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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • kmpod
    kmpod Member Posts: 84

    Hi CarolME,

    If you take a look at Astra Zeneca's site, they list hypertension as one of the common side effects of Arimidex.

    I was hypertensive prior to the BC, but it had been well controlled. Within a couple of weeks on Arimidex my blood pressure shot up to alarmingly high levels. It took doubling the dosage of two of my meds plus adding another to bring it down to acceptable levels, where it remains.

    I'm fortunate to have a GP who listens and works hard to help me manage my side effects. My MO, on the other hand, does not like to "own" any of the problems caused by the meds and still denies there is a connection between the Arimidex and my elevated blood pressure. 

  • Timbuktu
    Timbuktu Member Posts: 1,423

    Gee, I've noticed the same thing.  I think the onco wants so badly to help prevent the recurrence that he discounts the Se's.  It's kind of shocking.  A dr. shouldn't be in denial.  But I guess they know they only have so many options and they don't want to believe how damaging those options can be.

  • lago
    lago Member Posts: 11,653

    Timbuktu I find the oncs feel that heart issues, hypertension, osteoporosis, etc. can be managed but better than cancer. That's why they are so willing to risk these diseases and keep you on the meds.

  • Timbuktu
    Timbuktu Member Posts: 1,423

    LOL!  Good point Lago.  Nothing is worse than cancer!

  • kmpod
    kmpod Member Posts: 84

    Hi lago,

    I totally agree with you regarding why the onc's keep us on the AI's. That's exactly why I persist with the Arimidex in spite of a long, long list of side effects. (I just had cataract surgery this week)

    What I would like my MO to realize is that when I give him my list of side effects it's not just that I'm whining; nor that I'm necessarily asking for a change in meds. It's to inform him of the issues that arise when on the medication - some with serious health consequences and others "merely" impacting quality of life. If I don't tell him he's going to work under the assumption that everything is fine and dandy; and, therefore, the meds aren't a big problem to take.

    There is a huge compliance issue with the AI's. I really do feel that if the onc's were more up front with us about the possible side effects, made an effort to counsel us, and proactively managed the problems that arise, it would go a long way in improving the poor compliance.

    A little compassion wouldn't hurt either.

  • Timbuktu
    Timbuktu Member Posts: 1,423

    Well said!

    When I first went on them and the dr. told me that the chance of recurrence for me was about 5% I asked "why 5%?"  If the cancer is dependent on estrogen shouldn't it just be wiped out?  Well, I've learned a bit more since then and it's not so simple.  But when I told my son, who is a psychiatrist, he said "non-compliance.  You can't get anyone to take a pill faithfully for 5 years.  I'm lucky to get a patient to take a pill for 5 weeks."  At the time I thought he was wrong, who wouldn't take a pill if it would prevent recurrence?  Hah!  Famous last words.  

    I've been on "vacation" for a week today and feel 100% better,  But I hate to think of what might be happening in my body at the moment.  When my mother got bc there were no meds.  She didn't get chemo either.  She was fine for 15 years.  And then....not.

  • proudtospin
    proudtospin Member Posts: 4,671

    hmm, interesting that your mom was fine for 15 years.  Sort of like the financial planner guys who want you to tie up your money so that it will be there when you are 100.....I really do not see myself at 100.

    my BP was under control for years with meds.  now it is not.  although it was good when I was sent and checked by a cardiologist.  I get the old white coat thing in docs offices

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Hi, kmpod.  I'm with you on the onc thing.  I just saw my guy for the second time (first time was post surgery, pre rads), and listed my symptoms from arimidex and everything else.  Thought (and think) that informing him about these issues was (is) the appropriate thing to do.  He posted his post appointment notes, referring to my "multiple complaints."  For crying out loud, which of us newly post rads, and newly experiencing arimidex, doesn't have multiple questions and issues?  I realize he might just be using awkward language to indicate that I did have the normal amount of symptoms and other issues, but, to tell the truth, I'm feeling a bit intimidated about our next visit in three months.

  • schoolmom
    schoolmom Member Posts: 327

    My mother had BC in 1982 over 30 years ago. She is now 87. She had a unilateral mastectomy including all lymph nodes. She said she took some pills for a little while but doesn't remember what kind. No chemo. No rads. Here I am with lumpectomy chemo rads and a little white pill.

