Arimidex - Coping with the SE's
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Hi Grammie,
I am sorry that your headaches are so awful! I am six months in to arimidex and things are running more smoothly but had really rough start so hopefully, your onc will have some ideas about how to cope. In the meantime, Iago is right - a good onc will test to rule out the worst case scenario. I had a similar situation with a swollen jaw where the first scan let to another scan - welcome to "scanxiety" so please try to remember, that your doctor is just being throrough.
In addition, it is quite common to take a break from Arimidex if the side effects are significant. I took 2 weeks off to see if I could settle my system and it defintiely helped. My onc, who works at a major cancer center in boston, said that 55% of folks who take a break, feel better when they start back up. He also said 55% feel better if they switch AIs so that is also something for you to consider if the headaches persist.
I hope that your scans pass uneventfully and that your headaches improve! Best, Beau
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Update: Called the oncologist today and he left me a msg that he didn't think the arimidex would cause headaches and to be sure - get off it for one week and call him back.. as far as the CT scan- he said the other doc was probably trying to cover his butt...he doesn't think I need a CT scan for a stage 1b tumor - it wouldn't metastisize... So hear I sit with this stupid headache, off arimidex for one week... I don't want to get off the stuff, I just wanted the headache to go away!!!0
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Gma,
I found this on the Mayo Clinic website about side effects from anastrazole (arimidex)
http://www.mayoclinic.com/health/drug-information/DR600131/DSECTION=side-effects
and the first few things listed are blurry vision and headaches. Maybe you should print it and take it to your onc!
I hope you get used to it soon. There are also other options if you cannot tolerate it. Hugs!
Shelley
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Shelley thank you for that site...printed it off if I have any other ignorant docs... I am surprised that my ONC said that though - I think he just wants me not to think about side effects and take whatever he says without complaints??? I (sp edit) hear how good this doc is but everytime I leave a msg for him - I get a message back through the receptionist...never him.. The only time I talk to or see him is for a $300/$400 appt... Is that what happens when they are the top Onc in the area??? Sorry, just venting again..
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GmaFoley I go through my oncs NP. My onc is very busy and if needed she will talk with her patients but most of the time it's through the NP. It does work. The NP does discuss with my onc.0
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Hi GmFoley,
If your headache doesnt go away soon, you can always call your primary too. I don't know how your weather has been, but up north the heat and humidity are causing many people severe headaches from sinus pressure etc.
As related to your Onco, I am surprised he said a b1 tumor couldn't metastasize, your signature states node involvement and when we have node involvement or vascular you can always get Mets. There are unfortunately people with DCIS who have mets. Odd he would say that and I would question him. His job is to make sure you don't get cancer again so he should take any complaint you have seriously especially if normal over the counter meds don't help.
I wish you luck and hope your headache goes away.
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GMA
I just renewed my prescription for Arimidex ( generic) and what shelley said is listed on the SE's included with my meds too. Darn, the lsit is so long, I never noticed those.
I hope you're feeling better - this is such a frightening disease, and those "added" issues are really intolerable. I understand how you feel, and really hope it all resolves itself soon. No sense saying, "don't worry" cuz I know we all do - but hope you feel better very soon.
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Gma, A couple of years ago I had horrible headaches like you describe, I remember driving to work with tears just streaming down my face. Went through all the scans and tests, saw a neurologist, turns out it was tension headaches, they are always in the back. I left my job and the headaches left me! (such a horrible boss there!) Just something more to think about, in case there is any special new tension right now.
I hope you feel better soon!
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They should be trying to figure out/ruling in or out what normal things (like sinus infection) could be causing your headaches too. Are they giving you anything to help or just letting you sit there and suffer? GRRRRR!!!
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GmaFoley: I was very disappointed to get headaches after starting anastrazole - they weren't as bad as yours sound, but they weren't fun. I was pretty discouraged to think of having them for 5 years, but it's one of the symptoms that cropped up right away and tapered off after about a month. I hope that happens for you as well!!!0
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Lago: It seems I'm not talking to his NP though its his receptionist…but I guess she relays whatever he writes down… What happens is we start playing phone tag if I have a question then she says I will have to get back to you on that…..
Bevin and Ruthbru: I actually talked to the primary today too and she said I needed to talk to my ONC at this point because she felt it was the Arimidex SE and He needed to make the call… The headache is in the BACK of my head like someone hit me with a bat… I have allergies but the sinuses are clear - they checked that in urgent care yesterday..The Stage 1b is because of a micromatastes in one SN and it was encapsulated so it was a toss up whether it counted as a positive node or not..
