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Life on aromasin

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Comments

  • doxie
    doxie Member Posts: 700
    edited October 2016

    I could be wrong, but I think the reason Aromasin is the drug of choice with zolodex is because the drug trial was with those drugs. It seems like it would work with a different AI. Maybe post to the other AI forums or start your own. Actually I think there is one already with AIs and zolodex. I've not paid that much attention because I was post meno when starting AIs.

    With your large tumor and 3 positive nodes, I'm surprised at your MO. If it was me, I'd try to find an AI that would work or even Tamoxifen.

  • Ozoner
    Ozoner Member Posts: 126
    edited October 2016

    WildTulip,

    Thanks for the suggestion of taking some time off. I didn't take one today and probably won't tomorrow, but then I'll talk to my MO. It's so hard to find a balance, isn't it, between what we need and our quality of life

  • Wildtulip
    Wildtulip Member Posts: 470
    edited October 2016

    Doxie, I know I will go back on something..either another AI or Tamox, but I believe my MO wants to make sure my symptoms were actually caused by the meds, and give me a break. He mentioned he had one patient that the pain did not go away during the med break and it ended up being some form of arthritis. I don't think that's my case, but I understand the need to make sure we know what's going on in order to know the next step.

    Ozoner, exactly what you said!

  • logang
    logang Member Posts: 144
    edited October 2016

    I am also doing zoladex injections and aromasin. I started the zoladex injections in July. I have only been on Aromasin for a few weeks. Hoping to avoid major side effects. I can live with hot flashes and insomnia.

    I agree with Doxie. The trial was with zoladex and aromasin, so my MO put me on those drugs. I'm sure another AI would work too.

  • mbalest31
    mbalest31 Member Posts: 1
    edited October 2016

    Not even a year on Arimidex and I already have joints that are locking on my left hand and my hands hurt so badly when I wake up in the morning I can't even bend them. it is obviously causing arthritis. I am to be on this for 10 years. I can't see that happening. I will be crippled by then :(

  • MameMe
    MameMe Member Posts: 215
    edited October 2016

    Hi to all, Just checking in as I just started Aromasin a week ago. So far so good, except for gastro intestinal disturbances... visiting the loo more often and have rumbly, sometimes uncomfortable gut. I was taking Xeloda for the last two years so this is definitely better. Not as fatigued, much less dry mouth, and aromasin should allow for my hematocrit to normalize. It will take awhile for me to read thru this thread from the beginning, so apologies if this has been asked before. Have people had gut problems with this med? Were they t temporary or more long term?

    Many thanks! Mame

  • elainetherese
    elainetherese Member Posts: 1,635
    edited October 2016

    Mame,

    When are you taking Aromasin? Full stomach or empty? I always eat something before I take my Aromasin, or I don't feel so good.

  • meg2016
    meg2016 Member Posts: 188
    edited October 2016

    I for sure have to take it with food including protein or I can have a rumbly stomach. But otherwise I have not found it causes me stomach issues.

  • mamci
    mamci Member Posts: 1
    edited October 2016

    I have been taking Arimidex since June with no problems, but then I had a flu shot and I seemed to fall apart! I started to have aches and pains, fatigue, hot flashes and felt just awful for two week afterwards. I also have a cough since, doc said my lungs sound clear.

    I started taking Neurotin for aching knees and hot flashes and that has helped a lot, has anyone had the same experience?

  • logang
    logang Member Posts: 144
    edited October 2016

    I take my aromasin after supper every night and have no stomach issues.

    I started taking magnesium to help with hot flashes. My joint pain is mild and usually only bothers me intermittently after sitting or laying for an extended period. I walk at least 1-2 miles daily and I think it really helps with the pain and hot flashes.

  • Ozoner
    Ozoner Member Posts: 126
    edited October 2016

    Mamci, I'm sure glad I saw your post! I got a flu shot earlier this month and felt so terrible I called the MO and got my hormone blocker put on hold for two weeks. I didn't really relate it to the shot at the time, but that's when my SEs got worse. I did fairly well on Aromasin for eight months but have been fatigued and had a lot of joint pain. I hate to switch but will see what the doctor says next week

  • Wildtulip
    Wildtulip Member Posts: 470
    edited October 2016

    Ozoner, I was on Aromasin for almost 8 months but the joint pain was so bad my MO took me off it two weeks ago. I was really fatigued too, didn't even realize how much until I got off. Good luck with your appointment next week!

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited October 2016

    My Mum is not a cancer patient but she has had numerous reactions to flu shots. She had a reaction that gave joint pain in shoulders one year, name escapes me but MD said extremely likely to be related to shot, again the scientific part of why this was I have forgotten. It is not your imagination girls, it can and does cause issues with some people. My Dad has only had a reaction once. Have to say their experiences have not inclined me to get one. DH on the other hand gets it every year religiously and has always been fine. Vaccinations often seem like damned if you do, damned if you don't choices.

  • marionsgirl
    marionsgirl Member Posts: 18
    edited October 2016

    I started Aromasin in March 2016 and by July the back pain was horrible. My MO told me to take a break for two weeks and the pain didn't go away. My PCP had all sorts of tests done on my back and the diagnosis was thoracic arthritis of my spine along with a pinched nerve. I was then put on Femara and as long as I take 3 800 mg Ibuprofen a day, I can function. My moods are all over the place. I have trouble falling asleep as well. Some days I feel older than my 65 years!

