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Arimidex - Coping with the SE's

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  • ruthbru
    ruthbru Member Posts: 47,698

    Does lifting the fork repeatedly count for bicep curls? Undecided If so, I can say I got a lot of exercise in this weekend too.

    Lakewoman, I am jealous if it was warm enough to jetski. It was about 50 degrees here today and pouring down rain. I turned the heat back on! Having fun is one of the most important exercises of all, 'cause it exercises your soul!

  • kal_1865
    kal_1865 Member Posts: 145
    Hi ladies, I'm new to this drug.  I was told I was "cancer free by my MO on May 10th.  I started generic Arimidex on the 12th.  I told my MO to not tell me what to expect I'm worried BUT I'm not worried.  I really let her tell me what to do for the last 9 months (she basically became my primary) and she has not steered me wrong so I guess I shouldn't worry now.  I've read a bit of this thread but I guess everyone is different right??? we will all have different SE's???  All I know, is that my body is still trying to recover from the chemo and radiation fatigue, I'm hoping I don't have to deal with this fatigue for the next 5 years.
  • [Deleted User]
    [Deleted User] Member Posts: 1,017

    Welcome, kal, to the A Team!

    You will feel better - the fatigue from chemo takes several months - or it did in my case, to ease.  Most of the SE's of Arimidex, can also be helped - lots of good advice on this thread.  Make sure to have your Vitamin D level checked by a blood test ASAP - most of us have found it to be very, very low, and needed to take Vitamin D3 to get it up to a better level.

    I also found that chemotherapy knocked out my thyroid - and a TSH ( thyroid stimulating hormone) blood test, again easy to get, showed I needed to be taking thyroid medication.  Both that and VitD3 helped tremendously.   

    Took me months to figure out those two, this was 4 years ago, so hope most women will get them checked earlier in treatment than I did - as soon as possible after chemotherapy.

  • ruthbru
    ruthbru Member Posts: 47,698

    Hi Kim! The chemo/rads fatigue does take time to bounce back from. I believe that some people who think it's arimidex causing their fatigue are really having post chemo and/or rads tiredness, plus the post-treatment emotional crash that almost everyone goes through. I read someplace that however long you were in 'active treatment', that's how long it takes your body to recover....but I personally think you have to double that amount of time to get back to 100%. If you can get into an exercise routine, it will really help you bounce back faster and better.

  • lestwin
    lestwin Member Posts: 20

    Saw my RO yesterday..all's well, finished rads on 16th March started generic arimidex April 16th with a few side effects, mostly back pain, some slight hot flashes, lack of appetite (lost 6 or 7 lbs) nausea, and tired and achy. He said he would take care of my mammo's etc, as I told him I am not going back to the GS after he had yanked out so many of my nodes (all clear) and used a hospital that would not take my insurance and stuck me with a huge bill (I had them right it off eventually).

    Well lo and behold (I hate this BC) I then saw the neurologist in the afternoon because I have had two strokes and also have a rare form of leukemia and he asked the question, which would you rather have, a stroke again or cancer again.  He was very nice to me but he feels that I am in a catch 22 situation and now I am in a quandary...what do I do?  I refused chemo thinking I would just go with the rads and drugs for 5 years but now I am thinking I should have had the chemo and skipped the arimidex.  I HATE BC!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • GabbyCal
    GabbyCal Member Posts: 46

    lestwin - WOW. Your neurologist really feels the stroke risk from Arimidex is that high? I thought it was a very, very low minimal risk. I know it's a known SE of Tamoxofin, but thought Arimidex was mainly bone loss. 

  • jancie
    jancie Member Posts: 403

    Kim - I finished treatment (chemo and radiation) the end of September 2009.  It has only been in the last month that I have felt good for the first time since DX.  Also have to take into consideration I went into menopause and I am 51 years old.  Finally I feel like I have my energy back but basically for two years I was a slug.  I slept for 12 hours a day, maybe did 4 hours of some type of household chores and then took a nap.

    I was also dealing with 7 bone fractures last year that put my life on hold.  I got healed from one accident and turned around and 4 months later had another one so that put me behind the 8 ball.

    The more you exercise and yes....you have to force yourself - the better you will feel.

