by susier on Sat Apr 21, 2012 05:45 PM
On so many levels your e-mail is true but my friend from work was on the Arimidex 4yrs and the BC returned and she had to have a double masictomy and her ovaries removed. I guess there are no guarantees. I will try the shampoo. I too am happy to just have hair but it's hard to be positive when it came back for a second time on my sister and the BC won. I do work everyday and try to go through my life lik normal but it's not normal when all I want to do is sleep and the neuropathy gets worst and well as the pain. I think each day is different and I live each as it was my last. You are right happy to be alive but really limits and pain is not my idea of living. I thank God for life and I will enjoy what ever quality of life I am giving, cause my sister can't even do that. Thank you for your take on this. You have to do it forever they told me 5yrs so I have nothing to cry about. I guess I am one of the luckier ones. :)
by AlliBK on Sat Apr 21, 2012 07:18 PM
In the past 5 months I have lost three friends who were on all of these drugs as well. Had gone through chemo radiation, tried one then another. It was a vicious circle. As much as these drugs may work for some quite effectively there is no thing as one size fits all. Some people are resistant. It has little to do with changing your attitude keep a continual smile on your face and be greatful, sorry Im not grateful. This is not normal or a new normal, that term is so over used.
When I was on Tamoxifen it was suggested I have my ovaries removed. If I have to resort to surgery for every medication I take then maybe they need to re-look at these meds and find a better solution to preserve your ovaries. I told him (Gynocologist) If it ain't broke don't fix it. At the end of the day he agreed. So often procedures are used as a just in case.... there my oncologist agreed.
My body hurts, my bones still ache, I try exercise riding my bike walking, but the damage was done. . So when i hear that phrase "The new normal" What comes to my mind, there is Nothing Normal about this!
by susier on Sun Apr 22, 2012 12:06 AM
O.M.G that is exactly the way I feel and you hit it on the head. When I would say that people would tell me I was being negative. One of my sister's went so far as to say we brought this on ourselves for our way of living. WTF. is all I had to say. Unfourtantly I had a total hysteroctomy in Oct. of 2011. The only thing I can say is that I had it done with the robot and that is the only thing that didn't hurt.
I will never feel normal if anything I am angry ! No matter what I am always afraid of it (BC) coming back just like it has with so many others. I would never want to do this all over again. You made me feel a little better knowing I am not the only one that feels like we got screwed.
by AlliBK on Sun Apr 22, 2012 12:21 AM
People don't get it. They think because you had the surgery did the treatment that it's finished. It's far from over in fact it's never over. I have heard people say how they were they were diagnosed with Cancer because it made them reflect. if it takes cancer to do that then what were they doing before? I'm a single mother I barely had support from my family, I'm told to get over it your cancer is gone. Since when was there a cure for cancer?
People say be happy Cancer is not a Happy Disease. I have multifocal Breast Cancer Stage3 Grade3 . I had found some thickening on my side, my Dr told me it was a little fatty tissue, Nothing to worry about. It turned out a few months later after another Dr in Emerg asked me about my swollen arm asked if I had breast cancer Shocked I said no he sent me for an Ultra sound from that day there is no Normal.......My Dr was wrong had I left it a little longer I would not be typing this..... Believe me you are not the only one your pain is just as real as those smiling faces.
by Marep on Sun Apr 22, 2012 12:54 AM
don't get me wrong. there is no happy face...no survivor has a happy face. my doctor said it was nothing when i went to see her. it took me weeks to get an appointment for a mammogram. i found it myself....not through an exam. she said she was sorry when they called her from the center. by then, it had spread to my lymph nodes and who knows where else. the surgery was horrible...my arm still hurts every day of my life and i have no feeling in the arm from the elbow to the shoulder. it took me an entire year of exercises to make sure that i had at least some range of motion in that arm. working 3 times a day to get it back. i could not get clothes out of the dryer...i could not garden, what i could not do with my arm would take pages to write. if someone puts there arm on my arm....i could cry...it is horrible pain. my arm feels like someone takes a piano string (metal) around my underarm and makes it real tight all the time but especially in the summer months. i had excruciating pain in my hand to the point that I had every test and nothing was found to be wrong. i had a PET/CT scan that said (after 5 years) I had cancer in my salivary gland and in my lymph nodes and pelvic area and lymph nodes there and that was not even the primary site but after all it wasn't BC. after that surgery i have no feeling on my left side of my face.
I have spinal issues and not a day goes by that i do not have pain from that. i have pins and needles on my hands and feet all the time. i get rashes from the arimidex in the summer. i have had vaginal bleeding. ....and i could go on and on and on...
