For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Red, same here. I was terrified of chemo and rads too. My oncotype was 11 so no chemo and Opted for BMX so no rads. Not an easy road either. I'm 3 surgeries down with one more to go for exchange. My left breast looks like a chain saw was taken to it with all the scars. They are stretching with the expanders so look worse now. If anyone ever said I got off easy to my face it would take a lot of self control to not say something rude. I try to educate if the listener wants to be educated. We each fight our own physical and mental battles. No one is better off than the other. We are all in the same fight.
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Red, I also feel that I "got off easy" with an lx and rads. Had no problems with either and none so far with Anastrozole. I didn't have an overwhelming fear of chemo - I'd have done it if need be, but it wasn't.
Ducky, good luck with your mammo today. My mammo in April was the first at my cancer center and it was the most gentle mammo I've ever had. Many times I've felt like they were scraping the skin off my chest but not this one. It did NOT HURT! Of course, I get to have a bilateral MRI tomorrow morning. My Bi-Rads was 1 but guess the BS wants to make sure all's well. I'm not concerned but I had laying on my tummy for what seems like forever.
HUGS to everyone!!!
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Audrey...........I found most of the people had very short conversations, and then ran like hell...........
A lot of women on here I"m from 2011, so I know a lot of ladies............lost friends, relatives who because of the fear and stigma put on BC they looked at them and thought "That could be me"...............
I had a woman say to me at one point...........Do you or did you ever say"why me"..........I didn't answer her, and she said it again......................the second time I could not pretend I didn't hear her............I looked her straight in the eye and said "Why Not Me".................she never spoke to me again......wonder why.......lol..
If in my life I wanted to think or even say that, I would say it to myself..certainly not someone else........to me that is almost like saying "yea how cme it wasn't you"..
And like some of you.....I did fear the Chemo more then the cancer..............yet when I got on here some of the ladies told me that the AI's were worse then the Chemo..............this is what they said...........
At least with the chemo you knew it would soon be over, but when your hurting and aching all over your body and you think "good Lord I have to do this for at least 5 years..that was brutal"...........
Now if your one of the lucky ones and you didn't get SE's chemo might have been harder on you......I was not afraid of Rads at all..........I watched my husband do both for Pancreatic cancer, and trust me........the chemo took his life......the rads did not bother him one bit........nor did they bother me, and I had 38 treatments.......
My oncotype score was 8......the Onc said I didn't have to do Rads if I didn't want to.....my BC surgeon said "we had a deal"...........I had good margins all but one small spot which was still good, but in his opinion not great....he said I got 2 cm all the way around, but that one area I got only got 1 1/2......he said 1 is acceptable, but not for me, and the RO agreed with him.........so I said "fine I can do this with no problem".....and I did..........
Today I feel like someone ran over me...........I said if someone could replace me from the waist down I would be great.............LOL.......Thanks AI's................
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Red I was more afraid of AIs and radiation than chemo or BMX. Got a pass on the rads and started my 5th year on the AIs.
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Has this happened to anyone else?
I have been on Anastrozole since September. Not feeling good on it at all, but my MO said I had to take something. Started getting chest pains, and I stopped taking it at the end of April. (This was while seeing a liver specialist to see why my liver enzymes were up. I was sure it was the Anastrozole. The liver specialist wanted to do a liver biopsy; I wanted to go off the Anastrozole.) They didn't want to put me under with chest pains, so off to my PCP I went for heart testing. The cardiologist ran a bunch of tests and told me I have mild thickening of the left ventricle of my heart (Left ventricular hypertrophy). I have been overweight for a long time, but no history of heart problems or high blood pressure. The last time I had chest pains it turned out to be my gallbladder. I am convinced the Anastrozole did this to me, since my blood pressure was elevated on it. Heart problems are supposed to be a very rare SE on this drug but I still wonder.
Shirley
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Well. I just have to say that once it all sank in, like after a year or so, I was able to be grateful that I had/have "only" ER+ HER- grade 1 breast cancer. There are so many cancers, including some breast cancers, that carry a far worse prognosis. I've been a cancerphobe my whole life, always worried about developing some of the deadlier cancers. Never, never did I suspect that breast cancer was in my future. I know there's no guarantee that one, even two, of the nastier varieties may turn up in my body, and, yes, mets are always a possibility, but, for now, I do think I'm lucky. Relatively speaking, of course.
