Life on aromasin
Comments
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My blood sugar also went through the roof in the 3rd week.... I now take insulin 4x a day plus one pill in the am and 8 more during the day and it is not down to 200 yet! geeze
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Rosie, how long has your sugar been sky high? What do your docs say about that? Is the oncologist aware? Have you considered a different aromatase inhibitor? I'm concerned about organ damage from this out-of-control diabetes. I fear the risk of complications from diabetes is greater than the risk of recurrence. Right now, I'm considering taking a month off from aromasin to see how my sugars respond. But that does make me nervous too.
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I found this website that says Aromasin is a steroid.
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My DIL has lymphoma and juvenile diabetes. She told me her doctor is more concerned about the diabetes than the cancer. She gets a scan once a year (probably a PET?) but takes no meds for the cancer.
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When I first started Aromasin I felt great. Full of energy and strong - I swear my arm muscles seemed to grow LOL. But----then after 2 months all the bad SEs kicked in and I had to stop. But the first 2 months were great---maybe because of the steroid component?
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I've been on Aromasin for 18 months and the SEs have almost totally subsided. I don't know about the steroid component, but if it's there I'm not feeling it.
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savgigi,
The link you provided isn't written by an expert. It's written by someone paid to write articles about many topics for about.com. It is easy to call something a "steroid" when reading a text stating a drug is steroidal-like. I'm still looking for an expert's explanation of what that phrase means.
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All of u know I know nothing medically speaking, but I don't believe the steroid componant is the same as taking steroids in any way.I think there is one factor in the drug with a componant of a steroidal group but not actually steroids. I would think we;d feel better if it were (some of us) But u know I went off of it for a while bt again my damage is bad and painful so I did go back on it and now on top of pain, I'm wiped out--It's kind of like starting all over again--I had a long talk with m Onc. and she really believes the others would be worse for me--who knows and if I told u all of this before I'm sorry I forget u I tell--They did find 3 hernias (the remotes these days) and my back is a pretty done deal, but what bothers me the most is my side since my liver has moved because my colon is moving in and my liver is being pushed up to my ribs I hurt alot--since I'm a risk for this surgery they just watch it, probably with popcorn and a coke. It's all crap.
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Camillegal, why is your colon moving, and is that an SE too? Has being on Aromasin messed up your back?
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CBrown, no one gives me a direct answer but I like so many have sever arthritis all over, degenrative discs and lower vertabrae and scoliosis, but it happened quickly, then my side started hurting and they found a part of my colon moving up my side pushing my liver into my ribs, that's real stumper, but I think all the bone stuff has to do with everything chemo and meds--cuz when this ll started I had some arthritis that's it--I just think my bones have been sucked out what they needed and I already had a hysterectomy so just my theory but when I went on aromasin it just got worse and worse--The LE I have is a whole other story. So this is not proven but I know my body never "adjusted" to it and some of it is probaby my fault cuz I never told them how bad i felt, I just assumed I'm getting older so.... but everything is a mess, and now I call my organs "the flying organdas" cuz my kidney is turned too LOL
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camillegal - so sorry to hear how badly you are feeling!! Sounds horrendous. I know when i was on aromasin, i had really bad joint pain and overall my bones/body ached everywhere......3 months off and I had no pain anywhere...... The joint pain led to fatigue and depression. I know not everyone has SEs this severe. ONce the heart palps kicked in, they took me off. Anyway, i hope things get better for you.......sorry to hear this.
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Shayne, that is exactly how I am feeling (had very mild palps though and only a couple of times) and I am getting depressed in a big way. Had a whole long weekend off work and did not move off the sofa except to do laundry and cook some dinner. Hubby asked me if I wanted to take a ride to the beach or go to the casino (both favorite things for me) and I said "no, just wanna hang out here" and I am finding myself crying easily too. I am not one of the types that crys easily so this is definitely different.
The difference between us is that my se's started within a few DAYS of taking this drug, not months. It has gotten worse too. Going to try and change brands from current one (not sure of it and I am at work) so I can see if the fillers are the cause...we shall see.
Until then, all of you stay strong!
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April, I'm sorry you are having such a rough time. It took a month for hot flashes to show up and then another couple of weeks before the joint pain and stiffness arrived. My MO took me off of Aromasin 3 weeks ago and it took 2 full weeks for the joint pain to go away. Another week before the stiffness disappeared and I just started Arimidex today.
A fellow patient said she tried Arimidex and Aromasin before she found that Femara would work for her - very few SEs. Try another one and see if it is better.
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April please talk to u'r Dr. about this AND a pharmacist what could be the best u can take, then u have an answer for the Dr.--I would
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April - sorry youre having a hard time. Did i say that already? well, i kept being told to hang in there, after the 6 month mark it would get better, or should. I hung in for 7mos. I was so depressed, I felt so bad physically, that i didnt even realize what was going on. It was only when i sat down and wrote down my SEs for a visit to my naturopath, that i realized that it was TOO MUCH. I called the Onc and she took me off them asap. Then it took another 3 months to completely feel like myself again. I was on the couch too, couldnt exercise or participate in anything in my life....... My words to you - dont wait so long. Yes, talk to your doctor.....dont wait.
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It's an anabolic steroid...
Courtesy of our AnniceMD member...who happens to be an endocrinologist. ..;)
I just asked a ? about the Al's on our thread Stage 1 premenopausal. ..;)
Violet0 -
P.s. - She explained to me on
the thread WHY Al's make your joints painful...and WHY the bone loss. ..;)0 -
The effects on bone are because the Al's work by reducing estrogen which is an anabolic steroid...
