Arimidex - Coping with the SE's

Firni

Hi all. Thank you for having this thread. I haven't been on BCO for some time. Finished chemo 3years ago. I was on tamoxifen for 3 years. In Feb. Onc switched me to generic arimedix. In mistake short weeks, I'm feeling the pain in my joints,feet, back and hands. So far I only have to take something for pain occasionally at night so I can sleep. Lots and lots of hot flashes. I've been on effexor since my dx in '08.



I do have a couple of questions.



My onc told me the "new standard" for post menopausal women is 3 years tamoxifen and then 2 years on an AI. So it's 5 years total treatment. Initially he told me it would be 5 years of each. I originally started on tamoxifen because the AIs were cost prohibitive for me. Has any one else been told this?



My other question is, since arimedix is a "reversible" drug, what happens when we finish our time

on it? We have nothing blocking estrogen and nothing to stop production of estrogen. Are we just assuming that after 5 years any little cancer cells have starved to death? Or are we getting a 5 year repreve and then just hope for the best?



Sorry my first post on this thread is kind of a Debbie downer type thing. I'll bea little more upbeat next time.

gerrib

Glad that you are feeling better Sueshane.

I'm new to this thread too Firni- don't know if it's ok to just butt in.

Firni- I'm interested in your post about the gold standard for post menopausal women.

I am nearly finished rads and have been given a script for Tamoxifen. I'm just wondering if there was a reason women on this thread decided/ or were advised to take AIs rather than T. I'm looking at the SEs of both and trying to work out which would be less bad for me. Have  a family history of osteoporosis and have thin bones and hate the sounds of all the joint pains, but I would be able to stay on my antidepressant versus Tamoxifen - hot flushes, nausea and insomnia which I already have. I realise this is something I need to discuss with the oncologist but I just want to be informed before I have my appointment. I am 61. I also have high cholesterol controlled by diet. Not on statins.

Thanks for any input 

Gerri 

Snoopsmom

My other question is, since arimedix is a "reversible" drug, what happens when we finish our time
on it? We have nothing blocking estrogen and nothing to stop production of estrogen. Are we just assuming that after 5 years any little cancer cells have starved to death? Or are we getting a 5 year repreve and then just hope for the best?

Firni - That's funny....I was just wondering that same thing today!! I'll be starting Arimidex once I'm done with rads. I'm LONG past menopaus (almost 65) so that was my ROs drug of choice for me. I'll try to remember to ask him that question next time I see him. He said 5 years of that for me...didn't mention Tamoxifen at all, which is actually fine with me because it seems the SEs for the AIs aren't as severe (or rather, as potentially dangerous) as they are with Tamoxifen. 

exbrnxgrl

Joint/muscle pain are with me but not to a debilitating level. I am very active, teacching first grade, but definitely stiffen up when I sit for long periods of time. Went to the movies last week and it was torture! I try to get to the gym at least 5 days a week and have cleaned up an already decent diet. Love my juicer! This is only my fourth month on Arimidex and I hope it gets better,

.

Anonymous

Firni - I dont think there is AS YET a "definitive soc ( standard of care) regarding tamoxifen & the AI's in post menopausal women.  Seems to be evaluated on a "case by case" basis with each woman. That's waht I was told at my last visit in the Fall of 2011 - don't expect much has changed since then.

No trials of whether sequencing of tamoxifen & AI's makes a difference - yet.

ruthbru

faith22; 2-3 ounces of at least 70% cocoa dark chocolate every day can help to reduce blood pressure (seriously...I am not making that up! ).

Anonymous

Thanks SunflowersMA and ruthbru.  Adding cinnamon and prunes to next grocery list.

ruthbru

and chocolate!

beau

Hi Firni, Gerrib, and all,



With respect to the Standard protocol, what my onc told me was that the best "overall survival rates" are with folks who do a mix of Tamoxifen and AI. However, the best "recurrence free" rate is with AI. So every onc probably has there own twist on the data as well as every individual has their own health profile. The key is to try to take something for 5 years. Always remember that it is a pill that you take once a day and you can always stop.

