him was..."Tell me the worse case side effects of Tamoxifin" He said .. Blood Clots... and I said ...choice #3 ??? He said to take nothing... well... after having such a rough go of this whole ordeal... I had already had blood clots from when they put the port in ... having to give myself injections in the stomache, and take Warfin... I really didnt have to put much thought into my decision.. at that point... but my response to him was this..." If I had to fight this Monster again , and I was on aromotase inhibitors, I wouldnt have what it takes to win the battle. So my choice is made for me .. I will risk it!! ..because the way I felt on the Arimidex was not living.. I am 53, and I felt as if I was 153... I know this is an individual choice for all of us...
and as I said way up ^ there... some have no side effects at all... I was just one who did.
My hopes and prayers to you, Ohilly.
Trish0 -
I don't think everyone wouldChristmas Girl said:Side Effects
Hello, Ohilly. I understand your frustration. I took Tamoxifen 2 years - now taking Arimidex 3+ years... No side effects, at all, from the Tamoxifen. Now, the Arimidex - totally different story... :-)
My pharmacy provides a sheet of info about the drug, dosage, side effects, etc. for every medication. Automatically generated by their computer system. Do you not get this? It's not as comprehensive as that from the drug companies themselves; nevertheless, it's really helpful and not in fine print! Also, it's important to see your doctor(s) on a regular & frequent basis while taking these types of meds - to discuss side effects & so that the doctor can monitor them.
I'm certainly not sticking up for your doctor, nor any drug manufacturer. Once, I experienced a side effect that blew my mind - totally unprepared for it, not warned... When I pointed this out to my oncologist, his responses went something like this: "If we told EVERYBODY about EVERYTHING that MIGHT happen, people would refuse treatment; therefore, more people would die." Sorry for these harsh words.
Your anger is certainly not irrational. We go through so darned much, sometimes it's hard to take yet another thing... I always suggest, no matter what the circumstances - turn anger into action. You might feel better for it. In your case, maybe have a really open discussion with your oncologist. Best wishes to you.
Kind regards, Susan
I don't think everyone would refuse tx. What we would be doing is making an informed decision. It shouldn't be up to them to make that decision for us. If it's listed then someone got that se and someone else 'will' get it and they're not going to be too happy when they found out they didn't get a choice. Or at least I wouldn't. After all when it's all said and done the patient is the one suffering and the doc gets to go home and move on to the next patient. Cynical....but true.
love
jan0 -
Trish, there may be otherIrishwhispers said:Side Effects
Ohilly hugs to you...
I have to tell you that I was afraid to post.. how the Arimidex had effected me.. I didnt want to scare anyone... but to let you know, I am now NOT taking any AFTER TREATMENT drugs...
I do know that some women have had no problems with it what so ever.. I on the other hand... ha!!
The insomnia, hotflashes, weight gain, mood swings, were tough, but the damage its caused to my joints, bones, and muscles, are still present & I have been off the medication since the last week in February.
My Onc took me off it for 2 weeks to see how I felt.. & I was to go back and we would decide the next course of action.
Well, not feeling any better after those 2 weeks he said I had 3 choices... #1) was there were 2 different medications but in the same family as the Arimidex... with the same side effects.. as you know... #2) was take Tamoxifin... my statement to him was..."Tell me the worse case side effects of Tamoxifin" He said .. Blood Clots... and I said ...choice #3 ??? He said to take nothing... well... after having such a rough go of this whole ordeal... I had already had blood clots from when they put the port in ... having to give myself injections in the stomache, and take Warfin... I really didnt have to put much thought into my decision.. at that point... but my response to him was this..." If I had to fight this Monster again , and I was on aromotase inhibitors, I wouldnt have what it takes to win the battle. So my choice is made for me .. I will risk it!! ..because the way I felt on the Arimidex was not living.. I am 53, and I felt as if I was 153... I know this is an individual choice for all of us...
and as I said way up ^ there... some have no side effects at all... I was just one who did.
