Arimidex - Coping with the SE's
Comments
-
For some reason I thought SAM-E was hormonal
0 -
NANCYB
as everyone has said, WRIST SPLINTS - I wore them for a while 3 months after I started - and they SAVED MY LIFE - literally! Can't emphasize how important they were to me. Most good pharmacies have them, Wal-Mart does too, medical supply places, but more expensive there.
Make sure you get the ones with velcro closings, so you can adjust the tension - do NOT USE the ace bandage/rubber slide on ones..
WE 9 all of us) promise it can really make a difference - definitely worth a try, and also a physical therapist gave me exercises that helped too. Am now in the middle of year 5 on the A Team!
0 -
And I make 10 of us testifying that wrist splints make a HUGE difference! I wear one for a few nights on whichever side is most bothersome at the time and then get weeks of relief.
0 -
I have used wrist splints - I have a daytime pair and a nighttime pair. The nighttime pair I got from the orthpedist. Daytime pair is lower profile. It helps a little but now the tingling goes all the way up my arms and dominant wrist is VERY painful.
So much has gone wrong for me since my DX - I've had major surgery every December since 2008. This year was my gall bladder. Last year was a new ACL, the result of falling down the basement stairs. Before that was enlarged lymph nodes in my chest - DX was sarcoidosis. It's al so exhausting.
0 -
nancyb--I have similar issues. I am now trying hand therapy. I have only had two sessions but I am hopeful. Also capsacian cream on my hands with cotton gloves. It helps with the arthritis part of the pain. I look pretty funny at night with the gloves and the splints.
0 -
I could really use some positive reinforcement to begin taking Armidex. Quite a lot of posts make me very concerned. I just had my bone density scan today. I have the Armidex sitting on my desk but I have not yet taken it. I have an appointment with my radiology oncologist on the 30th and with my oncologist the same. day. I was going to wait until I speak to my onc before I begin. Is there any time limit on starting? I finished chemo on December 9
Thank you for your responses.
Kathy
0 -
Chatsworthgirl, for what it's worth, I'd recommend you go ahead and start. Chances are you won't even have any SE's, or perhaps just simple ones. All of my Docs recommended starting right away because if the job od the med is to keep any "dormant" bad cells from turning into more cancer then the sooner you start depriving them of food, the better off you are. If you start now then when you meet with your docs you can discuss any SE's you might be feeling.
0 -
Thank you everyone for sharing your experiences of Arimidex. My hot flushes are bearable, but increased recently when I hurt my back moving the dustbin. Long story... but my osteopath told me that a low level of zinc was making my back and my liver weak. A challenged liver can give you hot flushes apparently. So zinc tablets took my hot flushes back to bearable again. May be worth a try?
My main SE for me is the pain in my joints. I already have fibrmyalgia which results in pain, muscle cramps, and tight tendons, as well as fatigue,but the arimidex has made the FM twice as bad. I have not found a solution to this, but do my best to concentrate on the fact that Arimidex is stopping the breast cancer. Which do I choose?
I have also gained weight, but to 'up my exercise' is out of the question. But I continue to work full time, enjoy my two small granchildren, and walk as much as I can, just not up to pre BC levels.
One lady said that the side effects creep up on you, and I agree with that. We have to remember what we have been through as well. Our bodies have been stabbed and cut, poisoned and burned - and we wonder why we cry!
Be well ladies
Glad to be here though!
0 -
Chatsworthgirl, my onco told me to start taking my Arimidex about 3 weeks after my last chemo infusion. (I had 4 rounds of Taxotere & Cytoxan.)
I'll second what MostlySew said: please don't let our complaints here discourage you from starting Arimidex. Some of us do have problems, but others don't; and you're less likely to hear from the women who are doing fine.
The thing is, the SE's of aromatase inhibitors usually sneak up on us. They don't hit overnight. And, as my med onco said, we can always switch to a different AI if the first (or second) one gives us trouble. Even the bone-thinning that occurs in some women is "more easily treated than a recurrence of your cancer," as my onco said.
I'm not trying to be all Pollyanna about this. I know some women have serious problems on the AI's, and some women quit taking them because of that. But, hey -- it's worth it to give 'em a try. Maybe you'll be lucky and not have any problems at all, or maybe whatever you do experience will be tolerable. Beats going through chemo again (IMHO)!
otter
0 -
I agree with Otter
I've not had any SE's in my almost 5 years on the A Team that would upset me as much as a reoccurance of bc would! Good luck to all who are starting - and remember there's a suggested activity, advice available for almost every SE that's possible - some are easier to lie with than others, but definitely WORTH TRYING THIS MEDICATION.
