Calling all triple negative breast cancer patients in the UK
Comments
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Hi Joy,
It is totally normal to be terrified, and paranoid .. but this doesn't mean you are right to be! I would like to share some of my experience .. I had bone aches all over my body and I mean terrible bone ache when I had Neulasta and my MO said this is a typical side effect. My MO didn't accept to do any other scan apart from blood test through chemotherapy even though it was before surgery.
So I leaned to keep positive even when I am in doubt and freaking out, and also learnt to ask questions to MO about my worries and let him find the right answers.. so you can always ask again.
Keep positive; negativity will release stress hormones and your body is in a need for happy hormones.. help your body with this until you meet your MO again.
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Hi, Joy
I don't believe you will get an MRI while you are actively doing chemo, there can be many unpleasant feelings and pains during chemo and it's hard to tell what's what. Tell yourself that you are zapping little bad cells with the chemo, and it will be over before you know it. My husband was ill when I was doing chemo, so we were home together. I would tell him I couldn't wait till summer was over, because when summer was over I would be finished with chemo. One day he said, "Mary, you are wishing your life away when you say that." He was right, when I look back now those days are a blur to me, and I had some bad days. You will get through it all, and then you must tell your docs what is going on still and they will test what they determine needs testing. And if you are worried about something now, tell them you are worried about it. They will either explain it, or they may adjust your dose of drugs if necessary. 4everstrong is right, the neulasta can cause bone pain, which is temporary.
Take care, talk to you soon, we are here for you,
Mary
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Hello everyone,
Mary, I am so sorry to read about you losing your husband. I feel frustrated by words, they seem so inadequate at times and this is one of those times. My heart breaks for you, both my husband and I lost our first spouses at a very young age to cancer so I am familiar with grieving a spouse. Each person's experience with grief is unique and so different, I would never tell you I know what you are going through, just know that I care and am praying for strength and courage for you for each day.
Joy, chemo is a systemic method of treatment, designed to kill cancer cells anywhere in your body. The pain that you are feeling now will be from chemo as well as stress you are holding inside of yourself. Perhaps you are holding muscles tight and this may be causing the pain. 4everstrong is right, the neulasta shots will also cause pain in your body. Yes, it is frustrating, but clearly communicating what you are feeling in your body to your medical oncology team is very important. They will listen, maybe ask more questions and then be able to advise you on what their next step(s) is. Do ask lots of questions as well so that you know what to look for/feel in your body. Are you able to take deep belly breaths? I have to remind myself to do that several times every day to release the stress in my body. Just 2 or 3 of them and I can feel a big difference in my stress levels.
About a month ago I found a great book called "Picking up the Pieces: Moving Forward After Surviving Cancer" by Sherri Magee and Kathy Scalzo. I can highly recommend this book to everyone. I have found it to be invaluable. It has completely changed my way of thinking. Quite honestly, I was lost when I finished my radiation treatments, not sure where I fit in life. It felt like everything had changed and I was disoriented. This book helped me understand that the end of treatment can be the most difficult part of the diagnosis because people expect us to get 'back to normal' and yet we can't because we're forever changed by cancer, especially TNBC. It them describes that each one of us is like a puzzle and that when we make a puzzle, we start by finding the corner pieces, build the outer frame and then fill the inside in. Our lives are like that, each of us has 4 corner pieces (foundations): emotional, spiritual, physical and relational. Once we know what we want these 4 "corners" of our lives to look like (there are a set of questions that help you determine what your corners will look like), you can then build the framework for the puzzle and then fill in the pieces; that is, complete the puzzle of you. I only wish everyone would read this book, I know it has helped me tremendously. I have a renewed sense of 'me', I look forward to my daily check-in walk, I am suddenly much more aware of the things in life that I was rushing past before. I am taking the time to smell the roses. I have to be honest, I don't know what the final new me will look like, it's a work in-progress, but I no longer feel lost, it's ok for me to not know, yet. If you are feeling lost by your cancer diagnosis, especially TNBC, please read this book. I hope that it will be as helpful for you as it has been for me.
Thank you everyone for sharing so openly here. It has been a wonderful source of information and support for me. You are truly wonderful women.
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Hi jacklin
Thank you so much d'or sharing your experience.. this book sounds like what I need right now.. And you are absolutely right we need to let our new us build up.. I like what you said .. "Its ok for me to not know, yet" I will keep repeating this to myself. Cause frankly it will do me good not to know yet regardless.