My hopes and prayers to you, Ohilly.
Trish
Trish, there may be other options for you. Raloxifene is used for osteoporosis but is a SERM like Tamoxifen. Here is what they said about it. There is still a risk of thromboembolic events but it is significantly less than tamoxifen. Another drug that comes to mind is Faslodex but I don't have any handy info on that one.
Raloxifene "Preferable" to Tamoxifen for Breast Cancer Prevention CME
News Author: Zosia Chustecka
CME Author: Désirée Lie, MD, MSEd
Disclosures
Release Date: June 7, 2006; Valid for credit through June 7, 2007
June 7, 2006 — In the largest breast cancer prevention trial ever conducted, raloxifene (Evista) and tamoxifen (Novaldex) were equally effective at preventing invasive breast cancer in women at high risk for the disease, but raloxifene had a more favorable adverse risk profile. Results from the Study of Tamoxifen and Raloxifene (STAR) were presented at the American Society of Clinical Oncology (ASCO) 2006 Annual Meeting and in the June 5 Early Release Article issue of JAMA.
The 5-year study was conducted by the National Surgical Adjuvant Breast and Bowel Project (NSABP), and results were presented at the ASCO meeting by D. Lawrence Wickerman, MD, associate chairman of the NSABP. The trial, conducted on 19,747 postmenopausal women who were at increased risk for breast cancer, compared 20 mg of tamoxifen with 60 mg of raloxifene once daily.
After a median follow-up of 4 years, there were a similar number of invasive breast cancer cases in both groups (167 with raloxifene vs 163 with tamoxifen). Both drugs reduced the relative risk for breast cancer by about 50% in this patient population.
The tamoxifen group had fewer cases of noninvasive breast cancer cases than the raloxifene group (57 vs 81), but more cases of uterine cancer (36 vs 23). Other adverse effects were similar in the 2 groups, except for thromboembolic events, which occurred significantly less often in the raloxifene vs tamoxifen group (100 vs 141 events).
"Raloxifene appears on balance to be preferable to tamoxifen," said James Ingle, MD, from the Mayo Clinic in Madison, Wisc, discussant for this presentation at ASCO. Raloxifene had a more favorable risk profile, and as it is already approved for use in postmenopausal osteoporosis, it also has data showing a reduction in fractures from other studies, Dr. Ingle commented.
"Although media coverage of the early release of data from the STAR trial suggest a clear 'winner' in raloxifene, the data from clinical end points and patient-reported symptoms suggest a less clear conclusion," according to William J. Gradishar, MD, from Northwestern University Feinberg School of Medicine and Robert H. Lurie, MD, from the Comprehensive Care Center of Northwestern University, Chicago, Ill, in an accompanying JAMA editorial.
But while raloxifene may not be superior, it may be more acceptable, as it is already widely used for postmenopausal osteoporosis. Although tamoxifen is approved for use in breast cancer prevention, it is not widely used, because the clinicians who would prescribe it are nononcologists who are not familiar with the drug, the editorial points out. But the new data "still may not be enough to convince primary care physicians to be more aggressive than they have been to date in breast cancer chemoprevention," Gradishar and colleagues add.
"We urgently need new tools to reduce the risks of cancer," said Robert Ozols, MD, PhD, senior vice-president of the medical sciences division at Fox Chase Cancer center in Philadelphia, Pa. At an ASCO press briefing that Dr. Ozols moderated, he said the STAR findings provide important information to help women and clinicians consider the benefits and adverse effects associated with each option.
Some authors of the STAR trial have disclosed serving on the speaker's bureau for, receiving honorarium from, and consulting for AstraZenca, the maker of tamoxifen, and Eli Lilly, the maker of raloxifene. Dr. Cronin disclosed serving on the Adherence Advisory Board for AstraZenca. The editorialists have disclosed no relevant financial relationships.
ASCO 42nd Annual Meeting: Abstract LBA5. Presented June 5, 2006.