  • CCS648
    CCS648 Member Posts: 19
    edited October 2016

    I saw my oncologist today due to increasing joint pain and lots of tendon problems (both hips, both elbows, right shoulder), not to mention walking like a crippled little old lady. Just want to pass along what he said for what it's worth -

    I asked about switching to one of the other two AIs, and he told me that the reason he had started me on the exemestane was because it was supposed to have LESS musculoskeletal side effects. So I guess I won't switch - I can't imagine this getting worse.

  • Molly50
    Molly50 Member Posts: 3,008
    edited October 2016

    CCS648, I have less pain on exemestane but everyone is different. If it gets too bad insist on switching. Are you taking claritin? It is supposed to help with the bone/joint pain.

  • claireinaz
    claireinaz Member Posts: 714
    edited October 2016

    I have read Aromasin should be taken with some food, preferably some fat, because it helps aid absorption. I feel like if I'm going to be on any drug for 10 years, I want to at least get the full effect, so I make sure I at least take it with a spoonful of coconut oil and a piece of toast or something since I take it mid-morning and I'm not a breakfast eater.

    Claire

  • CCS648
    CCS648 Member Posts: 19
    edited October 2016

    Molly50, yes, I do take Claritin, every night. I take the exemestane in the morning. Maybe I should try them together.

  • claireinaz
    claireinaz Member Posts: 714
    edited October 2016

    I take Claritin and Aromasin both in the morning. I can't claim that Claritin addresses any side effects because I had pretty awful ones on Arimidex that got more severe over time, and I was taking Claritin then and it didn't do anything for them. I have no side effects really on Aromasin, so I don't think the Claritin has much to do with that. I'm Claritin because since chemo one of my tear ducts has scarred up on my right eye and waters, and Claritin relieves it somewhat.

    I'd get my eye fixed, but both consultations I had with some eye surgeon left me cold. He told me that there was a 50/50 chance he could fix it by putting in a drain for four months, it was general surgery where I'd be put out all the way, they don't do this type of surgery in my hometown so I'd have to drive 3 hours one way for the procedure, and if he couldn't get it fixed that way, I'd have to have a hole drilled in my nose bone to access my sinuses. No way. I'll wait for better technology. ;)

  • CCS648
    CCS648 Member Posts: 19
    edited October 2016

    Claire, that tear duct thing sounds awful.

    All - do you think that my oncologist's comment that aromasin is supposed to be the easiest AI in terms of musculoskeletal side effects? He said there was no point changing me over to another one because it would be worse. I'm not sure that is accurate based on the comments I've seen on this site, but I wanted to throw it out there.

  • doxie
    doxie Member Posts: 700
    edited October 2016

    I'd try changing if you are struggling on Aromasin. It may be as simple as a filler that is causing you a problem. They are almost equally effective, certainly more effective if you stay on them than if not.

    I switched from Arimidex to Aromasin because of an eye SE. In the end it made no difference. I'm doing fine on Aromasin after 4.5 years. Not sure it would have been different on Arimidex, but who knows. You may find that another AI has fewer SEs. It is better to try another, than to stop all together.

  • elainetherese
    elainetherese Member Posts: 1,635
    edited October 2016

    CCS,

    I've also heard that sometimes the generic manufacturer makes a difference. Some BC patients have claimed that they do better with one generic manufacturer than another. You may want to ask your pharmacist about who is manufacturing your pills and ask if you can try another one before trying another AI.

  • Ozoner
    Ozoner Member Posts: 126
    edited October 2016

    My MO is switching me to Femara to see if that helps. My first dose will be Sunday.

    After two weeks off Exemestane, I started feeling energetic the past few days and was able to do Zumba toning, short dog walks, and a dance lesson. I was euphoric until this afternoon, when I took an Aleve for muscle and joint pain ( which could be because I'm 65 and taking ballroom lessons)! I've been on Exemestane for ten months and found th SEs growing this summer and then especially the flu shot.

    So tonight I'm dressing as a Dia de Los Muertos señorita and hoping to stay on my feet as long as I can. I'm glad I have the option of a new AI and will let you know how it goes.


  • nancym712
    nancym712 Member Posts: 32
    edited October 2016

    My hand pain started after four years!!!!! I stopped Aromisin two weeks ago. I'm hoping the debilitating hand pain goes away. My feet are a bit achy but nothing compared to how bad my feet hurt on arimidex.

    Nancy

  • lulubee
    lulubee Member Posts: 903
    edited January 2017

    Anybody still here? Looks like this thread has lulled since October. I was active on this thread in 2012-2013, when I took Aromasin with Afinitor for a year or so. I'll be starting on Aromasin all over again next week, this time paired with Ibrance. Who knew that could happen??

    Just reading back through some things today to refresh my memory about side effects and anecdotal remedies and such. I've been on Xeloda for over three years, so it will be interesting to go back on an AI. I wonder if I will have hot flashes again...

    Anybody home here in Aromasinville? :-)

  • doxie
    doxie Member Posts: 700
    edited January 2017

    Still here until April when I should be done.

  • logang
    logang Member Posts: 144
    edited January 2017

    I'm still here too!

  • ginger48
    ginger48 Member Posts: 1,437
    edited January 2017

    still here too.

  • feelingfeline
    feelingfeline Member Posts: 5,145
    edited January 2017

    Ditto. No release date for me unfortunately....but congrats to anyone getting sprung!!

  • Molly50
    Molly50 Member Posts: 3,008
    edited January 2017

    Me, too! I am actually doing really well on exemestane. Anastrozole made me feel like I had chronic flu symptoms.

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