Life after Arimidex/Aromasin?

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ShariPDX
ShariPDX Member Posts: 29

I'm almost 3 years into taking the 5 years of the anti-hormone drugs.  When the drug regemine is completed, do you get your bones back if they've lost some density?  Do the pains go away?  How about the sleep problems, and personal sensitivity and/or dryness?

Do you feel haunted by a possible return of the cancer or liberated to be through with treatments?  I assume that I will be through with treatments after a bi-lateral, chemo, and 5 years of drugs.

Any words from the more experienced members out there? 

I was diagnosed @ 63 via my usual mammo, ultra-sound, bioptsy, MRI, etc.  I've always had "dense" breasts.

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Comments

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited June 2009

    Hi there, I finished up with the hormone therapy three years ago..

    I can lose weight now, my pains are almost gone, no sleep problems but I am

    more tired, but then I am eight years older now...about the bones, I don't know

    I started taking fosamax about 18 months into Arimidex...I stopped when

    I finished up the Arimidex, but the bones still went down..so I started again

    finally after about

    two years the bones started being a tiny bit better. 

    PS I am 66 years old

  • cupcake7
    cupcake7 Member Posts: 400
    edited July 2009

    I was on Arimidex and the bone pain was so severe during radiation and then returned afterwards to once again get the pain all over.  My onc switched me to Famera, but today I can hardly walk the bones, all over, hurt really bad.  Is this normal?  I'm so afraid something isn't right.  I know after a year of tx any pain scares you, but I can't see living like this.  I was searching to see if anyone is or has experienced this.  I am 63 years old, stage 111A bc.  I did 6 months of Taxotere/Carboplatin and Herceptin that I am still on.  A Modified Radical Mastectomy and 30 tx of Radiation.  I feel worse now than ever before.  I'm so afraid of Bone Cancer and wonder if the bc can go to that?  The onc has ordered a bone scan and blood test for the liver.

  • spar2
    spar2 Member Posts: 6,827
    edited August 2009

    Have been off arimidex for a couple of months now and the bone pain has lessened, I am taking calcium with vit D and magnesium also.  Still no sex drive and still dry but am hoping and praying for that to get better.  I have been taking melatonin to sleep and it has helped a lot.  I am wondering if life ever really returns to normal.  I have lost 10 pounds, gained a lot of weight on it. It is a little scary to think of being on nothing to prevent cancer now but I have heard it stays in your system a long time and my oncologist says absolutely no to taking it over 5 years so even if I wanted it I couldn't get it.  Praying for the best for all of us.

  • jetstream1951
    jetstream1951 Member Posts: 12
    edited September 2009

    Hello all Breast Cancer Survivors!!

    I am on my last year of Arimidex. Eleven more months to go! Yahoo!!! I have had all the symtoms everyone else has had.  I get soo tired at times at all the pain & depression that goes along with it, that I just want it all to stop NOW! But I keep marching on. I know that my onc has my best intrest at heart.  Now speaking of the heart....has anyone out there come up with complications with your heart, other than high blood pressure from taking Arimidex??  I now have to go in on Thursday & get fitted with a heart halter.  I had an experience with rapid heart rate.  He put me on high blood pressure amonth ago & now wants to check to see if there is an underlying problem. So far since taking the med, I have been fine. No rapid heart beats at all. By the way, I am 55 yrs of age.  Would really like to know the answer to this question as it would be helpful for me but yet anyone else.   Thankyou, & best wishes to all!! Jet

  • Snowbird
    Snowbird Member Posts: 124
    edited January 2010

    Great info here, ladies. Thanks! I'm coming up on one year on Arimidex and have 4 more to go. SEs have lessened considerably, except for the thinning hair! Dare I hope that it will thicken back to my original mane once I stop taking this med? Anyone?

  • Nichole
    Nichole Member Posts: 2
    edited January 2010

    OMG Embarassed I want my sex drive back.!!!!!

    I have been on Arimidex for over 12 months .I am 51 years old I used to love sex but I could not care less about it now.Its is so sad .Is this it now for me  ? No one I have tried to talk to about it understands .Their answer is more lubrication .ARRRGHYell thats not it .I now have less sensations every where .Arimidex is keeping me alive ( I hope ). But there is a huge price to pay .

    I thank God I have such a caring, understanding husband .

    Does anyone else have the same problems ?

