Life on aromasin
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Okay - I saw my oncologist yesterday. She wrote me a script for Femara. She has left this up to me: try the Femara, take a half dose of Aromasin or stop with the medication. She said only I could make the decision that is right for me. She said " You have a low risk of recurrence. You lower it further with the anti-hormonal. But no one wants you to live a bleak existence. It is a hard decision." I will probably give the Femara a trial. I took a full dose of the Aromasin last night after a wk. of a half dose. I had some pretty good night sweats. This tells me that the half dose is not eliminating the estrogen in my body all the way. Woke up this morning quite down (my son got in trouble yesterday, needed 18 stitches and is now grounded for bad choices); Life interferes in all this decision making too.
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My Onc said the same thing when I asked her about what to do if I had really bad SEs......Its quality of life that is important - esp for those of us with children added in to that mix! You know, even if I didnt have a child - Id say the same thing.
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Hi All -
I haven't written for awhile. I started taking aromasin again right after my last post, so almost a month ago? I guess my guilt about not taking it outweighed my hatred of side effects!
Well, now I have a new problem. I think I started my period this morning! I haven't had one since my first chemo in October 2009. I had all of the tests to determine I was "officially" menopausal. That's when Onc took me off tamoxifen and put me on femara and now aromasin. WTH? Has anyone else had this happen?
I will call my doctor's office when it opens. I don't think my not taking aromasin for a month would cause this. I don't think it suppresses your period? Also, I have been taking it again. I swear! I'm only 47 now, so I guess it's not so strange for me to have a period. But I haven't had one in 3 years!! One of my sisters had a hysterectomy in her early 30s, so I can't use her as a judge. My other sister went into early menopause around 38. So, while I am pretty sure chemo threw me into menopause, I just wasn't that surprised about it.
I have an appointment with a uro-gynecologist at the end of this month because I was going to have a hysterectomy and the bladder sling operation, so maybe I don't worry about this too much? I wasn't going to have the ooph, but maybe I just add that into the whole mix.
Mixed feelings about this. Having a period is a pain in the butt, but I have to admit I sort of "missed" it. And since the suppression of estrogen is why we are all going through this, I also feel a little disturbed. Have you heard of this happening?
Laura
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The Ooph. would help with the estrogen problem - apparently some remains and if you are ER+ that is a problem.
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Thank you for your support. I am trying to remember....what are you taking?
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Mybee--oh I hope this works better for u---Aromasin is so hard on alot of us and in a way I hate when they say it's u'r decision. u know I don't know a thing (my fault) I always have asked If I was u'r mother and u really loved u'r mother what would u sugest to her and usually (at least to me) they seem honest in their answer and I go by that. Any decision to me is so confusing but u are so informed that whatever decision u make I'm sure will be the right one. But Kaybe has a good point about waiting if aromasin is still in u'r system and u take another right away maybe it might start harder on u.??? Kaybe is another that knows loads.
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mybee - good luck with the Femara. It made me hurt but didn't make me feel crazy. Arimidex is making me feel almost as crazy as the Aromasin did. My husband and son tell me my eyes glaze over when I feel like I've turned into a stranger in my own body on this stuff. I'm taking myself off of it until I hear something back from my Onc. Keeping you and everybody in my prayers today for a better day.0
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I wish they knew why some women have bad SEs and others dont........but first I want them to know why we get BC!
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Shayne, my surgeon told me right off the bat, there are some things they know can cause breast cancer but there are a thousand they don't. She told me not to beat myself up about doing or not doing something that I think might have caused or contributed to it. Are you still doing great on the Aromasin? I sure hope so. Hugs to you.0
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Shayne u r so right--and if they knew about how to erase cancer none of us would feel the way we do. It;s awful, and no one gets it but us--so u'r safe here to say how u feel and no one will think oh yeah right u look pretty good.