  • tinat
    tinat Member Posts: 2,235
    lestwin:  Is it possible that your neurologist isn't that familiar with oncology and is simply assuming that Tamoxifen and Arimidex are basically the same?
  • lestwin
    lestwin Member Posts: 20

    Yes, the neurologist did think it was the #1 side effect in my case, I have been seeing the neurologist for about 2 1/2 years after my second stroke (caused by the mutated platelets, ET) and he had to look up the side effects and was very concerned.  My blood pressure has also jumped way up, I take a blood thinner, a blood pressure med, Gerd meds, platelet reducer meds and a cholesterol med so I do definitely have problems before taking Arimidex.  I decided to call my PCP and have an appointment Tuesday to talk all this over with him (I feel the Oncs are biased cancer wise and the neurologist stroke wise so maybe having my PCP look at it from a non biased view may help).

    The other side effects so far are also the blues (one time was really bad and DH had to watch over me at night).  I have had only three depressed periods and I also cut out spirits and stuck with wine/beer with dinner instead.  This may have helped..........I hope so.

    I saw my friends pharmacist DH also that day to say hello and he told me that the gerd meds I take are linked to cancer so now I have to discuss that with the PCP because I cannot do without the meds (I've tried) and I cannot cope with the acid.

  • marybast
    marybast Member Posts: 44

    Wooo, lestwin, this is new to me, that GERD meds are linked to cancer. I know prolonged acid reflux is linked to esophageal cancer and prolonged use of Prilosec is linked to decreased bone density, but I can't find anything linking the GERD meds themselves to cancer. Can you get more information from your friend's pharmacist? I'm gradually decreasing acid reflux with diet and other supplements, but still need the occasional Zantac or even a Prilosec.

  • nativemainer
    nativemainer Member Posts: 7,923

    Not to change the subject, but I just read this in my FDA update e-mail:

    Message 2
    From: U.S. Food & Drug Administration (FDA)
    Date: Jun, Thu 2 2011 14:11 -0400 (EDT)
    Subject: FDA Safety Communication: Breast Cancer Screening - Thermography is Not an Alternative to Mammography

    Dear Colleague,

    Today, FDA warned women not to substitute breast thermography for mammography to screen for breast cancer. Some health care providers are promoting breast thermography on their websites and claiming that thermography is superior to mammography as a screening method for breast cancer, because it does not require radiation exposure or breast compression.

    The FDA is unaware of any valid scientific evidence showing that thermography, when used alone, is effective in screening for breast cancer. To date, the FDA has not approved a thermography device (also referred to as a telethermographic device) for use as a stand-alone to screen or diagnose breast cancer. However, the FDA has previously cleared thermography devices for use only as an adjunctive diagnostic tool for breast cancer screening and diagnosis. Therefore, thermography devices should not be used as a stand-alone method for breast cancer screening or diagnosis.

    Additional information can be found at the following link: http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm257259.htm

    Thank you for your continued support of the FDA and its mission.

    Sincerely,

    Marsha Henderson

    U.S. Food and Drug Administration

    Assistant Commissioner for Women's Health (Acting)

    Back on subject:  I found this in the British Journal of Cancer: Br J Cancer. 2009 May 5; 100(9): 1503-1507.
    Published online 2009 April 7. doi: 10.1038/sj.bjc.6605024.

    PMCID: PMC2694435
    Copyright 2009, Cancer Research UK
    Proton pump inhibitors and risk of gastric cancer: a population-based cohort study
    A H Poulsen,1* S Christensen,2 J K McLaughlin,3,4 R W Thomsen,2 H T Sørensen,2 J H Olsen,1 and S Friis1
    1Institute of Cancer Epidemiology, Danish Cancer Society, Strandboulevarden 49, DK-2100 Copenhagen, Denmark
    2Department of Clinical Epidemiology, Aarhus University Hospital, Ole Worms allé 150, DK-8000 Aarhus, Denmark
    3International Epidemiology Institute, 1455 Research Boulevard, Rockville MD 20850, USA
    4Department of Medicine, Vanderbilt University Medical Center, Vanderbilt-Ingram Comprehensive Cancer Center, Nashville, TN 37232, USA
    *Author for correspondence: Email: aslak@cancer.dk
    Received December 19, 2008; Revised March 13, 2009; Accepted March 13, 2009.