Hope I'm explaining this right. ..see stage 1grade 1 & premenopausal. ..
Violet0 -
Hi Violet
No - she said it was an anobolic hormone - not steroid
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reducing estrogen from the body can have some pretty horrendous effects.........i bet someday they will look back on this and think this was the best idea they could come up with at the time......
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Trisha,
Thank you for the correction. ..;)
Violet0 -
And the only reason we are on any of the AIs is to stop the production of as much estrogen as possible to keep ER+ BC at bay. Weight lifters and body builders are on these illegally for very different reasons.
Five years of AIs cut my risk of distant recurrence over a 10 year period from 40% to 20%. This extends to years beyond. They also reduce the risk of a recurring local or new cancer by a substantial amount. Can't remember how much but I think it is 50%.
I've got a few SEs that I've found ways to manage after over a year. I'm lucky in that I'm otherwise very healthy and active. I feel for those of you struggling with health issues that aggrevate and compound the SE of AIs.
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Doxie, I'm like you. I have had few SEs and those are very manageable. But even if the SEs were bad, being 100% ER+ and with 2 positive nodes, I would not dare forgo anti-hormonal treatment. Of course, if SEs are life threatening or so dibilitating that one literally cannot function, it is a different matter. I also feel so badly for those suffering on this drug. So hoping you guys can find some relief.
I do think it is important, on this thread about Aromasin, that newbies learn bad SEs are not always present, or even, statistically, the norm.
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With every drug you take, you must assess the benefit and risk.
Post-meno women with DCIS are being prescribed aromasin as a preventative for invasive BC. If I had DCIS and was having any SEs that were causing me even moderate discomfort or lifestyle changes, I'd probably not take it, especially if it was causing weight gain, depression or the inablility to exercise. If I had a invasive tumor with a very low Oncotype score, I would also seriously consider not taking it if the SEs were the same. I would make lifestyle changes that would decrease my chances of BC or a recurrence.
But everyone's assessment of their tolerance to risk is different. And like yorkiemom wrote, most do not have significant SEs and/or find ways to manage the ones they have without a significant loss of QOL.
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Just an added note - when i was dx last year - aromasin had not yet been approved by the fda. When i found this out, i called my Onc to question why she prescribed it - she seemed much more intersted in HOW i found out then my question. She sent me a study, a very small study, on why aromasin and DCIS...... Im not sure if it has been approved now or not, but just found it interesting that she would prescribe something that wasnt approved. She did admit that there is NO proof that it prevents recurrence.
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I agree with you, Doxie. I had a 4 mm DCIS. I am trying the hormonal therapy as a "just in case it helps" but at age 63, my quality of life is more important to me. If I were 20 years younger or had invasive cancer I might feel differently. But I will be comfortable stopping the therapy if SEs become too severe. I stopped aromasin after 4 months because the joint issues caused me to feel unsafe going down stairs without fear of falling. I started arimidex this week and hope it will be better on me.
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My diagnosis was DCIS and I am just about finishing up my 5 years on Aromasin. I have exercised the entire time and recently found a lovely little trainer who is working on his....PHD in Physical therapy with a special emphasis on cancer survivors.
I think he has proven to be an enormous help to me, when I walk in all achie, he seems to know just what sort of stretching I need to do so that I stand up all perky and straight again.
I have threaten to stop the AL but have continured and now coming to an end. My next appt is with onco on Monday, not really sure what happens at the end of this...who follows me or does anyone other than the doc who orders my mamo? That happens to be my BS currently.
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I hear all of you. Feel for ALL of us in having to make these tough anguishing decisions.
I wouldn't choose hopefully/possibly/maybe "preventative" Al's if I had DCIS alone. Just not enough evidence for ME to even consider it. And I've chosen to forgo Hormone therapy in general because of my Stage 1 a /no + node status (Syncronus Bilateral BC).
Not sure WHAT I'd choose to TRY if my Stage/Grade ever becomes higher & of course it could w a recurrence.
I respect everyone's choices here. I just pray that down the proverbial road we don't hear an "Oops--we were wrong--this or that treatment was not effective for XYZ groups & we NOW KNOW it/ they have been proven to cause extensive damage/long-term/irreversible & otherwise...or greatly lessened the QOL for many patients over several years, unnecessarily. .."
That is what scares me. And that is what we have to live with...the Unkowns...Yet, we still must choose from within the current options presented
to us. Sucks.
I would HIGHLY recommend reading Dr. Brawley's book: How We Do Harm.
My heart is to help myself & others w BC IS to stay informed. Read wide and long, Ladies. Get several opinions, research like crazy...
Take care not to assume your doc. knows everything...always question Standard of Care to make as certain as possible if it's indeed the right choice for You. Sometimes it is, sometimes it is NOT in your best interest.
And if you are a Girl-of-Faith
like ME, Pray. A LOT...;)
Bless Us All...
Violet0 -
As I have mentioned, I am having no difficulty with Aromasin and am VERY thankful to have this protection/insurance against a recurrence. To each her own whether to believe the research based evidence on the effectiveness of Als, but I will go with the evidence. There are no guarantees, but who wouldn't take a significant reduction in risk, unless the SEs were completely intolerable. I understand that for some they are.
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I could not cope on Letrozole (Femara), fine for first few months but six months on was when it got intolerable, i stayed with it for four more months and then took a break, all my symptoms, depression, problems breathing, sleeping, heart issues, joint pains etc etc stopped......amd now on Aromasin and hoping it works for me, I had no life on Femara, felt like an aged sore alien
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