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I just heard from doctor's office. They want me to do bloodwork tomorrow and come in to the office on Monday. I'm off Aromasin until further notice! Yay! But I think that means I'm back on tamoxifen again. Boo! Unless that's not what this is. I will be anxious until Monday.
I hate hate hate that every time something out of the ordinary happens or I get a cold or sore throat, my immediate thought is that the cancer is back. I don't think that will ever go away.
L
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AZdiva this must be Dr's call day LOL me too. I have more tests next week and my GP wants to see me and another Dr's nurse wants to check some things out for a test for me and I;m freaking out hahaha I don't like Drs. and I always tell them I'm just using them.
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Still here.......still doing fine on Aromasin. No SEs to speak of. I think Ive gained a little of my weight back....but other than that, nothing to complain about. I changed up my diet, and I exercise everyday. And I have a lot more love and joy in my life, lots of gratitude.
Frustration with the medical world and cancer will never go away for me. I pray for those with stage 4 cancers...... I hope in our lifetimes, things change.
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Cami dear - what are your tests for? What kind of test? What's happening?
Shayne - now that I'm back at work, really having trouble exercising. So tired.............thinking of getting a stationary bike.
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Great idea!! I also bought some resistant bands.....during the winter there are times I cant get to the gym because of snow - and they work really well. Got them on Amazon
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Oh Mybee it's really so boring--Well I moved and changed all my Drs. but before I did I was in the hospital 2x for goofy Blood counts--anyway Now they thing y kidney (1) and heart ight be having some problems and it could be from all the yrs of chemo and rads, plus a few operstions and like most of us had rediculous complicstions---the type the Dr. had to look up and now I hace new Drs. and they are looking up all these SE that happening now. My body is crumbling LOLIn the weirdest way--Now the funny thing is my sister Stae IV has other things going on and everything she goes thru the her Drs. are always saying this is unusual--We laugh so hard because this is exactly what happened all the time to my Dad. It was always things that. We said our goodbyes to my dad at least 8 or 9 times--it got to the point where the Drs. had to think we were awful or our Dad was a miserable man cuz no one cared and all we did was laugh--My whole family is goofy like that. OK I have to tell u this. One of the times the drs. said he had some kind of crazy cancer and it was very aggressive and he would make it thru the night and he was in a semi-coma and talking but not in Englis. The dr. said to my mom I'm sure u'll understand thenurse said she understood a little but he was speaking Polish. We all started laugh so nhard and my mom finally says he doesn't know polish he never spoke polish. And we went in to ICU and he was out of it and sounded like polish??? So the Drs. told us we could stay thenight and we said Oh we have a wedding to go to and my mom said don't worry--he'll wake up in the morning and be fine and I'm shaking my head in agreement with my mom and we went to the wedding. And the next morning my dad woke up and was ready to o home he was 100% fine and they did some tests didn't see what they saw the night before and he went home---so my sister and I hope we take after my Dad cuz he lived to be 96 and just died during the night like he always wanted. I was critical both times I went to the hospital in the last 2 months. Oh one SE I still have is violent diarrhea and that causes everything else to go beserk,I/'ve had every test by specialists that u can think of and they say rhere is no reason I should have this--OK then I will stop LOL So I'm on the most strenth of med for this now and I still have it and I started this the first time I had chemo. So now I have another hispital. new Drs and now they're scratching their heads. I take over 20 something pills a day and the nurse calls me all the time making sure I'm taking them right and with my jello-brain I write everything down and get them ready for every 3 days--LOL it takes to long to do a full week at a time. And the saga continues--I found out in 2007 I had cancer and right now I'm NED, but the SE have torn my organs into zombies-oh and I have no active thyroid and they keep on raising that med. hahahaha Aren't u glad u asked ---I told u this is boring and I can't sleep now anyway so no one will read this cuz it's SO BORING hahahaha Oh and no one can figure out why I get fevers maybe 2x a month-it only lasts for about 24 hrs. and they can't figure thst out either. hahahaha--U'll know not to ask me anything again. Cuz I tell if asked.
