Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Arimidex - Coping with the SE's

1261262264266267281

Comments

  • carolehalston
    carolehalston Member Posts: 8,212

    Very good advice from Ruthbru.ThumbsUp

  • MarieK
    MarieK Member Posts: 467

    Thanks NativeMainer for your words of support.  I'm happy to say that the anxiety/panic attacks have stopped...for now.

    Although I recently switched back to Anastrozole (miscalculated on reordering my Arimidex refill) and for a few days I had a killer headache like when I first started taking it.

    As soon as I got back on the brand name Arimidex the headaches went away.  There must be something in the generic - different fillers? - that doesn't agree with me.

  • MarieK
    MarieK Member Posts: 467

    I had a i phone case made because hubby noticed that I was a bit "snarky" after BC.

    image

  • MarieK
    MarieK Member Posts: 467

    Thanks Golden01 for posting that link.  I am most definitely creaky when I first get up in the morning.  It's been worse since I've been on Arimidex.

    I'm only 51, not overweight and fairly active but you'd think I was a 90 year old lady if you saw me in the morning.

    I do a bit of stretching and some quick yoga and I feel so much better!

    image

  • Golden01
    Golden01 Member Posts: 527

    You are welcome! Love the stretches. 

  • nativemainer
    nativemainer Member Posts: 7,923

    Love the phone case, and the Yoga poses!  Thanks for sharing. 

  • PinkCarn
    PinkCarn Member Posts: 35

    Ruth you are so right! I am starting my 3rd week of Amiridex. But I am only 1.5 weeks post rads. So I am just hanging in there for awhile until I can sort out what is going on with me. I am doing PT for congested lymph and trying to prevent lymphedema. I am also adding some other PT like or yoga positions. Due to a bone spur I had to stop my tread mill which bums me. I appreciate the suggestions. Thanks to all

  • ruthbru
    ruthbru Member Posts: 47,697

    Biking, swimming. Come over to the Let's Post Our Daily Exercise thread on the Fitness Forum if you want some fun exercise budd

  • patty9999
    patty9999 Member Posts: 43

    Thanks for the yoga poses.  Love bunnies.  Maybe it'll inspire me to do something.  Am still having problems with my back/foot.  Have had two injections now.  Am better than after the first one, but still have problems with foot swelling and muscles (or something) aching in foot.   They keep telling me it's associated with my back.

  • Bexter3
    Bexter3 Member Posts: 15

    I'm 45 and been on Arimidex 3 1/2 years after a hysterectomy and Tamoxifen for 1 year before. I swore I'd take Aimidex the full 5 years, now ten, but I have every side effect in the book and my quality of life stinks. I have an 11 year old and keep saying it's best for him in the long run. But is it? To have a mom who can barely walk from bone and joint pain, fatigued and sleepy all day... Anyone else quit? I'm seeing onco on Friday and will ask him then but I'm wondering has anyone else taken a LONG - 3-4 month - holiday from this drug?

  • brooksidevt
    brooksidevt Member Posts: 1,432

    Bexter, I swear dealing with these estrogen things is like taking care of a puppy--always something new, and always have to keep your eye on it.   I took a delightful one-month arimidex holiday, then switched to exemestane, which is the generic of anasterole, I think.  Joint pain is often less with this AI.  My onc said if this isn't doable, then he can switch me to tamoxofen, or add a short course of steroids to address the pains, which I guess have something to do with inflammation, and actually had one or two additional suggestions.  I was griping so much he ordered a bone scan which (thank God!) showed no mets, but did show arthritis basically everywhere that does not  hurt.  I'm now in the middle of PT for bursitis (who'd have guessed it?) in both hips (no arthritis, just walking-on-knives pain).  In other words, please ask you onc to help you identify the basis of the pain--perhaps it's not just the arimidex--and also ask him to discuss alternatives, including maybe an eventual return to tamoxofen, if that was more tolerable.

    As for the brainfog/stupor, this very morning I decided I had had enough and retried ritalin.  You are probably aware that this drug calms down ADHD kids, but acts as an upper with adults.  My RO had prescribed this when I couldn't get beyond the rads fatigue, and, after a while, I decided I didn't need it.  Well, I've been less and less productive at work, and finally decided to dig out that bottle.  It's only one morning, but I think it's made a difference. 

    I am absolutely convinced that the bulk of our oncs' time is spent helping us navigate our way through all the side effects and anxiety, meds and treatments, information and misinformation, we have to deal with, and, come to think of it, most of us probably greatly underestimate their ability to help us with the everyday stuff. 