Will buy and read this book.
Good vibes and excellent recovery to all of us.
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Hi, 4everstrong
Thanks for kind encouraging words; my husband was ill for a while, he had several chronic illnesses that progressed and made his life impossible. After he died, his daughters and I were going through pictures and it was wonderful to look at him, and me, when we were younger together. Happy and healthy and laughing. That was very therapeutic, there had been a lot of time spent looking at each other and seeing each other weak and ill; I had forgotten how we were before. We used to take his boat out on the river and fish while floating downstream on cool summer mornings, it was quiet and beautiful with sparkling water. I try to think of those times when I am feeling anxious.
You are right about the new life! Between him being gone, and the cancer, and the scars it has left behind both mental and physical, there is a lot of adjustment to be made. Life has changed completely. I may also get the book that Jacklin has recommended, it sounds like just what I need.
As far as diagnostic tests go, I have never had a PET scan. It was explained to me that if the docs don't suspect there is anything going on, they don't recommend it because there can be areas in your body that "light up" even if there is no cancer there. So it is mostly used on patients where cancer is being observed, or suspected. Although I have a friend with BC who had one done without symptoms of any further cancer. So it probably depends on your doctor.
Talk to you soon, glad you are here,
Mary
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Hi, Jacklin,
Thanks so much for your kind words of condolences. I try to think of he and I when we were happy and healthier together, instead of weak and ill. I think your book sounds great, and maybe just what I was looking for. I do feel adrift, my partner is gone, and for the last couple years of his life I was his caregiver in different degees while his illnesses progressed and I developed TNBC. We were together almost 24/7, and now I find myself wondering who I am and what is my purpose. The cancer treatment has left me with a different physical capacity than I had before, I am also 2 years older than when all that started. And as you very well know, we all have the feeling of looking over our shoulder to see what is coming next, fear of recurrence. I have been on a few trips that I have thoroughly enjoyed, and actually find myself wanting to do nothing but that, escaping I suppose. The problem is that when I come home there are quite a few things I need to deal with, and I find myself almost paralyzed with decision-making and just "getting things done." I am going to read the book you recommended and see how I can apply it to my life.
Very glad you came here and joined us!
Talk soon, Mary
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My Mo told me no scans unless I have symptoms. Makes sense for me, as if I live 5 years and get scanned say every MO visit thats a lot of radiation in my system plus year or bi-yearly mammos for my other breast. Darned if you do damned if you don't.
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Hello 4everStrong,
I have finally found a moment of calm to sit down and answer your last post to me on July 27th.
First of all I would like to say thank you again for those links. I have found them all most interesting, even though some of them are a bit complex. There is obviously a lot of research going on to find more drugs for the treatment of TNBC after standard treatment, but of course all the treatment is in the initial stages, and it may take many years to go from experiments with mice, to trials and their various stages and then perhaps some new drugs. What I do not like about all these research papers is the doom and gloom descriptions of triple negative breast cancer. I would think it is not very helpful to newly-diagnosed patients. They just need to know the basic facts about the kind of breast cancer they have, the size of tumour, stage, grade, node status and the planned treatment. My most important thing to say to newly diagnosed patients is not to take any notice of the doom and gloom that is written about triple negative.
I was very interested to read about your studies. It is strange that we have both studied in different countries. I did the Licence-ès-Lettres in France after I had done my BAhons in French here.
What exactly do you do in your work on a daily basis?
I do hope you will find some comfort here with emotional support. The good thing here is that we have all been through it. If you feel you need some counselling, then go for it. It is always good to talk through any emotional problems rather than holding them inside yourself. There are also lots of inspirational books you can read that can help. Over the 250 pages of this thread various books have been mentioned. I am sure you can find something to suit you online. The books written by women going through or who have gone through treatment are really the best ones.
There are also magazines that are helpful. I have been reading a magazine entitled Vita which is highly readable and you can subscribe for free and it is online, I think. The magazine icon is well worth reading, so is subscribing to Chris Woollams newsletter. That is also free. Chris Woollams works with Cancer Active. I have been following Chris since 2005 and signed up for free to receive his email. He is so well informed.
