For Arimidex (Anastrozole) users, new, past, and ongoing

Sloan15

I was trying to say it's worth the cost to see a dermatologist.

DenvMom

I have a great dermatologist but I know he will give me doxycycline which I have.  I will call my Oncologist and see if it is ok to take the doxy.  I don't want to mess anything up.  Thanks for the reply.   

cajunqueen15

I take low dose Effexor for hot flashes.

Kawigirl1260

Hello All! I'm relatively new here. Glad to find a thread for anastrozole users!

I started it in February. Stopped it 3 weeks ago in prep for my smx last week. Right at first, I had horrible neck muscle spasms. But deep massages with Deep Blue essential oil really helped that.

Lately, I've mainly noticed joint aches, increased hot flashes, and some mild cognitive issues - CRSS (Can't Remember S**T Syndrome). I swear, I will be told some information or think "I need to fill-in-the-blank" and within 2 minutes, I will have forgotten it. I've always had that problem, but not near this bad. I lose words more often than normal. I have to really concentrate during conversations. And I very often times will use the wrong word for something and have no clue until I get that "what are you talking about" look. It's been better while I've been off it. Not looking forward to that coming back.

At this point in time, I think I can deal with the SEs so far.

PontiacPeggy

KawiGirl, Welcome! I'll be in Spokane permanently in a week and a half! I have a friend who also had memory problems on anastrozole. It's hard for me to tell if it has caused me problems or if I'm just overwhelmed with everything that has happened in the 6 years (DH had a heart attack and Parkinson's; I cared for him at home for 4 years, 1 year nursing home and he died this past September; plus throw in BC). I've been on it now for about 20 months with no problems.

I am curious why you had a Mx. Your profile wouldn't seem to indicate it. Did you have radiation? How are you doing?

Hope to meet you in person!

HUGS!

Suz-Q

Does anyone have fatigue with Arimidex? I've been on it since Jan. 21 and I have been doing well. I have a small amount of joint pain, but it is manageable, and some vaginal dryness. The fatigue is bothering me more as time passes. My MO really brushed me off when I told her about it. She dismissed it and said it wasn't a side effect. I read that it is. I exercise, maintain a healthy weight, and eat a good diet. I can't figure out what else it could be

PontiacPeggy

Suz-Q, maybe it's depression. Quite often that accompanies BC and very understandable. Talk with your primary doc about it. One of the anti-depressants is also used to help with joint pain from Arimidex. I forget which one but I know it is being studied at U-M. I'll find out for you.

HUGS!

Golden01

I don't know if it is fatigue (I have wondered about depression) but I just need to sleep more. I do fine during the day. But if I sit down on the sofa in the evening, I'm out (even sleep sitting up!). Will also sometimes sleep through my alarm and wake 1 1/2 to 2 hours later. On Tamoxifen, I didn't sleep well, was often up in the night. Now I sleep, really-really well. Mostly, I just pay attention, and if I feel I need to sleep (or fall asleep whether I think I need more sleep or not), I just go with it. Usually, I get back to a more regular schedule after a few days. I have paid careful attention to my moods and don't feel it is depression but am always on guard for that too.

Sloan15

kawigirl - I have to admit that it's harder for me to find the right word these days. I, too, wonder if it's the meds. At first I thought it was the chemo, but you didn't have chemo. I would say age, but it started when I started the meds. I'm 51. Have you read anything on this?

chef127

Hello Ladies,

Fatigue has got to be the worst of the side effects of menopause or depression or BC or the AI drugs. They all factor in. My neuro rx'ed Adderall, for fatigue, unrelated to BC or HT. Many women take ritalin. It works really well but it is basically SPEED and addictive IF abused. Sleep never helps even If I get 12 hours. I take 15mg when needed in the am but to avoid addiction I will not take it everyday. If I can bear the fatigue, when I don't have important work to do, I avoid it. Sometimes anti depressants will help w/ fatigue but if you take the AI's your choice of anti dep is limited.

I am coming up on my 5 years since dx soon. I elected not to take the HT. I have recently started testosterone & arimidex tx and have a question...I have not had recur in the past five years so do the last five years without HT count in the 10 years of HT if I elect to continue the T&A tx or decide to start arimidex on its own? In other words, did I dodge the bullet for 5 years?

Thank You

Maureen

PontiacPeggy

Suz-Q, the anti-depressant being studied is Cymbalta. It apparently plays nice with Arimidex and helps everything else. The study's primary thrust is easing joint pain. The fact that it's an anti-depressant is a bonus.

Maureen, that's a question best answered by your MO. I wouldn't hazard an opinion.

HUGS!!

chef127

I did ask my MO and the logical answer I got was "ER+ hazard for recurance continues for the next 5, 10, 15 years. In other words 'forevermore'. ugh.

PontiacPeggy

Chef127, so you have had no hormone therapy for the past 5 years? And no chemo? That seems unusual. My thinking is that I will do whatever it takes to keep BC away and if it means AIs forever, so be it. But each of us is different.

HUGS!

Sly66

Sly66

I've been taking Anastrozole for one month now. The side effects are just now surfacing. I cannot take a deep breath without horrible pains in my ribs and back. This is worse in the morning when I waken,. Does anyone else experience this? Does it go away?

Smurfette26

I'm suffering from fatigue too. I'm asleep on the lounge by 8pm every night. I don't nap during the day though.