My once said it was up to me. He had a slight preference for me to start with an AI because I am ER +, but PR - and some studies suggest that PR- can be more aggressive and do better with an AI. That said, the reason why the mixed regimen of Tamoxifen plus AI has highest overall survival rate might be because the cumulative toxiticies are less with both drugs .

Of course, all this could be revised based on on going studies that have not yet published results. We could be looking at 10 years if the latest studies show better results. Yuck, is what I say to that.

My biggest concern right now is my elevated cholesterol (110 of HDL, but 216 of the LDL) which I am trying to sort out.



Faith22,

My blood pressure went up when I first started AI as well. I went on Avapro which helped - not sure if you have already tried it. I also found that I had much greater anxiety and blues when I started so that just aggravated my b/p. I ended up on Diazapam, an anti- anxiety med and it did a lot for me over time. About a year in, I cut my Diazapam dose in half and have cut out my b/p med.

I also exercise morer and have modified my diet so that has helped too.

Sunflower, I love cinnamon so I am going to try to have mor of it. Thanks for the tip!

Best to all, Beau

Best to all, Beau

faith22

Ruthbru-I will be trying the chocolate....thanks, something I will actually enjoy

KittyDog

I was checking the Arimidex web site and found that they have a program for buying directly from them.  Thought it might help those who want to take the name brand.

ARIMIDEX Direct is a new program from AstraZeneca that offers patients* the brand ARIMIDEX for $40 per month through the ease of mail order.

No insurance required, or even accepted
No qualification process
No coupon or rebate card needed

 http://www.arimidex.com/arimidex-direct.aspx

Anonymous

Kitty - I still prefer the TEVA generic I get from Costco for $20 a month ;-)))))

Anonymous

Beau - there used to be huge "fights" on some of the threads about "survival rates" -and how relevant thay were in this context -  and I keep thinking to myself, well, I just  want to REDUCE the possibility of dying from bc - would LOVE to go from an overdose of Godiva Chocolate at my 100th birthday party - doing wheelies in the Old Folks Home!

otter

It's funny how different we all are.  I was getting name-brand Arimidex, then switched to a generic anastrozole marketed by "Breckenridge" when Arimidex went off-patent; then switched again by that same pharmacy to anastrozole made by Teva.  (Pharmacies generally look for the lowest-priced drugs, just as we do; and they'll switch suppliers as necessary if all else is equal.)

After a few weeks on the Teva product, I suspected my "Arimidex SE's" were worse than they'd been on the brand-name and on the Breckenridge product.  So, I went shopping, because my drug plan charges me the same $6 co-pay for generics regardless of where I have my prescriptions filled.

I found one pharmacy that stocked the Teva anastrozole but could order from a manufacturer I'd never heard of.  Another pharmacy got their anastrozole from Mylan, so I gave that one a try.  So far, so good... as long as it lasts.  I don't doubt they'll change suppliers if they find one with a better price.

otter

[ETA:  SUNFLOWERS!!!  Tee hee... sounds like a plan!]

exbrnxgrl

OD from Godiva chocolate? I'm with you as long as it's dark. I know we are all different but I firmly believe my commitment to exercise, both aerobic and weight bearing, has really helped with joint pain. I was not an exercise person per se, but I know that I feel much better when I move. I am also lucky that my job is not sedentary.

Caryn

slousha

Hi ladies,

Today passed two years from my last chemo cycle and I would like to send some greetings to girls of this topic, separately to:

Beau, who has given me the first instructions when I was suffering from SE's of Femara and has written so stimulative posts helping me to maintain this healing...

Ruthbru, with her recipes for natural support of our exhausted bodies - raisins in gin are still in my fridge - and I'm eating dried plums even now...