BUT, i would not give up a day of my life because i still have breath in me. AND, i know a lot of people who are worse off.
BTW, my Mom had BC, my grandfather had pancreatic cancer (related cancer to BC), my father had cancer, his 2 sisters had BC, my grandmother had cancer. AND, my family was not there for support either.
Was it easy...please...is it easy...please. Cancer sucks and it is not fair. but it is what it is....and i am a survivor and i will take every day and breath that others do not want.
i have a friend who had BC, then was on tamoxifin and was the .1% who get ovarian cancer while on it, she survived that only to get colon cancer. she is still here....and we laugh together.
BC is never gone. there is no cure...you are right. it can come back even 40 years later...but i will not allow it to scare me so i don't live life and enjoy every second that i have left. there is no cure for life either...no one gets out alive.
it is all part of a journey...we all do the best that we can do. don't let fear cripple you...it will get easier as time goes by. i think of all the people who were helpful and compassionate along the way. there were so many of them. and, not a day goes by that i don't think about the little special things, thoughtful things they did for me.
i loved life before cancer...i refuse to not love it after cancer. and, i am sure i will die of cancer...i just do not know when...and that is a fact. i chose not to focus on the pain part...don't always get it right but otherwise the negative will eat you up.
by susier on Sun Apr 22, 2012 01:10 AM
I guess they will never understand onless they have to deal with it personally. Not that I wish this on any woman. I truely hope you can win this battle although we neve truely win completly. I can't believe you didn't have the support you needed. That is just wrong on so many levels. I think people are crazy they don't know what they are talking about. Sometimes their stupid remarks gets me very close to turning their lights out and tell them because of their life style they deserve that and tell them to get over it.
Dr. don't know everything an all the money they raise for the Susan Coleman race or whatever the name is they still haven't found a cure. I raise money but it is for the Y-Me because that has nothing to do with finding a cure but it did get me through tuff time. They helped me get all my bills paid 100% and a knee surger I had prior to the BC. free makeup, spas, massages, wigs (I couldn't wear),scarves, manicures, pedicures and a friendly person to talk with me when times got really tuff. They are all women matched up with you to talk with that had the same kind of cance you have. When I walk I will be thinking of you.
by susier on Sun Apr 22, 2012 01:30 AM
well in this journey we all seem to be walking, some have a positive attitude (which I say go for it) other's like me are angry, scared and hard to be positive(after being at my sister side and seen the painful death she had) and others so negative they wll never have a good day until they have left this earth. Like I said I will enjoy life like it is my last day on earth because the way this BC is attacking more and more women no one really knows. It's ok to be angry, happy, greatful, negative, scared or positive these are all feelings that go with the terrirtory. We all face it with whatever is inside us but I have to wonder why is it happening more and more. People say it's the way we eat or what is in our food now a days. Other's say through the genes in our family. Nope my sister and I are the first in a huge family on both sides. What ever is causing this why haven't they found a cure after all these years? For God sake they were fast to come up with a protocal for aids. Something has to be done can't believe with all the millions of dollars they raise for research we have nothing positve about a cure, treatment or meds that can really change the quality of life for a BC patient. Until then we will deal with the way we with whichever way get's us through. To me you are all strong wonderful women cause you have come this far no matter what.
by tgmax19 on Sun Apr 22, 2012 09:50 PM
I'm new also. I've been on Arimidex for the past 8 years and I am noticing changes. My legs and shoulder have been killing me in the last 6 months. A friend of mine who has had breast cancer twice confirmed my suspicions. She takes Arimidex and had been told side effects happen after long use. Please don't stop taking it. It is a lifesaver. I have stage 4 breast cancer in the bone since 2004. It's dormant and staying at bay. I'm crediting the Arimidex for this miracle. Will take the pain if I can keep on going.
by AlliBK on Sun Apr 22, 2012 10:06 PM
If it works for you that's good. But as previously mentioned not all drugs work for everyone.
It may be a lifesaver but what quality is your life when you can barely move or feel half crippled. It is a choice people have to make for themselves Quality vs Quantity.No I'm not anxious to die. But taking it is no gurantee. My close friend was on it she died this past January 25th, did them all too none seemed to work except leave her in dire pain......
I stopped taking it nearly a year ago No regrets...
by pipperpain on Tue Apr 24, 2012 02:09 PM
i am on arimidex have mentioned to the onc that i was having alot of bone pain, it is a side efffect for sure. I often find myself wondering if the pain is from the arimidex or from the cancer that is also growing in my bones. It has left me feling so weak in my legs that i depend on my arm strength to pull me up. Anyone else feeling this wat?
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