Life on aromasin
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Well, after 3 mos on Arimidex, and feeling like I was 100 yrs old, I had a two week break and then started Aromasin. I must say I have settled in much better. Now, I didn't get funky on Arimedex till the third month, so I am cautious as I am in my third month of Aromasin, but it's better. However, I pretty much have to take Advil every night since otherwise I wake up with pain in hips,arm, etc. We will see. Sigh...
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Shayne, it sounds like you have already made up your mind what path of treatment you wish to follow but for some reason feel that you need confirmation from those here on the board. Each person has tried to share their personal experience with you not to make you change your mind but to provide more information in making your choice yet you have shot down everyone with your own rational. I don't know if you are getting pressure from family and/or friends but this is a personal journey and your decisions should be based on your needs not theirs. Myself, I'm willing to try it all if it decreases the risk even a small percentage, after all the percentage of having this was pretty damn small. I'm still in disagreement with my ON regarding chemo but that is my own issue.
You wrote a beautiful statement with you bio, read it again and I think you will have all the advise you need.
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Ray, I have been on aromasin for 6 months now. I'm just know starting to get some mild hot flashes but have been post menopausal for 23 years after hysterectomy. If any other SE I'm not sure as I've had a hx of depression long before cancer (who wouldn't have depression after receiving cancer dx), I've always had problems sleeping which only got worse after working nights, and I have chronic lower back pain from degenerative disc disease but also been an RN for 27 years and will be turning 63 this week, go figure! It will have to get a lot worse then this to stop ALs.
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Youre right. with my SEs increasing- joint pain, depression, heart palpitations, headaches etc - and being in a lot of pain right now, all I can think about is what kind of damage this has done to my body, and will i recover. The thread is life on aromasin, not I love aromasin. But I will take this thread out of my favorites. There were a few people who msgd me wanting to know what my Onc says - I will come back and post that info on Feb 7th. Im not sure if I am going to stop all hormonal treatment. Not the time for me to make that decision without the guidance of my doctor and while I feel this way. Sorry my negativity came thru.
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Shayne, sorry you're feeling low. This is such a tough hand we've been dealt, it's no wonder many of us are on antidepressants, SEs from hormonals aside.
I've been following and posting on this thread from the beginning. I know how positive you were about Aromasin initially, and how hard you've tried to make it work. Whatever you decide I'm sure will be well thought out. Although I am not having any significant SEs from the medication, we're all different. I also wonder if age is a big factor. Seems to me the younger women suffer more. Please keep posting, you're a voice of reason here!
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I certainly don't want you to stop posting, I admire your courage and want you to know I support what ever your decision is. It wasn't your "negativity" but your pain I was addressing. Reading between the lines it is appearant what you want and I hate to see you continue to beat yourself up over what may be outside enfluences. If there is one thing I have found since my dx is that nothing is ever written in stone from physician's advise to our own feelings making it very important for you to continue to reach out on this link and any other you are on. I certainly don't want you to feel rebuffed because most of the time this is the only place we can reach out to people who truely understand what we are going through and all the emotions that come with it. I have often felt invisible on this site with only a few sincere responses (for which I'm ever grateful) but mostly receiving what appears patent response that I hear from family and friends at home. I live in a remote and rural area where under the best circumstances getting together is difficult, have only lived here full time for 7 years so do not have life time friends and don't really know anyone who is also going through this. I had hope to be able to make friends with otheres going through similar circumstances so I could expand my knowledge and have the opportunity to vent (I seem to fall back on the accepted response of "I'm fine, doing great" to prevent my family from worrying and trying not to be a rock around their necks and most people really don't want to hear how your are). It's not as bad on this thread as it is on others but I'm sorry I've gotten off the subject which is you.