  • Timbuktu
    Timbuktu Member Posts: 1,423

    I have trouble with bp in dr offices too.  But I think that is a sign that I have trouble with stress, which happens all day long.  Last time I was at the onco it was 220/120 and that's on two meds.  He wanted to send me to the hospital but my internist said he'd wait for me.  By the time I got to him it was about 180 over something.  He prescribed spiranolactone on top of the other meds and now, at the onco, it was 136/79.  Don't give up, there are lots of meds.

    I've reallybeen through the mill (and a million tests) with my bp.  It runs in my father's family very storngly.  But it really is possible to control.  This whole experience, of course, is incredibly stressful.  When we drove to Sloan (800 miles) and got a different diagnosis (cancer in a node, LVI) than I had gotten in chicago my bp went bananas.  We thought it might be the arrimidex.  But more likely it was the diagnosis.  Life isn't easy!

  • [Deleted User]
    [Deleted User] Member Posts: 942

    I use a cane and when I first walk across the waiting room, down a couple hallways to the exam room, if they take my bp immediately it will usually be somewhere in the neighborhood of 169/94. If I ask them to wait just a few minutes, my bp will be 104/70.



    Sometimes they get in a hurry and I tell them to please wait, because I want a real reading. I wait plenty for them. They can wait 3 minutes for me.



    Paula

  • proudtospin
    proudtospin Member Posts: 4,671

    Paula, good advise, I need to do that at my meets, thanks

    good thing about these boards, is little thoughts and helps like yours!

  • RhodyMMM
    RhodyMMM Member Posts: 278

    When I go to my PCP, the med tech takes my vitals and then the PCP retakes it after we have been sitting and talking for a while. That helps the white coat syndrome. I have had high BP for several years and have been on meds. It was quite interesting that when had my biopsies and got my diagnosis all of a sudden my BP was good! Now it's not again as I am waiting for more tests and the final verdict about chemo or not. I know I will have the AI, I hope it does not affect my BP!

    Martha

  • edot
    edot Member Posts: 5

    I've been on Arimidex for almost 2 years. I can honestly say that my side effects are minimal. When i first started to take it, the little finger on my left hand was like a trigger finger, but that lasted a few months. I have arthritis - knew that before the arimidex, and I am stiff when i first get up. I also have arthritis in both knees, so i'm not a very fast walker, too young (58) and not bad enough to have them replaced yet, so i do take glucosamine chondroitin, and it helps. Best thing is to walk as much as you can. First thing in the morning, i walk like I'm 100, but it gets better.



    I was already through menopause when dx'd, and had been taking an antidepressant - still do - no mood swings or hot flashes. I gained 25 lbs on chemo, but slowly have lost more than 30 - i'm on the heavy side any way. I try to be as active as i can. It improves slowly.



    I have an infusion of zometa every 6 months for bone strength - have to get a bone scan this autumn.



    I had chemo and rads in 2011, and it took more than a year to feel energetic. I still get tired, but i can't complain about the arimidex.



    I'm from the US, but have lived in Switzerland for the last 6 yers - so dx and tx was here. Good care, close monitoring, so far no crap from insurers and good docs.



    I wish there was better (any) research on identifying people more likely to have side effects with an eye toward helping reduce those SE's. In my case, i believe the long term use of anti depressants helped with mood and menopause symptoms.

  • lago
    lago Member Posts: 11,653

    My onc and her NP are both female. They want to know the issues. I have never forgotten to take my pill in 2.5 years… but one day I forgot I did take my pills and took it twice. Woops. I didn't even develop hot flashes or a penis that day.

    I put my pills in front of my computer because I know I will be online before work. I also have a pill box that I keep 1 anastrole pill in just in case. This is my pill box:

    http://www.neatoshop.com/images/product/28/4428/Mad-Hatter-Pill-Box_19495-l.jpg?v=19495http://www.stupid.com/assets/images/graphics/00000001/madhatter4.jpg

  • ClaudiaMetz
    ClaudiaMetz Member Posts: 136

    Love the pill box.

  • [Deleted User]
    [Deleted User] Member Posts: 942

    Do any of you take Claritin for the bone pain of arimidex?



