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Life on aromasin

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Comments

  • april485
    april485 Member Posts: 1,983
    edited March 2014

    I am on an approved aromasin "holiday" since Saturday and boy did I have a headache for the first 24 hours or so. Now it is pretty much gone but joint pain is not...at least not yet as it has only been a few days but am hoping! What finally prompted the "holiday" was my elevated blood pressure! It was through the roof and I don't have high bp as a rule. Anyway, I get two weeks off and then re-evaluate. We shall see....

  • Nettie1964
    Nettie1964 Member Posts: 627
    edited March 2014

    Wow. april485 at least your MO acknowledges that the High BP can be from the Aromasin, I've never had high BP before and since starting the Aromasin, I too, now have it!  All my MO said was that I needed to see my PCP to get meds for it!  Just what I wanted to hear, add another med, but guess what, I did just that, but BP is still somewhat high, and is just now starting to come down as I too decided for myself to take a break and today will be day number 10 off the Aromasin!  I'm also hoping to see an improvement in muscle/joint pain!  If I do, I will return to MO loaded for bear with the results!!

  • april485
    april485 Member Posts: 1,983
    edited March 2014

    hey Romies! (tee hee, love that whoever made that up) I am on day 4 of my aromasin "holiday" and this morning was the first time in almost a year that when I woke up, I did not have "claw hands" and did not have to slowly pry them open! They were open on their own. WOW! I have less joint pain in general as well. Going back on that little pill is going to be so hard even though I know I must at >95% ER+....grrrrrrrr! Anyway, going to enjoy my little respite and see if my blood pressure comes down when I see my PCP on 4/4. Have a great day!

  • corky60
    corky60 Member Posts: 453
    edited March 2014

    I know someone who takes Arimidex and sleeps with her fingers wrapped around water bottles so that her hands aren't claws in the morning.

  • doxie
    doxie Member Posts: 700
    edited March 2014

    When I had problems with carpo tunnel, I trained myself to keep my hands flat.  I'd kept them in fists when sleeping before that.  Now I can relax them when I sleep and keep from waking with claw hands.  Can't do that for my trigger thumb.  It seems to be a different type of problem or it is too far gone.  My point is that the mind is really powerful for controlling what your body does during sleep.

    Edited to add that I also trained myself to not grind my teeth in my sleep.

  • beau
    beau Member Posts: 149
    edited March 2014

    Hi All.

    I just thought that I would chime in with some positive thoughts. I have been on AIs for 3.5 years now (yeah, sort of, lol) and I have concluded that I have good stretches and bad ones and I can't always figure out why. Right now, things seem to be better. My biggest problem has always been the arthritis (and the fact that I have 3 herniated disks in my neck that go nuclear on AIs, but I have also had carpel tunnel, trigger thumb, claw feet,etc) . Right now, I am exercising a lot, eating very little meat and trying to move around on a regular basis. The best new thing I have discovered is a foam roller. My teenage daughter has used one for a while after her athletic work outs and I finally tried it. It is fantastic! Like a massage that you can give yourself. Who thought a bit of foam could do so much for arthritis?

    In any event, just want to pass along some positive energy since I have sure had bad days where I came to this site to get advice and energy from you all. 

    Best,

    Beau

  • camillegal
    camillegal Member Posts: 15,711
    edited March 2014

    Beau good news and some very good thoughts--thanks for sharing.

    BTW when I had my BP taken the other day--(cus I secretly was off Aromasin, by BP was pretty normal--just to let u know.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2014

    Beau, isn't it amazing how PT folks can use simple things to help pain?  I am clearly putting your daughter among that group.  Good for you for helping yourself

    Camille, since ending my aromasin, hoping my BP and cholesterol will improve, tested after 1 month off and not yet improved.  Retired nurse pal said it could take up to 6 months so will see how it is on next visit.  My BP is dif based on who takes it...nurse at gym is better than nurse at cancer center

  • doxie
    doxie Member Posts: 700
    edited March 2014

    My BP is always really high at my MO/BS office.  It is otherwise very low at other doctors' offices.  For me I don't think it the skill of the nurses, but my mental state each time I'm at the office I learned I had BC and had to undergo chemo.  

    Thankfully my cholesterol and BP are low.  2 yrs on AIs and I'm still doing ok with these.  