0 -
Thank you for the responses. I have been doing some research on when to start and found that most were advised to start after radiation. I have an appointment with the radiation oncologist on the 30th and then will meet with the onc.
It is likely that I will not do radiation due to my age and the low incidence of local recurrence. At least my onc told me that. So when I meet with the radiation onc I will be asking him what the percentage of benefit is and if it is what I have already been advised and have already found on research then I will decline.
Just FYI, I had a complete mastectomy with sentinel node removal which had cancer cells but they had not escaped the node. My onc at first said I might have radiation just to my under arm but then later advised that given my age and stage radiation was not going to confer much advantage and the risk of lymphedema didn't make it worth it.
I am just so conflicted about taking Armidex. I am just starting to feel like my old self, having completed chemo on December 9. I will call my onc today and ask him if I should start or if I should wait until after I talk to the radiation onc.
I still haven't started to grow my hair back. Just have stubble all over my head. The irony is that I would not have lost my hair, it just would have thinned a bit. So buzzing it all off was a real shame. I hope that Armidex does not cause me to have hair problems as I have read.
Sorry I am whining.
Kathy
0 -
Kathy, try it with an open mind. I am fine after over 4 years and so very grateful that this drug is available to us. It is our biggest gun in the arsenal against recurrence....much more so than chemo even. A friend of mine who was recently diagnosed at Stage Ib; but she was triple negative. She ended up doing 16 rounds of chemo as opposed to my 4....all because I could take armidex!0
-
ruthbru Thank you for the encouragement.
My biggest problem, I guess, is that I have gone my entire life without any serious illnesses. I thought I would live to be 100 and then just drop suddenly from something. Never in my wildest imagination did I think I would get breast cancer. None in my family.
So I have always been mostly drug averse, never took much except when absolutely necessary such as antibiotics for an infection, or aspirin for a headache and cold medicine. Chemo was a huge decision for me. I almost didn't do it but my husband was coming apart at the thought that I would not so I did.
So again I am faced with a drug that is pretty powerful stuff and I will have to take it for five long years.
As soon as I talk to the onc I will decide.
Kathy
0 -
I spoke to my onc. He said to wait until I have my consult with the radiation onc. So it would appear that radiation would come first. Since my onc didn't think radiation would be of any benefit and I am pretty certain I will decline, I will start the Armidex just after the 30th. I will give it my best to see if I am lucky enough not to have bad SE's. Here's hoping.
Kathy
0 -
I have never taken much of anything either, and I take no other prescription drugs now. Remember, you can try it and quit if it is horrible. It is not a decision etched in stone.
0 -
I am 54 and not sure I'm past menopause (no period for few years) so my oncologist is thinking of starting me on Arimidex instead of Tamoxifen. My worry about Tamoxifen besides hot flashes again. Is risk of blood clots and cardiac issues, family history of both on my side, so I'm not real comfortable with it. He said Arimidex adds risk to bone loss, so he is sending me for a bone density test first ,and he said he can give me shots of vitamin D.
I'm newly diagnosed and just touching the surface on the hormone ER/PR positive cancer drugs. Is there anything additional I should be aware of or look into?
Thank you for your input.0 -
Hi Ladies,
There seems to be a lot of concerned folks trying to decide whether or not to begin taking an AI. I will throw in my two cents, but please don't throw it back at me.
I've been on Anastrazole (generic Arimidex) for almost two years. My onc started it immediately after I completed chemo and I took it throughout my 7 weeks of radiation treatments. I was pre/peri-menopausal prior to BC. Chemo, along with having an oophorectomy/hysterectomy, put me in menopause overnight. I have struggled greatly with joint pain, but I also have other health problems. I was diagnosed with BC at age 49. I still work as a Finance Officer, which requires the ability to write complex mathematical formulas, have maintained my weight, don't take any anti-depressants and I have had five surgeries in less than two years. I also will have the sixth surgery in a few months. None of the surgeries have been for reconstruction or cancer recurrance.