    Paula

  • AnnieLane
    AnnieLane Member Posts: 757

    I've seen some comments on another Arimidex thread (Coping with the Side Effects of Arimidex) from gals who've used Claritin and thought it helped reduce their bone & joint pain. I haven't had a need yet, so I haven't tried it.

  • RhodyMMM
    RhodyMMM Member Posts: 278

    I haven't heard of taking Claritin for bone pain...will have to do some research! Could be handy because I have taken Claritin for springtime allergies in the past....double duty!

  • AnnieLane
    AnnieLane Member Posts: 757

    Claritin helps a lot of patients with the awful bone pain you can get from the Neulasta injection during chemo. They don't really know why.

  • lisa2012
    lisa2012 Member Posts: 288

    Iago, how often do you massage your implants? Daily? Do you do the edges or all over? How hard do you do it? My PS told me to do it one way and my BS thought that sounded like too much! So I am doing something in between. Seeing my PS this week, but he is hard to get information from.

  • [Deleted User]
    [Deleted User] Member Posts: 942

    My oncology nurse practioner told me they don't know why Claritin works, but they've seen results enough to know it does help with bone pain. The generic " Loratidine" is much cheaper and works just as well. I get it at the Dollar General.



    Paula

  • lago
    lago Member Posts: 11,653

    Lisa I do it every morning but just for maybe 30 seconds. I just displace them. Push them up and over towards the middle as directed by my PS. I would do what your PS says unless that hurts. If it hurts then I would have a discussion with your PS. My onc's NP couldn't understand why I had to do it and be so aggressive either. It's not the BS or NP's specialty. I would listen to the PS.

  • sweetandspecial
    sweetandspecial Member Posts: 1,669

    Happy news!!!  My trigger thumb has been much, much improved the last several days or so.  Most of the time it bends fairly easily with just a slight catch now.   Sooooo much better than being stuck straight and hurting badly if bent by accident through normal activities.  So, right trigger thumb lasted about 2-3 months, left kicked in later than right and lasted about 4-5 months.  Neither is totally normal yet but they're both much better.  Time will tell if the improvement is permanent or if there will be a relapse at some point over the next 4.25 years when I'm hopefully done with this drug.

    Sixteeen days to exchange, whoo-hoo!!!! Smile

  • magnolia57
    magnolia57 Member Posts: 9

    Timbuktu and Brookside VT, it helps to know that the fatigue is "normal" (oddly enough not listed on the long laundry list of SEs). I am trying to adjust my daily activities to avoid a chance to have the afternoon slump. It's a control thing.

    lisa jayne, looking forward to hitting the plateau where the fatigue goes away..glad yours is better.

    Paula, the suggestion about delaying the BP for a few minutes is great. I always feel stressed being attacked by the gadgets the second I sit down. Normal for me is 115/74 and it can elevate to 140/85 when they freak me out. I'm trying your idea. last thing I need is bp meds!

    cool pill box, lago...down the rabbit hole indeed.

    Thanks for all the insight ladies.

  • lisa2012
    lisa2012 Member Posts: 288

    Thanks for the info, Iago!

  • AnnieLane
    AnnieLane Member Posts: 757

    I've been on anastrozole one month as of today. Just 59 months to go. So far, so good.

  • navymominohio
    navymominohio Member Posts: 16

    I've just started also and doing fine so far.  Just have to remember to take the darn pill every day now.

  • Chris13
    Chris13 Member Posts: 112

    New research...you can find more on the research thread, but here's a short notice:

    A new study by Kiran Chada, PhD, professor of biochemistry and molecular biology at Robert Wood Johnson Medical School, shows that metastasis in breast cancer and the risk of death are reduced when the function of the gene HGMA2, is limited. This finding, published in Cancer Research, a journal of the American Association for Cancer Research (AACR), may be used to develop therapeutic treatments for patients.

  • bren58
    bren58 Member Posts: 688

    I finally picked up my script today. The pharmacy filled it a couple days ago, but the manufacturer was in India, so I asked if they could get a different brand.  New script is supposedly from a US mfgr. I feel better about the drug and the fillers from a US company than one from India. So now I guess all my excuses are gone and I have to start taking it.