  • gwerfil
    gwerfil Member Posts: 39
    edited January 2010

    Nichole, I know what you mean.It is a huge price to pay, but maybe we can get a discount. I have been on Arimidex for nearly eight months. The diminished sex drive has been very discouraging. I cried plenty of tears over it. It was a LOSS. I recently read about coconut oil on BC.org and it really has helped me. I used to use coconut oil conditioner on my hair during beach vacations and it worked wonders on restoring shine and softness to my parched locks. It's great for dry skin, so I figured, what the heck, I'd give it a try. I got 100% pure organic coconut oil at our local organic foods store. It's a thick white paste which liquefies on contact. It's not slimy like silicone-based stuff or sticky like vaseline (ugh) and I put it on my husband. LOTS of it. Works wonders. If you are having trouble with desire or getting started, light the candles, put on some music and use a vibrator to get going. Then use the coconut oil. It works. My husband says things haven't changed as far as he's concerned, and that he's a happy man. He loved that it was my idea. I have to say that I am still a little anxious ahead of time, because I'm afraid it will be painful. But after using coconut oil consistently for several weeks, it's been getting better and better. It had been the last inch that was killing me, if you know what I mean. I felt the same way for a few months after the birth of my child. I thought maybe it was because I was breast feeding. I just felt smaller and "closed for business."  I have to assume that the coconut oil must be softening the tissues, because of the significant improvement. Maybe less discomfort will help you relax and start to have more sensation.

    It is so sad that we have to go through this, and we don't want to give up on our sexuality. Give it a try. It has made me feel so much better about myself and also that I am not letting my husband down and so I'm more hopeful and less hangdog these days. On a side note, the wonderful aroma of coconut oil reminds us of Cinnabons! (Cinnamon bun franchise at highway rest stops across the US.)

    Hope I wasn't too graphic. I know you didn't want to hear about more lubrication, but I do hope this helps. You can get through this and things can be better. It may never be like it was when we were in our twenties (I'm also in my fifties) but before BC my husband and I were going strong after 27 years together and now I know that sex can be pleasurable again. 

  • susanmary
    susanmary Member Posts: 137
    edited May 2010

    My 5 years of Aromasin should be up in June, after a year of Tamoxifen and 15 months of Arimidex. I started the count down in January and the the onc suggested that I do another 5 years of Aromasin as trials have proven the extra 5 will drop the recurrence by 30% (think that was the percentage). I more or less stopped listening when I heard another 5 years. I certainly was in the doldrums for a while, but I seem to be getting my head around the idea.

  • susandale
    susandale Member Posts: 13
    edited June 2010

    hi,

    newbie here.

    just finished  the first 10 days of arimidex.

    cpl of  things:

    been taking 2000 D/day for about 3months. My level went up in 6 wks, and then when i reduced the dose, it went  down some, so i'm  going to maintain 1500-2000. My hair has been getting really thick [ it had been  thinning from age I presume] and my dentist says D is also great for pain, jt pain in particular. So hope it helps w/ SE of  the drug.

     Also have a  thickened uterine lining of 6.7mm, so they want to do a D&C.

    Since I  am  not sloughing anything off it these days[ I'm 65], what  do they scrape?? and what are the after effects? for how  long?  if anyone has had experience w/  that.

    i was cramping for a week after they tried to do a biopsy in the office on my stenosed  cervix!! So beware  their thinking of  doing that to you if you are very post menopausal!!

  • susandale
    susandale Member Posts: 13
    edited July 2010

    my hair was  starting to  thin a bit before bc.

    i've only  been on arimidex 1  whole month[ 23 more to go!], and my hair seems thicker!!..., but i am thinking it may be vitamin d i am taking. i have heard that thickens  hair! and helps w/ chronic pain as well. I'm takingn 1500-200/day. my primary care doc and onc donc seem to think 35-45 is fine. i was 25 at first. i think more is better. at least 50 is  what i am going for,. my dentist says it helps his chronic  bone/joint pain significantly.

  • susandale
    susandale Member Posts: 13
    edited July 2010

    i love your info about  coconut oil. i was working w/ a vibrator asap hoping i will keep some libido  going! we do use a lot of ky  goo. i'm 65, so not a wild child.., but enjoy  enjoying. and want to do eveything i can to feel normal. exercise helps too. but i am a newbie at  ! month into ameridex, so far okay. .

