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

Jerseygirl927

not happy with the possibility of lymphodema, had a baseline done for lymphadema and I know it can happen anytime, so keeping an eye open for more swelling in fingers. As for fluid drain after mastectomy, will keep up with it , if I have to... And will mention it to my MO.

azalea23

Reading this is helping me.  I am on my second breast cancer journey in 19 years and the first time was estrogen receptor negative.  I was positive this time and am taking anastrozole.  On it for 2 years and am always thinking something is wrong because my side effects seem to get worse.  Somedays they are really bad and it hurts to stand up and walk and then I loosen up and am OK.  Today my back is killing me and I am all over the place emotionally.  It is so exhausting.  It doesn't help that I was 17 years older at my second diagnosis.  I admire all of you out there and love the support.  I need to check in more.  Thanks for being there.

PontiacPeggy

Azalea23, So sorry that you are on your 2nd BC journey. That's no fun. Please update your profile with all your Dxs, treatments, etc and make them public. That helps us help you!

Could you possibly be arthritic? Or just creaky? I am often stiff when I get up in the morning but I've been that way for many years before I started anastrozole (and I have had no SEs from it after 9 months). Some women have had all the aches and pains helped with Cymbalta, you might check with your MO to see if it could be appropriate for you.

HUGS!!!!

meljo614

Jerseygirl, when I first started on Arimidex (anastrozole), I noticed finger swelling (at the joints) and tightness/stiffness.  Now it comes and goes.  Somedays I can't get rings on my right hand which is annoying.  You may notice the same sensation in your feet.  I am only four months into the medication.  Hoping this is the worst of the SE's for me and you too!

Redheaded1

I am a year in as of June 9th, and am having some arthritis type pains and feel the same way, some days it hurts to even think of trying to stand up, the kn ees and feet feel like they will give out, then after I am up, sometimes it is better and then I may go several days before it happen s again.   See the Mo middle of the month, but I hope I can stay on this one, since the Femara, for me was unacceptable.

Jerseygirl927

Meljo, I agree hope the SE stay minimal for us both, I went into the ocean today and thought I noticed the numbness in my feet were different! Also the hot and cold that is in my feet , is a bit better, but balance was not so good, that or I was just a little more tired. Keeping my fingers crossed and praying.

azalea23

Thank you for your reply.  I could definitely be arthritic but this seems to exacerbate everything and then I worry all the time.  Some days I feel fine, other days I feel like I am 90.  Just trying to stay positive.  My second breast cancer was very early caught and with my treatment I was given great odds but it still weighs heavily on my mind.  My first was the really scary one.  Sending positive thoughts to everyone who endures this!!!

florida2015

No side effects at all. After three weeks

PontiacPeggy

That's good, Florida!

PeggyG6020

Mary59G, Unfortunately, I also have Crohns' disease, so no NSAIDS. I can only take tylenol, which I am not willing to take everyday. I hope the Omegas help.

doxie

I have a wild card to throw at those of you with arthalgia and arthritis like symptoms.

I recently removed a deer tick and had to have a strong dose of antibiotics to ward off lyme disease - had a growing rash indicative of the bacterial infection. I did a bit of research and discovered surprisingly that more people will be infected with lyme disease in a given year than get breast cancer.

So why am I telling you this? Because the SEs of untreated or late treated lyme disease are very similar to many of the arthalgia and arthritic symptoms we have on AIs. If you are a hiker or have a dog who runs through natural growth, there is a possibility that untreated lyme disease is causing some of your problems. I went hiking in an area obviously infested with ticks, but because of where they attached on my belly, I think I got the ticks from the dog that sat on my lap on the way home. A friend with me found another on her back. She was carrying her dog.

Deer ticks are so tiny that unless they are in plan view accentuated by a rash, they are easily missed and drop off after feeding. An infected tick can infect you after only 24 hrs.

So hikers, dog owners and other outdoor pet owners, consider getting tested for lyme disease if you are in infested areas and have some of the SEs we are in most cases rightly blaming on AIs.

ruthbru

Very good point, Doxie. And I will add that if you have any strange/unusual symptoms of any type, be sure to get them checked out. Don't automatically assume that they are caused by your anti-hormonal.

proudtospin

doxie, years ago I showed up in my PCD office and said I felt lousy and she tested me for Lymes, she knew I road bike (short pants) in an area known for deer ticks, actually there had been a lyme vaccine years ago that she had given me so she was always checking me,  I tested positive, never saw a tick.  I think it was not from my cycling but from a visit to NH to a pal.  I remember asking her if there were deer ticks in NH and she casually said yes.  She was wearing heavy socks and I had sandles on.

