Life on aromasin
Comments
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Mary, they don't guarantee we will not recur. They just increase the odds in our favor. A lot of it depends on how ER+ one is. If one is, say, only 5% ER+ then the drug does not give near the benefit as it would to someone who is 100%. Also, I would think other factors such as degree of nodal involvement, size of tumor, Her status etc. would factor into the equation. Sorry you recurred! (((HUGS)))
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Yorkie - i was just going to comment that yes - it IS different to be stage 0 compared to stage 1 or 2. Not quite sure if I would make a different decision - there just isnt any way I could of stayed on it feeling that bad, with heart palps. I know a lot of ladies take drugs to counteract these SEs, but thats not something I want to start at this point in my life.
Its a hard decision for sure.....I think talking to as many people as possible, professionals and people here who have taken it, maybe a ND who can suggest protection with diet/nutrition etc. So that you have a complete picture of what you are dealing with.0 -
But they are called "lymph nodes". I assume that means they filter lymph.
You know what? We all only have today. I'm going to try to enjoy it! Hope you all do too!
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Shayne, I totally agree. Some people simply cannot take these drugs. That is true of all medications. A certain percentage of people just can't do it. Als are no different.
Tim, I've never heard the term "filter nodes." Glad you're having a good day! I am too. ((((hugs to all my sisters))))
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Shayne if I had heart palps, I know I would stop that is so wicked to have---I get those on almost all pain meds (my sister too) and we can only take a couple of types of pain meds. so I think I would do the same thing as u are doing. Cuz whenever a Dr. wants to give me pain meds and tell me what they like it's a big no to them.I think that's why some decisions are made for us in a different way.
But whatever decision anyone makes will be the right one for u, cuz we are all responsible for ourselves and we got this far so do what u'r inner self tells u--well that's what I do. Right now I'm still going thru being pushy with Drs. which I never was so it's difficult for me, but I have to be so we all do what we need to do.
And Tim I'm glad u'r feeling so well. And I really don't understand the idea of lymph nodes--altho I've had alot taken and alot with cancer maybe that's why I got all the chemo I had IDK, but if they took more than what was infected I want to think that'll work fine. Like a string of pearls, they say. Oh well Oh and one more gripe I hate studies--I mean I don't know where the people are from, they're family history so that makes a difference to me--If they lived around a nuclear plant that might make a difference--I know I think weird. LOL
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Camillegal - I don't think you are weird about your feeling involving studies. I hate them to. Lets face it, we are all just a bunch of lab rats. All these studies are on going and the decisions made based on them are based on the results they have obtained to date. You are right in questioning patient and family history as this does effect the outcomes of these studies which could effect expectant outcomes for individuals. I know that they have to have studies to improve treatment outcomes with research but it really makes me mad that a lot of us are not clued in to how our doctors made their decisions, if we agree to be a part of these studies, and/or would we perfer a more traditional treatment plan.
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I don't think you think weird at all cami! You make perfect sense.
I once called the health dept, years ago, because we live not far from overhead wires. I had a long talk with one of the officials there. He said that yes, there was more leukemia around overhead wires (a boy across the street had leukemia). But they don't know what it's from. They spray herbicide under those wires. People move. Some people use a hair dryer every morning which emits much more electromagnetic radiation than the wires ever could. He went through all of the variables and he said, in the end, they have no idea what causes the increase. A friend of mine just bought a house and had the radon tested. Lots of radon! I mean, it's endless! But in the end, I want to move! Should have done it sooner.
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My MO has been wonderful regarding side effects. Last November, I was depressed and couldn't shake it. That is not me - I am a positive upbeat person. She put me on Paxil - said the literature states patients on AI's are undertreated for side effects. I think we know that
Fortunately, my onc listens, explains, and helps. She is a breast cancer survivor of 15+ years - maybe that is why she is so patient centric.I still get some knee pain which I think is tendonitis from Aromasin (had same thing with Femara but much worse). My PMP gives me Meloxicam that I take as needed. Can't say I like taking pills but it beats suffering the side effects. Better living through chemistry!
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My Sloan onco did immediately write a script for anti-depressants. I guess she'd seen it so many times before. But I don't react well to anti depressants...they make me depressed...so i didn't have it filled.
I didn't know there was a way to relieve the pain in the leg.
The main issue was knowing that it WAS a side effect and not something worse. Now that I know, I can handle it differently, I hope.