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2014

    Doxie, I told my MO that the nurse at the gym tested my BP and it was good...MO said that was the real number!  Think or hope that now that I am retired and out of my stress filled job that will help my numbers also!  Sewing projects are much less stressful for me so getting back into that now.

  • april485
    april485 Member Posts: 1,983
    edited March 2014

    I have one of those "wrist cuff" BP monitors at home. Some say not too accurate others say not too bad.

    Used this cuff twice so far. Once while still on aromasin and it read

    149/92 which is high for me!

    This morning my BP on that cuff said 121/70 (have been off Aromasin for 6 days now) so....

    Either the lack of aromasin from my holiday OR not in a stressful place like the MO office made a difference. I think it is combination of both!

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2014

    I have one of those wrist BP things, it seems to mostly show high

    I should the history of readings to my PCD and she was concerned but the day in her office, my BP was pretty good so who knows!  I take my meds and hoping it works itself out

    I am on new health insurance as of May 1 and PCD once it settles down as I have not been happy with some of her treatments for sinus issues in the past year.  May go back to the old PCD that was more proactive but did not take my last insurance plan

  • 208sandy
    208sandy Member Posts: 582
    edited March 2014

    Aromasin as well as the other AIs raise bp - I know because I've been taken off all except Aromasin and now have quadrupled bp meds because I am on Afinitor/Aromasin and need to stay on for a while - I had normal bp before all this started and when on "breaks" bp is really good - honestly, it's quite a mess with all the pills to counteract all the other pills!

  • malleme
    malleme Member Posts: 164
    edited March 2014

    Hello,  

    I was on taxmofin then ferastin due to joint and bone pain.  Then went to femora and arimidex joint pain and tired.  Now I have been on aromasin for the past year.  In the last month I have had serious issues.  At first I thought just bones hurt from shoveling snow and the cold weather.  

    Then 2 weeks ago my left arm forearm, arm pit and left breast implant hurt so bad I could not move then.  That lasted 4 days while on vacation. Thank God my sister had pain meds.  This past week all seemed to be fine.  

    Then at work I was doing my normal walk up to the 3rd floor carrying a light load of files and experienced crushing chest pains. and my left arm started again with the severe pain.  I called my secretary from the 2nd floor and my doctor.  Of course they didn't have an appointment.  I waited for the pain to pass and then drove the 2 miles home, my husband was totally freaked out looking at me.  The pain started again and my doctor said just come right over.  I did and off the the ER he sent me.  Thought I was having a full blown heart attack at 51.  The pain kept up for hours from the center of my chest around to my muscle in my back.  Also I had been waiting to get into my oncologist& plastic surgeon because I've noticed since the first episode that I have a divet in my implant. I thought maybe the implant is leaking or shifted? They did all the heart attack test, bloodwork every 6 hours, gave me nitroglercin patch to open up the arteries and flexal. A special cat scan for the chest.  Then next morning a stress test with cardiologist., ultrasound checked chamber of heart.   All test looked fine.  Sent me home with tramadol and napaxen.  I am now really sleepy and exhausted and have joint pain in my hips.  has anyone experienced this kind of crap on aromasin.  The side effects list chest pain and joint pain but this was really bad.  Scared the crap out of me.  Now they think I might have angina.  The only meds I'm on is aromasin?  Any suggestion or advice ?

  • 208sandy
    208sandy Member Posts: 582
    edited March 2014

    Yikes!  First of all, next time you have crushing chest pain get your secretary to call 911 - there is no way you should have driven home or gone to the drs. office.  As for se's I know that is an se of Afinitor which I am on with Aromasin - I haven't checked the se's on aromasin but it's probably one too - angina is easily treated but I hope you're seeing a cardiologist - PCP's and oncs aren't cardios - my cardio sent me on my way with a low dose aspirin regimen for a-fib which the others were overtreating - wishing you a happier weekend and some peaceful, pain free rest.

  • proudtospin
    proudtospin Member Posts: 4,671
    edited March 2014

    ooo goodness, correct, if this happens again, 911 is for you!  I just ended my 5 years on aromasin, no way did I ever have anything like that.  Yes, achies at time but I haunt the gym and very religious on my stretches and exercise.  If I do not, aches come back.

    Doubt this was a normal side effect, suppose you could be allergic as I know I get reactions to weird stuff.  Wonder if it was something totally unrelated?  What comes to mind to me is gallbladder?  My aunt went to the ER thinking she was having a heart attack but it turned out to be gallbladder....possible maybe?

