Arimidex - Coping with the SE's
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Ruthbru, yep, for years, I would think someday I would like to write a novel. Well that someday is here and I have 70,000 words and on a roll,having the time of my life in my after work hours! I have also discovered the Italian discount shop, the Max Mara of last season's fashions. Didn't know what craftmanship meant. It's great! I have canasta buddies for life. And a good haircut. There. You are so right on!
Something else: I have decided to move home at the end of my 5 years of drug therapy and try something different. I have starred fear in the face and have learned to wink. There are some blessings to this journey, sometimes.
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Ah yes..staring fear in the face....taking chances..what the heck.
ruth- I too am doing tons of things I want to do...singing in a choir, dancing on Fridays, going to the gym, spending time with friends....went to paranormal 3 ...not sad....didn't even jump at things....this is just regular stuff that makes me cry....a teacher had wanted me to observe her and then changed her mind...an off day and she was so upse...found myself tearing up with her...med student at the cancer care workshop on Saturday teared up when saying she was not sure if she wanted to continue with med school....I teared up in sympathy....all connected to my fatigue level...other days I am fine....I am doing like you Ruth..good hair cuts, massage when I need 'em...out to dinner when I want to....don't scimp on food ....travel....still sad...
Just found out an old colleague/friend of mine was diagnosed a month before me last year...had a double mastectomy last July....and an ovary removed the day before her surgery because of a cyst....amazing how many friends I am finding out about now that Iam telling people about my year...there are a lot of us cancer babes out there....pretty scary how many actually....
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It's OK to be sad; there are a lot of sad things in the world, the thing you have to try to do is not to stay there (just for the record, I even cry when I'm watching commericals!).
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Hahaha, Ruthbru! So do I . . . that "fabric of our lives" commercial used to get me every time.
L
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Ruthbru, you are fortunate to be able to do those things. I really think having time and money for the extras really helps. I never have time or money to do anything special for myself (like massage, haircut, vacation, etc), and I really think it would help me feel less fatigued and stressed.
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Fearless,
I understand what you're saying. Where I live, many massage therapsts have what they call "sliding scales" to make it easier for people in difficult situations to have a massage. Also, there is a great deal of "bartering" of services. Have you heard of Time Banks - we have one here, and it really helps people share their time and services. I hope you are able to find something that might help you get one of those "special" things for yourself. Thinking of you...
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Hello everyone! You all made me laugh ("the fabric of our lives") and tear up!! Thanks!
bedo: I have thinning hair too. My three yr old has thicker hair than me.
I have been on arimidex but am trying a switch to femara. We'll see how it goes. I didn't exactly have this great head of hair before all this craziness either! Anyways, I have tried Nioxxin myself too. I did notice a little less hair falling out daily. I did discover a product called "Wen." A good friend of mine works for QVC and has worked on shows with the creator (Chaz Dean who has had a close family member get BC). She asked him some questions for me and his advice was to try the tea tree oil line. It's claim is to be "all natural" with no sulfates, harmful perfumes, etc. I am currently trying it. My girlfriend said he couldn't say enough about tea tree oil. He said that it wouldn't make my hair thicker..... but healthier. I'm gonna give it a good try. It's expensive..... I decided to treat myself.My transition to femara includes a week off the arimidex. My onco wants to see if symp. disappear, change, etc. to get a clean slate on the femara. Can I tell you..... I have been off for about 3 days and what a difference. My body doesn't ache, I am not tired or as sad. All that stuff.... gone. Wow. I think I am coming to the realization that it's just gonna be hard..... a struggle until I am cleared to be off ( have only logged about a year and a half). To know that I have another 3 1/2 yrs. or more depending on the study results then is a wearing thought but I know I have to perservere. I certainly don't want the alternative. I can only hope the femara works better for me with less side effects.
Have any of you tried a switch or have experience with femara? I'm hesitant to check the femara thread for fear of the power of suggestion!
