Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Life on aromasin

17172747677187

Comments

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013

    My experience with Aromasin was completely different. When the onc prescribed it he said  "I will give you some samples because you may not be able to tolerate it."  Hm---

    He had me start with every other day for 2 weeks, then every day. For the first two months everything went fine. I was pleasantly surprised. Then: Wham!  The SE's kicked in with a vengeance.  I stood it for another few months then stopped the drug.

  • Sickofpink
    Sickofpink Member Posts: 38
    edited August 2013

    Hi ladies, 2 months on Aromosin now after hating a month of Arimidex. Hard to know if the SE's are less or I;m just use to them.

    Would the brand name be less SE's than generic??

    RMlulu thanks for the Celebrex tip. I'll ask about that. I've tried Claritin and ibuprofin and Aleve and just am achy still, hard to type, stiff joints - not as bad as it could be, but not great. Better when I exercise, but then I'm so exhausted I cantl get much work done t pay for it all. And yes, aside from ugly short hair finally growing back after chemo, no understanding from folks and family who think I'm done (except my last bunch of Herceptin infusions and port removel).

    Lisa, how is Femara?  Worth a try? - hesitant after some of other responses. The evil you know, right? Also, I've lost weight, but wouldn't want to go the other way.

    And what is Femarison? Never heard of it.

    I feel like we are just guinea pigs.

    Soon, I have to start a bone strengthener to help with the hormone blocker thinning, doc said when I get used to the blockers, Ha. Which of those drugs is best? Weekly, monthly?

     Thanks for being here, she typed, with swollen fingers at the start of a long day of, yes, trying to write with said fingers and addled brain...and drippy Herceptin nose...and and and

    ;)

  • camillegal
    camillegal Member Posts: 15,711
    edited August 2013

    Oh Sickofpink U reminded me Oct. is almost here. OOOHHH--These SE's suck and why do people think cuz u'r done with chemo OK u'r done now everything is back to normal--Don't we wish and u don't want to explain all of this so u kind of go along as they see u limp away. LOL No one else really gets the whole picture or even the chemo part. That's why so many of us are here we all get it.

  • doxie
    doxie Member Posts: 700
    edited August 2013

    I've been on Aromasin for 9 months now.  This after 6 months on Arimidex.  My pain on Aromasin has started to subside.  I have the most hip and ankle pain after jogging, which I do to pound the bones.  Still a little aspirin takes care of it.  Today I didn't need everything.  I've heard from some other women that pain does get less over time.  With some it doesn't.

  • ohio4me
    ohio4me Member Posts: 323
    edited August 2013

    I tried Femara and the joint pain was almost debillatating. Aromasin is much better for me. It's been 1.5 years. I have some joint pain (mostly knees) but not intolerable. I sleep well, few hot flashes, dry skin (using lots of lotion) and some thinning hair. Hair isn't noticeable yet and I keep forgetting to ask the onc about taking something for that. LOL - maybe my memory loss is a side effect?

    Truly, I've seen a change in memory but.... I will be 60 this year, my mom has memory loss, and I can't decide if my memory issues are AI related, or hereditary. If hereditary then maybe it's time for Aricept. If AI related, then I just deal with it.

    Overall, life on Aromasin is nicer then Femara for me.

  • rosie06ct
    rosie06ct Member Posts: 66
    edited August 2013

    I   had very good luck on Femara (generic) ....almost 2 years of NED, the side effects were achy joints and after 3 months that lessened,However I take my HARD meds before bed so I am asleep for most of any side effects. I move alittle slowly in the am but quickly goes away. the exhaustin on the other hand lasted a month until it leveled off I just got a LOT of extra sleep

    I am on aromasin AND afinator now , major side effect is it has made me a type 1 diabetic and I have to take insulin ! butif it holds back the cancer for a few years what the hell ! 

  • shayne
    shayne Member Posts: 524
    edited August 2013

    april 485 - interesting your doc gave you 90 days - thats when my SEs got really bad and continued to worsen the next 4mos.....  wishing you good luck!

