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Life on aromasin

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Comments

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited February 2014

    Happy

  • schoolcounselor
    schoolcounselor Member Posts: 229
    edited February 2014

    Curious. Is anyone else getting Zometa twice a year? 

  • overjoyed4life
    overjoyed4life Member Posts: 92
    edited February 2014

    Hi Schoolcounselor,

    I started out on Zometa monthy for the first year, after that I am now on it every three months.

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

    I've been on Aromasin for almost a month and my bp has skyrocketed - PCP told me to double my bp meds yesterday but bp goes down for a few hours then climbs up again - scary - I had extremely high bp on Femara (that's why they took me off of it) and other problems on Arimidex - high bp there too but not as high as this - anyone else have problems?  I am due to add Afinitor next week worried about that too. 

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

    what time of day do you take your aromasin?

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

    I am coming off my aromasin, my BP has been hi and recently docs put me on 2nd BP med but too soon to tell if my BP is lower, hoping so!

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

    I've been taking it in the morning - AIs at night cause insomnia (at least for me).

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

    Oh I never put it together my Card just doubled some of my BP meds it's high--before I did have high BP ut t was so incontrol it was lowish now it's never low. HmmmmmWTF

  • corky60
    corky60 Member Posts: 453
    edited February 2014

    My BP went from normal to high while I was on Aromasin.  And insomnia was a problem too.  Since stopping Aromasin the BP has returned to normal but the insomnia is sticking around.  And I take the hormonal with breakfast.

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

    Corky I don't think there is one good answer for all of us.

  • sas-schatzi
    sas-schatzi Member Posts: 15,894
    edited February 2014

    Hi Folks, I haven't posted here before, but recently found out some info that has pissed me off in re: the drugs given to me during treatment for BC. I was almost killed with my one and only chemo. Taxotere was the culprit. I "failed" all three AI's b/c of s.e.'s. All of this could have been avoided had my MO paid attention to the Cytochrome450 genetic testing. Of the six genes tested, I have abnormalities in three. All are major players in the drugs I was given. Had I been tested, it would have been known. The drug choice and /or dosage modifications could have been made

    Rather than rewrite the details here The link below will take you to a thread that has the posts that I have written in the last few days.

    I'm not trying to sell Genelex. Other laboratories are doing genetic testing. But Genelex is the only company right now that provides the application of the genetic results to the drugs we are taking. Other companies, I'm sure are trying to build the same business model. It's the future of drug administration.

    Why? Patients will no longer except being experimented upon with drugs that can harm them. If the docs won't do this because it's the right thing to do it. Then we have to PUSH them into doing the right thing.

    http://community.breastcancer.org/forum/73/topic/7...

  • Galsal
    Galsal Member Posts: 754
    edited February 2014

    Thanks Sas!

  • webstertoo
    webstertoo Member Posts: 16
    edited February 2014

    I've been on generic aromasin since late November and while never having acne as a teenager, I have it now.  I went searching on the internet to find if this was a side affect and found that male body builders use aromasin  to increase their levels of testosterone. Interesting.

  • pupmom
    pupmom Member Posts: 1,032
    edited February 2014

    Webstertoo, I haven't had that SE. My main SEs have been carpal tunnel and joint pain. But, I gotta add, would you rather have acne or a recurrence?

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

    I asked my trainer who works with many cancer survivors about that bit on body builders...seems they take much larger doses than us folks!  interesting though

  • Galsal
    Galsal Member Posts: 754
    edited February 2014

    Just recently during a get-together of the Tampa Bay BCO ladies i heard about bodybuilders using AIs.  Wow

  • Lifestooshort1
    Lifestooshort1 Member Posts: 4
    edited February 2014

    Hi gals...posted here a lot in 2007 during my bc treatment.  Just wondering if anyone has been on aromasin for 7 years like me.  I havent had any problems altho I am due for a bone density...last one was fine 2 years ago.  But in the last 7 - 8 months my hair has been thinning...so much that I'm freaking out!  I started a new job 8 months ago and I'm wondering if it is stress (altho love my job).

    But also wondering if being this long on anti-estrogen aromasin is aging me into a little old lady.  Felt still somewhat youthful and pretty at 51....but now at 58...i feel old.  I am noticeably forgetful which scares me.  I decided to wean myself off the aromasin, been taking it every other day for about a week.  Have recently relocated to San Antonio and looking for a new Oncologist to help with my survivorship.  If anyone can recommend a physician can you please send me a message on email.  Would love to hear from you.

    Fran

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited February 2014

    Dear Fran!! I have been taking Aromasin for almost  9 years!  At this point, I have learned to ignore my side effects, he, he!! But seriously, I have adapted to it!! I wish you well!! Lots of water and exercise helps!!

  • bc101
    bc101 Member Posts: 923
    edited April 2014

    This is an interesting thread. Thanks everyone for posting! And it's nice to hear from those of you who are 7 and 9 years out! 