    Other Sections▼

    Abstract
    Proton pump inhibitor (PPI) use leads to hypergastrinaemia, which has been associated with gastrointestinal neoplasia. We evaluated the association between PPI use and risk of gastric cancer using population-based health-care registers in North Jutland, Denmark, during 1990-2003. We compared incidence rates among new users of PPI (n=18 790) or histamine-2-antagonists (H2RAs) (n=17 478) and non-users of either drug. Poisson regression analysis was used to estimate incidence rate ratios (IRRs) adjusted for multiple confounders. We incorporated a 1-year lag time to address potential reverse causation. We identified 109 gastric cancer cases among PPI users and 52 cases among H2RA users. After incorporating the 1-year lag time, we observed IRRs for gastric cancer of 1.2 (95% CI: 0.8-2.0) among PPI users and 1.2 (95% CI: 0.8-1.8) among H2RA users compared with non-users. These estimates are in contrast to significant overall IRRs of 9.0 and 2.8, respectively, without the lag time. In lag time analyses, increased IRRs were observed among PPI users with the largest number of prescriptions or the longest follow-up compared with H2RA users or non-users. Although our results point to a major influence of reverse causation and confounding by indication on the association between PPI use and gastric cancer incidence, the finding of increased incidence among PPI users with most prescriptions and longest follow-up warrants further investigation.

    (http://www.nature.com/bjc/journal/v100/n9/full/6605024a.html)

    From the medical journal Gastroenterology in 2007: Chronic Proton Pump Inhibitor Therapy and the Risk of Colorectal Cancer

    Yang YX, Hennessy S, Propert K, Hwang WT, Sedarat A, Lewis JD
    Gastroenterology. 2007;133:748-754

    Abstract

    Proton Pump Inhibitor Use and Risk of Colorectal Cancer: A Population-Based, Case-Control Study

    Robertson DJ, Larsson H, Friis S, Pedersen L; Baron JA; Sorensen HT
    Gastroenterology. 2007;133:755-760

    Abstract

    Editor's Note: Dr. Johnson's summary and commentary collaboratively address these 2 reports on chronic proton-pump inhibitor therapy and the risk for colorectal cancer.
    Summary

    Proton-pump inhibitors (PPIs) are widely prescribed by physicians who provide care for patients with gastric-acid-related diseases. This includes those patients with peptic ulcer disease, nonsteroidal anti-inflammatory drug-related ulcer, and gastroesophageal reflux-related diseases. Although PPIs are considered to be extremely safe[1] and have been approved for long-term use, concerns have been raised about the long-term effect of prolonged acid inhibition and elevation of serum gastrin level. Gastrin has trophic effects on tissue throughout the gastrointestinal tract. In particular, there has been significant controversy regarding the potential effect of increased gastrin levels and colorectal cancer risk. High gastrin levels have been associated with increased growth and proliferation of colon cancer cells in vitro.[2] In contrast, antagonism of gastrin has been shown to inhibit the growth of colorectal cancer.[3] Additionally, a nested case-control study suggested that elevated gastrin levels were associated with a 4-fold increased risk for development of colorectal cancer.[4] Given that PPIs increase serum gastrin levels, the authors of these 2 reports examined whether there is a potential link between PPIs and increased colorectal cancer risk.

    The first study by Yang and colleagues was a nested case-control analysis of the General Practice Research Database, a computerized medical record system of approximately 700 general medical practices in the United Kingdom. The analysis was restricted to exclude patients with less than 5 years of follow-up, those younger than 50 years of age at database enrollment, and those with a history of colorectal cancer before the start of the standard database follow-up. Accordingly, a cohort of 890,368 remained from the total database of more than 8 million patients in the registry. "Cases" were defined as any patient with an initial diagnosis of colorectal cancer who had accumulated at least 5 years of follow-up. For each case, at least 10 controls were selected from the database and additionally carefully matched for practice site, time period, and duration of follow-up. History of PPI use was documented from the same database. From among the 4432 incident cases of colorectal cancer, the study authors found no evidence of increased risk for colorectal cancer associated with long-term use of PPIs over 5 years (odds ratio [OR], 1.1; 95% confidence interval [CI], 0.7-1.9). There was an association found between recent (less than 1 year) PPI use and the risk for colorectal cancer (OR, 2.6; 95% CI, 2.3-2.9); P < .001). However, this risk was seen exclusively with short-term use and there was no risk associated with longer-term use, thus suggesting alternative factors affecting the diagnosis and not a true drug effect. The authors also found no significant overall association between a history of pernicious anemia and the risk of colorectal cancer developing (OR, 0.9; 95% CI, 0..6-1.3).

