Arimidex - Coping with the SE's
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Mena, have you mentioned these symptoms to your Primary Care dr? Have they checked your thyroid levels? Yours are all classic low thyroid symptoms. Good luck, I hope you can find a way to deal with all this soon ...
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Mostlysew, thyroid is fine! Feeling cold has been the pattern I have folllowed since menopause 8 yrs ago. Never an hot flash then, never on Arimidex. Anxiety, agoraphobia , mood swings, memory issues then, exactly , no actually more now on Arimidex!
Basically this pill has thrown me back in the mist of Menopause with intensified S/E!
I really don't know which doctor to discuss this problem with.
My PCP, My Gyno or my Oncologist?
Mena0 -
Mena - do you attend a support group? They can be really helpful. I was freezing when I started with Arimidex, am on Aromasin now and have hot flashes. Part of the emotional issues can just be where you are in your cancer journey - it's normal to go through highly emotional times - it's very common to have them come on about the end of active treatment too. Talk to your oncologist and PCP about it. Does your cancer center have a cancer rehab program - there are some that have psychologists or counselors that can help with some of the emotional issues.
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My Oncologist put me on Arimidex in August. I scheduled an appointment with her this month to discuss how I was feeling which my husband said was despression and anxiety. I thought it was due to the stress of the start of a new school year. I was crying at the drop of a hat. I would hug and then snapped/bark at my son in the same breath. I had not read too much regarding SE of medicine because I was thankful to have the pill to take. I even called it my remember to thank God for ridding me of the cancer-pill. It did bother me that Arimidex is used for postmenepausal women, which I was not. Upon mentioning this to ONC, she put me on Tamoxifen; somehow she made the assumption that I was postmenepasusal. As of October, my period has completely stopped. Is that normal? Did I loose valuable time, taking the Arimidex? Should I talk to my ONC or doctor about the continued SE or just suck it up and tough it out?
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Mena, this is EXACTLY how I feel and what I'm going through and about the same timing. I sit here alone on a Sunday morning, trying to figure out what I'm going to do. ONC changed my presecription from Arimidex to Tamoxifen after she realized she mistakenly assumed I was postmenepausal; which I was not when I started taking Arimidex in August. As of October, my period has completely stopped but now she's put me on Tamoxifen. All I know is that my world has turned upside down and I'm on the bottom when I've always preferred to ride my horse and not let it ride me. What to do?
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Mena,as I said I was in your boat, and many others. I decided to go to my GP as he has known me for more than 25 yrs. My MO just refers me back to my GP anyway for prescriptions to do with anti-depressants and anti-anxiety meds. He prescribed just what I needed and I have never looked back. My suggestion is see the person who knows you best.
PS....I tried therapy for awhile before taking meds.....I know this has helped so many, but did nothing for me. I still say consult with the Dr. Who knows you best.0 -
renee 47 regarding the AI's I have always been under the impression and been told by my med team that AI's absolutely do NOTHING if you are not post meno. They thought I was post AFTER A BLOOD TEST, and when I was still doing chemo...(cant remember the exact time frame... but it was still prior to going on the anti estrogen pills) but I got a proper period. For that reason they put me on Tamox for 2 years as I was deemed peri-meno. Im now nearly at the end of year1 for Arimidex.
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renee Just reading your posts again.... as far as I know, to ascertain whether you are post peri or pre meno you need a blood test. As you can see with me that wasn't foolproof. I would say at this point in time until it is established definitely what you are youre better off on Tamox. At least you will be getting the benefits pre mid or post. Someone chime in if I'm wrong but I'm sure Tamox will stop your periods. When I had my blood test I wasn't doing any AI's or Tamox. Did they do the blood test on you?
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Thank you so much, Musical! I appreciate the input. Prior to taking the Arimidex in August, my periods were as regular as clockwork. My GP and I discussed some sypmtoms of Pre-menapaus that were bothering me a bit for the past year, but as far as I know, I was never officially 'diagnosed' as menapausal. I'm going to try to see my general practitioner this coming week. I had blood tests before both bi-lateral surgery as well as before my reconstructive surgery; however, I am not aware that either of those tested for pre/post menapaus. My GP gave birth to me. He is old but he knows his meds. Perhaps, he'll be able to answer some of my questions that do not seem to have been addressed by ONC. I HAVE to do SOMETHING! My son will be 8 in February. He is such a happy, active, outgoing, very aware little boy. I feel like I'm missing his life in just the short time I've been taking the cancer medicine. Not to mention, how very worried I am about my mental health and general well being. The posts here have helped me to understand that there are real SE which do affect some people. I was SO involved in understanding my cancer but after all of the surgeries, I was just glad that it was OVER! Now, I'm understanding, I still have a bit of the journey to travel. So, both Arimidex and Tamox stop estrogen? Thus, stopping periods? The days between the two prescriptions brought immediate relief from foggy head, motivation and mood swings. As soon as I started on the Tamox, my mood and memory have declined. I was really hoping that the change in meds would help but it does not seem to be the magic solution to the problem. Now, I'm not sure what to do.