  • lisa15
    lisa15 Member Posts: 2
    edited July 2010

    Thank you so much for all that information. I have been on arimidex for 5 years and have not had sex and lost all my desire to have it.  I have been depressed about it and then on top of that had to take lexapro to help with my anxiety.  So you are saying that coconut oil is okay for lubrication?  I am going off of arimidex in a week and hopefully my drive will come back.

  • susandale
    susandale Member Posts: 13
    edited August 2010

    okay, i've been on arimidex now for 2 months.

    went  to see onc donc july 12th, and he said, "ok, tell me you  hardly know you're taking a  drug'" and i  agreed. very mild hot flashes, always have  jt  pain, and it's helped w/ exercise.., it was so far, so  good; fingers crossed. felt like a healthy  sexy  65 yr old amazon often! 

    the very next day watery  diarhhea started, and it's been  iffy  since.  It's been about 4wks.

    i've played w/  diet[ which  was/is hi fiber/fruits, veggies,  whole grains, flax seed etc], and finally started  taking a pepto bismol tab once a day. as well lactaid, someone here  suggested it.

    pepto helps, but i  used to have great bms! had heard that the heavier they were, the more estradiol was being taken out of yr  body, so i loved it! and felt proactive w/ my great  diet and exercise etc.

    now, flour products seem to help ' constipate' me, which is  sort of necessary[ tho i feel  counterproductive health-wise] , as my intestines  no longer produce  good formed product. 

    It started after a month of  the real drug, so it isnt the generic. i'm calling onc  donc tomorrow. but  expect they will just say imodium  etc, and i'd like a  break from the med.

    my husband suggested  that if it took a month to happen, prob need a month to get  normal again. but it seems  very unhealthy to have no bulking happen in my  intestines! 

    anyone have this prob, and have any  helpful experiences? 

  • kt57
    kt57 Member Posts: 425
    edited August 2010

    susandale;

    You may want to post your question on this thread:

    http://community.breastcancer.org/forum/78/topic/731121?page=119#idx_3550

    I't has more active discussion about Arimidex....lots of great info and helpful ladies.

  • julia520
    julia520 Member Posts: 2
    edited December 2010
  • jembs
    jembs Member Posts: 194
    edited December 2010

    Hi, I have 338 days Arimidex days left.  I have major depression, 30 extra pounds, muscle and bone aches, cognitive challenges and yes, I am determined to finish this course of treatment.  I am hoping that I will get 'back to normal' and will be able to go back to work, look in a mirror, be happy to be alive.  I have been told to 'quit my b...., that I am alive"...but not really so, I exist.  Having had post partum depression, my docs feel the depression is caused by the hormone tx.  I hope so.....  Anyone been here and finished this tx and returned to the land of the living?  I would love to know it is possible. 

    I had 6 FEC, 17 Herceptin 20 Rads, 2 surgeries and coped well until the hormone tx...

  • sally627
    sally627 Member Posts: 3
    edited January 2011

    I am 3 months short of finishing my 5 years on Arimidex.  I have had many of the side effects that have been mentioned, but none as bad as the vaginal dryness.  Lack of desire can be ignored or faked but the physical pain has prevented us from having sex in the past 2 years.  I have been sort of biding my time, looking forward to ending Arimidex and hopefully regaining some of the natural moisture I had before (even though that was dwindling with age).  I am 63.  I saw my gynocologist today for annual visit (2 1/2 years after my last painful PAP!).  When I mentioned the problem and my anticipation of returning to a normal sex life, she pretty much implied that it would never happen.  I was completely discouraged. I have NOT shared this info with my husband yet since we both have been looking at the 5 year mark as something to look forward to in terms of renewed sex life.   She did write a Rx for Vagifem tablets which she said might help a little, but she sure wasn't very encouraging.   Have any of you used those?  Did they help?   I will definitely try the coconut oil, but my skin is SO sensitive that I hope it doesn't irritate.

  • ShariPDX
    ShariPDX Member Posts: 29
    edited January 2011

    Vagifem tablets contain estradiol, the main estrogen hormone produced by the ovaries before menopause and we take Arimidex to STOP all of our female hormone production. Be sure to discuss this with your oncologist or you may be undoing the 5 years of Arimidex treatment.



    I'd be very careful before taking or using anything that contains hormones or mimics hormones.

  • sally627
    sally627 Member Posts: 3
    edited January 2011

    Lisa - Please let us know if your sex drive returns after you've been off the Arimidex for a while.  I still have 3 months to go and I'm hoping for some big changes!