    In the second report, Robertson and colleagues conducted a population-based case-control study in a county of 500,000 inhabitants in Denmark. The population in this country has access to free hospital care. As with the Yang study, the main outcome interest was incident cases of colorectal cancer and the possible association with PPI exposure. To minimize the possible other reasons for exposure to PPIs, patients with PPI use of less than 1 year were excluded from the analysis. A total of 5589 cases of colorectal cancer were compared with 55,890 appropriately matched controls. There was no evidence of associated colorectal cancer risk when comparing "ever" users of PPIs to "never/rare" users (OR, 1.11; 95% CI, 0.97-1.27). Further support for this observation was evident by the lack of association of increased colorectal cancer risk among long-term (more than 7 years) users of PPIs (OR, 1.09; 95% CI, 0.58-2.06).

    (http://www.medscape.com/viewarticle/563371)

    These 2 studies are inconclusive about PPI use (drugs like prilosec, protonic, nexium) and higher rate of gastric or colon cancer.  Neither was done in the US (not unusual) and both indicate more reserach is needed.  I'll keep looking and see if I can find any more recent research.  

  • shells43
    shells43 Member Posts: 499

    Hi All,

    Is anyone taking Effexor? I took it for the first time today and I was nauseous all morning. I was told it would take a couple of weeks before I noticed any change in hot flashes. I'm not sure I can make it that long if the nausea doesn't improve. Can anyone tell me if this lasts?

  • patoo
    patoo Member Posts: 5,243

    He shelleyj43, I can't answer but hopefully someone will come by who has something positive to tell you.  It is the weekend so please don't get worried if an answer doesn't come quickly.

  • Curlylocks
    Curlylocks Member Posts: 61

    Hi Shelley,

    I took effexor for 2.5 years while on Armidex....my hotflashes were reduced greatly within 3-4 days after starting it.  The nausea should disappate pretty quickly too as your body gets used to the drug.  Dont stop this drug abrutly or cold turkey...you have to wean from it.

     What dosage are you taking?  I was taking 75 mg...it also worked great to even out my moods too!

     I hope you get some relief soo....I stopped Effexor 6 months ago and finished Armidex in February after 5 years on it.

     Michele

  • shells43
    shells43 Member Posts: 499

    Thanks, Michele. I didn't take it this morning, I thought I would try taking it tonight, with food, and see if the nausea is any better. Also since it made me sleepy, maybe it will help me sleep a little better. I think it is 35 mg, but she wrote it so I could take one or two. The Onc NP said she is taking 70 mg (35 x 2 per day). She said to give it a couple of weeks and if I didn't notice any difference to take two at once or twice per day. How do you take yours? With food or without? Congrats on finishing your Arimidex! That is awesome!

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Shelly, I take Effexor. Getting onto the drug takes a little while. You go up gradually in dosage, 37.5 to 75 to 150 or more if needed. I have never paid any attention to whether or not I had food. I take my entire dose at once, I use extended release, which I think is the best option. It is a very good drug and will help you with mood and (as I understand) hot flashes. I haven't gotten hot flashes as of today. :) I have used both brand name and generic Effexor, I found no difference.  When it is time to go off of it you go back down gradually, no rush, go slowly and you will do fine.

    Ginger

  • barbaraanne
    barbaraanne Member Posts: 2

    good morning...  i just finished radiation...which i did not find to be awful at all... a little tired still and still very bright red in area of boost.  hoping that will go dissipate shortly.  i will be starting the generic form of airmidex next week.  i was not a good candidate for tamoxifen because my antidepressant (which i LOVE lol...lexapro)...interacts with it by making it less effective.  hope i do ok with the arimidex.  i went through menopause 13 years ago... and did not have a difficult time with it.  this may sound like such a generic "remedy" for hot flashes, but when i was going through some tricky days with radiation discomfort, i bought a small 6 inch fan and just directed it to the area... really helped!  hope this helps someone! worth a try!