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Definitely aim for that discussion with GP. In the meantime between AI and Tamox, Tamox is the better way to go cuz AI's will NOT benefit you unless post meno. Now, having said that.... Im so sorry you are joining those of us that struggle with all this. It's tough and youre not alone. The AI's and Tamox are big guns. They can have some mean side effects. I look at it, with BC theres never really any decent choices like those that will allow you to totally forget. It's always the choice between the lesser of 2 evils.
Just looking and see youre new too. Well a BIG warm welcome to the boards. You will find much support here (BC forums in its entirety) no matter what youre going through and at what stage youre at. There is soooo much to take on board it can be overwhelming, but theres folks here that will walk you through things and talk to you. If theres anything you need clarification on the info will be here somewheres. If someone doesn't know, then someone else more than likely will.
Big hugs Renee,
Musical
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Thanks so much, Musical. With your help, at least for now, I have a plan. I'll start with a discussion about what I've read here with my husband. He's been so very supportive but the last few months have been rough. Your prompt message back will be SO HELPFUL to that discussion as well as my talk with my doctor. I'm also part of a support group. The women were all so very helpful from April diagnosis through reconstruction; but again, I thought since that was all past me, the support would not be needed. Clearly, I need some direction and some experienced people with whom to talk. Perhaps, I'll give one a call tonight, just to get the discussion rolling. THANK YOU AGAIN for your response to my SOS!! Did not go to church this morning, but GOD continues to look out for me and provides well, even when I don't have the slightest clue what to do. You are a GOD SEND:) I'll let you know how things go after this week, if I'm able to get an appointment. In the meantime, I'll reach out to some of my support group women.
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renee, Im glad to be of some help. Thats what this community is about. People have helped me on this board, and it's great to return the favour. We may come from all walks but one thing we all have in common is BC. BUT... even then we need to break that down further because BC can be so very different with so many variables, it deserves its own subsections such as you see on BC forums. Some of these wont apply to us at all and some will be more relevant to us at a particular time, and other things might always be relevant like if we're triple negative, or triple postitive, etc etc.
I'm not sure if youre aware but when youre up for it, I see you have lymph nodes out. I always like to get people onto the preventative thing with LE (lymphoedema) Big hugs again ....yes I know this is soooo overwhelming and it's a case of going though the steps one at a time. There is a lot of ignorance about this potentially debilitating thing both with BC patients and the medical profession. With LE which also has it's own forum here, theres definite benefits in knowing about it sooner rather than later. Just in short, anyone who has had lymph nodes out is at risk for the rest of their life to get LE. Most will not get it, but all need to take certain precautions with the care of their arm/s from now on. If I had have known what I know now, I would have had base line measurements of arms BEFORE surgery. If I can make ONE woman more knowledgeable about LE BEFORE THE FACT, then my effort is worth it.
Yes please let us know how you go. It's great to have supportive hubbys. Mine has been exemplary all throughout.
I pray that God will indeed guide your steps and bring the right people across your path for such a time as this.
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musical....ditto everything you said about Lymphedema!
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I am usually more of a lurker than a poster, but I have to vent! I hate this med sometimes! In the last week I have thrown my car keys in the garbage, left my cell phone in a changing room at Kohl's, and "lost" my wedding rings in my jeans pocket! ARGGGGG!
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Musical and Schati14: I've had the Lymphedemia on my radar. No problems as of yet but my surgeon provided good information regarding that after affect/condition.
MamaV: I've been thanking God daily that I have not forgotten my son somewhere! This memory loss is in my top 3 SE concerns. Is there any chance it starts to improve somewhere along the way? Can't imagine it getting any worse without me forgetting who I am from one minute to the next.....????
I've made my appt with my GP for Wed. Seeing reconstruction surgeon on Monday. Waiting to hear back from cancer surgeon for an appointment. In the meantime, had very productive discussion with my husband. Other than that, I'm praying God gets me through 1 day at a time.
Thanks for everyone's input! Propelled me into positive mode direction. Prayers for all!
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I hear you all on the memory thing. It can really annoy you when you do things like put the keys in the fridge. Not sure about you guys but I reckon at least some of it anyway is just the whole stress of dealing with so many issues. Remember A about squashes all the estrogen in your body and thats HARSH.
renee hey thats GREAT that youve had the headsup on LE. Please keep us posted on how youre going. Thinking of you.
mamav hugs. It sure can infuriate you when you end up chasing your tail about all this. One thing Ive noticed is I get so angry when I continually lose stuff and I say to hubby RIGHT!!!! Im not going to bed until I find <....... > fill in the blank with numerous articles. Poor hubby has to put up with this :-(. Last night? yep, it was the coconut oil. grrrr.