  • camillegal
    camillegal Member Posts: 15,711
    edited August 2013

    Shayne I so agree with u the first IDK really but this last yr I went from moderate problems with SE's to severe within 3 mos.--which I was being checked for all the time--Now I'm a mess I hurt so bad, but it's not cancer so I should just shut up. hahaha

  • Mariannex5
    Mariannex5 Member Posts: 20
    edited August 2013

    You also have to be careful of Celebrex.  Lots of side effects from repeated use of celebrex.  It just makes me wonder if every drug on the market fixes one thing but causes others.

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited August 2013

    I think that is the case Marianne - unfortunately. 

    You just have to weigh the pros and cons with each one. I was given a drug for my afibs which caused my BP to get too low and I passed out at home, hitting my face on the sliding door. Cuts on my chin and lips and my bladder emptied (yuk)

     They did not want to take me off the BP med because it ranges so much and "spikes" from time to time, so they lowered the dosage on the afib medication.

    I am also on a blood thinner which means any little thing, like a new RX, or any trauma, like my broken arm causes all kinds of problems. But I need the blood thinner because of the Afibs.

    I could get an ablation to try to cure the Afibs, but they don't always work and can cause a stroke.

    I could go on and on, but you get the idea----drugs are such a problem---I sometimes wish I had the nerve to just not take any. But that would be too risky.

  • shayne
    shayne Member Posts: 524
    edited August 2013

    MaryD911 - sorry about your dx......  just wanted to say that.

  • violet_1
    violet_1 Member Posts: 335
    edited August 2013

    Marianne,

    Tell me the problems w Celebrex...?

    Thanks!

    Violet

  • ginger48
    ginger48 Member Posts: 1,437
    edited August 2013

    I am on Celebrex too; what are the concerns?

  • violet_1
    violet_1 Member Posts: 335
    edited August 2013

    Ginger,

    Just wondering what SEs people have experienced...especially fatigue? Thanks.

  • Lily55
    Lily55 Member Posts: 1,748
    edited August 2013

    My ankles and feet are pretty swollen, is this an SE? I did not get it on femara and have reduced kidney function so a little concerned.

  • shayne
    shayne Member Posts: 524
    edited August 2013

    sounds serious.  There is a steroid component in aromasin.....i would definitely let your doctor know

  • Anita50
    Anita50 Member Posts: 1
    edited August 2013

    Hello rayofsun,



    I have been on Aromosin and Effexor xr for 10 years. A major side affect for me is sexual disfunction. I find sex very painful even with a lot of lubrication. Dr.' S keep telling me to use this jell try this jell nothing seems to work. I have tried everything. With that said, I am not sure what medicine is causing it because they both claim this can happen. I do get joint pain occasionally, however two Advil seems to take care of that. The tingling in my hands does happen occasionally but nothing terrible. I have to say that the Effexor xr has changed my life for the better. I get out more and socialize. The peace of. Ind that I get from taking Aromosin is worth any side affect. I wish you all the best!

    Anita



  • camillegal
    camillegal Member Posts: 15,711
    edited August 2013

    If thw swelling just started it is probably a SE, but other facts are involved, so call u'r Dr. and keep u'r legs up, u know what I mean. Alot of us have that so don't get super upset but it has to be checked out.

  • Mariannex5
    Mariannex5 Member Posts: 20
    edited August 2013

    Ginger:

    I just copied this from People's Pharmacy.com but if you just put a search in for Celebrex side effects tons of stuff come up:

    "

    CELEBREX (CELECOXIB) SIDE EFFECTS:

    • Digestive upset, abdominal pain, heartburn, diarrhea, nausea, gas, constipation, reflux, gastritis,
    • Headache, dizziness, vertigo, back pain
    • Sore throat, runny nose, sinusitis, upper respiratory tract infection
    • Skin rash (this is a serious symptoms and must be reported to a doctor immediately!)
    • Irregular heart rhythms, palpitations
    • High blood pressure, chest pain (angina)
    • Fluid retention, swelling of hands or feet
    • Hearing difficulties, tinnitus (ringing in the ears)
    • Liver or kidney function changes (abnormal lab results), kidney damage, liver damage
    • Sensitivity to sunlight (sunburn)
    • Ulcers, bleeding ulcers, perforated ulcers (a potentially life-threatening complication)
    • Heart attack, stroke
    • Congestive heart failure
    • Allergic reaction, difficulty breathing
    • Blood disorders, blood clots, pulmonary embolism, anemia"

    I have taken it myself in the past but not as a steady pain killer, just occasionally.