  • ILMBeaches
    ILMBeaches Member Posts: 45
    edited April 2011
    sally627....I have been using vagifem (pill insert) for over a year.  Both my gyn and onco agreed & ok'd me to use it Very little gets into the blood stream according to them and another friend who is an onco nurse.  Definitely helped with the dryness. Sex drive is another matter Cry I have one more year on arimidex.
  • whitechocolate
    whitechocolate Member Posts: 9
    edited September 2011

    Hi Whitechocolate here, I hav'nt been on the discussion board for quite a while as I'm not very computer skilled, but here goes.  Diagnosed 2007 BC had mastectomy then breast reconstruction, then all the usual treatment chemo,radio then the drug Hercepton,then Arimidex for five years.  well as a lot of yous out there will know the terrible Arimidex affects sore joints hair thinning or loss.  I stayed the course for two half years,then asked my doctor to take me off. He gave me a six week break from Arimidex, I was amaized at how quickly the pain began too leave my joints, but then he put me on Aromasin and then all the side afects started again.  Now I've come off my medication, although I'm a wee bit scared I've started taking IP-6 with inositol as it's suppose to be very good for the immune system.. Is anyone out they'r know much or taking this IP-6 as I read about it on the internet and the reviews sounded really good. Bye for now whitechocolate.   PS I'm a you 69yrs

  • whitechocolate
    whitechocolate Member Posts: 9
    edited September 2011

    I'm just learning computing and I dont undestand what the problem is with this submission, can you explain, and where will I find a reply. Whitechocolate

  • ShariPDX
    ShariPDX Member Posts: 29
    edited September 2011

    I found this on pubmed...

    Nutr Cancer. 2006;55(2):109-25.

    Protection against cancer by dietary IP6 and inositol.

    Vucenik I, Shamsuddin AM.

    Source

    Department of Pathology, University of Maryland School of Medicine, MD 21201, USA. ivucenik@umaryland.edu

    Abstract

    Inositol hexaphosphate (IP(6)) is a naturally occurring polyphosphorylated carbohydrate, abundantly present in many plant sources and in certain high-fiber diets, such as cereals and legumes. In addition to being found in plants, IP(6) is contained in almost all mammalian cells, although in much smaller amounts, where it is important in regulating vital cellular functions such as signal transduction, cell proliferation, and differentiation. For a long time IP(6) has been recognized as a natural antioxidant. Recently IP(6) has received much attention for its role in cancer prevention and control of experimental tumor growth, progression, and metastasis. In addition, IP(6) possesses other significant benefits for human health, such as the ability to enhance immune system, prevent pathological calcification and kidney stone formation, lower elevated serum cholesterol, and reduce pathological platelet activity. In this review we show the efficacy and discuss some of the molecular mechanisms that govern the action of this dietary agent. Exogenously administered IP(6) is rapidly taken up into cells and dephosphorylated to lower inositol phosphates, which further affect signal transduction pathways resulting in cell cycle arrest. A striking anticancer action of IP(6) was demonstrated in different experimental models. In addition to reducing cell proliferation, IP(6) also induces differentiation of malignant cells. Enhanced immunity and antioxidant properties also contribute to tumor cell destruction. Preliminary studies in humans show that IP(6) and inositol, the precursor molecule of IP(6), appear to enhance the anticancer effect of conventional chemotherapy, control cancer metastases, and improve quality of life. Because it is abundantly present in regular diet, efficiently absorbed from the gastrointestinal tract, and safe, IP(6) + inositol holds great promise in our strategies for cancer prevention and therapy. There is clearly enough evidence to justify the initiation of full-scale clinical trials in humans.

    PMID:
    17044765
    [PubMed - indexed for MEDLINE]
    http://www.ncbi.nlm.nih.gov/pubmed/17044765

    where do one get this???Smile

  • whitechocolate
    whitechocolate Member Posts: 9
    edited September 2011

    Whitechocolate,I'll make this short. When I put in a topic could someone, anyone tell me where on the page do I find my reply,as I'm very new at this computing. A 69yrs young but a dinosaur at any type of  technology Bye whitechocolate

    PS. I know it say's your reply will appear at  the  bottom of this topic, below the last  post,but I've looked and still can not find it, so please help

  • ShariPDX
    ShariPDX Member Posts: 29
    edited September 2011

    Whitechocolate, I'm replying to your post that says 9 hrs ago, today 9/17 in the USA.

