For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Lisa I have to say I feel less stiff this year than last year because I am exercising everyday. It really does make that much of a difference. I was more scared of taking AIs than anything else in my treatment. I was like 5 YEARS!, OMG I don't think I've done anything except stay married (18+) for 5 years. I have to admit the SE are not as bad as I though. Still looking forward to being off them some day.
As far as if one were to get a recurrence that is triple negative, it can happen. I have read some research that those with mets can change to triple negative. They think the tumor can build a resistance. I there is some study either showing or investigating after a while off the hormone therapy the tumor can go back to being estrogen positive. Granted this is those who have mets and are on these drugs for a very long time with active tumors. It really isn't equal to us that are NED. It's been at least a year if not more since I read that so I don't know what the new studies/results show.
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Hello all and thank you for all this info. Have been hanging out 'across a border' as in the Canadian Connection since dx in Aug 2012. (Shatzi, noticing thinning hair too - I think just the friction of wearing too tight a toque already!)
Due to start Arimidex Dec 6. (ending 16 rads Dec 5). This is all too new for me...was boringly healthy until this year; however, chased for 2 years why I was 'failing' annual mammo screenings until MRI at a breast centre in July found CA. Passed my bone scan, chest xray and abdomen US recently. Still waiting on bone density results.
So, I'm fearing the possibility of se but hoping for the best. With exercise regime that I follow already & a regular diet, any se should be out in the open.
Funny thing is my bathroom cabinet is starting to look like a private pharmacy - for surgery & rads: prepped up with sterile dressings & lotions/potions. In kitchen dumped the soy products, didn't dump either red or white wine, lol. Now have to stock up on claritin and dump the wheat ha ha. A new normal to be sure.
Now making doll clothes for my granddaughters' Christmas gifts and 'pink' things for first greatgranddaughter coming in the new year. Can't have crampy hands!
Looking fwd to 'keying' you often. Thanks again for all the information & company.
cheers
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I was wondering if any of you who are more knowledgeble than I am, can tell me what role does the % + for progesterone play into all this? We only seem to mention the % + for estrogen.
Mena
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They don't really know what role progesterine plays, although I believe your odds are somewhat better if they are both positive.
I think some of the SEs are ones you, yourself, would have eventually with menopause, only sooner, because as you age your estrogen falls off anyway. I am sad to say that even though I am done with my 5 years, I still sleep crummy and wake up hot (and not in a good way
). I was hoping that would go away or get better anyway!Moving, moving, moving diminished the creakiness for me.
edited to say that lago and I were posting at the same time....great minds think alike
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lago - If the side effects I've gotten during the first 3 months are the only ones that affect me for the next five years, I'll be a happy camper!
I have a slight bit more pain and stiffness in my already arthritic fingers, and I had a bout of hair loss a few weeks ago that stopped with the increase in Biotin.
I often wonder if I'm having fewer side effects just because I've been post-menopausal for so long (15 years). And I'm 14 years out from my total hysterectomy.
So my reasoning is that I had such a low level of estrogen anyway, the Anastrozole really didn't make that much of a difference.
When I started menopause, I had hot flashes every 20 minutes, and night sweats every 45 minutes. I was depressed, confused, and gained a ton of weight. Hormone replacement therapy stopped all the menopausal symptoms, but I gave up HRT more than 8 years ago - plenty of time, I think, for the "replaced" estrogen to leave my body.
Anyway, that's my story, and I'm stickin' to it!
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Hi everyone! Hope you had a good weekend.
My hair is coming in, but male pattern is also coming in! Oh, well. I have enough to go topless. I take biotin, maybe it helps. Most of the SEs are small for me, some sleep issues, some hot/ cold flashes. Lots of aches though. But, since I have arthritis and really, really bad knees, I expected that. I take Tramodol and that was before chemo and arimidex. I have only a couple more chemo rehab PT sessions left. Then I am done. As insurance will be out. I am trying to learn as much as I can about getting stronger, hoping fir less pain. But, my knees are bone on bone, and both have no tendons on the outer side. So a cane is my only way to get around. I am only 58. I walk like I am much older. I had a rough time, but given the alternative, I will keep on going. I actually lost about 20 lbs during chemo due to diarrhea, but can't seem lose anymore. Of course, I am finally eating again. But, all the good stuff , like salads, raw veggies, and even cooked ones, affects my gut, I get diarrhea often. I am still on magnesium supplements, cause I can't seem to get it up to the correct amount.
Sorry, didnt mean to rant. Just the way things are. The arimidex isn't my problem. Um, I probably should have said just that and saved us all ten minutes of angst! LOL much love! LOL0 -
Moonflower, your magnesium is down, that's why you're on the supplements? I'm on magnesium oxide for nerve pain is why I asked.
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ruth...Are you going to continue on the Arimidex or are you done for good? So many different thoughts on that!Still eating prunes... forever?
sue...I wish it were because of a toque...would remove that pretty quickly! LOL
lago...I will continue the Al at least another year...perhaps my hair loss was due to my age, but there was no sign of it a year ago...perhaps it would have happened anyway at age 69. A year ago I had thick dark (coloured) hair that was easy to manage, now it's just a wild mess. Will try a new cut and some product which I never have used before. I was always a wash and go gal! Oh how things change. Who ever thought that Arimidex would cause the most angst?