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Oh Ladies u made my day--u don't think I'm weird on this--I have been atacked on my theories LOL But I always think of underlyin things when I told stuff. Oh well, I'm just glad u understand me.
Ohio maybe her cancer has changed her somewhat, but for the better for her patients. I'm glad she litens to u that's 1/2 the batrle is to feel good about ur Dr.
Tim I've always said if u know what something (pain) is from it feels better mentally. U'r then not filled with anxiety, well u still have pain, it's just different.
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One week on lexapro and I am feeling much better. No heart racing, no super bleak thoughts, more able to accept imoerfection, say "it'll probably be fine, had some very light cheerful moods too! Keeping up my exercise and meditation class. Both important but I was doing them before. It us different now. Hope I stay lucky.
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Shayne,
Did you quit "cold turkey"? I haven't taken it for three days. I still haven't made my decision but have decided I need a little vacation. Will I notice any changes while off it?
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I did quit cold turkey after being on it 7mos. The first week the SEs (which were severe) got a lot worse. Then slowly over past 3 months have tapered off. I have some joint pain in my wrists but Im working thru it. If your SEs arent severe or you havent been on it very long, you might not notice anything......
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I don't know what's from anything anymore cuz in the last 6 months (u all know) but since my vertabrae and 2 discs are in deteriaion, and I have chronic bladder infections, severe arthritis low on potassium alot and mag. chronic diarhhea--who can figure anything out--BTW I had none of this before. So what can I blame anymore? I have to say my D has lessened since I'm on a stronger pain med--and that could be why, but I still have it.I/r ready to just throw my hands up---but then (i forgot what u call it) in my left shoulder so that's painful--so I can't even throw my hands up LOL
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Hi ladies. I've been on Aromasin 25mg since September 2012 and {thanksfully} have had NO ill effects. I tried Tamoxifin for one month thinking {and hoping} the awful side effects would get better. Finally stopped when I could barely walk .. my knees hurt so much.
Needless to say I was VERY hesitatnt to try another therapy, but I agreed to give Aromasin a one week trial ... the Tamoxifin affects were immediate. She suggested Claritin with the Aromasin. Apparently some people have reported it helps with the joint aches. I tried both cause I have the additional problem of Rheumatoid Arthritis. Right ... already experiencing joint pain and adding a medication that is known to cause joint pain ... duh. But I gave it a try and it has worked. I dropped the Claritin after a month just to see if I would notice any difference - None!
I was warned that Aromasin may deplete vitamin D and calcium from my system so I was tested for both. Bone density is normal but D was a little low so I'm taking some daily.
Like EVERY medication, you have to try several and find what works for you. We are all similar though different, and so are meds. I would encourage you to keep trying new/different meds if one doesn't work for you. Good luck everyone!
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Hi Heidi---I hope u come back and post more there are such nice women on here and we do have some fun too.
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Today I saw a new Onc outside of the VA hospital. She gave me samples and a script for Aromasin/Exemestane for a trial period. We're hoping it will help with the hand/foot joint pain.
Additionally today I saw the Rheumy for a follow-up. I'm hoping to have less SEs from this than the Femara/Letrozole. Unfortunately, have been dx'd with Seronegative Rheumatoid Arthritis. My hands and feet were hit the hardest. Will be starting Plaquenil within a few weeks also.
Sure hoping for good things and if Aromasin isn't right for me at least we'll know.
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Gal, was the arthritis a result of meds?
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I started Aromasin Monday morning. By tonight (Thursday night) I haven't had the least bit of difficulty with it. I am really happy I have NO SEs but wonder if I am singing Hallelujah prematurely. When can I feel confident that this is really going to be easy for the next five years?
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Ironically, I already had previously had suspected RA in one hand and one foot decades earlier - it's just never really reared it's ugly head until now. Over the years, Rheumy treatment was contingent upon test results - the thought process of if you're negative result then you don't have RA. Thankfully, this Resident and Attending fully recognize that Seronegative is an entirely Clinical dx. In that vein, I've likely had the Seronegative for a very long time, just not recognized or treated. Since then, add the shoulders and spine and knees into the mix.
The Attending is the one knows that Femara can cause inflammation of the joint synovial fluid, thankfully! The prior Onc acted like it wasn't an SE to have Synovitis from Femara. The new Onc was better read on the issue - hooray!!!
Most likley, since I've had the RA and OA underlying in me for several decades, Femara struck quite hard.
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Inflammation is supposed to be a bad thing for cancer as well as everything else. Yet femara lowers rate of recurrence? Very strange. I'm wondering how much of my aromasin pain will stay. Since I've been off it I feel much better but still far from normal.