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Hi Shirley, I also have had some side effects from the Anastrolzole. Mine are mostly joint and muscle pain, accentuating my prior arthritis. It also happens to my back which gives me some chest pains.Your back pain and the anastrolzole may or may not be related to the thickening. Hopefully your doctors can help sort out if the two are related. I would hate to give up something of potential benefit if it wasn't really related. I am still evaluating with my doctor some of my side effects and whether they can be attributed to my meds, prior minor conditions or due to other effects from my cancer. I hope you can find the answers soon. I am halfway through my three month try of tracking my conditions, looking at other potential causes and seeing what my body adjusts to. I do find I feel like I am mentally losing my edge. That is what alarms me the most. It can be a potential side effect from the meds, but can also be PTSD, fatique, insomnia, or mild depression from this whole experience. I can deal with hot flashes and night sweats, but the rest concern me. I'm meeting with my doctor next week to discuss all of this.
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Jo, I suspect that some of my mental sharpness decline is from mild depression. Don't seem to be bothered with anything else.
HUGS!
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Thanks Peggy. I think the same so am really trying to figure side effects. Its sort of like the chicken and the egg dilemma. All of these changes happen so fast.
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Jo, I totally agree. Gee, was this going on pre-AI and I've just forgotten because it was intermittent or is it new or maybe I'm just a bit crazy today? Or all of the above?
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Slappy, yes, I believe it could be your anastrazole. I went on it June 9 2014 and took it until Feb 10 of this year. I had elevated liver function test, elevated cholesterol and high b.p. off and on. I was off the anastrazole for a month, (Felt so fabulous) then the doctor gave me Letrozole. I took 4 Letrozole and felt like I was dying ( I had no noticeable se from anastrazole except when testing blood or b.p and insomnia). Doctor did a cholesterol test, liver test, after going off and it was all really good. I am now back on the anastrazole as of April 12th. I now hurt and have occasional chest and back pain, knee pain and foot pain and my fingers are showing signs of arthritis Of course, I fell on black ice in Feb, and had a major wrist fracture requiring surgery, so they are suggesting that I might be developing arthritis as a result of the fracture. See my MO again in July, unless things continue to decline. Not sure what I could do except try Tamoxifin.0 -
Aromatase Inhibitors May Raise Heart Risks
I'm sure you'll find other literature on this. Estrogen is protective of the heart so it makes sense and is listed as one of the risks but not sure it would happen so fast.
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I ended my 5 yrs of the AL and since then, my BP has dropped and I no longer get the concerned look from my doc. now the cholesterol so far well no drop there but hoping for the next set of fasting blood work up to give better news, course I did add cheese back to my diet so.....
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Thanks Redhead for sharing your experience. I don't think I want to go back on the Anastrozole, and I'm not too sure I want to try another AI at the moment.
Shirley
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Thanks Lago! I may print this out for my next MO visit.
Shirley
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Thanks for your reply proudtospin!
Shirley
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Slappy another thing to consider is if your tumor was left breast or right. Mine was on the left, and I didn't breath in such a fashion as they could do respiratory gating when I got my rads. A tiny bit of the heart could have been damaged during my treatments, we just have to wait and see.
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Shirley, love your screen name! got a ton of scrappy squirrels in my front yard!
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Yikes did I get WAY behind! Thank you all for your posts with your candid honesty. It's so nice to get validation! Too many posts to answer, just know that I know how you all feel! (((HUGS))) to all of us!
Martha
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Great news from here! Two weeks to the day after switching from the Accord generic to Teva, the pain in my feet started getting better and by three weeks, I'm pretty much back to normal. Went to an intensive physical therapy retreat last week with my sister and my husband (both have Parkinson's Disease) and did lots of walking with them (117,000 steps on my Fitbit for the week, above 20,000 steps on two days!) with no problems. Walgreen's had the Teva brand for me, just took in the prescription from my MO requesting the Teva brand. Heading out for my morning walk now.
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Golden, That's great news! How long have you been taking anastrozole? I'm asking because my foot and hand pain have just started about 6 weeks post starting anastrozole and 2 weeks post changing to Teva. I'm trying to figure out if it is the progression of depleting my estrogen (and SE will settle out) or the change in meds. I am planning on discussing my MO on Monday whether to continue or not. If my pain will go away as part of the progression I will keep taking it. I was borderline on whether or not to take, but am finding the continual aching severely impacting my life and outlook.