Sunflowers: thanks for the kind words…
37antiques: I will keep this in mind - as the PA last week explained though, the muscle tension could be part of the muscle issue with the arimidex and is thought to hit your weakest point. (the PA actually has two sisters on the med) The 3rd day into the arimidex, I woke up with a clenched jaw and could barely open my mouth - I had a tmj splint in but this was worse than I have ever been. so I just don't know.One step at a time - off the arimidex one week to see if any of the symptoms subside…and Ruth they are afraid to give me anything else with my drug sensitivities.. I am on gabapentin for nerve pain - at least the boob doesn't hurt :-) I was told to take the oxycodone too but it doesn't seem to relieve the headache, it just makes me not care….
All you ladies are so helpful and caring…thank you for your support…I am still at a loss for what to do or what hissy fit to throw..just want the headache, that hasn't eased yet, to go away..0 -
Tina: what do you think about me cutting the pill in half and starting slower getting on it??? Was thinking after my week off..if the headache does go away and doc wants me to try it again, to ask him about taking half for a week or two before taking a whole one?
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Hi Lowrider and all, some I know some I don't . There is a forum Hotflashes that dovetails to this thread. We have Identified several things common, may be a bit different to us all, but common enough. If you go there please read from page one as there are many suggestions. I can see that many here have something to offer there.
http://community.breastcancer.org/forum/78/topic/770796?page=14#idx_404
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Are we having fun yet?
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GMA
can you email the doctors? Do they use Blackberry?
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A grand new adventure
NOT! I can't take aspirin or anti inflammatory products - ulcer issues - the RO told me I had to take aleve and gave me prilosec to go with it... I got off the aleve when I couldn't swallow a soda because it burned so bad... so tylenol or major pain meds is all i have - no inbetween .... i still have a headache this morning but it seems to be easing off... hopefully we can try this again with a slow process if not I'm not sure what he will make me try next... 0 -
Sunflowers--some docs have secure e-mail systems you can use to communicate with them, but not all. Call your doc's office and ask.
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Hi....glad to be able to share and get some advice from you all. I was on Femara for a year. I felt so off on this med and told the onc that I would not be taking it anymore. I felt like a veil had been covering my brain....feeling brain fog, bitchiness, and just not my self. He put me on Arimidex and I have been on it for about 4 weeks. I have such intense muscle discomfort in my body. My hips, buttocks, elbows, shoulders......and feel like I have been hit with a bat. Tylenol does very little........ibuprophen, although very harsh on my stomach helps just a wee bit. Always worrying about pain and what it could be.......but believe it could be this medication. I am afraid not to take it yet I cannot see living like this....in this much discomfort. I exercise in the pool and it does help some but I guess I have to wonder....it is the pill or just me?
I am miserable..........the discomfort feels like I have wrenched muscles after vigorously exercising..........am I normal?
Thanks in advance for your help.
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Sunflowers - Nope can't email him they keep that private from patients -
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This was on the breastcancer.org home page today. It's on tamoxifen, but results for the Als should be even better!
Tamoxifen Legacy Lasts Long Term
Research has confirmed that tamoxifen (brand name: Nolvadex) reduces the risk of breast cancer coming back (recurrence) during the standard 5 years of treatment and that recurrence risk stays lower during the next 5 years AFTER tamoxifen treatment ends.
The results were published online July 29, 2011 in the journal Lancet.
After surgery and other treatments (chemotherapy, radiation therapy) women diagnosed with early-stage, hormone-receptor-positive breast cancer usually take 5 years of a hormonal therapy medicine to lower recurrence risk. When hormonal therapy is used this way it's called adjuvant hormonal therapy.
Of the adjuvant hormonal therapy choices, tamoxifen has been approved the longest and is approved to treat both premenopausal and postmenopausal women. The other main type of hormonal therapy medicines are the aromatase inhibitors, which are approved to treat only postmenopausal women.
This study analyzed the long-term outcomes of more than 21,000 premenopausal and postmenopausal women in 20 studies comparing tamoxifen to placebo (sugar pill) to treat breast cancer. Nearly 10,650 of the women were diagnosed with hormone-receptor-positive breast cancer, the type of breast cancer tamoxifen is expected to treat.
A study that combines and analyzes the results of many studies is called a meta-analysis. The Early Breast Cancer Trialists' Collaborative Group (EBCTCG) did this meta-analysis.
Results showed that in women diagnosed with hormone-receptor-positive breast cancer, recurrence risk was 30% lower overall over 15 years in women who got tamoxifen for 5 years compared to women who got placebo for 5 years:
- Recurrence risk was 47% lower during years 1-4 of treatment in women who got tamoxifen compared to women who got placebo.
- Recurrence risk was 32% lower during the last year of treatment and the first 4 years after treatment stopped (years 5-9) in women who got tamoxifen compared to women who got placebo.
These very positive results on the long-term benefits of adjuvant tamoxifen come from studies that began more than 15 years ago.
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NativeMainer - I was suggesting it, cuz that's how I communicated with my oncologists while I was having chemotherapy.