SunflowersM, giving natural suggestions to avoid chemicals and never forget to propose acupuncture...

Patoo, saying immediately to require pain killers from doctors and not let me suffer any more...

Dear smiling Lowrider54, beginning this topic and not being a"hormonal" any more...

And all dear sisters looking for support and comfort on this pages...

After 21 difficult months - engaged with HP, cholesterol, arthritic fingers, not speaking about all sorts of pains etc.-  in January I switched to Aromasin (Exemestane). Pains lessened, but I feel headache, dizziness and sometimes have to battle depression too.

Hold out and best wishes!

Usha

Please overlook my grammatical mistakes!

KittyDog

Okay if you are going to do Godiva I am going to do Lindor Truffles!  

What pharmacy carries the Teva brand?  It made me look...I get my from CVS and it is Mylan.  Which many years ago in my days of working as a pharmacy tech..it was a good generic company.  

Faithroad

Patoo,

Thanks for the tip about cinnamon being good for blood sugar.  That's something I can add!  *smile*

ruthbru

Usha, thank you. And remember; if all else fails, dump the raisins and drink the gin!

otter

KittyDog, so far I like the Mylan version. Mine is from CVS, too.

I was originally getting my anastrozole prescription filled at the pharmacy in our Winn-Dixie store.  That's a grocery chain here in the southern U.S., so I don't know how relevant that is to anywhere else.  They had switched from Breckenridge to Teva last year I think.  The other place that stocked the Teva version was a private, locally owned compounding pharmacy where a family member of mine gets some prescriptions filled.  I don't shop there.  I've never tried calling around to different pharmacies.

I don't suppose Girl Scount Thin Mints count.

otter

mimi1964

Otter I love Girl Scout thin mints too! wish they did count

Anonymous

Thanks slousha.  Hang in there and see if the new SE's become manageable or go away. 

Faith22 and Kittydog, make sure it's  the dark chocolate and  mininum 70% cacao.  It's the dark chocolate that has the benefits; the lesser ones only benfit the hips!

Fearless_One

Does anyone still have any sex drive at all while on this drug?        I am grateful for no other side effects, though.   Of course, it could be from my hyster/ooph, too.    Maybe it will never come back.   But I hope not.   I am only 47.

Gingerbrew

Of course Thin Mints count!!!

ruthbru

Has to be at least 70% cocoa...the darker the better; if it doesn't tell the % on the package, then it is not dark enough.

Thin Mints, however, are very good for the psyche!

LovesChristmas-Barb

Can I ask the purpose of the raisins in the gin?

ruthbru

natural cortisone effect to help combat arthrisis. Buy some gin and white raisins. Pour the gin and raisins into a quart jar & leave in the fridge a couple weeks. Then eat 5 of the raisins every day. Both my mom and aunt were getting bent fingers from arthrisis & both of theirs cleared up using this 'recipe'. I would imagine that it won't work for a severe case, but they both swore by it.

LovesChristmas-Barb

Thank you ruthbru! I'll have to try that!

slousha

Hi  Barb,

My proposal is to take at least 12 raisins a day!

Best

Anonymous

Oooohhh...Lindor truffles, and Thin Mints - this is gonna be a GREAT party - lets try to remember to buy those candles that when you blow them ot, they light up again, so we can all celebrate!

Otter - I'm going be on my FancySchmancyDecoratedwith Spangles Scooter...

I get the TEVA cuz I want something that said " USA" on label - I know, I know, almost all our vitamins come from "overseas" and this is a wee bit neurotic on my part,but I humor myself.

It is 72 outside - in western MA - crazy, deliciously wonderful, but crazy.

Usha - don't worry about grammar - no one I know can spell anything! so glad you have gotten good information - I may be switching to Aromasin in the summer when my 5 years on Arimidex are done, I already take an antidepressant, so can't do tamoxifen.  DO TRY an antidepressant if you feel you may benefit from having one - really, REALLY, REALLY can make such a positive difference.