  • april485
    april485 Member Posts: 1,983
    edited April 2014

    I had some breathing issues early on but think it was more about the rads nicking my lung than the aromasin...I would definitely stop the drug to see if side effects like this abate or go away and then go back on if you find it is not from the drug. All AI's and tamoxifen can cause heart problems although it is rare. I am with the others on calling 911 immediately if you experience this again!

  • camillegal
    camillegal Member Posts: 15,711
    edited April 2014

    April it's usually a mystery why things happen after the fact of everything. I have a small heart problem now, before I had none, but after Herceptin and an Al who knows and no Dr. will say what they think- but I'm lucky cuz mine is treatable with meds--yea more meds. And I get a test every so often to watch it.

  • dventi
    dventi Member Posts: 100
    edited April 2014

    Hi Ladies, just heard back from MO....was on Femara - had an episode of vertigo..Took a break from Femara and had no other incidences of vertigo... so he is changing me to Aromasin....Anyone have to switch from one drug to another?

    MO states the reason why my body reacted to Femara was related to "enzymes" in my body... Whatever that means.  I just wish there was a way to know how our bodies will react to these drugs.  ...

    My concern with aromasin is that the dosage is 25mg... so much higher than Femara which was 2.5 mg.  I asked MO and of course he said " that's the dosage on aromasin - different drug"  

    Thank you !!!!!


  • Nettie1964
    Nettie1964 Member Posts: 627
    edited April 2014

    My body didn't like Aromasin!  Many muscle and joint pains, high blood pressure, vertigo!!  Just to name a few!  But my MO didn't want to switch me, said that the drug was NOT the cause of the issues!  However, I have taken a self diagnosed break from the drug and what do you know, most issues are gone or they are at least significantly better!  I will start the Aromasin again next week and if the issues return, I will be calling the MO!!

    Wishing you luck with the Aromasin!

  • dventi
    dventi Member Posts: 100
    edited April 2014

    just googled Aromasin.. and its seems like its a steroid of some type... this is crazy!! I don't think its a good idea to have continual use of a steroid... Maybe Im over reacting... can anyone clarify/confirm?



  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2014

    I just ended my 5 years on aromasin. No problem really.  Actually I think the dose is the same on femara (I took that for 18 months)

    since ending, no new things

  • Lily55
    Lily55 Member Posts: 1,748
    edited April 2014

    femara was awful fir me, been on Aromasin for eight months now and its a lot better but make sure you take at least one month off before starting a new AI drug 

  • dventi
    dventi Member Posts: 100
    edited April 2014

    Proud to spin and lily55 - that's great news that you did well on aromasin!

    MO didn't mention waiting 1 month before changing? Hmmm I will call tomorrow . 

  • doxie
    doxie Member Posts: 700
    edited April 2014

    I switched from arimidex to aromasin because of an eye SE.  It came back regardless.  Sometimes our SEs are simply because our bodies cannot handle the extremely low estrogen environment we have on the AI drugs.  Switching from one to the other didn't make much difference for me.  For others, it helps a great deal because they are reacting more to a filler in one drug.  

  • Lily55
    Lily55 Member Posts: 1,748
    edited April 2014

    the private Oncologist i consulted is world renowned and he was very clear that its important to take nothing for at least a month, it has no risk and can in fact be helpful he said. It reduces chances of side effects from new medication

  • april485
    april485 Member Posts: 1,983
    edited April 2014

    dventi, welcome. Aromasin is not an actual steroid but the body reacts to it as though it was steroidal in nature...at least that is what I was told. It binds to certain receptors and becomes a steroidal compound but is not like taking "real" steroids.

  • dventi
    dventi Member Posts: 100
    edited April 2014

    april485.. thanks for update... hmmmmm body reacts to it as though steroidal in nature???... What does that really mean??.

    How are you doing with Aromasin?  I know its all individual... but just curious

    Hope Im not going to bulk out on this drug..Happy..

  • LindaKR
    LindaKR Member Posts: 1,304
    edited April 2014

    This has a short explanation of steroidal/non-steroidal AI's http://www.ncbi.nlm.nih.gov/pubmed/18695261

    This explanation might be a little better? http://www.ncbi.nlm.nih.gov/pubmed/15047917

  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2014

    thanks linda, I never really understood the dif and the second article was especially helpful to me

    this is really THE place to get questions answered

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