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Hi,Lyncerock,
I have been on Femara for 19 months, now my Onco is switching me to Aromasin - because of SE's. What to expect?
best wishes
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I was on Arimidex for 14 months and switched to Tamoxifen with almost total relief from side effects. Still have brutal hot flashes but terrible weakness and sore joints are gone. I lost a few percentage points (recurrence) by making the change
but in my own case, I thought it was worth it. It is so much easier to make this choice at my age, 65, than if I were younger.I am a religious exerciser and follow a diet low in red meat, high in vegetables, low in sugar, high in fruit, low in carbs, high in fiber. I have gotten my body index down to low-normal which I think is also important.
I am glad I took Arimidex as the comibinaiton of an AI and Tamoxifen is attracting positive attention. And I don't rule out the possibility that I will try it again. IF I were to have a recurrence I would definitely go back on an AI in spite of side effects as I do believe in their efficacy. Just have my fingers crossed right now.
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Lyncerock Thanks for the suggestion. Now it will be Rogaine+biotin+Tea Tree. Is that part of the Wen collection? Let me know how it works. PS I can't watch humane society commercials at all and never could, and I can't take in anymore animals!.0
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Anyone see any further info on tree tea oil? I know back in April there was a question and I was just on the Livestrong website this morning researching face care products and tree tea oil seems to be one of the ingredients they say ER+ should stay away from, or at least use infrequently.
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Slousha,
I switched from Femara to Arimidex because of the SEs. I didn't really see a difference, but a lot of women do. Good luck!
E
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Lovely ladies.....I have a question for you...
I saw my onc. today. We chatted about the se's of arimidex and he commented that the reason we have joint pain is because we have estrogen in our joints and arimidex and femara wipe out the estrogen which creates joint pain. Anyone heard of this? Is my lovely onc. off his rocker?
The other thing he said was if you have hot flashes then you have estrogen in your body. This doesn't make sense because I have met some women on arimidex who never had the hot flashes, so according to his logic they don't have estrogen, so how come they were er positive???
Blessings to everyone!
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Painterly, I had my MO and another MO (my second opinion) both tell me they don't know exactly why Arimidex or the AIs (or Tamoxifen for that matter) causes side effects. Your Onc could well be right. Speculation is that they stop the estrogen that builds the calcium and your bones are being deprived of calcium. On the breast cancer.org website, there was an 'ad' on the side about recent publications and the comment was that if you are having hot flashes and bone pain that the medication is working and if you have no SEs like that, then it is not as effective. Some of it seemed like info to convince us all that we should stay on the drug and be committed to seeing it through. I had always understood hot flashes were caused by a lack of estrogen which is why you get them during menopause. Eventually your body adjusts to the lower levels of estrogen....assuming you were not like me and took estrogen (HRT) which then provided food to the little cancer zombies that grew. I'm not sure anymore what anyone knows for sure, what they aren't telling us that they do know, and how much is fabricated to convince us to do what they want us to do. Makes decision making very hard.
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I think it has quite a bit do to luck (or lack thereof), just like some women have an awful time with natural menopause and others sail right through it. Or one person has hot flashes and another feels creaky.
Fearless, you can still do little fun things for yourself, even without a lot of money or time. Nearly new shops have fabulous clothes for bargain prices, as well as scaves etc., lots of my 'jewelry' comes from Walmart, Kmart and Target, you can go out for coffee and just have coffee, have a potluck with friends, or a day trip where you all share money for gas. Trade off your favorite books or get them at the library. Try to plan some little treats for yourself, it WILL make you feel better!
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Painterly,
I think judging the effectiveness of the AI by the SE's or lack of them, is well, BS. And I don't mean breast surgeon. I didn't have hot flashes even when I had a hysterectomy ( all parts gone!) about 23 years ago. Still don't get them.