  • sweetrose8
    sweetrose8 Member Posts: 17

    I've noticed that my hair has started to fall and it seems like it's thinning. My doctor recommended to apply castor oil + olive oil , but it seems that Arimidex is more dominant in it's side-effect: hair loss. Are you also suffering from such a problem? Any tips on what to do (supplements/hair care products etc) or any natural remedies.. so it stops from falling? 

    Thanks.

  • janett2014
    janett2014 Member Posts: 2,950

    sweetrose8,

    Check out the topic Hair Loss and Arimidex (generic) in the forum Hormonal Therapy - Before, During, and After. 

  • Rocket
    Rocket Member Posts: 910

    Bexter, I can relate to your pain issues. I too have all the side effects and have been on A for 4.5 years. My onc wants me to keep taking it for a total of ten. I feel a sense of relief that I have a medication that I can take which is proven to reduce recurrence risk. That said, I hate the side effects. I have tried everything to alleviate them, but to no avail. I am once again suffering with tigger thumb in both hands. I actually had surgery on my left thumb to resolve it a few years ago, and it's back again! I will continue to stay on it as long as I can. I have developed osteopenia as a result along with high cholesterol. I do think it's a good idea to mention your concerns with your onc.  I hope you can find some relief. If you do, let me know what worked,

  • MaddieH
    MaddieH Member Posts: 3

    Joint pain and hair thinning and hot flashes as well as carpal tunnel syndrome are all well known side effects of arimidex/anastrozole.  I have been taking it for a little over a month.  I started out with the shoulder pain (I have already had both shoulders replaced) and carpal tunnel syndrome in my right hand.  I had carpal tunnel surgery the day before my biopsy.  Now my carpal tunnel is worse - although the chemo may have had something to do with that.  Now I am having pain in my ankle.  I also have carpal tunnel syndrome in my left hand which was only minimally impacted before the chemo.  It is my understanding that five years of an aromatase inhibitor in post menopausal women is the standard of care.  Yet I am reading posts from a number of women who have been taking it for much longer.  What's up with that?

    All that being said, I now believe that the state of breast cancer treatment is primitive at best.  I was treated with doxorubicin, cyclophosphamide, and paclitaxel.  The cyclophosphamide is older than I am (I am 71).  The other two are more than 50 years old each.  All have been in continuous use for more than 30 years.  The cyclophosphamide is derived from nerve gas.  Doxorubicin is a bacteria found in the soil in Italy (thus it's name, Adriamycin).  Paclitaxel is bark scrapings from the Pacific yew.  These bark scrapings are not soluble in water, so it comes in a suspension of polyethoxylated  (sp?) castor oil.  Every part of the castor plant is poisonous.  They have to give you steroids before infusions of this stuff so you will be able to tolerate the infusion itself. 

    After all this time, with all the money infusion into cancer research, is that all there is?  Really?  I don't know whether I am more dumbfounded or angry.

  • Sinsin
    Sinsin Member Posts: 200

    Hi ladies! Newbie here! I finished rads Sept. 26th and am to start taking Arimidex. (I am going have an Oophorectomy) I haven't started taking the pills yet as I am a bit reluctant to. I am already having joint issues (most likely due to menopause) and fear the AI will make it worse. I take a calcium supplement, the Viactiv chews. Any tips? Hope all of you are faring well! Keep up the fight and Fuck Cancer

  • nativemainer
    nativemainer Member Posts: 7,923

    Sinsin--Arimidex is doable. I had arthritis before I started it, and it didn't help, but keeping moving and taking non-drowsy claritin helped a huge amount. Also, it does have an and. And, unlike chemo and radiation, you KNOW it will be helping!



  • aug242007
    aug242007 Member Posts: 186

    Sinsin, Arimidex is not that bad.  I agree with NativeMainer.  Keep moving.  It really does decrease the chance of recurrence so don't give up.

  • bren58
    bren58 Member Posts: 688

    For those starting Arimidex, the following thread is very active with lots of info. If you haven't checked it out, you might get more answers to your questions there.

    https://community.breastcancer.org/forum/78/topic/790338?page=245#idx_7349

  • Holeinone
    Holeinone Member Posts: 1,418

    Sinsin, I wished none of us had to take more meds. I hate taking Arimidex. What side effects, exactly is from that, what is normal aging, side effects from all the stinkin chemo, it's hard to tell.

    My hair is thicker than ever. My biggest complaint is night sweats. If it keeps the cancer buggers from coming back, I will be a happy girl.

    Being as active as possible, ( I play competitive golf & tennis ) and always having something to look forward too, is my way of coping.