Have found my concentration and memory are poor also. Thought it was from the chemo but 5 months out and I'm still "vague". I often have trouble coming up with the word I'm looking for.

Sly66 I didn't have pain in my ribs and back but after 3 months the muscle and joint pain become unbearable. My Onc had me take a break for a couple of weeks then I changed from generic Anastrozole to brand name Arimidex. The improvement was astounding. It is often the fillers that cause the side effects so if it gets too much a brand change might help.

chef127

NO chemo for me. It is proof positive, to me, that many of us do not need chemo but no one knows who we are. IF the MO gave me better odds, say 75% chance of a cure I would have endured the tx, but chemo being insurance only was not good enough for me to take the chance of the casualties of the chemo drugs. Is there cancer floating around in my body just waiting for an opportunity to take me out? Maybe, maybe not. 50-50. better odds than the MO gave me.

As far as the HT goes, I have a bottle of arimidex, femera, and tamoxifen, sitting in my cabinet unused. Just could not get the courage to consume any of them. Not enough personal hormonal info except "your estrogen is <10 so its an AI for you......period. Then when I was dx'ed with osteoperosis, tamoxifin. I don't think our endo system is that simple.

I am currently on arimidex & Testosterone only because the hormone dr would NOT treat me with the testosterone alone b/c I had BC. BC was treated with T 50 years ago but that tx was abandoned. T becomes E2 so, not good, but with the arimidex that transition does not happen. The T should mitigate all AI and menopausal symptoms.

Here's Hoping.

Maureen

lago

When I was on anastrozole (3) years it did not make my Rosacea worse. granted mine was never that bad.

Molly50

my word recall on Anastrozole was really poor. It's slightly better now on exemestane. My head was so fuzzy on Anastrozole that I was convinced that I had Alzheimers.

dtad

chef127...I would say yes! IMO its the number of years from diagnosis. However you will never find an answer because no one cares about those of us that refuse standard care. Congratulations on 5 years NED and doing it your way!

lago

dtad find people who do and start counting. An alternative grass roots "army of women" . We do need this information. I won't do alternative without some real stats. Maybe if there was info I could relay on I may of considered some of these treatments (But at stage IIB, triple positive, large tumor I know in my gut I wouldn't be here today if not for Herceptin)

Puffin2014

Smurfette: according to a conference I attended on chemobrain, it can take up to a year for brain cells to heal after chemo, there is an insulation sheath on the brain neuron that's made up of rapidly growing cells that the chemo attacks. Since the insulation sheath has "chunks" missing, the electrical impulses don't flow smoothly, thus our trouble recalling words, etc. The lecturer said it can take a year for the insulation sheath to recover, and in a few people it never totally does.

StrongEnough

Smurfett,I am 2.5 years post dx and 2 yrs post chemo, and have cognitive deficits confirmed by neuropsych testing. The onc and neuropsychologist don't expect it will improve as long as I am on AIs, and perhaps never, damnit. I am currently on disability and hating it. In other words, chemo can mess with your brain, but so can AIs. I would very much like to have my old brain back.

PontiacPeggy

My DIL had chemo for colon cancer and it messed with her memory too. There are quite a few things that she can't remember and her short term memory is not what it was. She's 45. But she's NED.

HUGS!

chef127

I have MS and my brain is full of those naked neurons.

It's rare for the myelin sheath to rebuild. Omega3 fatty acids help. I'm trying a clinical trial (on my own) that my neurologist suggested, taking mega doses of Biotin. (300mg) yes MGs daily. They are showing some success, stage 3 in the trial.

Maureen

PontiacPeggy

Chef, how long have you been taking that much Biotin? Any SEs or do you notice anything positive?

HUGS!

Moondust

Peggy, biotin is reputed to be good for hair also. I don't know of any actual studies.

chef127

I've been doing the biotin thing for about 3 months. I purchased 3 large bottles of 10mg caps so taking 30 pills of biotin, and all the others is a bit grueling so I have missed some days and sometimes I take 100mg. I do get an occasional headache but that's it. The trial site says it can take upwards of 6 months to see any results. It can also be effective for optic neuritis (optic nerve damage caused by myelin damage) which is one of my biggest problems. Permanent double vision, corrected with prisms in my glasses, nystagmus, one eye always shaking, causing vertigo and balance issues and difficulty focusing on reading........and putting on mascara lol.

It's ONE of the reasons I'm careful and reluctant about ANY meds. Even some of my diabetes drugs. Pancreatic cancer, kidney damage, etc etc etc. I'm damaged enough. Please don't think I'm complaining. I live w/whatever hand I'm dealt and doing quite well. At least I can hope for thicker hair and nails

Maureen

PontiacPeggy

Alice, I'm taking 1000 mcg (1 mg) biotin per day. Thought I'd give it a try for my hair. My grandmother's hair thinned rather like mine is doing so I can't really blame it on Arimidex and my thyroid is fine. Obviously I'm taking a zillion times less than most people. I'll check with my new oncs this summer.

HUGS!

chef127

PontiacPeggy,

My mothers hair drastically thinned as well. Hers started to thin at meno and she died at 72ish with the thinnest braided ponytail and I'm certain I'm just like mom. My three brothers are all bald and my 38yo son is too. beautifully shaved. Ahh, genetics.

PontiacPeggy

Fighter, yeah, genes are terrific - except when they aren't

HUGS!