JAMA. Posted online June 5, 2006.
Clinical Context
Tamoxifen is a selective estrogen modulator that has been used for treating early and advanced breast cancer for more than 30 years. Raloxifene is a selective estrogen modulator used for the treatment of osteoporosis and, according to Vogel and colleagues in the STAR trial, has demonstrated efficacy in preventing invasive estrogen receptor-positive but not estrogen receptor-negative breast cancer in postmenopausal women. More than 500,000 women are currently taking raloxifene in the United States to prevent osteoporosis, whereas tamoxifen is not broadly used for breast cancer chemoprophylaxis because of concerns about thromboembolism and toxic effects.
The current study by Vogel and colleagues is a prospective, double-blind randomized trial in postmenopausal women at higher risk for breast cancer, conducted at 200 North American centers, to compare the efficacy of tamoxifen vs raloxifene against invasive breast cancer.
Study Highlights0 -
Amazing....phoenixrising said:Trish, there may be other
Trish, there may be other options for you. Raloxifene is used for osteoporosis but is a SERM like Tamoxifen. Here is what they said about it. There is still a risk of thromboembolic events but it is significantly less than tamoxifen. Another drug that comes to mind is Faslodex but I don't have any handy info on that one.
Raloxifene "Preferable" to Tamoxifen for Breast Cancer Prevention CME
News Author: Zosia Chustecka
CME Author: Désirée Lie, MD, MSEd
Disclosures
Release Date: June 7, 2006; Valid for credit through June 7, 2007
June 7, 2006 — In the largest breast cancer prevention trial ever conducted, raloxifene (Evista) and tamoxifen (Novaldex) were equally effective at preventing invasive breast cancer in women at high risk for the disease, but raloxifene had a more favorable adverse risk profile. Results from the Study of Tamoxifen and Raloxifene (STAR) were presented at the American Society of Clinical Oncology (ASCO) 2006 Annual Meeting and in the June 5 Early Release Article issue of JAMA.
The 5-year study was conducted by the National Surgical Adjuvant Breast and Bowel Project (NSABP), and results were presented at the ASCO meeting by D. Lawrence Wickerman, MD, associate chairman of the NSABP. The trial, conducted on 19,747 postmenopausal women who were at increased risk for breast cancer, compared 20 mg of tamoxifen with 60 mg of raloxifene once daily.
After a median follow-up of 4 years, there were a similar number of invasive breast cancer cases in both groups (167 with raloxifene vs 163 with tamoxifen). Both drugs reduced the relative risk for breast cancer by about 50% in this patient population.
The tamoxifen group had fewer cases of noninvasive breast cancer cases than the raloxifene group (57 vs 81), but more cases of uterine cancer (36 vs 23). Other adverse effects were similar in the 2 groups, except for thromboembolic events, which occurred significantly less often in the raloxifene vs tamoxifen group (100 vs 141 events).
"Raloxifene appears on balance to be preferable to tamoxifen," said James Ingle, MD, from the Mayo Clinic in Madison, Wisc, discussant for this presentation at ASCO. Raloxifene had a more favorable risk profile, and as it is already approved for use in postmenopausal osteoporosis, it also has data showing a reduction in fractures from other studies, Dr. Ingle commented.
"Although media coverage of the early release of data from the STAR trial suggest a clear 'winner' in raloxifene, the data from clinical end points and patient-reported symptoms suggest a less clear conclusion," according to William J. Gradishar, MD, from Northwestern University Feinberg School of Medicine and Robert H. Lurie, MD, from the Comprehensive Care Center of Northwestern University, Chicago, Ill, in an accompanying JAMA editorial.
But while raloxifene may not be superior, it may be more acceptable, as it is already widely used for postmenopausal osteoporosis. Although tamoxifen is approved for use in breast cancer prevention, it is not widely used, because the clinicians who would prescribe it are nononcologists who are not familiar with the drug, the editorial points out. But the new data "still may not be enough to convince primary care physicians to be more aggressive than they have been to date in breast cancer chemoprevention," Gradishar and colleagues add.