How did your blood tests go yesterday and I hope all has gone well today at your appointment with your MO. I do hope all is in order with your blood tests.
I shall be very interested to know what your MO has to say about what you can do to minimise recurrence.
Since I was diagnosed, and saw a homoeopathic consultant and a specialist nutritionist doctor in addition to my standard oncologist, breast cancer consultant and standard medical team, I have been taking bitter apricot kernels and drinking plenty of green tea. Both are supposed to be anti-cancer.
That is about all for today.
Take care.
Fond thoughts.
Sylvia xxxx
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Hello Jacklin,
I am just popping in to give you a warm welcome and to say thank you for posting the title of that important book. I am sure we shall all be reading it.
I was looking at the details of your treatment and am so glad to know that you have successfully finished all the different stages.
How are you feeling now? It is a very difficult time when we finish treatment because we are left hanging loose except for periodic check ups.
Wishing you all the very best.
Sylvia xxxx
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Hello Valstim52,
I just wanted to say that I think it is probably a good thing to avoid scans if we can. As you said, all that radiation does not do our bodies any good. I think we need to learn to read our bodies and just get an appointment to have everything checked out, if we feel there is something wrong. I had a CT scan and a bone nuclide scan before and after treatment and that was enough for me. Reluctantly I had mammograms every three years, but I always worried about the radiation.
Thinking of you and sending you fond thoughts.
Sylvia xxxx
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Hello everyone,
I can see from some of the threads that patients are suffering from hand and foot syndrome (HFS) during chemotherapy. This appears to be quite a common side effect. The following link is very informative about this and you might like to have a look.
http://www.cancer.net/navigating-cancer-care/side-...
Wishing everyone a good weekend and hope to hear from Hanieh, Amanda, adagio, Michael, PeterandLiz.
To Mary, I do hope everything will get better for you. If i were you, I would follow your feeling that you want to go away on trips. Remember we all have to live our lives to the full.
Best wishes to everyone.
Sylvia
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Hi all.
So I have had my blood test yesterday and I met with MO and also saw my Surgeon to discuss the open wound.
My blood results are little low in white and red cell count and also on lymphocytes. All the rest seem to be within the right range.
My vitamin D is about right, just about, so I ask my MO about switching to daily intake rather than a monthly intake of vitamin D- he agreed!. I asked him about the pain I have in my foot and he doesn't seem concerned, I will contact an orthopedist and follow up this pain with them.
The surgeon still doesn't understand why I have an open wound, she said it is healing but quite frankly she doesn't understand why it still didn't heal and why is it taking so long.
PET scan is a no! for my MO, he said at the end of treatment he will be asking me to do MRI both breasts and a thorax and pelvic scan and that's all. After that we will meet every two months.
Thanks for your support, will meet my RO on Tuesday – will keep you posted.
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HI, Sylvia,
I am okay, just have some blue days. I will be allright. I am remembering about living life to the fullest, I have planned a trip to Aruba in December. My sis-in-law also sent me info about trips to Alaska, Rome and Southern Coast of Italy, and Mexico again. We haven't decided on any of those yet.
I think you might have missed my last note to you, it is now on the previous page, I commented that Chris Woollams hasn't been around in a while. And Ty Bollinger shows up in my emails constantly selling lots of different products, I don't even look at some of them anymore, it's too much. My landline phone rings constantly because our state primary election is next week, I don't answer it anymore, only my cell phone.
I shall talk to you soon, Mary
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Hello Mary, 4everstrong and welcome Jacklin
Sylvia so well said. I immediately learned not to look at the negatives about TNBC. Additionally, I have the fortune of having 3 dear friends with TNBC and had 2 with positive receptors. Unfortunately those with positive receptors have progressed, in spite of ai's and tamoxifen. My TN friends though with some debilitation due to treatment are 4, 6,and 7 years from their stage 3 diagnosis. Interestingly my other friends were lower stage 1a and 1b. That taught me before this new journey with BC to not read the negatives.
Additionally, they seem to throw the kitchen sink at TN and though harsh and difficult I believe it is saving lives. First time, I had a lumpectomy and radiation. I believe the rads and the tamoxifen I took for a year are a good reason why possibly it has not recurred at least for now.
Just my 2 cents.
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Hello Mary, 4everStrong and Valstim52,
Thank you for all your posts. I shall be answering later on.