I just wanted you to know that I admire your bio line and from reading your other post you have lived it through most of this journey. Its so easy to be derailed and I think we have the right to have our negative thoughts at times. Tell others to keep their happy faces on 24/7 after they go through what we have. We are here to catch you and support you through your negative periods not to push you further down. I just wanted you to know that your decisions may not be my decisions but that is neither right or wrong and that we support you. You are beating yourself up worse then anyone else but we support you because we've all been there. I hope this has helped and I hope you don't leave.
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Thanks. Its been really really hard lately. My husband is having a really hard time with this, and no matter how i explain, he just doesnt get what im going thru. I dont expect him to. Even our own journeys here on these boards are individual. Like my sister and fellow cancer survivor told me yesterday - we are alone on this journey. No one can truly understand unless they have been there. My husband sees this as a way of me isolating myself.
I truly had no idea how bad my situation with the SEs was.....I was not functioning, not sleeping, not able to participate in relationships with my husband and daughter. I didnt realize until i sat down to write the list of SEs for my ND appt.....and the list just kept going. I reread my posts on this thread, and realized it started 3 mos in. Mild at first, then progressing. I am afraid to NOT be on HT.....im sure you all can relate.... Right now, all i can think about is getting this med out of my body and feeling something similar to my pre dx. IF thats even possible. I really dont think my Onc is going to suggest i continue or try something else. But I respect her decision and will hear her out, and come back and share with you guys and ask your opinions. Today I am not in a place to make a decision. Im just hurting. Im hurting physically......and emotionally. Today is my friends celebration of life. She had stage 4 mets bc. Leaving 2 small children behind. It has shaken me to my core - I know you guys can all relate. So all of this.....all at once.....its a bit much.
I have always gotten amazing support from this board. Always. Ive even made friends. I am not one to throw a pity party for myself. Again I apologize for the negativity. Ill be back. You guys have all been a lifeline for me. Dont ever be afraid to express your opinions. I hear them. I reread this whole thread yesterday, looking for others going thru what I have, what they found to help, etc. It was so worth my time.0 -
Oh......and thanks Yorkiemom for your comments - Ive been following your posts on other threads as well as this one and you are always so supportive and generous and honest - It hasnt gone unnoticed!
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Shayne - this whole journey just sucks some times. Too many decisions, too many meds, too many side effects - it is nothing we are prepared for but we have to find out way through. My sisters are both nurses, I have a medical background, and it doesn't make the decisions, the pain, the suffering any easier.
I decided on chemo, rads, meds but I'm IIIc and needed to be aggressive. There are 15 different kinds of breast cancer and you have free reign to make the decisions that are best for you based on your particular situation and what you can live with. If my cancer returns I just may decide against treatment - I won't know until / if that day comes.
My routine was to gather all the facts - crawl in bed and cry awhile - then get up, clear my head and figure it out. I found a lot of comfort/release in tears and I let them flow freely when needed.
It is a personal decision but cancer didn't just happen to me. It happened to my family and friends also. Talk it over with your family until your head is clear and then make the best decison foryou.
Consider yourself <<<hugged>>>.
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(((SHAYNE))) Please don't stop sharing--I read all the post tho I don't always respond, but I follow everyone and I really don't thing it's negativity, it's confusion and believe me I have been and still confused from day one and I hate these SE.But I feel like this one is the est for my situation so stupidly I stick to something. I don't know what I'm ever doing but u guys really think it thru--so ood for u.
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Im here.....ohio4me - that was a beautiful post - and so wise.
camilegal - I wont stop posting......living life to the fullest - with grace and dignity - striving for that in honor of those who have faced this battle and may not have been cured, but have surely been healed
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Shayne - I may have said this before, but after trying all three AI's, and they all have the same SE's for me (much like yours) my MO suggested tamoxifen, but I feel that the AI's are enough better that I didn't want to take that risk (stage IIIA), but it might be an option for you. Also, I take narcotic pain meds so that I can function on the AI, many people wouldn't do that, but it works for me. I hope it works out for you, I understand what you're saying about your husband not understanding. The last 3 years have put a strain on our relationship at times because I'm not able to nearly as much as I used to, but we're working through it. Take care and God bless you - good luck with your decision. My PCP has actually been more help managing the side effects than my MO has been.