  • Blessedteacher37
    Blessedteacher37 Member Posts: 297

    I agree with you, Holeinone...for awhile I couldn't tell if the pain was from menopause or SE of medication. I started Arimedex in July of this year ( after 3 years of Tamoxifen)and the two things I have noticed most was insomnia and joint/ muscle pain in my upper leg and knees. I started taking Aleve first, but switched to a prescription strength of ibuprofen in the last week. It helps some, but as others have said, the mornings are rough. Feels like I ran a marathon the day before. Has anyone found anything else that helps with the leg pain? I know exercise is crucial, but anything else? I'm 60 and also have varicose veins.


  • doxie
    doxie Member Posts: 700

    Blessedteacher37,

    I had to stop taking NSAIDs due to nausea, so turned to the folk remedy - gin and golden raisins. (Cover golden raisins with gin. Let sit out lightly covered with a cloth until gin evaporates. Store in the refrigerator. Or skip the evaporation and use right away. Not sure it matters.) Eat 9 raisins per day.

    Surprisingly the muscle and join pain went away after about a month or so. They've not returned even though I've stopped the gin and golden raisins.

  • doxie
    doxie Member Posts: 700

    Another thought is to go gluten free for a while to see if that helps. I've cut way back on gluten, sometimes going a week or two w/o it. That may help also. Seems to work for me.

  • ruthbru
    ruthbru Member Posts: 47,697

    I can re-post the raisin/gin recipe again if anyone wants it. My DH started it about a month ago & has been running again for the first time in forever, so he is a convert.

  • Blessedteacher37
    Blessedteacher37 Member Posts: 297

    thanks for the suggestions, ladies...even though I am a non drinker and don't like raisins, I'm uncomfortable enough to try it. A good friend had to go gluten free, so I'll get support and ideas from her. Glad I've already had thanksgiving goodies! Will post the results later.

  • moonflwr912
    moonflwr912 Member Posts: 5,938

    ruthbru, please repost! Thanks.

  • cvmarilyn
    cvmarilyn Member Posts: 77

    Hi All - Just found you! I've been on Arimidex almost 2 years and was doing OK - shoulder pain - thought from Radiation - went away pretty much after some acupuncture. Almost immediately the pain found a new home in my knees!?!???? So I am now 57 but feel like 87 :(

    So - now what? I am not a big excerciser - but have to do something.... looking forward to hearing from you-

    Marilyn

  • patoo
    patoo Member Posts: 5,243

    Welcome Marilyn. You don't have to be a big exerciser, just try walking. If you're in a cold climate you can walk inside. I was on the phone with a friend (who likes to talk) and walked back and forth, kitchen, through dining room to Living Room for 90 minutes yesterday - yes, that counts as exercise. You can just step in place while watching the news or any TV program. Step side-to-side, or front to back, listening to music. Just be inventive and move at the most unusual times (you'll laugh at yourself - laughter counts as exercise as well).

    Good luck.

  • ruthbru
    ruthbru Member Posts: 47,697

    'Drunken Raisins'- a natural arthritis remedy.

    To prepare gin-soaked raisin, first empty one box of dried white raisin in a shallow container. Only white or golden raisin should be used for this recipe. Then pour enough gin into the container to cover the raisins.

    Cover the container ( but not with plastic, a kitchen towel is good) and keep it covered for 7 – 10 days on the  to allow the raisin to steep in the gin (sitting out, not in fridge).

    Allow all the gin to evaporate to leave gin-soaked raisins in the container. These raisins keep well when refrigerated. The popular advice is to take nine of these "drunken raisins" every day. Most users report improvements in arthritis symptoms between 1 – 8 weeks of using this remedy.

    Why it works:

    1.  Golden raisins- the ONLY type of raisins worthy of the  recipe- require sulfur or sulfides in their processing to make them golden. Sulfur is an active ingredient in 2 effective natural arthritis supplenents: glucosamine sulfate and chondroitin sulfate. Golden raisins come from sultana grapes and are cultivated under the name Thompson seedless grapes in the United States.

    2.  Sultana grapes contain proanthocyanidins which are  thought to help fight infections and reduce inflammation. Grapes also contain resveratrol, a powerful  anti-oxidant that is being studied for many of it's disease fighting properties.

    3.  Gin is flavored with juniper berries and juniper berries contain Terpinen. Terpinen has anti inflammatory properties. The essential oil that is in juniper berries contains more than 100 compounds including myrcene (an anti oxidant), catechins (anti-oxidant),  and flavanoids (anti oxidant). Test tube studies have shown that juniper berries can inhibit prostaglandin synthesis.  Prostaglandins help mediate an inflammatory response and increase the sensitivity of nerve endings to pain. By inhibiting their production, a reduction in pain can occur.

     


  • ruthbru
    ruthbru Member Posts: 47,697

    Marilyn, if you want some exercise buddies, check out the Lets Post Our Daily Exercise thread on the fitness forum, a great group of ladies in all stages of treatment and beyond, and at all levels of exercise too (including patoo and myself).