Stopping Arimidex

jemikni03

I'm back again.  I have been having se's from the arimidex that had me wondering if the misery was worth the possibility of preventing a recurrence.  I had an appointment with my onc and once she saw me hobble in, and then climb up to the examing table we had a discussion.  Her comment was that since my cancer was so small, and I had a bilateral mastectomy my chances of a recurrence were very minimal.  We came to a decision to stop the arimidex to regain the quality of life I had.  My question is, when do you start seeing an improvement in the se's?  The joint pain, hot flashes, night sweats, are still with me, but the joint pain is as bad if not worse that is was while I was on the arimidex.  I've been off it almost 2 weeks now, and I was hoping to start seeing a light at the end of the tunnel.   

sorry this is so long, but I'm on the verge of a depression here.

Karen

JoanofArdmore

Hi Karen,

I've had 2 long (3 week) vacations from Femara, because it's so awful to me.

I have every bad SE in the book.My last one is dizziness.I fell last winter, just crossing a street.

That was when my onc gave me the second vacation.To make sure the dizziness is from Femara.(It is.)

I can tell you that the SEs leave in reverse order that they came.

So the dizziness left first for me.

My first  SE was joint pain/bad arthritis.

THAT still hadnt left by 3 weeks.

But it WAS better.

The intermediate stuff like poor sleep, fatigue,memory loss--THEY were very much improved by 3 weeks.

I was bright and peppy.(Imagine)!

So that's my story.

Dont worry, they WILL go.Rome wasnt built in a day.....

Joan

njbeach50

My Onc left the practice, the new onc assigned to my case immediatley told me to stop taking Arimidex as I have been on it for five years. I have been on so long I am anxious about going off

stitcher

My oncologist was using a protocol of two years tamoxifen followed by three years of arimedex for me; am nearing the end of the first two years, so she gave me a month's quantity of samples to see how I tolerated the arimedex.  Had real qualms about going to that since I have already had three hip replacements (did one of them twice!) and back surgery all related to osteo-arthritis.  Surprisingly, the joint pain wasn't as bad as I expected, but the insomnia was brutal in just that short time.  She has agreed to stay with the tamoxifen for three more years, and I am delighted.  Sleeping better already after just a week back on tamoxifen!

Liz

beck10

Stitcher - you sound like me except I don't even want to go to Aromasin - I am just curious what your original diagnosis was.  I really, really want to stay on tamox.

davisfamily70

Beck,

I agree. This aromasin has so many side effects, I can barely function.  I would like to go back to tamoxofin. 

Blundin2005

Hi,



I did too. One month ... it was glorious! But I couldn't stay away. I wanted that "protection". Went back to it and was miserable. Sorted it out with other contributing factors. Stopped to take it for two days ... went back to it...I wanted that "protection". But the pain .... damn the pain ... then I added magnesium to my calcium, D3, multi vitamin and glucosamine/MSM. This did what I needed to continue .... I am still taking Arimidex with this help.....because the "gang" wanted me to try.



I know this is difficult. Search every option .... ask every question .... knock on every door....life is worth it.



I take a NSAID three times per week (if needed). The "Arimidex shuffle" has become part of my life (58 y.o.). God, I sound like I'm preaching and I don't want to do that .... only inform. There are no wrong decisions .... only your decision.



Best wishes to your journey.

jemikni03

I'm back and feeling almost like my old self.  My knees are still a little stiff/sore, but the difference getting the Arimidex out of my system is amazing.  I didnt' realize how bad I was really feeling.  Now I can go on to getting my life back on track.  Hugs to everyone still in midst of their battle.  I know I'm still early in my battle, but I have decided to live positively and at full speed.  

Karen

bebe

Thank you for that, very informative. I am so curious if these SE's will really go away once I stop the Arimidex or if this is all just me getting older! (60) When I ask my onc, he is very vague, never gives me a straight answer.

Feet & joint pain the worse, but also dryness issues & lack of energy.... I have another 10 mo. to go until I'm at 5 years & was thinking of asking onc if I could stop 6 mo. early. ...what about the abdominable weight? Any improvement on that front? (no pun intended!)

jemikni03

No suggestions for the weight, still dragging that around with me.  I'm hoping that now that I'm feeling better and am more active I can lose some of it at least. 

MusicTeacher

Hi Ladies and thanks for this thread. 

I'm 3 years on Actonel for supposed 'Osteopenia' ... and now the surgeon says 'Arimidex' after radiation.  I don't want to take this or any more drugs.  AND, Arimidex later spells no hormones for my bones.  My lobular carcinoma was only 2 mm.  About this big:  .     Yep.  That's it.  DOES ANYONE KNOW OF HERBS OR HOMEOPATHY THAT WOULD HELP TO LOWER ESTROGEN?  Do we really need to lower the hormones after breast cancer if we've since built up our body's natural disease-fighting systems? 

I think the American way of medicine is nuts.  The pharmaceutical companies must think we're just all sheep to slaughter.

Thanks for your help, Ladies.  I SO appreciate this list!

ktcloud

Chrysin is an aromatase inhibitor.  Body builders take it to stop testosterone from converting to estrogen. When post menopausal women stop producing estrogen,  the body makes its own out of testosterone.