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Lynda and Shayne I'm on pain meds to or it woud be worse--I've always been a not even aspirin type of person LOL Now whatever I can take I take--my pride has been stripped.Some days it's better than other days so what else can I do---I just do. hahaha
I'm glad u'r staying on Shayne u don't realize sometimes u ask things that I'm thinking then it gets answered so u help me too.
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I just came back from ten days in the caribbean. I found I had less joint pain so I'm guessing that the weather has something to do with how we react to the AL's. My main problem seems to be my temper. I was always pretty balanced before the Aromasin but now I fly off the handle quite easily. Hubby tries to be understanding but he gets frustrated that I don't roll with the punches better.
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ptdreamer - that temper sounds like me before Paxil. I was either depressed or had no ability to cope. Interesting about the weather and joint pain. i think my joint pain is less (mid winter in Ohio) after 10 months. Hoping that is a forever change.
Anyone notice thinning hair on Aromasin? I can't decide if my hair is still changing due to chemo or if it due to Aromasin. It is baby fine and I don't know if it's thinner or just finer than before. I gotta say - bald was pretty easy
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ohio4me,
My hair is thinning on Aromasin after two months. I was on Arimidex for 6 mo and it had grown back well from chemo. Stopped because of another SE.
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My hair thinned at about 2 months on Aromasin. I started talking Biotin and can say the thinning has stopped and I'm getting new growth and the texture is better. My ability to cope with everyday stuff has been aleviated with Wellbutrin xl. Husband calls it a happy pill. I call it my lifesaver:).
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Haven't experienced hair thinning on Aromosin, but...I was experiencing significant thinning around 10 years ago. I started oiling my hair, using really good, salon exclusive shampoos and conditioners and taking Biotin (originally I took the Biotin for my nails, but it found it works for hair also). Now, at 64 my hair is as healthy and thick as it was in my 20's or 30's. Age, medicine, and disease take their toll, but we can fight back the effects for a long time!
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I'm so sorry some are having such bad side effects.......For those of you with joint pain, I read on the boards that taking allergy drug, Claratin, has helped. I had joint pain after 2 months and called GP for prescription . I thought she would think I was crazy, but she actually said she had several patients who said it helped. After 2 weeks of taking Claratin, joint pain is almost minimal.
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Maybe we should start listing the side effects we DON'T have, it might make for a happier picture!!
I don't have -
Thinning hair
Weight Gain
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Seabeal, I'm sorry you sometimes feel invisible on this site, I think a lot of us read a post and think - wow that's great info or what an inspiring post and then forget to respond (AI steals your memory lol) or just get too busy. I think your posts are well thought out and helpful.
Shayne, you have many options and have been given a lot of advice. I'm really sorry you have such crappy se's on Aromasin. I feel for you, as I was at the point you are now when I was on Arimidex. I had a 2 month break from Arimidex before starting Aromasin and was feeling so good, I was very fearful of starting another AI. I was at the point where I thought I was either going to be sacked from my job, or I would have to quit as I just wasn't coping. For me Aromasin has been very gentle. But if it had the same se's for me as Arimidex I would have tried Femera and if that was no good I would have gone for QOL and taken nothing, even though I'm around 98% ER+. You have to make your own choice, we are all different and yes - it is a very lonely journey sometimes.
I too have hair thinning. At first I thought it was Herceptin, and while H really slowed the growth of my hair, once I finished treatment my hair took off and grew like a week, but it has never gone back to it's original thickness or texture. I used to have my hair thinned every six weeks when I had a hair cut, I haven't had it thinned since dx. It is very soft now too - which I like, it was kinda wiry before lol. But it is noticably thinner than it was, and that's the Aromasin.
I wish gentle se's for everyone.
Trishxoxoxo
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Seabeal I'm sorry u ever felt that way, but it's not tru I read all the posts, then when I go to say something if u'r not the last post it's out of my mind. So don't stop posting.
