Do Not Want to Take Aromatase Inhibitors

I agree. I would like to know if there is a difference.

I was dx with stage 1A invasive ductal no lymph nodes, ER & PR positve, lateral mastectomy, Oncotype Dx test 18 put me in the low risk category May 2019 at the age 64.                                   

I've been on Anastrozole genaric Arimidex off and on for the better part of a year, almost immediately the hot flashes started after a couple of months the intensity and frequency increased to about 10-18 times a day and were debilitating because I'd have them at night too, if that wasn’t bad enough I was also having problems with shortness of breath, joint pain in my hips hands and elbows and sharp stabbing pain in my thighs and I gained 20 pounds all in the belly, Oh joy just what I needed. Then I started having frequent UTI's and my teeth hurt badly with no dental reason for the pain. My quality of life was terrible, I felt so bad all the time it was hard to even go about my daily house chores. 

I had a mastectomy for Stage 2 invasive ductal carcinoma w/3 lymph nodes cancerous and fourteen removed. I developed lymphedema. After chemo and radiation I went on Letrizole. Within a few weeks I was an emotional mess, crying non-stop. When I started hallucinating seeing thin white threads, which weren't there, they took me off Letrozole. I had never before had a hallucination!  During the period off the drug, I went back to feeling fine. They put me on Exemestane. Within a few weeks, I was out of my mind. I couldn't stop crying,  had no filter and had very dark thoughts.  They took me off and suggested Tamoxifen.  Again, during the break off Exemestane, I was fine.  Within a few weeks on Tamoxifen, I was depressed again.  I can't exactly say I was having mood swings, except going from low to lower. I had some bone pain but that wore off quickly. Other than depression, I had no side effects, not so much as a hot flash.   The oncologist suggested I go off Tamoxifen for a few weeks and then restart it, taking 5mg instead of 20 mg.  I did fine on 5mg. with no side effects at all.  He told me to "inch up" at 5 mg increments, saying  "only you know when to increase the dose."   In a few weeks I began taking 10 mg.  Again, I had no side effects.  I thought my body must be adjusting to the stuff.  In a few weeks I increased it to 15mg. and within days I was crying non-stop again.  In June, the oncologist told me to go back down to 10 mg and stay there for the summer. I've been fine since June but am dreading my August appointment with the oncologist.  My radiation oncologist and PCP have told me to just stay on 10mg of Tamoxifen and "shave off" my chances of recurrence that way. It sounds great, but does it help?   My understanding is there was a small study in Italy of the lowest effective dose of Tamoxifen and they found that 5mg was as effective as 20mg but it was for women with DCIS in situ, not ductal invasive carcinoma.  I am really scared that taking half the normal dose is doing me no good.  Have any of you taken a lower dose of Tamoxifen than usually prescribed and done all right?  

Stage1b left breast and one node. Chemo, all the chemo, lumpectomy and one node removal, radiation, and then a full hysterectomy. I was double negative with a positive estrogen feed. Not sure of terms. It’s been over 2 years since journey began. I am NED, just had first mamm after and a full scan that was NED also. My problem is the Al’s are making me a diff person, I hurt, I’m in pain all over …mostly legs and feet and arms. My lumps breast that’s left feels like it’s in permanent mamm. I cry all day and night, don’t sleep without meds ,and that doesn’t help a lot. I can’t walk up stairs , my husband pretty much Carrie’s me in from work everyday. I work because we have bills and a house psyment.I don’t think staying home would help,I would just b depressed more.I be tried T, exemestane, .and now letrozole.if there’s a side effect I have it.I never got side effects until after cancer from any meds at all,now seems like from everything.I am 50 years old, have children, my family, a granddaughter otw. If I don’t take these Al’s will it come back ..will I die before my son graduates, or is it better to live life and not take them. I’m not dead,but I’m still not living,and having a hard time making decision to let the Al’s go …what if what if??

Hello,

My situation sounds pretty much like yours; lumpectomy, Stage 1, radiation no chemo, no lymph node involvement. I have been taking Arimidex for 2 1/2 years and cannot live with the side effects much longer. Every day is a challenge due to excruciating joint and muscle pain as well as many other issues. At the 3 year mark, if my imaging is clear, I will discontinue Arimidex. My problem is lack of data for all the women like myself that just can't make it to the prescribed 5 years. Anyone out there have access to this information? And for what it's worth, I initially took Anastrozole and did feel much better temporarily when switching to the brand Arimidex; unfortunately that did not last.