Erica3681

Karen,

Glad the side effects are ebbing away. I was in a very similar situation to yours--very small invasive cancer, bilateral mastectomies. I'd actually been on tamoxifen for three years, having had lumpectomy and radiation initially for the cancer. When DCIS showed up in my other breast three years later, then I opted for bilaterals. After the bilaterals, my onc took me off the tamoxifen and put me on Femara. I was on it for five months and the side effects were gradually worsening. When my bs learned I was on Femara she went ballistic and said--get off that stuff!! She felt the risks of osteoporosis for me far outweighed any possible benefit (I'm thin and have osteopenia already). My onc agreed it was reasonable for me to quit. The worst side effects (finger and elbow joint pain) began to ebb quickly, but honestly Joan is right, for me at least--it took fully five months (as long as I'd been on the Femara) after stopping for me to feel totally like my old self.

Hope it's much quicker for you!

Barbara 

tabbycattx

I stopped Arimidex also. I was on it for 2 months and the side effects didn't go away--they just got worse-worse than chemo IMO. Shooting pains up my spine for starters. (and I teach yoga) Plus a blood test taken by another Dr. showed very high liver counts, higher dangerous choloesterol, and it made my chemo induced high blood pressure worse. I did not have high liver counts prior to the arimidex. Everyone has to decide for themselves, but I don't want to induce heart and liver damage just to slightly lower my chances of the bc returning.(I was node negative) That's crazy in my book. I go to the top cancer institution in the nation and they are totally about curing cancer (which is good) but they don't really care about quality of life or the heart and liver problems you can have in the future.  I would be interested if anyone on these boards had the bad side effects with Arimidex and switched to another type of hormone treatment with success. My tumor was ER+ and would like to treat it going forward but not at any cost. My oncologist would like to go to another AI but from what I've heard they are all about the same side effect wise. Anyone out there with experience switching?

mccloskey

I am currently on arimidex, I did 21/2 years on tamoxifen and then had my ovaries removed to go on arimidex, my 5 years are nearly up and I am nervous about having to stop treatment, is there anything out there on continuing on arimidex, I've tolerated it pretty well and am high risk for recurrence.

Carmel

TenderIsOurMight

Hi Carmel,



I'm in the same boat as you come end of March, although I did only one year of Tamoxifen prior to Arimdex.



I'm definitely am hoping to stay on an AI, maybe Arimidex although wonder about Letrozole.



Have you talked with your oncologist about this, and has he or she suggested any particular one?



I see you are new to our site, so a warm welcome to you. It's a friendly forum, lots of good practical information and much support. You'll see lots of posts on Arimidex (an AI or aromatase inhibitor), and feel free to post your own questions.



Nice to hear your question. I wish you well.

Tender

DianeMarcus

My doctor wants me to stop taking Armidex for 2 weeks. I'm a little nervous about this since, I was told how important it was never to miss a dose. Anyone have any ideas on this?

Diane 

Calif-Sherry

Diane, interesting you should post about the 2 week repreive.  Well... I was just at our BC support group meeting and we had one of the top onco from the university there and I talked to him about the side effects.   He suggested that I talk to my doctor about a 2 week break to see if the symptoms improve.  Please make sure that you post after your two weeks.  I'm curious how it goes....

BTW, I have heard of folks being given permission to take breaks. 

Calif-Sherry

Diane, interesting you should post about the 2 week repreive.  Well... I was just at our BC support group meeting and we had one of the top onco from the university there and I talked to him about the side effects.   He suggested that I talk to my doctor about a 2 week break to see if the symptoms improve.  Please make sure that you post after your two weeks.  I'm curious how it goes....

BTW, I have heard of folks being given permission to take breaks. 

Sunshinesprite

Hello everyone.

Well, my onc just took me off of Arimidex last Tuesday for six weeks before trying something else. I am having a lot of what you all are having with the severe joint pain, hot flashes (too many to count), liver disease, etc but, my absolute worst and becoming almost debilitating is my hands. I had Carpal Tunnel anyway prior to bc basically in flares for the past 12 years but, I could work around it. Then, after Chemo, ended up with CIPN (Chemo Induced Peripherhal Neuropathy) in both hands and feet. I also had lung cancer and radiation. The bc had spread to the lymph nodes and I had a modified radical mastectomy right side, a lobectomy right side. They were going to take the left breast too due to high cancer risk (both children also had childhood cancers which shared a familiar relationship, Leukemia and Rhabdo), but, due to the second cancer, decided to wait and get me thru these two cancers first. The lung cancer is a second primary cancer, not a metastasis of the bc. So, chemo, mastectomy, lobectomy and radiation. Then, started me on tamoxifen which I ended up not being able to do. Took me off of that after three months. I had my ovaries removed and then they started me on Arimidex. Three months later and I am having all the issues I am having now. She decided to give me a six week break. I am having a nerve conduction study done on hands and possible Carpal Tunnel Surgery. The left mastectomy is to take place this fall. She said there are two more AI's she can try with me. hmmmmm.... I am not someone who likes to take any meds and I seem to get every side effect. I have been told by my Primary to limit the otc meds for pain due to my liver. I am already on Lyrica for the Neuropathy but, can only take so much or I get very dizzy. I am just a year out from treatment and somewhat nervous with no safety net. However, at this point, quality of life is important, too. Very bummed currently.

Dawn

farmerlucy

Hi Dawn - Wow - you have been through it. Sorry. Your experience on Arimidex was similar to mine. I recently went back to Tamoxifen and in just a few weeks nearly all the hand and joint issues have cleared up. My onc may want me to try the last AI I haven't tried but we'll see. I think Femara was easier for me, but I still had the joint issues. I now use a hand splint for sleeping. It helps a lot. I hope you get some relief soon.