  • barbaraanne
    barbaraanne Member Posts: 2

    good morning...  i just finished radiation...which i did not find to be awful at all... a little tired still and still very bright red in area of boost.  hoping that will go dissipate shortly.  i will be starting the generic form of airmidex next week.  i was not a good candidate for tamoxifen because my antidepressant (which i LOVE lol...lexapro)...interacts with it by making it less effective.  hope i do ok with the arimidex.  i went through menopause 13 years ago... and did not have a difficult time with it.  this may sound like such a generic "remedy" for hot flashes, but when i was going through some tricky days with radiation discomfort, i bought a small 6 inch fan and just directed it to the area... really helped!  hope this helps someone! worth a try!

  • ruthbru
    ruthbru Member Posts: 47,698

    fans, fans, fans.....I bought a small tower fan and put right by my computer at work, had the tiny 6 incher to rest on my stomach while watching TV, a big hige fan by the bed at night. Also, if you can cool off your wrists, that cools off the rest of your body. Have a cold water bottle or pop can handy and roll over your wrists. At a restaurant you can rest your wrist against the side of your water glass. Looser clothes (get rid of turtlenecks), layers you can get on and off easily (like a zip up sweater instead of pullover) help too. It should all level off with time. Best of Luck!

  • sharonJW
    sharonJW Member Posts: 1

    Effexor very beneficial for me. Don't stop taking it suddenly! Forgot mine for a few days and had a lot of dizziness. It did take about 2 weeks for the nausea to go away. Be patient. Worth it.

  • jancie
    jancie Member Posts: 403
    I tried effexor and just could not get the med adjusted to where I felt good.  Got on Arimidex so that I could take zoloft again.  I am so much happier on zoloft Laughing  I am not longer so bitchy, critical, etc. like I was for almost a year.  I just can't believe the difference a good anti-depressant does when you have the right one at the right dosage.
  • shells43
    shells43 Member Posts: 499

    Well, I got brave and took the Effexor again last night. I didn't sleep very well, but I wasn't wide awake either. I didn't have any nausea so that is good.  After only 2 doses I think I'm having fewer hot flashes, is that possible? Placebo effect? I only used my fan twice at work instead of 5 or 6 times.  I am excited that it might really work and I could get some relief! The dosage is 37.5 mg, I was close but wrong before.  Now if I could just sleep!

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Tell your doc you aren't sleeping. I tried linesta and wasn't impressed. I will try it again before I ask for something else. I took one of my lorazepams from chemo days last night and I did drift off to sleep. 

    I still, amazingly don't have hot flashes and hope I don't get any. I have had no estorgen pills for 3 years and no ovaries for about 16 or so years.  So maybe my bod doesn't have to go through a sharp change. I do feel a little crankywhich I haven't since I had my periods back 16 years ago before hysterectomy. I am just so damn nice since then. No edge.

    As long as the crankiness deminishes as I get used to the Arimidxex I'll be good, I think. I have been on the arimidex for three or more weeks now. I forgot, hah, my brain is still forgetting some things.

    LAters GInger

  • nativemainer
    nativemainer Member Posts: 7,923

    shelley--ALL the antidepressants can cause some nausea and sleepiness when you first start taking it.  If you can stick it out for a week or two both of those problems usually go away.  I remember starting prozac many years ago and needing lots of coffee to get through the day during the first week.  Be cautious about taking it at bedtime, that can cause bizarre and intense dreams.  And you can see a decrease in hot flashes right after you start taking it since less is needed in the bloodstream for that than for depression. 

  • shells43
    shells43 Member Posts: 499

    Work was what I was thinking about when I took it last night. I didn't want to be a zombie at work. Gonna try it one more time tonight, I don't remember having any weird dreams.Any dreams would be an improvement! :)

  • ruthbru
    ruthbru Member Posts: 47,698

    Ambien is a good sleeping pill.

  • kal_1865
    kal_1865 Member Posts: 145

    so far after 3 weeks on the little white pill, I just have 2-3 bouts of night sweats and a little nausea during the day.  do you think that is all I will have to deal with or this a cumulative thing and the SE's get worse?

  • ruthbru
    ruthbru Member Posts: 47,698

    As your body adjusts it should actually get better.

  • kal_1865
    kal_1865 Member Posts: 145
    thanks ruthbru, i was hoping that this might be my "status" for awhile (like the next 5 years...).  a couple of night sweats, a little less sleep due to the night sweats and some aggadah (yiddish term) is nothing....
  • ruthbru
    ruthbru Member Posts: 47,698

    I found that after about 6 months the night sweats pretty much went away. And keep moving, moving, moving to keep the bones good and minimize any creakiness you may feel.