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camillegal I think you are so impressive because you can still laugh after going through all of this!!!!
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" width="283" height="269" /> OH hopeful please I'm not impressive we all go thru loads--All of u impress me cuz u all know so much about all of this--u all sound like u'r Drs. LOL U really ake decisions from u'r head and heart, I just follow instructions. 0 -
camillegal, you make me laugh and inspire me. Thank you for your honesty and for sharing your story. Hugs to you.0
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Hey y'all,
I'm looking for a frame of reference on how bad the pain can get with the anti-hormonals. I switched from Femara to Aromasin after feeling like I had the flu all the time. I also had a steroid shot about the same time and I was pain free for a month or so and slowly the pain came back while on aromasin. The onc switched me to tamoxifen and it's been a couple of weeks now, close to three. The pain in my joints is really bad. It's bad when I get up to walk, to the point where I've thought about getting a cane. It also keeps me awake at night with throbbing in my hands and feet. I'm so stiff and sore.
I started this whole thing with a good attitude, determined to take the hormonal treatment and not complain about it, but I feel horrible all the time. I've read a couple of articles about people being diagnosed with rheumatoid arthritis after starting AIs, so I was wondering if everyone has pain this bad and I should just shut up and deal with it, or if I should keep trying to find some solution to it.
I hope that makes sense! Thanks for any input you can give me!
Steph
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Steph I am on Aromasin after being on Tamoxifen for 2.5 years. I had some joint pain with that. The Aromasin was horrible with the muscle and joint pain and nausea. I switched to the Greenstone manufacturer of Aromasin at someones suggestion here and it has made a difference. I still have some nausea but not as bad and some joint/muscle pain but that has improved as well. I wonder if it will take some time to get past the pain as you build up with the Tamoxifen. I know there are many studies that show that the SE drive many women away and how it is so important to stay on them. I would call the onc back again to see what you can take to help with the side effects. Keep pushing for help. I am sorry you are having to go through this.
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Thanks, hopefulhealing. I will keep pushing. I always feel guilty calling the office when I know there are really sick people in their care, but I do know I have to have some answers. It's gotten way worse in the last couple of months. My mom's friend has been on arimidex for nine years and she says just push through it, that pain is a part of treatment. I have read that the people who have the most pain have a specific gene and are probably more responsive to the meds. That should be a reason to stay on them, I guess.
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stephN---Listen to hopeful--everyone takes all this differently and the Drs. kow that (or they should) and they are more than happy to ease u'r pain, Most of them don't want u in pain so try to explain it and they should help u.
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Mybee good luck with Femara!!!! So glad you switched!!!
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Thanks, camillegal. I actually called and talked to the NP a couple of days ago and they haven't called me back. They were going to ask the onc about a referral to rheumatology. I appreciate the encouragement. I know lots of people have joint pain. My mom has rheumatoid arthritis and has a lot of joint damage. I'm a little concerned that the stress of the surgeries last year and the total lack of estrogen jumpstarted that process in me since the joint pain went from bad to worse so quickly. Anyway! I really do appreciate the insight.
Steph
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Starting my seventh week, headaches are starting to kick in twice a week.
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Kay - interesting research. I hate the hot flushes but also bless every one, as in my mind it shows the drug is working. Don't know if I could put up with what you had though.
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Hm--I wonder if having lots of hot flashes WITHOUT taking an AI means you are safer from a recurrence? I have them all the time even tho I haven't had a period in 16 years.
When I was on the Aromasin I only had one hot flash a day---it was the other SEs that made me give it up--
So I actually had more hot flashes before I took Aromasin and after.
Weird!
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What I do know is that I'm a different person on Aromasin - got my spark back, but gained weight, so it's a trade off. Our warm weather is just starting, so we'll see how the Summer goes.
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Thanks Kaybe so----------------------------
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