I for one am very thankful for the AIs. I had a low oncotype score, but I didn't want to look back years later and regret my decision. If I had to choose between stage IV and side effects from the AI, I'll take the side effects any day. Many women have little or very few. I just happen to be one that struggles with pain every day. As someone on this site has said, "My favorite side effect is being alive."
I recognize that each person has a right to choose and to live with their decision of whether or not to take a particular treatment. I am living with mine every day and for me the fear of cancer always outweighs the pain from Anastrazole. Just my thoughts. I hope that each of you come to the decision that works for you and that your side effects, if you do choose to take the AI, are minimal.
0 -
I have only been taking arimidex for two months. I don't have any problems with my wrists. But I started growing hair on my face...never had that problem before. And suddenly my facial skin looks much older with wrinkles. Any of you experience that so suddenly?
0 -
I know that at three months after beginning AI, I began having the joint and muscle pains all over my body. I didn't get additional facial hair, but wrinkles- well let's just say I have aquired more. My skin is drier though too and I think that goes along with menopause. Were you pre-menopausal before BC Twoputter?
0 -
Chatsworthgrl,
Just curious, did you have an oncotype test? I was looking at your bio and wondering why if you had 1 positive node why they only took one out? I just had two positive, and BS took out 19. Did your doctor say chemo was optional?
Blessings on your hormone therapy decision. I started on tamox for two weeks and unfortunately was taken down by it (joint pain primarily with vomiting and weird headache).
When I had my radiation simulation with rad onc, I could barely walk and I didn't realize it was from tamox until rad onc said it was the culprit. Then she said she doesn't have any patients take hormone therapy during radiation so she had me stop taking it. Then the radiation got a grip on me around week four of seven of rads, and it kept on until I was about 8 weeks after last treatment. I don't know if I would have made it through chemo ...
Anyway, never resumed taking tamox, have two top med oncs with huge difference of opinions on which hormone therapy I should be on, and right now I don't give a care. I just want to have some time to hopefully recover from this post mastectomy & breast recon pain mess.
Med oncs both saying they (all oncs) are now prescribing hormone therapy for TEN years instead of five. Patients either start on Arimidex for 5 years then Tamox for 5, or vice versa.
Makes it hard for patients who can't tolerate SEs to have to think about getting throught 10 years of pain versus the old standard of 5 years.
0 -
I think some women who start on Tamox then switch over to Arimidex after 5 years but not the other way. (and that is because if you are starting on tamox, you are younger and have more estrogen to supress to begin with). I just saw my oncologist yesterday. He is not opposed to certain people staying on Arimidex for up to 7 years, but no longer. Since I am only mildly estrogen positive, he wants me to stop after 5. This is what another friend's doctor also told her this fall. Unless new studies come out, most oncologists will NOT suggest that you continue on for ten years unless there would be some special circumstance to do so.
0 -
I just had the 5 years or more talk with my Med Onc. There are studies in progress that look at taking an AI for longer than 5 years, the results are expected to start being reported in a year or so. My Med Onc has women in the study and is following it pretty closely. She's saying 5 years until that info comes out, and then adjusting the protocol based on that info. So we should have some real evidence to base the 5 years or longer question on soon.
0 -
Rocket
I expect you've read many of the suggestions on this thread that have helped some reduce the joint pain - for me, it was the combination of being GLUTEN FREE, and acupunture that helped the most.
Yes, to increased facial hair - and a million THANK YOU's to the woman who first suggested using Extra Virgin Coconut Oil - I use Whole Foods 365 brand ( in large black plastic jar) but friend has recently emailed me she loves the Trader Joe's coconut oil. Softest skin I've ever had...LOVE IT.
0 -
I am on day three of Anastozole ( the generic of Arimidex) I am surprised at the cost of the generic, even after our prescription discount is 116.00 a month out of pocket for the next five years, but my sweet hubby said, it is worth your life It seems like my hot flashes which I have been experiencing on and off for the last year are more intense and frequent, with just 3 days of being on this pill. I had three intense hot flashes in a row at 1:30 this morning. I will have to change the sweaty sheets. yuke
0 -
Do you use the coconut oil on your face or just body?
0 -
zumbagirl - oooh..that' WAY TOO MUCH. Do you have a Costco near you? You don't have to be a member to use the pharmacy. CASH PRICE for 30 ( month) generic/TEVA anastozole is $20. Or $60 total case price for 3 months. I use my insurance, and copay - so it's less, but you really need to check it out. All the pther pharmacies are still ripping folks off, some saying "it's an expensive generic." BS!