Mary, I am sorry I missed a post. It is true that we have not heard from Chris Woollams in a while. Let us hope there is nothing amiss. He is probably taking a well deserved holiday, as his work must be pretty overwhelming. Let us see if we get an email for August. I keep wondering whether icon magazine is still around. I did not get any satisfaction when I phoned up about it. I was wondering whether it is all on line now.
I shall talk to you all later.
Best wishes.
Sylvia xxxx
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Hello everyone,
You might be interested in the following links from last Tuesday's Daily Mail, under Good Health. One is about how wearing stilettos may lead to cancer and the other is about costly cancer drugs that are thrown down the drain.
Best wishes
Sylvia
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Hello 4everStrong,
I have just read your post about your blood test, meeting with your MO and also your surgeon. It looks as though you had a busy day.
I was not surprised to read that your red and white blood cells are a little low. Remember that your body has been through a lot with chemotherapy, surgery and radiotherapy. It will take time to build them up. When I was going through my treatment, especially chemotherapy, I kept my red blood cells normal through taking iron tablets and eating iron rich foods, such as prunes and dried figs. This also prevented me from getting any constipation which is another side effect of chemotherapy. As for white cells, mine were always normal, although I did not do anything in particular except eat very healthily and often with small meals. As for lymphocytes, which are part of the white blood cell group, I know that some patients did get quite ill on very low levels. Remember that chemotherapy, surgery and radiotherapy will all have compromised your immune system and it will take time to build this up again.
I believe the way to do this is through healthy eating, leisurely walks and keeping stress free. I am not keen on medication to help this, unless it becomes life threatening. My motto is Let food be your medicine and medicine be your food.
Did your MO have any suggestions about getting these things up to the normal range?
I do remember, when going through treatment, that each chemotherapy session was preceded by blood tests to check the levels and the levels determined whether you proceeded with the chemotherapy. I was lucky that I never had to postpone treatment. I did see some women having to have blood transfusions in the ward where I was sitting having my chemotherapy. It did make me feel anxious. I also saw women being sick, but fortunately it did not happen to me. I also know that some women were ill with neutropenia (low white blood cells) and had to be hospitalised. It looks as though you have done well and got through chemotherapy without all this.
I do hope your open wound will soon heal. How much time did you have between finishing chemotherapy and having surgery? I had six months of chemotherapy, starting in November 2005 and ending at the end of April 2006. I then had from April 28th to May 17th to recover from chemotherapy before having a mastectomy. After that I had quite a long wait before I had three weeks of radiotherapy with boosters included and I think I ended about mid July.
It is good that all the other things tested in your blood tests are in the right range.
As for your vitamin D, I was surprised to read that you have been taking it on a monthly basis. Is that usual? I am taking Solgar soft gel vitamin D3 5,000 IU a day. I have been doing this ever since I was diagnosed. I believe in taking high doses because it seems that lots of cancer patients when diagnosed have very low levels and it is thought that vitamin D deficiency may be contributing to cancer and other chronic illnesses. It is not easy to get vitamin D from food and the best source is sunshine. I have read that vitamin D is really a hormone and not a vitamin.
It is strange that your surgeon does not seem to have an answer to why you are healing so slowly. Should she not have some idea? Is it to do with a compromised immune system?
I do not know how our experts decide which scans to give us, but I do believe we should have scans before and at the end of treatment. Like this we have a measure of how we were before and how we are at the end. I also believe that everyone should have a DEXA scan to establish what state their bones are in before treatment and whether after treatment they have developed osteopenia or full blown osteoporosis. We know that cancer treatment damages the bones. I have osteoporosis as a result of my treatment and also because of an over active parathyroid gland that was discovered when I was diagnosed with breast cancer and had a blood test.
I hope all will go well when you meet with your RO on Tuesday August 2nd. I shall be thinking of you.
By the way, here in the UK, my oncologist dealt with both the chemotherapy and the radiotherapy. I remember that, before chemotherapy, I had to give her my weight and height, in order that you get the right dose of chemotherapy drugs, as the amount depends on your height and weight.
I also remember her telling me that with radiotherapy you can suffer from inflamed lungs. Luckily I did not.
That is all for today.
Best wishes
Sylvia xxxx
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Hello Mary,
I was glad to read in the post that I missed that you are planning a trip to Aruba in December. Why not tell us a bit about this place? Are you planning to spend Christmas there? Those other possible trips to Alaska, Rome, the Southern Coast of Italy and then to Mexico again, all sound very interesting.