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Did the 5 years of Arimidex and am done, done (I would have been open to longer, but the oncologist said NO). Yes, I will do the prunes, dark chocolate, oatmeal, calcium chews, exericise routine forever, as they give good health benefits on or off anti-hormonals.
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Blessing my SE as far as hot flashes were pretty minimal during chemo. Only warm flashes (never drenched in sweat) followed by cold, between 2-5am during chemo. I went into chemo-pause. Had my last period 2 weeks before chemo. Now my hot flashes are the same time but really based on what I eat. Certain spicy foods like cayenne pepper will give me minor hot flashes at night but even less intense as I had on chemo (some warmth no cold). My sister had terrible hot flashes for 3 years when she went through menopause naturally. Some people are just lucky, others not so much.
schatzi life changes us and our bodies… even if we didn't have cancer treatment. Aging is the alternative to death. I'll take the former.
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lago..I agree that life changes as we age, but perhaps not so abruptly!
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Hi ruthbru -
I'm new to this thread but have been reading it for the last few days since aromatase inhibitors are in my (kind of) distant future (still have to get through chemo, Herceptin and either an ALND or possibly rads).
Anyway, I've started eating oatmeal almost every morning since surgery. I don't even know why but it sounded good and my old standby (protein bar) is loaded with soy protein so I figured it was time to make a change.
Do you eat the oatmeal for the cholesterol effect? I've also read that it can be good during chemo (I didn't know this until a few days ago) and this is something else I found re: oatmeal:
There's a killer living in all of us. Known as a macrophage and produced deep in your bone marrow, it's a white blood cell that roams the body, picking fights with bacteria, viruses, or any other intruders. But it only works if you help it. These killer cells are activated by beta-glucans, a component of fiber foods. The best source? Oats, says David Grotto, R.D., director of nutrition education at the Block Center for Integrative Cancer Care in Evanston, Illinois. So eat your oatmeal. The steel-cut oats, like McCann's Irish Oatmeal, have double the amount found in the rolled, quick-cooking kind.
I've also started eating prunes. A lot of prunes. More prunes than I've ever eaten in my previous 53 years on the planet.
My husband has been buying dark chocolate lately and I've been indulging a bit.
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Hi, Moonflwr912! Sorry to hear about the diarrhea....
Are you taking a probiotic? There was a time a few years back when I was dealing with irritable bowel syndrome, and I started taking the probiotics (cheapest ones I could find) - and I still take them today. That helped me a lot. Also, one side effect of magnesium supplements is diarrhea. I remember talking to someone years ago about taking it to offset possible constipation from taking calcium. But I was warned not to take too much, otherwise I might have the opposite problem.
I'm taking 1200 mg of calcium (both carbonate and citrate) a day, and 250 mg of magnesium oxide a day, along with my probiotics.
Galsal -how much of the magnesium oxide are you taking daily for the nerve pain?
schatzi14 - I'm getting my hair colored and cut today. Haven't had any huge hair loss like the big shed a few weeks ago; maybe the Biotin is helping. I love my new short cut, but I'm soooo reluctant to let it go completely gray just yet!!!
ruthbru - I will forever associate you with prunes!!!
I love them, but let's just say they give me, um, er, "digestive pyrotechnics" and leave it at that!lago - I really feel for the women going through chemopause. At least going through menopause naturally, there isn't such a dramatic, all-out assault on your body at the same time.
LeeA - I LOVE McCanns steel-cut Irish Oatmeal!
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Blessings I really had it so easy. Everyone should go through menopause with the symptom I had from chemo-pause. But I do know several woman that are having such a hard time.
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Hello ladies
I've been reading your posts for a few days as I am likely to start Arimidex in January 2013.
Progesterone seems to be an area that interests reseachers...
Cancer Research UK has reported on a hypothesis that ER negative and PR positive breast cancer (apocrine tumours) is affected by androgen. Seems to suggest it is similar to prostrate cancer. My lab report said I had an apocrine tumour.
A tale of two hormone receptors – could prostate cancer therapy help breast cancer patients?
scienceblog.cancerresearchuk.o...
Interesting.
Best wishes
Alice
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Hi ladies
Sorry, forgot to say that according to http://www.nhs.uk/ipgmedia/national/Breast%20Cancer%20Care/Assets/ArimidexAnastrozoleBreastCancerCare8pages.pdf
Arimidex (Anastrozole) works by stopping the conversion of androgens into oestrogen and so reducing the amount of oestrogen circulating in the body.
It has certainly made me a little more keen to take Arimidex and will discuss this with my oncologist later this month.
Good luck to us all!
Alice
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yes, I eat oatmeal for the cholestroel lowers effect and fiber is also good for colon health (as are prunes....although I eat the prunes for my bones). 1-2 ounces of at least 70% dark chocolate a day (and it just can't be 'dark', has to say the % on the package) can lower blood pressure...which it really did for me.