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Caroly I hope u stay SE free for the whole time u'r on this. Honestly the first month I felt OK--then not so much but everyone is different.
Galsal U'r really going thru the wringer with all of this, personall I think all the chemo we get just makes things worse and following with more drugs doesn't help-(just my opinion) when I started I had some arthritis no I have vetabrae and disc deteriation and loaded with arthritis all over and more things. So it seems all of this does a number on a lot of us.
Tim I heard or ead somewhere that part of aromsin stay in u'r body for a while, not the full effect but maybe there is some reacting in u. ????? But I'm glad u'r feeling better tho.
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Best wishes to the new Aromasin sisters. I have been on Aromasin for over a year and the SE's are minimal and manageable. I started with Femara and the knee pain was bad. I do have some arthritis (before SE's) which is minimal and either the arthritis or SE flares up on occasion to cause increased knee pain. Meloxicam settles the flare up nicely - I only take Meloxicam as needed, not regularly.
My skin is getting dry - that would have been normal life event, it's just happening sooner. Lotion helps - lots of lotion.
My hair thinned a bit on top. Cut my hair short and sassy and the thinnest is not noticeable. Doesn't seem to be getting any thinner.
I'm trying more activity to see if the knees will be happier but I'm not getting younger so maybe I should be happy if the knees don't get worse - mostly arthritis stuff I think.
The best part with Aromasin - my tumor markers are good so the stuff is working.
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Camillegal, what area of IL are you? Graduated from Wheaton North HS. I'm one of the blessed ones in that there was no chemo or rads for me. Oncotype was a 12 and the ILC wasn't as big as they expected so with a BMX no rads.
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The SEs didnt kick in for me until month 3.....gradually getting worse to severe the following 4 months.
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You know, I've been dealing with arthritis since I was 22 years old and am now 53. Some years were better and some worse than others. When I told Dad years ago about the RA, since I had to find out from him what kind his Mother had (RA, severely crippled from it) he was like oh you're going to be a bitch to be around when you get past 40-50. Little did you know Dad, little did you know. Can't even share that laugh with him since he died in 1992.
Many times I feel that I'm one hell of a wimp about the aches and pains. Then I remember how many decades I've dealt with this and realize I'mnot such a wimp after all. At least IMHO that is.
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My SE's didn't kick in until 3 months later....lots of hip and back pain but manageable with Tylenol . Hip pain mostly at night when I lay down or when I'm sitting.
If it keeps the monster away, I hope I can continue to deal with the SE's.0 -
Galsal U not a witch, u should see me I'm a bitch and I don't care. LOL
I grew up mostly in Villa Park, then moved to Lombard now I'm right outside of Wheaton so I know the school u went to LOL I went to Willowbrook so we'were pretty close at one time.--Now did u say u didn't have rads OR chemo??? If so that part was good. But u'r on Aromasin tho. Well it hasn't treated me very weel, but neither did my chemo or rads so I'm consistent if nothing else. Well actually the first 4 months of chemo I did continue to work full time (as much as I could) I was holding my sick days--then after my surgery went back to chemo then I didn't work at all. So Now I'm retired as well I should be--my brain is one piece of lint so I could not do my job anymore--hahaha I could pictre me trying to make decisions now--I can't even decide what to watch on TV anymore. How long have u live where u are?
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Camillegal, lived in Mt Prospect at Busse and Dempster. Went to Dempster Jr High when in 6th grade. Lived in Rolling Meadows, went to Carl Sandburg and Robert Frost (can't recall which was elementary and which was jr high).
Lived here since early 2003 in this city now. From 93 to 96, lived in Clearwater. In between, lived up in Detroit burbs where family is since had no more famiy left in Chicago area. Both times moved down here it was to be with family.
I understand about the brain part. My job is in I.T. and unless directions aren't written down I can't always remember what to do or check. Thankfully we have RNs in the company, let alone right in my office. They made it clear to my Managers that there's no question of my brain having been effected by two major surgeries, one quite lengthy, let alone the total loss of estrogen and such. Don't know how long that will be excused and tolerated but will work with it as I can.
Just saw the recent Estradiol lab result - it was a 2. Between the Lupron and AI guess the job is getting done. No wonder the arthritis flared up with a level of 2!
How have your SEs affected? I'm soaking up the good and bad from others.
Thanks!
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Hello, Kaapo...me too! At least we're both in the same State though.
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