    I just started on Aromasin last Sept. I had to switch from Arimidex because of disabling joint pain. I've had no problems so far (knock on wood!) as far as joint pain. I'm just glad it seems to be working and I'm able to tolerate it. 

    I had one Prolia shot about six months ago, but my new MO is starting me on Zometa instead. She says a new study proves that not only does it help with bone loss, but it also helps prevent bone mets.

    Does anyone here have osteoporosis? I was dx with it right after I started Arimidex, but not sure if it's actually genetic in my case. I also developed high blood pressure since starting the meds. Is that a common side effect of AI's? Other possible side effects include memory problems and insomnia. I'm willing to take the Als and put up with all the SEs because the drugs DO work! My doc told me I'd only have to be on it 5 years. Is that the new standard protocol for AI's? 

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited February 2014

    Dear bc101, my onc here in CA wants me to take it for 10 years! I have one more year!! My oncs in Chicago and Pittsburgh had told me that 6-7 years was enough!  Since moving here almost 3 years ago, I have continued taking the aromasin! My last bone density scan showed some thinning, but my onc wants me to continue the aromasin! It has kept the cancer away!! 

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

    Hi BC101 Welcome===we all have so many different stuff with these meds--I now have osteo, degenerative discs and vertebrae, scoliosis, and severe RA happened all within 3 months so I assume it from the med. But it's keeping the BC away so whatever I change to the damage has already been done, And yes my hair has thinned. What a mess.

  • Georgetta
    Georgetta Member Posts: 25
    edited February 2014

    Hi there.  I'm picking up my Aromasin from the pharmacy today.  I was on Arimidex and then Femara but couldn't handle the joint pain.  The joint pain and general brain fogginess aren't pleasant.  I was an athlete and physically felt better the first six months after chemo than I do now.   I'm hoping for better luck with Aromasin.  It really stinks to spend so much money for a drug that may help against recurrence but makes you feel so bad.  I'm hoping to be one of those folks that have minimal side effects with this drug.  Thanks for all of the information about your experiences.  I'm hoping I can post some positive experiences.

  • corky60
    corky60 Member Posts: 453
    edited February 2014

    My MO told me that Aromasin is the gentlest of all the AIs.  Many of us don't have SEs or if they do they are minor SEs.  Mine were so impacting my quality of life that my MO switched me to Tamoxifen.  It's only been six days so I can't comment on the SEs yet.  It took nearly four months on Aromasin for the major SEs to show up.

    My point is that you shouldn't give up.  Even if you can't tolerate AIs there is always Tamoxifen.  Hang in there!

  • Georgetta
    Georgetta Member Posts: 25
    edited February 2014

    Thanks Corky60.  My oncologist said that if my body can't handle Aromasin, he'll put me on Tamoxifen.  I sometimes feel like such a baby.  I feel like people think I should be back to normal now, when my body hurts more.  Just frustrating.  I don't often post on here, I guess I just needed to vent.  I mostly keep my thoughts to myself.  I'm hoping to post with some positive stuff soon.  Thanks again

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

    Hi Georgetta, sometimes posting gives u an outlet for frustration cuz everyone does think u should e fine and u don't feel fine. So it's kind of comforting to hang out with people that totally understand all of this mess.

  • corky60
    corky60 Member Posts: 453
    edited February 2014

    Georgetta, what Camillegal said!Smile

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

    I recently retired and part of the reason is that I was feeling so lousy, aches and such and seemed like I kept getting sick but while work folks were understanding during my radiation, they seemed to feel I should be normal now!  No way as got more aches now than before treatment.  Since I ended my treatment, hoping the dumb achies go away and my BP & stuff gets better

  • Georgetta
    Georgetta Member Posts: 25
    edited February 2014

    Thanks, ladies. I'm debating whether to start this in the morning or take it tonight. I already have problems with sleep and I'm scared of insomnia. When I started femara, I was up for most of two nights in a row and I took it at night. 

    Has anyone had luck with Celebrex and joint pain?  I wonder if it would help?

  • WaveWhisperer
    WaveWhisperer Member Posts: 557
    edited February 2014

    Georgetta, to give you hope, I had terrible joint pain and stiffness on Arimidex--claw hands, could not get up from a chair without assistance, felt like I was 80. After a year of that ordeal, I switched to Aromasin. I was skeptical: Would I switch one set of SE for another?? Aromasin has been MUCH gentler on my body. The claw hands are gone, and the stiffness is 90 percent better, This is the best I'be felt since before BC, Hope it works for you, And I take it in the AM...

  • Georgetta
    Georgetta Member Posts: 25
    edited February 2014

    Thanks for that wavewhisperer. I am taking it this morning and keeping my fingers crossed - even if it hurts ;) . I am planning to run/walk a 5k race tomorrow so hoping for a good nights sleep. Hope everyone has a good day. Thanks for the advice.

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