Joint pain - WHOOOOAAAAA...now we're into my territory. Acupuncture, and going Gluten Free made such a wonderful difference, it shows for me, at least, that INFLAMMATION is a major factor. And the loosey juicy fluids that keep joints moving MUST, just MUST be effected by the total lack of ESTROGEN the same way many other parts of a woman's body are - don't want to get into Vaginal Atrophy, DRY SKIN, DRY, DRY, DRY everywhere body - but think that's ture inside as well as outside.
I slather, the only word I can think of, coconut oil on after a shower ( not too hot) and it soaks in and by the next day, my skin is dry again. Smells lovely, I love coconut, but this is definitely a main SE of Arimidex for me.
Will find out later this month at Physical Exam what Cholesteral level is, also deeply effected by no estrogen.
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I've been reading all your posts for a while now, and it's brought some relief - at least I feel I'm not alone.
I started Arimidex in early March, and at first the se's weren't too bad. My left knee was very painful for a while, and then that stopped and my right knee started to hurt.
Now, 8 months later, and I'm wondering if the cure is worth it. I can't sleep, despite melatonin and various sleeping tablets, and I can't move without most of my body hurting. I went through a very dark patch, where I was really depressed, but I seem to be mainly over that now, thank goodness.
I see my onc on 11 November, and was going to ask him to switch me to something else. But I too saw something on this site that indicated that women who have bad se's from Arimidex have a lower recurrance rate.
I don't want to stop a treatment and find a few years down the track that the beast has returned. I don't think I'd ever forgive myself. But at times over the past couple of months I haven't been sure that my current quality of life is worth it.
Just knowing that there are many of you out there that are the same as me, is helpful.
My rough patch has been made worse because it seems that just about everything has gone wrong since dx. I've lost my self confidence and can't handle the sorts of things I would take in my stride before bc. I kept telling myself it would come back, and I guess it has a little bit, but I'm not like I was. I had a good job that I enjoyed, and had to quit it because I couldn't handle the bs that was coming my way from a couple of really nasty people. That meant that money was very tight, and for a while we coped fairly well. Then my car's engine blew up and the ride on mower (we live on 8.5 acres) blew up and the washing machine dropped dead - all in the space of a couple of weeks. The worse thing was that a friend of mine, with the same bc as me, just finished her 5 years of Arimedex only to find she now has mets to the liver, and is very sick.
I need to take hold of myself and battle through, but it's harder these days than it used to be.
Sorry - I know I'm being a cry baby at the moment, and I also know you all know and understand how I feel. That helps :-) I still feel myself saying - I WANT MY LIFE BACK!!!
Trish
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(((hugs to Trish))). Hang in there!
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((((Trish))) Vent away. Sometimes you just need to let it all out. I'm so sorry about your friend. It does make it hard to cope and think that everything will be fine with you. I am guilty of comparing myself to others (why?) when we probably have completely different pathologies and shouldn't compare at all.
Since we haven't mentioned Effexor lately, you might get some relief from the aches and pains from taking a low dose. I knew I was feeling creaky and stiff, and the hot flashes weren't letting me sleep at all. About 3-4 days after starting it I realized the flashes were decreasing and about two weeks into it I thought, "wow, I feel great!" Turns out Effexor is also prescribed for fibromyalgia. I take whole pill at night (37.5 mg) and a half in the morning. You can get it generically, too. Now ends my commercial for Effexor!!
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Hugs to Trish. Sometimes you need to find a seluded spot and just SCREAM, and then maybe hit something!!!
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I just started arimidex (generic) 2 1/2 weeks ago and so far so good. Just wondering how long you need to be on it without any issues to know if you're actually one that won't get SE from it.
The only symptom I had when going through menopause was not being able to sleep all the way through the nite and throught of myself as being one of the lucky ones.... until getting the diagnosis of bc this July.
Still with everything that could have happened, I still feel like I'm one of the lucky ones... have had awesome doctors here!!!
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I just started arimidex (generic) 2 1/2 weeks ago and so far so good. Just wondering how long you need to be on it without any issues to know if you're actually one that won't get SE from it.