"We urgently need new tools to reduce the risks of cancer," said Robert Ozols, MD, PhD, senior vice-president of the medical sciences division at Fox Chase Cancer center in Philadelphia, Pa. At an ASCO press briefing that Dr. Ozols moderated, he said the STAR findings provide important information to help women and clinicians consider the benefits and adverse effects associated with each option.
Some authors of the STAR trial have disclosed serving on the speaker's bureau for, receiving honorarium from, and consulting for AstraZenca, the maker of tamoxifen, and Eli Lilly, the maker of raloxifene. Dr. Cronin disclosed serving on the Adherence Advisory Board for AstraZenca. The editorialists have disclosed no relevant financial relationships.
ASCO 42nd Annual Meeting: Abstract LBA5. Presented June 5, 2006.
JAMA. Posted online June 5, 2006.
Clinical Context
Tamoxifen is a selective estrogen modulator that has been used for treating early and advanced breast cancer for more than 30 years. Raloxifene is a selective estrogen modulator used for the treatment of osteoporosis and, according to Vogel and colleagues in the STAR trial, has demonstrated efficacy in preventing invasive estrogen receptor-positive but not estrogen receptor-negative breast cancer in postmenopausal women. More than 500,000 women are currently taking raloxifene in the United States to prevent osteoporosis, whereas tamoxifen is not broadly used for breast cancer chemoprophylaxis because of concerns about thromboembolism and toxic effects.
The current study by Vogel and colleagues is a prospective, double-blind randomized trial in postmenopausal women at higher risk for breast cancer, conducted at 200 North American centers, to compare the efficacy of tamoxifen vs raloxifene against invasive breast cancer.
Study Highlights
Just amazing!!!!!!!!
Thanks so much Jan!!!! I have some research to do here!!!!!
Hugs
~T~0 -
I agree Jan...phoenixrising said:I don't think everyone would
I don't think everyone would refuse tx. What we would be doing is making an informed decision. It shouldn't be up to them to make that decision for us. If it's listed then someone got that se and someone else 'will' get it and they're not going to be too happy when they found out they didn't get a choice. Or at least I wouldn't. After all when it's all said and done the patient is the one suffering and the doc gets to go home and move on to the next patient. Cynical....but true.
love
jan
..and my Onc's practice was to inform his patients of all the side effects.. of all the meds they were prescribing.
I think as universal as this disease is... its effects w/ *& w/o the meds we are expected to take varies, and we do all have to be our own advocates, first and foremost!
love
~T~0 -
Anastrozole Side Effects and AI's
I really am struggling with the anastrozole side effects. I have had EVERY common side effect except for joint and bone pain...my mother who is just finishing 5 years of anastrozole had zero side effects....so our experiences couldn't be more different. My breast cancer was 12 mm x 7 mm x 4 mm, lumpectomy followed by 5 days of twice a day brachytherapy radiation. HR+ Her2- Ki67 was 34% (High Proliferation) and I thought, erroniously I guess, that the surgery and radiation would be the hard part. I now find myself in AI misery and although I work for a healthcare non profit and write research grants, I also was not told about the side effects of AI's by my MD's, only by the pharmacist packaging and online research which simply proved I'm having almost every side effect (even two serious side effects i.e. chest pain and tightening). I'm certain this next week my Onco will put me on Femara or Aromasin...which state they have the same side effects as anastrazole and the worst side effect for me was being thrown into depression.
I'm really surprised as I've never been depressed, I am a very upbeat person and my personality changed overnight and not in a good way. If anyone can relate or has any assistance or feedback it would be greatly appreciated.
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You are not the only one .. keeps me up at night , hot flashes ,achey legs at night and lightheadedness , and a very short fuse and low mood , I’ve been in it 3 months going to Doc next week ! Also having cramps or pain in the arch of my ribs …God bless and help us all
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