The hospital where I had the surgery ( I'd NEVER let a friend go to this hospital) wouldn't let a patient gte past the receptionist. Grim. Then, MAYBE, you'd get a call back with a "message" from the surgeon via the receptionist - awful. Receptionist was DUMB enough to tell me she had to "triage" the calls. I suggested the hospital probably didn't want her using that expression. Needless to say, I did NOT go to that hospital for my chemotherapy
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ruthbru, It is so great to see such good results from taking Tamoxafin. You are right the results for the AL's should be just as good if not better.
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Ok ladies...My hubby and I walked the ladies route around the duck pond (2.7miles) today - keeping up with hubby's fast pace was rough... I am glad I walk with my 2 friends
- As I was walking today (on my birthday) my sister called to wish my happy birthday and then she gave me some rough news... she also has breast cancer... She was very scared and upset and I talked her through all her questions and when she got off the phone seemed ready to talk to her cancer team tomorrow... I wish I was closer but we are 900 miles away and I have no money to go see her... What a birthday...But for those who think headaches aren't part of arimidex side effects... I have been off for 2 days and my headache is easing up tonight - I was able to actually go out with hubby and have birthday dinner
... I am going to try again in a week and see if onc would let me get on it slower next time..hoping that will help... oh yes, forgot, my Vitamin D results came back low at 29 - PA sent me a note to start taking 5000 IUs a day... she wants my level above 50.. 0 -
It's been a month of Arimidex for me now. It's getting better. More stiffness but mostly when waking up in the morning. Still have some pains that move around- have had low back- between shoulders- knee- and hip pain at times. None stays in one place long. Had hip pain after going to a concert the other night-- stood up for about 1 1/2 hours- so the next morning was not fun.
Taking multivitamin & vitamin d too. I am walking some and hoping to increase my walking more in the coming weeks.
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So sorry to hear about your sister, Esther. You will be a great source of strength and wisdom for her.
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Yes Esther- sorry about your sister too. Cancer is such a rough disease for us, those around us, and others too. Thinking of you & her.
On the research- I am very estrogen positive. Regardless of the studies- I personally think anything that decreases estrogen will help me. Nothing is guaranteed in this I know. I do feel anything to decrease or block estrogen in my case is a must for me. I'd try any other meds my MO recommended if it ended up arimidex was too rough. I think after being on it a month I can deal w/ the SE. Don't like them, have pain at times, but feel it's a must.
Always a very personal choice for us all.
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@Susan: this is the Arimidex thread, not the Tamoxifen thread. Perhaps your post is better served in the Alternative thread, actually.
@ruth: thanks for the positive news post! i am on Arimidex, but it's also good to see this about Tamox, since my onc already warned me he wants to put me on T after 5 years on an AI.
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Not trying to hijack, but SusanK8 is spreading this blog full of errors all over the site and I feel compelled to point out its inaccuracies: Just ignore if you don't care about the tamoxifen info above!
SusanK8, I'm reposting my response from another thread. The blog you are are cutting and pasting has some serious errors in it:
The blogger has missed one rather important little phrase from the data: "per woman-year." The tiny percentages s/he is reporting are actually PER YEAR, (not covering the entire 4 or 5 year time period as s/he interprets them to be.)
Unfortunately, they add up fast! One only needs to glance at (just glance, not parse) the actual study to see that many, many, many more women then that have recurrences. For the very group that SusanK8, and the "accidental amazon" refer to...
"the women with ER+ cancers, with and without PR+ receptivity, including 44% who had node positive breast cancer, 56% who did not, and 51% who received chemotherapy."
46 percent of those who did NOT take tamoxifen had a recurrence of breast cancer within 15 years, compared with 33 percent who DID take tamoxifen. In that same group, 33 percent of those who did NOT take tamoxifen died of breast cancer within 15 years, compared to 24 percent who DID take tamoxifen.
So there is the absolute benefit of the drug, for that particular group. Out of every 100 women, 9 lives were saved (or 9 percent.)
I only wish that 90 percent of ER+ breast cancer patients would never have a recurrence even without tamoxifen (actually I wish 100 percent of all people with cancer never would.) The reality is not so pretty.
But, please, don't believe me. Go take a look at the study yourself.
accidentalamazon.com/LongtermTamoxifen_Lancet7-11
Just take a look at the charts in this study. Those are the absolute risk reductions...or as I like to think of them, the actual lives saved.
Even among the "good prognosis" group of node-negative, ER positive women...35 percent (35 percent!) had a recurrence of breast cancer within 15 years of diagnosis if they didn't take tamoxifen. If they did take it, only 19 percent had a recurrence (and true, some of those are locoregional or in the contralateral breast, but some are distant metastases).
Anyway, when it comes to tamoxifen, it is NOT small numbers we are talking about, or splitting hairs. The drug is really a literal lifesaver for many women with ER+ breast cancer (who are willing and able to take it.)
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Thank you Beeb for your post. I thank GOD every day that there is this important weapon in my fight against recurrence!!!!
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