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Sascha
Member
since
01-05-2012
199
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3
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05-08-2015
05:30
1 Hug
Its been a good couple of years since I last posted on here. I left as I did not find I fitted in the mainstream box as I made my own treatment decisions and did not follow ALL the Oncologists advice and got some grief over that from people........but here i am 3 years post diagnosis! The cancer I had was very hormone positive ER and PR......and lobular...............I took Femara initially but realised that it made me very depressed and affected mobility to the extent I could not get out of a chair without help, when it affected my breathing so that I could not walk for 10 minutes I stopped taking it. I waited two months then went on Aromasin (Exemestane) but now some 21 months later I have stopped taking Aromasin as felt so awful on it, emotionally and physically, got so stiff it took an hour to start walking in the mornings....and again my breathing was affected. Now i am wondering if I even watn to go back on Aromasin after a break as my quallity of life is so much better off it and even other people notice I look and seem different, no doubt because I can sleep for 6 to 7 hours now and wake up refreshed.......whereas I never had a good quality sleep on it............I could go on ........ My view is if I can now exercise again, can now breathe more easily, am getting quality sleep again, then all these factors also reduce recurrence risk, and none are possible whilst taking Aromasin...........then how much real benefit is this drug? I have not decided yet, but would like others opinions, especially if you have stopped or gone back after a break etc.....
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12-08-2012
09:23
Itchy nipples are signs fo breast cancer and need further investigation, they could be nothing but equally could be something
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12-08-2012
09:21
Hi Rae, not in same boat as you but I only have one breast now, hate being a loppy but I have to say after the first few weeks I have got used to it and in clothes you really cannot tell, but in your case it could mean any recon would simply not take or die as without a good blood flow recons simply don´t work very well.....
I was not given the option of recon simply told MX and nothing........so I too have to wait for over a year with only one breast.......its tought I am not golng to pretend but I did not bleive I would be as ok with it as I am now, I have been swimming too
Sorry you a re going thru this, its a horrible shock
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12-08-2012
08:41
Hi, i am taking Letrozole, curious about your references to changing it - to a different brand or what? How does it help doing this?. I feel like a juiceless prune in places.....
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12-08-2012
05:08
Hi Lydia - yes thank you - for me I know that dairy (or cow dairy anyway) uses lots of hormones, as I am 100% ER and PR+ then I have decided to eradicate hormones as much as I can from my diet. I do still eat got and sheep cheese as over here they are allowed to forage naturally.....Also the dairy industry is innately cruel.
Its a minefield isn´t it!!!
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12-08-2012
04:26
Kate - seems like you are hormone positive so cutting back on dairy or eliminating it from your diet will help.......you don´t mention exercise and that really is as important as diet.........there are some good books on cancer diets that will really help you to lose weight too and meet all your other criteria - the Rainbow Diet has a points system and you need to be at 100 points every day - how you get to those does not matter, you lose for wine but gain for walking.........its a useful barometer for being healthy!!
Good luck - this disease is a head messer..........
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11-08-2012
08:06
I would love to hear recommendations of surgeons please - here if its allowed or by private message, its a few months away before i will be considred but seems to me a PS is a lot better for this than a BS ??
why don´t they do reduction on good side at same time instead of later?
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05-08-2012
06:05
I would go and see the Onc earlier if you can.......its a long time to be worrying! I had nipple kind of twisted over to one side although it did not have cancer in the end but the cancer was pulling it all over.....
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05-08-2012
03:47
I think it is important to feel happy enough with your treatment choices as if you are really against something then you will probably develop all kinds of symptoms as a reverse sort of placebo effect. I am interested to know whjy the original psoter is so vehemently against Tamoxifen.........I never liked the idea of hormone treatments but decided they made sense for me and my cancer and future so decided to take them and work with them, only thiong I am struggling with is hot flushes on Letrozole but that is all and I did not have any on menopause as I had so much oestrogen floating around!! So in a funny way they are comforting as it meanss the hormone blocking effect is doing their job.
But I think you do need to be happy enough with it to take it at first and if not find out why or find an alternative, that may or may not be as effective but is better than nothing (Indole 3 Carbinol haas ben shjown to block hormone receptors in the same way as Tamoxifen but this has not been validated in clinical trials only in research and observational studies)
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31-07-2012
07:08
I might be wrong but I think sometimes there is an option to ahve this weekly rather than 3 weekly and that can be gentlrer on you but you need to talk to the Onc about that it is different regime...