I do hope we shall hear from Chris Woollams soon. I remember that he is now doing two different sections, one devoted to cancer and one to general health issues. I think these websites are good places to go to when in search of information. I can understand why you would be getting tired of emails constantly arriving from Ty Bollinger with products for sale. Our bodies do not need all this and a lot of it is very expensive. We just need good, simple food and I think that the Mediterranean/rainbow diet is the way to go. The Paleo diet sounds interesting as well.
I am still drinking loads of green tea and eating bitter apricot kernels. Do you still keep to these? I was wondering how many people are still taking metformin or low dose aspirin. I am not.
I saw one thread where TNBC patients seem to be taking Xeloda after treatment and I was wondering why. Is it a case of the medical establishment determined to put TNBC patients on something after treatment?
I am still following the Presidential election in the US and the Labour party leadership election here.
That is all for now.
Love.
Sylvia xxxx
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Hello Valstim52,
It was nice to hear from you. We definitely have to be positive about negative! I was interested in what you said about your dear friends. I have experienced the same kind of thing. A friend and neighbour of mine was triple positive, her cancer came back within a year, metastasised and she died. Another one, also hormonal but not HER2+, was free of cancer for fifteen years, took tamoxifen and had to come off it, then had aromatase inhibitors, but the cancer came back and spread. She is now on numerous drugs. I do not have anyone in my circle that has had TNBC except the daughter of a friend of mine who was diagnosed in 2005 like me, but was only 38, and she is still alive, well and has been running marathons etc. for years. Like me, taking nothing in the way of medication.
It could be that with TNBC, the initial treatment gives it a good kicking and we are doing well without medication and letting the immune system do its work, without being held back by drugs.
From what you have said, this is your second time round with breast cancer. Was it hormonal the first time, as you had tamoxifen?
I have read that if you have hormonal breast cancer, and are on tamoxifen for a long time, you can end up with triple negative breast cancer. I have also read about manipulating triple negative breast cancer to make it hormonal and treating it with tamoxifen! That was some time ago, so I do not know whether it was ever done, but it sounds a bit Frankenstein to me!
That is all for now.
Best wishes.
Sylvia xxxx
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Yes it was hormonal last time, as for the breakdown that was not the norm 24 years ago. Tamoxifen was considered a clinical trial when I took it.
I do see some pushing to be put on xeloda which is a form of oral chemo, after finishing the 'standard' TBNC protocol. There was a japanese study someone quoted about it being helpful if patients test positive for one of the genetic markers. I personally feel its lets get on something to stave off a spread. I do know a few on this site that have pushed their mo's to put them on it, and others are put on it due to the brca or other genetic markers.
Personally, I'm done for now with treatment once rads are over. My body is ravaged, and I need to recoup from both the cancer and treatment.
when you are able or if you can pm me, more about the apricot seeds? I'm a green tea fanatic so I will start back on that, I was told by my homeopath while in treatment to avoid heavy antioxidents.
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Hello Sylvia and Mary,
Thanks for your compliments about my picture, Sylvia. The look on face is me being delighted with my free wig. I still have a lot of reading to do on this forum, but so far it has helped me keep everything in perspective. It's interesting to me that in the dark ages, as you said, Sylvia, that doctors did not identify TN, calling it "not hormonal," with a poor prognosis. I often wonder if newer trials and experiences just haven't caught up with our shared information yet. I do like to think that a) things are improving, and b) that yes, our immune systems are preferable to imperfect drugs for prevention of recurrence.
I also use food as medicine, and "treated" myself long before cancer came along. I had quite a few organics, alternatives, and antioxidants in my diet. So far have only given up turmeric temporarily. I was advised not to take antioxidant supplements, but to continue with the clean (ish) eating. I've been doing fig/peach smoothies non-stop during this summer weather.
Working through treatment is both beneficial and very difficult. I've completed 8 Taxol/Carbo treatments, with 4 to go, and have had some minor issues: nausea, a little vomiting, slight neuropathy/tremors, constipation, back pain, and acne/facial rash. All have been reported to my team - who are incredible - and managed as best as possible. I'll have 4 A/C treatments at 3 week intervals following the Taxol.