Oh and Happy new year everyone. Its 8 am into NYD here.
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Hi Renew, welcome.
Yeah, that little memory thing. Ugh! I ran out of gas justt last week. Yeah, I hear you. Sigh......
May 2013 bring each one of you better things.0 -
Ha Ha, Musical, I bet he waited for you to find the coconut oil!!! Wink
MamaV, I can't tell you how many times now I have lost my keys or cell phone at the walking park where I walk my dog. I always walk him just before dusk. If I have to stop to adjust his collar or get a sticker out of his paw, I set something down and then don't pick it up. I have had to walk home for spare keys, drive home to get DH's cell phone and then walk around the park calling my own phone. OMG I must look like a real idiot to people!!!
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musical....I was one of the "lucky" ones...I DO have LE. After several visits to a registered MLD therapist, I gave up. I have a sleeve but don't wear it anymore.
Surprisingly my MO said "don't baby that arm and use it as you always did" I was surprised but that is just what I have been doing although I am still careful about hangnails and cuts. That said, most gals with LE need to REALLY be vigilant. I check my wrist all the time to see if it is swollen. It never effected my hands or fingers and if I see any more swelling, I will certainly start my exercises and massage again. So far, so good!
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shells
I have to say not everyone that smiles really smiles but everytime I see your avatar it just strikes something really nice in me!. I don't know which one you are. Anyway what a lovely pik.
hey schatz. Great that you have your LE where you want it or as best as you can anyway. I got told more or less not to baby my arm as well....well as far as being too strringent on the weights you lift. I was told within reason, to carry on with caution, doing what you are used to. I'm WAS used to some pretty hefty manual labour and what is it they recommend as the max weight.... what 5lbs or something? Thats rediculous. I'd NEVER get anything done. I still lift 10KG very easily when I go shopping and need a bag of spuds or something. 5lb = 2.2KG (approx) Like you Ive had very little probs with my hand but there is slight swelling just before my wrist. I've always found that the few special exercises they give you and MLD has always worked when I get aches and pains synonymous with LE.
One thing Ive made a big change on is handling our few sheep in the yards. Sheep can be knuckleheads at times and crash into you etc. No worries before but now....No. Arimidex is hard on your bones, and the last thing I need is broken bones from sheep when they feel like being idiots. Prevention definitely better than cure.
Well last night (NYD) I started my Neurontin. Ha sure got a good sleep last night. Took about 4 hours to wake up though. Still, this a.m.I went for a good brisk walk which took about 40mins. I expect the sleepiness should abate once I "settle in" to this drug. We'll see. If all I have to cope with is a bit of drowsiness I'll be a happy camper.
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Glad to hear I'm not the only one who has lost her mind on this stupid - yet life saving - drug!
I feel like such an idiot sometimes! I need a shirt that says - '"Blame the bad hair, big butt and stupid brain on cancer! I beat it, but it won't accept defeat quietly!"
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MamaV, I think I need that bumper sticker!
Thanks Musical, I'm on the left and that is my sister on the right. That was about 6 months PFC and my hair was still coming in. We were hiking and having a grand time!
Happy New Year everyone!
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Thanks shells for explaining. Please tell your sister, I just think the pik of you two together is delightful.
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Renee-welcome. glad you are getting some help and taking a positive turn. I notice you and I had very similar surgeries. I had a blood test that said I was post-men, but was still getting my period, so my onc suggested I have an ooph and then start arimidex.
as for LE, I started seeing an LE therapist immediately after my surgery, my breast surgeon knew how concerned I was with LE and she got me started with the therapist and appropriate exercises. While I didn't have LE, I figured it couldn't hurt.
MamaV-hang in there!
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musical....you need to watch the "bones" for sure...my DEXA has me at the beginning of Osteopenia. My PCP offered me meds but at this point I am taking so many I declined. If my next test in 2 years shows more loss, then I will consider them...until then..just trying to be careful. I have a great fear of falling down my stairs (15) with a load of laundry in my arms...DH usually carries it for me if he's home. Lately I have no reluctance in asking for help with groceries or whatever! I milk it for all it's worth LOL
What is really concerning me now is that I can't remember names and words that used to be second nature to me....I hem and haw while searching for another word. I HATE THAT!!!!!
Will it get worse? Also my hair is thinning to the point it makes me wonder if in a few years I will be wearing a wig again. I don't notice anyone else mentioning it...is it just my age? ...69...glad I made it this far but between aches and pains and thinning hair, it SUX!! Beats the alternative though. I am never usually depressed but today I am...thanks for listening!