I don't know if it is good to be known as 'The Prune Lady' or not!
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Blessing - 420mg tablet twice a day. I was also put on Gabapentin at bedtime to help with the nerve pain. So far, it's not much helping. I've an MRI of the neck scheduled for 12/24 and an EMG of the neck/shoulder/arm/hand/fingers on 1/28.
Going to start taking Biotin soon to help allay hair thinning.
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Galsal...I have been taking Gabapentin for 2 years...one in the morning, one at bedtime. I take it for nerve pain caused by 3 herniated discs in my cervical spine...like you, I don't really think it helps but I hesitate to stop taking it in case it gets worse without it. I am going to ask my PCP to maybe increase the dosage.
My hair thinning is getting really bad, so I am going to get Biotin as well even though there is no scientific proof that it helps. Ya gotta try it all I guess!
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Galsal & Schatzi-- I'm going to butt in here on the Gabapentin--if you don't think it's working, it probably isn't. This drug has LOTS of dangerous side effects when it comes to memory and cognitive functioning especially when you begin to up the dosage. Doctors prescribe it and say it safe, but it isn't. As the dosages increase, many people have withdrawal symptoms coming off it. I have never taken it but members of my family have and it has been bad. My husband has been on it the last couple weeks after cervical surgery and I finally got him to stop it after I convinced him to just try the Gabapentin without the pain pills and showed him it had no effect except to make him loopy. Just some thoughts....
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GalSal and Blessings, I do take probiotics, it helps some. I take 4 magnesium pills a day, it was as much as 6 though. I m pretty sure they are 100 mg. 6 was too much as it is worse than prunes. I take cause my magnesium count is low. Hasnt been normal since chemo. I am being weaned off potassium now, taking it only once a day. They want me off if I don't drop too low. Maybe when I am off that they will try To wean me from magnesium. the funniest thing is that high magnesium foods are not good for diarrhea! LOL, um, beans , broccoli, etc. On the other hand I love oatmeal, Scottish style or otherwise.LeeA, I would make a big pot on the stove or overjoyed in a crockpot, and warm up a serving in the microwave when I wanted it. It would last about a week. Then its really fast for breakfast in the morning. Much love.
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Junif...Thanks for your input. I googled Gabapentin and I know it can be dangerous. I take the lowest dosage and for a year was just taking one in the morning. I just started back taking the original dosage of 2 a day (100 mg) because the pain was bad at night. I have a friend that takes 4 a day and if she has pain , takes 2 more. She is 86 and I tried to tell her it's dangerous to do that, but she says she has been doing it for years. I know it is also used as an anti seizure drug. So far I am OK with cognitive functioning. I think LOL. I have tried everything else for pain and although this isn't great, it does usually allow me to sleep where I couldn't at all before. Lesser of the two evils I guess.
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I've given this two months now. The daily headaches are for the birds! Unfortunately, the question looms - is it from the Arimidex or the Lupron? Well only one can be stopped. The hands have gotten horrible, even more so than usual since one these - pain, numbness, etc and now the left one has started too which I don't think has ever happened before. What the heck - one of the SEs is Lymphedema? And insomnia, anxiety, depression? Like I needed help in the negative way! NOT I already take meds for most of this stuff.
Onc appt later this month, I'll definitely be asking to switch.
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For hot flashes: this is going to seem crazy because it is so simple, but when I first started chemo I was pre-menopausal and it threw me immediately into menopause. The hot flashes were horrible and almost non-stop. I went online and found this remedy, and since the first dose, I have not had a single hot flash (it's been over 6 months!) Here it is--2 tsp. apple cider vinigar once a day. I mix it in with juice so I can't taste it. Some of the women on the discussion board where I found this said it has to be the apple cider vinigar with "mother" in it, but I just buy the cheap stuff and it works fine. I hope it works for you, too.
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I have been taking Arimidex for a month now with no side effects I have noticed. I am hoping it stays that way.
For those who have thinning hair, you might try taking silica as it has been clinically proven to help.
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Via Google news--NY Times article stating 10 years tamoxifen has significant improvement in survivor years over 5 years of the drug. It went on to suggest 10 years of anastrozole might be the next expectation. Has anyone heard from their mo or any dr wanting more than 5 years? (here I thought I had one down, four to go!)
Thanks.
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There's a thread called 'San Antonio Breast Cancer Symposium' that is on the Active Topic list right now. Here is one of the quotes:
"For women whose breast cancer was diagnosed after menopause, the picture gets even more complicated......Post-menopausal breast cancer patients could be given the option to take estrogen-blocking drugs for longer, but oncologists might be left in a quandary about which drugs to give and for how long. “Should these patients be given 10 years of treatment with an aromatase inhibitor? Should they have 5 years of an aromatase inhibitor followed by 5 years of tamoxifen? Would more than 10 years of tamoxifen be even better than 10 years? No data exist to support any of these options,” wrote Dr. Trevor Powles, an oncologist at the Cancer Centre London in England, in an editorial that accompanied the study..."
So that is about as clear as mud......
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Thanks for your insight and sources. Wonder which way the research will take us all. (sigh. Never did like mud.) :-)
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