The only symptom I had when going through menopause was not being able to sleep all the way through the nite and throught of myself as being one of the lucky ones.... until getting the diagnosis of bc this July.
Still with everything that could have happened, I still feel like I'm one of the lucky ones... have had awesome doctors here!!!
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Trish, hope you can feel the HUGS that have travelled across the seas to reach you. Just reach out and pluck one from the air.
Hi to everyone.
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been lurking awhile--hi to all. when i started the ai, my onc gave me samples for 1 mo of the different ones so i could choose. for me the generic arimidex was the most affordable, and the side effects weren't any worse than the others, and not as bad as one of them. i just got another refill, and for the first time actually read the insert...guess i didn't want to psych myself into side effects before. the good news is now i know i'm not being a wimp or losing my mind. there is a reason why i feel so crappy sometimes. but all in all it isn't that bad. certainly better than chemo. dh bought me a salt lamp--they are suppose to produce ions or something to promote well being & healing. got the thing set up & turned on & he asked if i was cured yet.
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grdnslve - what is a salt lamp? I never heard of that. Let us know how it works for you!
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I have had some SE that came on early and have remained but I have a few new ones coming on. I have never before had a problem with staying asleep. I have taken to waking up after only 4 hours of sleep and not beong able to get back to sleep. I am also tired and my fingers are hurting as well as my knees.
This sounds sort of silly but I am not as nice as I used to be. I feel cranky part of the time and I do not like it one bit!
I started the generic Arimidex in May or June.
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gingerbrew--guess i'm with you girl. dh calls me 'old yeller'..... of course he is one to poke the bear.
a salt lamp is basically a rock made of crystalized salt. they are sort of pink/coral color, have a hole cut in the bottom with a small light inserted. guess you would say a night light effect. i leave it on all the time. all i can say is although i was sort of shocked/embarrased to have most of the side effects on the list, they are all manageable. so does the lamp help? i could feel a lot worse. i like looking at it-something calming about the light showing gently throught the texture of the rock. it can't hurt. by the way- i do not sell these things, but found a website so you can see what i am talking about. www.naturalsaltcrystallamps.com i figure if nothing else, the mind is powerful, and it may have a placebo effect.
we are snowbirds and winter in quartzsite, az. although we have pillowtop mattresses in both the house and 5th wheel, by sometime in the mid morning my hips and back are in agony, and i end up tossing and turning trying to get comfortable. really irritates the dog.... dh too. just wondering if anyone else with this problem has found relief with an additional mattress pad, and if so, which one.
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Trisha-Anne....you are perfectly a-ok in eeling as you do and expressing it too....having a friend go through treatment and then experience mets must be terrifying on some level...and letting go of a job because of BS...I get that...just quit a Director job because I was tired of it and too exhausted to juggle what I usually have no problem juggling...and that is ok too...it will get better...we will find or joy again...24 hour rule...if today sucks....read a book and go to bed early..take a hot bubble bath....call a friend...get the hell out of the house and paint your nails...distract disctract distract..the bad feeling will pass...and the movement will help...really. sending you hugs
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Sandeeonherown - love that. Distract and treat yourself, however little- works every time.
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I just started 3 weeks ago....my sleep already sucked ...so have not noticed a difference sleep wise. I take zopliclone to knocl me out at night....it is my mind ticking away that stops me from sleeping.
Aches and pains ...and FATIGUE...holy dinah...feel like someone has kicked the stuffing out of me...I am usually the energizer bunny...juggled three jobs (at the same work place) until 4 weeks ago when I quit the main one and now I am exhausted....achey left hand(new this week) and lower back pain...have to roll out of the bed onto my knees ) I have my mattress on the rug so my 18 year old cat can get up without waking me with her howls and I have a foam/memory foam topping ...but I am thinking of taking that off because the softness seems to be the bakck pain culprit...then again, my hip bones were aching from the inside out on Sunday and a hard mattress would not have helped so....I am on a 'wait and see' life diet! it will all sort itself out one way or the other
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