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Susan......the memory loss is just our age, I believe. All my friends and acquaintances
of our age are complaining of the same memory loss.
The hair thinning, you can blame in part to the little pill.....you know I have been there.
As I told you, mine is starting to come back in again and very little hair now on my pillow
in the morning......patience gal.....0 -
Christine...I don't notice hair on my pillow but all over the floor and my hairbrush. It has to be the pill because before BC, I had thick hair.
The memory loss is frustrating but find myself using words I had never used before. I guess that we could consider that "widening the vocabulary"....pfffffffffft
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Hi--I am on letrozole--a different AI but I am finidng hair thinning on the top of my head--I have always had lots of hair--but i can see my scalp--so believe the AI is causing this and am wondering whether this will continue and whether it will reverse once I finish (in about two more years)--not sure if the side effects are generally the same for all AI's but the hair thinning caught my attention. Thanks for any advice/info you may have. Fortunately, that's the only SE I have really had besides some early joint soreness and weight gain--but it beats cancer.
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Schatz...Well I seriously hope you DON"T fall down any steps and you most certainly vent away!. YES it beats the alternative BUT all these things we have to do with BC are big guns. That is, Surgery, CHemo, RT and hormonals. I see you have had Chemo. Well I STRONGLY believe that chemo does do something to some of us and our brains. Did you notice anything after Chemo or when you started taking AI's. Youre like me in that Ive had slight bone loss too and I'm not on anything either for that. Had my BD about 4 or 5 mths ago. Im trying to do all I can (within reason) with weight bearing exercise (walking) which is said to be good for your bones. Hopefully that will keep me from getting osteoporosis. Not without pain, I do between 25 and 40 minutes most days.
I'm not really sure about the AI's but the proof is in the pudding. If a person says their memory is noticeably worse when theyve weighed up their particular circumstances, then why should we doubt them. The more that say the same, is all the more conclusive. It's just common sense. On the balance of probabilities you might get one or two fakers who dramatize the facts but the sheer numbers that complain about this can't be ignored. I most certainly wouldn't rule out the AI's doing something. I'm no health pro but it is not rocket science to see that when almost all if not all the estrogen in our bodies is squashed then that is likely to have detrimental effects, like earlier aging. Our bodies are meant to have estrogen. It is a radical thing to artificially deprive it of this hormone. But thats the price we are willing to pay to increase our odds of beating the monster that is BC. I'm grateful we have something, and thats what I mean by the choice of the lesser of 2 evils......just saying.
Ive noticed myself since chemo, I definitely get word block. I cannopt see that improving any, on A. I cannot think of a number of things interchangeably in a reasonable quick time like I used to. I have to concentrate on one thing at a time. You'll be in the middle of a sentence and a SIMPLE WORD just escapes you. Very VERY frustrating grrrrr, not to mention embarrassing. Youre talking to a stranger on the phone about something technical that used to be a doddle and now you feel like a dweeb. Ive heard a number of people say exactly what Ive said here.
On the broader spectrum, SERIOUSLY, I think we have so many toxins around us in our modern living that it's affecting people everywhere. I believe tthis most certainly enters into the equation. We now think it's perfectly acceptable and normal for old people to just grow old and lose their memories and thats typically what they do. I dont believe it's always been that way, nor do I believe it's a subject that belongs in the "alternative thinking" box. There is undeniable proof everywhere that we are being systematically poisoned from many angles. MSG, aspartame, environmental estrogens in plastics et al.
On the hair loss, Im SOOOO sorry all you guys are going through this. Yea it SUCKS. Reckon mine has thinned just very slightly. Barley noticeable. It was always fine-ish but thick. It came back in just the same. I don't do hair colour and theres not much grey. Im in the 55-60 age brackett. I still have my Chemo curls lol. Im growing it back long. After 1st chemo had it all shaved off. It was 2 foot at the crown. I HATED LOSING MY HAIR. Its been 2 years since it started growing back and I took piks of my hair on new years day. Its about a foot long now.
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musical...I just had my first haircut 3 weeks ago at about 9 months PFC...she cut about 4" off. I haven't coloured my hair since chemo cause I had to go gray eventually (I am 69) and figured it was an easy way of avoiding the roots growing out. I am quite pleased with my new colour.
As for the forgetfulness, sometimes I think I am just lazy and not searching for the word I want hard enough.
It all stinks but as my DH reminded me, I was kind of starting to forget words even before BC. All in all, I can't complain too much. The stylist cut my hair in a "Jamie Lee Curtis" style and she showed me how to make it appear thicker by the way I blow it dry. Usually I don't bother...
Other than the core biopsy (I considered that the WORST thing of this whole experience) I can't complain too much. So far I am handling the switch to the generic OK. Losing my hair was weird but I stayed in the house as much as I could. I wasn't working and mostly went out for chemo etc.
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