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31-07-2012
02:35
My understanding is Cancer ACtive was created because the founder´s daughter was terminally ill with cancer and outlived her prognosis by many years by taking an integrative approach to her treatment.
I am not upset with you but thanks for saying something!! I jsut think it is odd that people are so suspicious of a small charity instead of the link between the drugs business and doctors and the health service - for me both have their place.....but suspicion of doctors and standard drug manufacturers seems taboo!!
Natural substances are not normally clinically tested as there is no funding for it and investment cannot be recouped as you cannot patent natural substances.......but there are often numerous rigorous observational studies for some of the so called "alternative" approaches
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31-07-2012
11:33
THank you and mine did not show on mammograms either, worrying isn´t it? Take care....xx
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31-07-2012
09:05
If you read it carefully you will see it is not their shop, they simple connect you to a reputable source because of all the dodgy sites out there on the internet.
I was not advocating anywhere that anyone stops treatment for cancer!!! In fact I am feeling really attacked simply for trying to help someone who might benefit from Indole 3 Carbinol if they do not take Tamoxifen, which they stated themselves they did not want to do so to my mind I3C is better than doing nothing hormone wise.
I would add that I did not put any emotional pressure on anyone to take it which is somewhat different to the pressure I perceive on here for someone to take it.
For the record I am pro choice and that is it. I am taking the standard hormone treatment myself. But if someone does not want to take it or feels so unhappy taking it what then? I decided to try it and see how I got on, so far so good for me. Many others I know are not so lucky esp with Tamoxifen.
I have done huge amounts of research and discounted a lot of the grot but there ARE effective adjuncts or alternatives out there as I think it is vital to never forget that cancer is mega big business for the drug companies, not just for the cancer drugs but for all the ones that go with it! Each patient on one course of chemo costs a FIVE FIGURE SUM in chemo drug costs you know! Add that up per year PER NUMBER OF CANCER PATIENTS........
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31-07-2012
08:00
good luck bizzy Lizzy - sorry your c was not found this time - was it by any chance a lobular cancer?
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30-07-2012
03:59
I am nothing to do with them other than being a grateful person for finding them BUT I find your post almost defamatory against Cancer Active - they do NOT sell anything and are totally transparent about the info on their website. Neither was I suggesting purchasing anything on the internet as I know there are so many fakes but there are safe sources for this. I would have thought BCC was about enhancing patient choice? Are you not interested in the fact that drug companies are seeking to find a way to patent the active ingredients in Indole 3 Carbinol?
Very disappointed in BCC over this post.
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27-07-2012
03:17
Nicola - there is a natural alternative to Tamoxifen called Indole 3 Carbinol, you may feel happier taking that? If you google a website called Cancer Active you can read a lot about it there....
i am someone who is very sensitive to drugs and in the past to hormone treatments but have been on letrozole for 6 weeks now with no effect at all apart from some hot flushes..........so you never know, but I do believe you need to feel ok in yourself with your treatment regimen.......
Good luck
x
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26-07-2012
11:15
I had all my lymph nodes removed too but still sweat on that side - ??
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26-07-2012
09:36
What did you use as deodorant? I live in the Mediterranena where temps are over 40 now and will be having rads - I have some 100% aloe vera gel but how do I stop myself smelling?
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25-07-2012
08:29
Hi sharon, THe Anastrazol does not affect the bones that quickly but if they don´t know waht your bones are like now they won´t know waht effect it might be having.......it is all the tests that make this so stressful as you always trhink the worst .- I am waiting on full results from lung scan, bone scan and colonoscopy where they did a biopsy, but I don´t think and did not get the impressions there is anything untoward in any of the tests.......they will wait for you to be healed enough before starting rads as otherwise it can re-open the scar etc - we might be having rads at the same time as mine will start some time in August.......have the appt with consultant Rad person in first half of aug...
Its a horrid time, but we are still here and living life
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25-07-2012
08:17
Hi Rattles, I so remember feeling lilke that - I bought one of those AAH type bras with a pocket for the padded eggshell type look and put that on first then stuffed behind it so the outsline always looked the same, they were really soft and stuffed a soft sports sock in the no breast side and then wore a baggy top, no one noticed at all even when I tried it out with tighter tops. but it is a horrible time, never been as self conscious in my life......I so feel for you, if you want I can get you one in our local markets where they cost about 6 euros and post it over to you?
Take care, its a really tough time, i still don´t like looking at myself at all but am more somcvofrtable at moment as rads not started yet.....
xx
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