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Gypsy....hang in there......I found Anastrozole brutal compared to Letrozole....but you may be different......I took letrozole for 3 1/2 years....then stopped......80% of my SE's went away which was why I stopped...............but I repeat.....I was scared so tried anastrozole because I wanted to give myself every chance possible...........took anastrozole .....in 3 days I thought a truck ran over me........stayed on it for 3 weeks......could not do it...........off for 6 weeks now..........the SE's have not gone away................so sorry I just didn't stay offf both of them.......
This is interesting for anyone who wants to hear it..............I went for a mammogram the other day ...........a woman who was my tech knew I was a BC patient because my script said "diagnostic mammorgram"................different then "routine"......she asked me how long I was without recurrence.........I told her 4 years , 4 months.........she continued to tell me her mother had BC at 80 years old........she said she suffered with SE's of the AI's as so many of us have......................she could see I was having problems getting out of the chair, walking, but then again it was a horrible dreary rainy day, so that is not unusual for me, plus still having remnents of anastrozole in my system..............
I told her I had stopped it because of the pain.............she asked how long I had been taking it.......I told her I took it for 3 1/2 years, then stopped......I then said "I'm not gonna tell you I am not concerned about the 5 year mark"......
She said "my Mom was in pain, just like you.........her Onc wanted her to stop since nothing helped with the SE............he finally said to her...........the truth be told...........thee AI's do their best work in the 1st .2 years.........if you can do this for 2 years it will be to your benefit..................after that, they are still not sure if the other 3 makes any difference................
Is it fact.......I don't know, but the MO who told her that was from one of the best Cancer Centers in the world............just saying............
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Oh and a footnote..............her mother is still alive, no recurrence, and she is 87..........of course she is a lot older then some of you........as am I.............but she still went past her 5 year mark............
Still always give it a try...............we are all different.........I would never discourage anyone from taking any of the Al's...........I just found Arimidex harder..........not to take........but harder to get SE relief when you decide, and if you decide to discontinue.
One of the women on here said "even after going off of anastrozole I still have SE's and it is several years............I thought..............Really"......................found it hard to believe since I had such a great result after 3 days of stopping letrozole...................so there is a difference in the result even if you stop it......no matter which med your taking..
Just hoping this is taking longer because of the med, and not that it is in my system to stay..........I know, I know,,,,,,,,,,,,,,you stop its out of your system in 3 days...........YEP, unlss its Anastrozole
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Ducky, I posted on another thread, I found some cream for my feet pain at Whole foods. Dang but it feels good!
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Good for you...........funny thing is......if you tell some of the Doc's you have foot neuropathy they deny it is a SE..............mine didn't, but many do...........
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I started on anastrozole in August of last year and had no problems for about the first six months. In December, my pharmacy switched to the Accord generic (got half Teva and half Accord that month). My joint pain started in January and got steadily worse.. When I saw my MO a month or so ago, he indicated he didn't feel the manufacturer made much of difference in side effects but indicated you were usually up to the "full effect" within two weeks and the timing from when I switched made some sense. He wrote the prescription to "prefer" the Teva generic and I made the switch in mid-May. Just walked two miles! I was also having pain in my hands but that is gone too. I'm delighted. I'd gained about 10 pounds over the past six months and am back to getting rid of that! I don't think I realized how much the joint pain was limiting my walking and just over-all energy. Chronic pain is draining.
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Hello all-
I have been taking Anastrozole since 9/8/14. I have the usual side effects of insomnia, fatigue, joint pain.....but I have begun getting tiny, sensitive little bumps on the palms of my hands. Usually only one bump at a time and it has the appearance of a tiny blister and feels like having a splinter in your hand. Has anyone else had this? I don't know if it's from the Anastrozole, or if something else is causing it.
I hadn't seen any reference to it, and there are way too many pages to read through.
Take care!
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Purple......started taking it in 2011, and I am pretty regular readin about AI's side effects, and never came across that one........
Maybe you should see a Derm to make sure it isn't something else your allergic to...but then again who knows.....the crap they give us........Phew........I would check it out.........
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Yippee, Golden!!!!!!!!!!!!!!!!!!!!!!!! Fantastic.
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Thanks, Ducky. I've gotta go see the Derm anyway.....may have another spot of skin cancer, the least of my worries. LOL Anyway, good to know you've stayed up on the SE's and are more informed than I am. I've got my one year follow up with my M.O. in a couple weeks, so I'll have him put in a referral to the Dermatologist after he checks it out.Onward and upward. Take care.
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