  • CarolynVM
    CarolynVM Member Posts: 9
    edited August 2013

    I didn't know there was a steroid component in Aromasin.  I am a type 2 diabetic and have been for several years.  About a month after I finished radiation I started exemestane (generic aromasin).  My blood sugars have skyrocketed and I'm havin no luck gettin them down.  Someone asked if I was taking steroids and I said I was not.  Maybe I am?  Could that cause my sugars to skyrocket?

  • CBrown107
    CBrown107 Member Posts: 10
    edited September 2013

    What is the steroid component? This is the first I've heard anything about it. I'd like to know if that's what I'm taking!

  • shayne
    shayne Member Posts: 524
    edited September 2013

    That is what was told to me by my Oncologist when I was on it.  I have a very hard time on any kind of steroid - which explains why my SEs were so extreme.

  • shayne
    shayne Member Posts: 524
    edited September 2013
  • doxie
    doxie Member Posts: 700
    edited September 2013

    I think we have to be careful with lumping anabolic steroids in with aromasin.  Though I've tried several times, I find it difficult to find the explanation of what the "steroidal" description means when attached to aromasin.  So maybe there is another way to calm the waters.  

    Steroids are natural occurring substances.  Here are some familiar ones: cholesterol, testosterone, estrogen, progesterone, Vit D.  

    Corticosteroids are drugs also labeled as "steroids" but shouldn't be lumped with the body building anabolics.  I was on two of the former during chemo and would rather not have to take them again.  The only steroid-like SE I've gotten from taking Aromasin was a welcome initial elevation of energy and alertness.  After a couple of months, that dropped to normal.

    As with all drugs, steriods should be used only as necessary.  Some are stronger and have more serious SEs than others.  Natually occurring steroids are both beneficial and harmful depending on the situation (ER/PR+ BC) and supplemental use (HRT).  

  • shayne
    shayne Member Posts: 524
    edited September 2013

    My SEs were severe - heart palpitations, severe fatigue, severe joint pain, diarrhea, depression, not sleeping more than 2hrs a night....and more.  Here is a more complete list of possible serious and not so serious SEs:

    http://www.rxlist.com/aromasin-drug.htm

  • CBrown107
    CBrown107 Member Posts: 10
    edited September 2013

    I wouldn't connect anabolic steroids with Aromasin. I was thinking more of Prednisone, which I've taken briefly for herniated disc pain. But I wouldn't want to take it long term, which it seems I may be doing with Aromasin! A lot more SEs with long term use of Prednisone which is the only steroid I've taken. I hope Aromasin isn't like that. Thanks for the link, Shayne!

  • shayne
    shayne Member Posts: 524
    edited September 2013

    Youre welcome!  Just a tip - pharmacists are a wealth of information about drugs - they are happy to explain to people too.......

  • proudtospin
    proudtospin Member Posts: 4,671
    edited September 2013

    I agree on using pharmacists as a great source of info.  Mine is great at keeping me from taking NSAIDS that I am alergic to.   I am just finishing up on my 5 years of Aromasin and feel that SE have been minimal.  Now the few times I took pregnisone....felt like I was junping out the window!  very dif

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited September 2013

    My pharmacist is great too. My internist didn't believe me when I said I had jaw pain with Fosamax. But the pharma said I absolutely did the right thing by quitting the drug.  The fact is, they see more things than the docs do and they don't have an agenda--

  • valjean
    valjean Member Posts: 1,110
    edited September 2013

    On my Aromasin (Exemestane) package insert it says under Clinical Pharmacology:

     >>Exemestane is an irreversible, steriodal aromatase inactivator, structurally related to the natural substrate androstenedione. It acts as a false substrate for the aromatase enzyme, and is processed to an intermediate that binds irreversibly to the active stie of the enzyme, causing its inactivation, an effect also know as "suicide inhibition." <<

    That's where everyone is getting the word steriodal from, I'm sure. I would guess if one wants to know what the steriodal compound is, you'd have to ask a pharmacist or the manufacturer. My insert is from Greenstone LLC - Peapack, NJ - April 2011.

    I do know one thing, there are different manufacturers of this drug & they are different. The inactive ingredients may be different & will have a different effect on the body. I found this out the hard way. Greenstone manufacturer works for me.