By far the heaviest SE is fatigue. I'll take that over nausea/vomiting any day, but sometimes get tired enough to lie down again before or after I get ready for work. Sitting in a chair all day is uncomfortable, and lasting the full amount of hours is impossible some days. Fortunately, my workplace is flexible, and I am able to do much of my work from home. The best part about it is distraction and the support of my friends there. They make me feel better, for the most part, though some folks are just plain afraid of cancer. I understand. That fear is pretty primal. Those people send love but tend to avoid me, which I don't mind.
I have a lot of choices to make about surgery, but my surgeon admitted that she would have at least a mastectomy if she were in my place. The main thing is that mammos and ultrasounds at 6 month intervals did not catch my tumor, so I wouldn't ever feel all clear. Then there are aesthetic concerns with having a decent looking outcome, and practical concerns about having multiple surgeries. I've heard of several women opting out of reconstruction, including both of you. I'm not planning to go in that direction, but I admit, that idea has it's appeal.
Mary, I'm so sorry to hear about your husband. I can't even imaging shouldering a load like that at the same time as this one. I know I've made a point to be grateful that I have someone to nurse me and pick up the slack here. Today we went to Target and Smart and Final to stock up on supplies. I let him do all of the lifting so I could make it through 2 - 3 hours on my feet. Also, I am open about acupuncture in the future, so I'll know who to ask about it.
Anyway, I'll be here, mostly reading, and sometimes posting. I hope everyone is having a relatively good day and getting a chance to get out and enjoy life.
Pam
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Hi Sylvia
Well there seems that there has been lots of posts for me to catch up with.
I don't know much about Angela Eagle or Owen Smith I just know, that, as far as I am concerned, either would be preferable to JC. I am afraid that the people JC has surrounded himself with have the agenda to destroy the labour party. I am also pretty convinced that they are going to prevail.
My wee dog has bandjaxed yet another leg. I have never known dog with such a propensity to injure legs. she should have been supplied with a spare set ☺
Here is link 23:
http://www.dailycal.org/2016/05/22/researchers-fin...
Michael
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Hello Valstim52,
I was interested to know that just 24 years ago there was no receptor breakdown and that tamoxifen was considered a clinical trial when you took it. I have a friend here who was diagnosed about 30 years ago and all she had was a lumpectomy and radiotherapy. She has had no recurrence since. She was only in her late twenties when she was diagnosed so I just assumed she probably was triple negative. She could have been hormonal, of course, but it has not come back.
I have no idea how long patients here in the UK have been getting receptor status, but I rather think it is not that long. I have a neighbour here, diagnosed last year, but she really had no information about her breast cancer status and it is only through asking her about her treatment that I could conclude that she was hormonal, but not HER2+, and that after a mastectomy and radiotherapy she was put on tamoxifen and then Arimidex. She told me she did not really want to know anything. She did not need chemotherapy, apparently, and so her treatment went rather quickly. I do not think she knows what type of breast cancer she had, but probably, invasive ductal carcinoma, which is the most common. She seems fine now.
I can understand how patients with the faulty genes might want to try Xeloda, but all these drugs are toxic.
I think you are right about getting your body back to normal when you finish your radiotherapy. Your immune system will have taken a beating and it now needs to build up and get strong, so that it can see off any intruding cancer cells.
You asked about the bitter apricot kernels that I am taking. I have been taking them ever since I was diagnosed in June 2005 and wanted to find out if I could help myself with my breast cancer other than having standard orthodox treatment. I saw a reputable nutritionist doctor who was quite well known, and deals with cancer treatment. She told me that I should have the orthodox treatment, but gave me all sorts of information about food and cancer fighters. On the sheets of information was a pyramid listing food in order of importance. Somewhere in all that information was bitter apricot kernels and she recommended 30 kernels a day, spread out over the day, when cancer was active. They are supposed to kill cancer cells. I have taken them ever since but now take about 10 a day, 5 at a time. A lot of women say they do not like the bitter taste, but I love it and usually eat them when having a mug of green tea. As for the tea, I drink mainly Clipper decaffeinated green tea, but also Clipper pure green tea. From time to time I drink the leaf green tea. I also like green matcha tea. As for the bitter apricot kernels, I buy Creative Nature Apricot Kernels. I buy them in my local natural food store, but you can get them on line. It says on the container Himalayan, Raw super seeds, Extremely bitter!, Gluten, Dairy, Soy free, Source of Laetrile. I buy a 300grm container and this is a lot of kernels.
http://www.creativenaturesuperfoods.co.uk/product/bitter-apricot-kernels/
It says on the back Creative Nature's Apricot Kernels are one of Nature's richest sources of laetrile, a powerful antioxidant.