Twoputter - ALL OVER. For my face, especially in winter, I use PURE COCOA BUTTER - also in a jar from Whole Foods - take WAX LAYER OFF TOP ( which took me a while to figure out, not too good at reading instructions) - and melt/soften with top off in microwave - about 2 minutes in mine. OOOoohhhh...lovely chocolately smell, soaks into skin - I put coconut oil on top - smell like a lovely icecream sundae. Coconut oil all over my body - a little melts and covers a lot.
Also keep a jar of coconut oil on desk, to rub on backs of hands, which turn into lizard paws in the winter...literally. This being without estrogen, is, well, interesting. But sure is a milion light years better than having another battle with bc - I'd take anything over that!!!!!!!!
0 -
twoputter
apologies if this is TMI ( too much information) - but I also use coconut oil instead of Replens - which stings..ouch! SO, I take about 1/4 teaspoon of coconut oil out of the jar, roll it in my hands to about the shize of a vitamin pill, put it into a small piece of saran wrap ( cling film to those reading in the UK), make several of them - and put them in the refridgerator. Very easy to insert, just before I got to bed, it works for me. About 3 months into this "adventure" I call being on the A Team, I went to my doc in such pain, bleeding, terrified ( totally forgetting I had a total hysterectomy years ago) and the lovely woman looked at me sympathetically and said "it's just vaginal atrophy." Just? Pain. Bleeding. JUST? Then began the search for relief, without estrogen - tho I know some women can use the e-ring, or other things with estrogen, my oncologist said a HUGE NO (given my stats) - and I tried, well, too mmany to list...best advice from one of these threads was Coconut Oil ( that was after the same woman suggested Crisco, which I also tried) and if anyone finds anything better than Coconut Oil for "vaginal atrophy" I'm open to hearing it....
0 -
Hi Twoputter and Rocket,
I just wanted to let you know that even though I have been on Arimidex for a year, I had the dreaded facial hair (more like new born gorilla) only in the beginning, but it has subsided. Now I have thinninng eye brows, but am grateful that my hair on top of my head has grown in thick and curly.
Amazingly, I have fewer wrinkles than before even through I am 52. I think that speaks to the fact that I eat so much healthier now (hydrate more, drink alchohol less) so my "baseline" was probably bringing on the wrinkles faster than usual. So there is hope (at least in the short run).
I heartily endorse Sunflowers reccomendation of coconut oil, especially for the mojo aspects of life.
Best to all, Beau
0 -
I have been on Arimidex for 5 months and am coping with terrible joint pain in my wrists and thumbs- worse on the left than the right. ( I am right handed, thank goodness.) Pain started the second month on Arimidex. I am HER2+ and ER+ and have been through 6 chemo treatments and have 4 more Herceptin infusions to go (taking Herceptin for one year.) I sleep in a wrist brace on the left, which helps. About 3 weeks ago, I asked my onc for a prescription for Voltaren Gel. My dad uses it on his arthritic knee and swears by it, so I thought why not? It has really lessened the pain quite a lot. It also comes in pill form, but NSAIDS do a number on my gut. The gel form is only taken up by the body about 5%, and I have had no trouble with it at all. I can use it up to 4 times a day, and doing that, plus taking the arthritis 8 hr tylenol has helped me a lot. I'm not saying it stopped all the pain- certain movements feel sharply painful, but it's 80% better than it was. I am very stiff in my legs and feet after sitting or sleeping, but I can walk that off. The hand thing has been constant, but thankfully is much better.
I finally registered after reading on this site for about a year. It has been a great help during my journey with bc! I had bilateral mastectomies with reconstruction, and I love my perky girls!
0 -
zumbagirl, I ditto SunflowersMA - 116.00/month is a rip-off. Find a new pharmacy! My generic is $14.00 for a 90-day supply. Granted I have a good med plan and it's their online pharmacy but you are paying absolutely too much.
Wecome joyfulgirl. Different se's appear and many times go away or become manageable. Hoping that will be the case for you. I had the wrist and thumb pain as well. The wrist splints worn day and night for a couple of months worked and one thumb I had to have a cortisone shot which also worked. Healthier eating and exercise helps my hip and knee pain. These days I am relativey pain free and next month will complete 3 years on it.
0