    Let's see if and where this reply will show up, OK?

    I'm 68, not too bad at computers, but I have no idea where the replies eventually show up!

    Shari

    Oregon

  • RoseR29186
    RoseR29186 Member Posts: 13
    edited February 2012

    There's an extensive discussion re: sexual issues in another thread on this board. Some swear a huge improvement via a prescription compound put together by your pharmacist referred to as "Scream Cream". (This is NOT the Scream Cream that you can buy online).

  • Doreenbateman
    Doreenbateman Member Posts: 1
    edited October 2012

    You know Lisa you have just encouraged me to go have a bone density scan - can you believe it but no-one has ever told me to have one because of cancer. In 2009 my hubby and I decided to go to the UK as my sister had been diagnosed with bowel cancer and as she had just prior to that lost her husband and daughter to brain cancer, we felt she would need some support during the surgery etc. Well after being there for 6 weeks I was diagnosed with the dreaded breast cancer. Had surgery in the UK, then came home and started chemo and 12 weeks radiation. My clinical oncologist is great, put me onto Arimidex. First 18 months OK but this past year has been awful, all the SE's that you dear  people mention. When I say no-one told me about Bone Density I'm not sure who that should have been. The surgeon in the UK, my clinical Oncolgist or the Dr that I see once a year from Radiation. I feelcompletely and absolutely stupid that I didnt research more so phoned my GP today and have an appointment in a few days for the scan, so thank you. I only joined this forum today and look forward to learning from you all. God Bless.

  • ginas
    ginas Member Posts: 5
    edited December 2013

    It  specifically says in the insert. NOT for hormone driven breast  cancer. I was on Vagifem before my diagnosis. Not caused by this wonderful drug. I have had about 5 doctors almost bury me. Be very careful!

  • ginas
    ginas Member Posts: 5
    edited December 2013


    Be very careful with the Vitamin D. Now recommended dosage is no more than 800 mg a day. Builds up in your body like Vitamin A which almost killed me thanks to one dumb doctor years ago. My internist took me off any Vitamin D supplement due to high in acceptable range. MORE IS NOT BETTER!!!!

  • Smithmd12
    Smithmd12 Member Posts: 1
    edited November 2015

    Hello, My name is Michelle! I am 47 years old, diagnosed early at 42 with an aggressive breast cancer. I have 1 day left of my 5 year Arimidex treatment . For those of you just now starting...sex drive seemed to improve a little after about 2 years. Dryness improved some and internal discomfort, not so much, but I am curious to see if that changes over the next several months. I think my worst side effects have been hot flashes and weight gain that I can't seem to get off...~20lbs...hoping that changes quickly!! Don't think I realized that the weight gain was related. I also had a full hysterectomy just before starting Arimidex and just assumed I was doomed to a post-menopausal future regardless of the meds.

    As far as bone pain, I can't say for sure that has been an issue or whether what I have been dealing with is injury related occurrence that didn't heal correctly. I recall during chemo days having infusions to quickly build up white cell count about a week after chemo...that was some major bone pain. I have not had that kind of bone pain on Arimidex. Joint issues have been more prevalent for me...hip, SI joint, lower back, right shoulder most recently.

    I had a bone scan when I first started Arimidex and another one 2.5 years later. Already had osteoporosis in lower lumbar and neck so my onc started me on the annual infusion of Reclast and 1000ud D which I don't take. I have had 2 Reclast infusions so far. First one I was sick with flu like symptoms for 3 days; second one I was fine. My dentist has noticed some gum and bone issues after each infusion but seems to improve with 6 months.

    At my last appointment, my onc ran a Breast Cancer Index test to determine whether another 5 years of Arimidex would be beneficial. Seems there is some new research that supports continuation (5 more yrs) for a small percentage of people...something like 7% if I remember correctly. I was not one of those and I was sort of happy because I was looking forward to ending the Arimidex. The BCI also provides a prognosis % for recurrence over the next 5 years. I had only 2.3% chance of recurrence which I thought was great. I must say, it is still a little scary knowing that my safety net will soon be ending. I will have to make some life changes to keep myself healthy. I was highly motivated to make similar changes within the first 6-12 months of my diagnosis, but seemed to gradually slip after all the surgeries, chemo and radiation was done and I was well on my way into Arimidex.

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