Doesn't matter now but my doc gave me antibiotics and I have never tested positive since but yeah, got nast aches and such that could be lyme

lago

New England has a bad problem with deer ticks for years. Even on Cape Cod.

proudtospin

so does NJ where I live, it is all over the north east.  One of my pals in PA found a tick on her, her husband took it to a vet to see if it was the deer tick as he figured the reg doc might not know.  Vet said, yeap, that is a deer tick and best you bring your pet in.  My pal with his slightly off humor said, not my dog but my wife!  Jackie had the shots and far as I know fine.  But hey she has arthritis and all the usually aging stuff so who knows~~

BookLady1

Happy 4th of July! 🇺🇸🎆🎉 y'all have been such a help to me since I started on Arimidex 5/1/15. Side effects of alarming joint pain and neuropathy in hands and feet, but they may have been left over from chemo. I am taking Gabapentin 300mg (Neurontin) prescribed by MO and joint pain has lessened to tolerable, and I'm seeing an Oncology Massage Therapist which has helped some with neuropathy.

Best treatment so far has been LIVESTRONG class at local YMCA. Free 12week course for Cancer survivors with personal trainer for all Cancer survivors to get back our quality of life through exercise that works for you. i am not a gym rat, and this has been great for me. Good to have another resource! Linda

Chloesmom

Booklady I went to Livestrong during chemo. Wonderful program! It was before the bad SEs kicked in asnow have post chemo neuropathy and AI joint pain too. Got to get back on the program. It was easier with the cheerleaders at the Y,

BookLady1

Chloesmom - I can't believe you did LIVESTRONG during chemo! You are right, they are cheerleaders, which I need. But that could turn annoying ... all that positivity! My joint pain is better, neuropathy isn't, but hope this helps. Linda

mysunshine48

Choloesmom, I signed up for Livestromg after my first chemo. At the end of the three weeks, I met with the instructor at the Y and it sounded good. Well, after my second chemo, I was not sble to make 2 classes because of side effects. I know exercise is importsnt, but just could not get ready and go. I called her and said maybe I would do this in the fall because I did not want to miss 2 sessions every treatment. Glad Indid because this third trestment has been much more difficult to recover from. Now, one more to go. I hope to do the classes in the fall, somehow around another surgery. I think YOU are amazing being able to do this throughout chemo!

Chloesmom

it misses quite a few classes, but the connection with the others was great and it kept me moving so while I lost strength and mobility it wasn't as bad as it could be. I didn't have them reasses me at the end as i was having foot pain and muscle pain that made me have trouble walking. Told instructor I'd be back for re-eval in a few months. That's my goal to get back to my prechemo status

Chloesmom

VSaw MO today. She was very upset with how bad my hands have become. Switching to another AI.Hope it is better!

Darumama

Hi everybody! I took my first arimidex today. Doctor said he'd ilke me to take it for 10 years. Anyone else have to do ovarian suppression in order to take arimidex?

Bunmi

Is Arimidex good for a menopausal patient with HERs Posit

Mommato3

I'm doing OS (Zoladex) with my Arimidex. My ooph is scheduled for Sept 25th. I decided that I don't want to get a shot every 28 days for the next five years. My MO said that she is only recommending five years for me right now. That could change depending on any new studies coming out

Mommato3

Bunmi, Arimidex is for women that are ER+. Women that are Her2+ get Herceptin to deal with that aspect of their BC. Are you triple positive?

marianelizabeth

My 2.5 week holiday from Anastrozole has come to and end and nothing has changed. My MO was hoping that would be the case and to be honest I don't think it would be long enough to really see. But I know that I need to be on it and so will start tonight. Meanwhile, when I saw my MO and described how I feel mentally, (did want to know if the AI has any bearing) she referred me to a psychiatrist I saw a few times a couple of years ago at our cancer agency. It must have been karmic because I saw her today along with a senior psychiatry resident who is researching and using Mindfulness Based Cognitive Therapy. I did MBSR~~Mindfulness Based Stress Reduction in a group at BCCA two years ago and it was really good but now I get to do one on one for 6 weeks with this resident. Can't hurt and I am looking forward to it. I am also going to give Effexor a try.

whenlifegivesyoulemons

Bones, bones, beautiful thinning bones. One year in and my bone scan shows some (I think) concerning changes. Anyone dealt with bone thinning while on arimidex? Were you able to stop the progression? Did you and your doc discuss at what point you'd consider switching to another drug?

I'm upping my calcium, reviewing my diet, continuining strength training, but worried those changes may not counteract the side effects of arimidex. Anyone with experience dealing with this?

auroaya200882

When life... Has your doctor considered giving you one of the biosphotanes (sp) such as Zometa or Xgeva? They're bone strengtheners that in certain studies also seem to help keep cancer at bay. I've taken Zometa for 3 years with no side effects and for two of those three the bones showed healing ( I'm stage IV though so I have now progressed) I would talk to my doctor about bios

lago

whenlifegivesyoulemons After 3 years on Anastrozole I was diagnosed with osteoporosis. 1st year big drop then somewhat stable then finally the big O. Tried Fosamax but it gave me reflux . Now doing Reclast 2X a year. Will find out in October if it's working.

azalea23

I am new here and am looking back at a lot of posts about anastrozole. Has anyone out there been bothered by waking up at night and feeling like their lips are really dry and almost crusty? I know this is gross but I have been on this med for 2 years and just wondering. I feel like I have a new SE every week! Hugs to all of you out there!