Ah aromasin--the good things about it---hmmm-----hmmm-------hmmmI'll have to get back to u on this one.
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Biotin! Does it help your hair grow faster? Hope so. My multi has a little bit but maybe I need thousands of mgs or something. 7 mos since last infustion, and my tufty springy curls can't be organized.
SEs: I'm now 2.5 mos on Aromasin. My doc offered me Lexapro but I was not sure about taking it. I'm fine at work, get stressed and anxious at home. Take occasional Ativan. trying to figure out sleep, was waking up with limbs and hips hurting. MO had me take advil before bed for a few weeks but I don't think it did much. I'm trying to not take Ambien and see if I can get sleep not to be a drag.... see my MO Thursday for check in.
If I am only 30% ER pos, is this AI really that helpful?
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try benadryl (generic) to sleep. it works good for me. I only take it on occasion.
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Had to think very very hard.....
I dont have hair thinning or hair loss. And if you saw my crazy thick curly crazy hair......you would crack up! Its snowing and raining and my hair is a big poof..... Its 1/2 way down my back, but in a bun today....
guess there is one SE I didnt get......
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The onco told me fish oil for joint pain. Actually 2 oncos told me that. I laughed and said "my joints need to be oiled"?
For someone who doesn't trust pills this is not very easy. But I'm taking it.
Oh how i'd love a "happy pill"! lol Lexapro made me clinically depressed. Just sat still for a week. Lost 10 pounds which was good but weird. As soon as I went off of it I felt great...depression gone...so I guess you could say it worked in a way! I was so happy to be off of it.
I can't take effexor because i have high blood pressure.
Paxil made me see things. Feel weird. Nauseous.
The onco told me excercize, excercize, excercize. I know he's right. I tried to walk today and made it thorugh half a block. My legs hurt now. Don't ask! Something new every day! But as long as it's not the big C, I'll cope!
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Timbuktu---u r so right eeryday is a surprise LOL
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For joint pain - everyone always says exercise and that has never been a part of my life
. However, I finally broke down and went to personal trainer back in November. I believe it made a difference in my knee pain but it could have been the arthritis pain it helped and not the aromasin pain. Either way - I did see improvement in overall well-being and strenghth.However, once again, I was not consistent and got derailed over the holidays. I also travel with work so it makes it difficult to have a routine when my schedule is irratic. Okay so those are not really good excuses since I have a treadmill at home and a home gym in the basement and most hotels offer the same. Argh - - - it's just me not taking care of me.
In October my sisters walk in 3-day (60 mile) Komen walk - I want to meet them at the finish line. In Dec I turn 60 - I want to be moving better than every before. I have some good goals - but life just keeps getting in the way. Maybe if I distracted myself with exercise the SE's really would be less?
Before I embark on yet another 'get more healthy' journey - can anyone confirm that exercise really will help the SE's - any of them? I'm laughing at myself - I don't want to waste time on exercise if sitting on the couch gets the same outcome!
Okay - back to work. I work from home (yet another reason I could be on the treadmill) but don't feel like working much today.
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I exercise 3-6 times a week.....it DOES help with SEs - depression, joint pain.
So does walking in nature. Ive exercised thru this whole ordeal. It got harder and harder, but Im still going..... If I had a day that I didnt go, SEs were definitely worse, because I was so much more aware of them. Then youre adding weight gain to the mix, which is its own curse
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I struggle with exercising because I am lazy, lol! I do it but not enough. Been waking up at night lately with legs hurting. Goes away though when I get up and start moving around, which just proves how much better it is to not be sedentary. Wish I would listen to my own advice!
I take an individual Biotin pill. I also take a multi, but there's not enough in there to make the difference. About 4 years ago I asked a pharmacist what to do about my weak nails. He recommended Biotin. Worked like a charm. My nails are now very strong and hardly ever break. Biotin is also great for hair.
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