There is some controversy about these bitter kernels, but I have been taking them for over 11 years on a regular basis. I have even got my husband, Raymond, taking them!
I took these all through my treatment.
Good luck with your radiotherapy.
Fond thoughts.
Sylvia xxxx
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thanks so much Sylvia. Anything that can help. I believe in blending natural with standard treatment. I take tumeric powder as well and cook with it as much as possible. I drink gallons of green tea. It so helps my digestion and overall well being.
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Hello Pam,
I was so glad to read that you have found the thread helpful in keeping everything in perspective.
I do think that everything goes quite slowly with the medical profession but it seems to be that cancer is not the death sentence that it used to be and that people are surviving for a lot longer. I do not have anyone in my immediate surroundings here to know exactly what is going on with information to patients. When I was diagnosed I could not find anyone who had this non-hormonal diagnosis and it certainly worried me. I read myself silly trying to find information. Today, patients can find so much information on the internet about different kinds of breast cancer, tumour receptors etc. and treatment that they should be able to go informed to their appointments with breast cancer consultants and oncologists, not to mention radiologists. Patients must be in control of their treatment.
The treatment is still surgery, with a choice of lumpectomy or mastectomy. My grandmother has a mastectomy back in about 1954 and she had radiotherapy, which I think was a lot more brutal than today. Her cancer spread and she died in 1955 of metastatic breast cancer.
I am not sure when chemotherapy was first introduced, but I know that my oncologist talked about the old regime chemotherapy drugs and the newer ones. I think, by older ones she meant basically the drugs, epirubicin, doxorubicin, cyclophosphomide, fluorouracil, methotrexate. When I was diagnosed the second newer regime of chemotherapy drugs seemed to be the taxanes, docetaxel and paclitaxel. After that came the platins and of course now we have monoclonal antibodies, such as Herceptin. I remember when diagnosed, that the taxanes were expensive drugs.
I think in the UK we always seem to be behind the US.
As for radiotherapy, we now have the supposedly safer form of radiotherapy, known as proton beam. Here in the UK, they are only just getting round to building two complexes for this treatment, and I understand the building will take sometime and will not be ready until 2018.
I am glad we all seem to be in agreement on the thread about the importance of healthy eating and being active to make our immune systems strong.
I can understand how working through treatment can be both beneficial and difficult, especially as fatigue and other side effects can build up as you go through more and more chemotherapy sessions. It is good that anti-nausea medication is given with treatment. I did not have any but I drank a lot of ginger tea and added ginger root to it very often. Dried figs and prunes kept constipation at bay. This neuropathy is no joke and there seems to be no cure.
Everybody mentions the fatigue. I would think it is hard to escape it, because patient's bodies are being poisoned and their immune system is severely impaired. I am not surprised that you need to rest before or after getting ready for work. I would expect this under the circumstances. I am glad to know that your workplace is flexible and that you can do some work at home, as commuting must be really tiring.
The good thing about being able to work is that it takes your mind off cancer. I know that when I was first diagnosed, I could not get the thought out of my mind. Whatever I tried to do, the word cancer was all I could think about. It was worse at night, when cancer seemed to take over my mind completely. It does get better and will occupy a smaller and smaller space in your mind.
We shall talk more about surgery when you have finished your chemotherapy. It is good to deal with one thing at a time in this cancer journey.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I was so glad to see you back on the thread.
Thank you for link 23, which I shall have a look at as soon as I can.
Your poor dog is having a hard time. I do hope she will get better soon.
I shall write soon about the Labour Party etc. I must take a break now and have a walk round.
Best wishes.
Sylvia
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Hello everyone,
I do hope all is fine with Hanieh, adagio, Amanda10, PeterandLiz, and that we shall hear from you soon.
To Mary, I was pleased to see that today I received my email from Chris Woollams. I now have to find the time to read it. I do hope you received yours. I also found out that icon magazine is now being published just twice a year, so I have just ordered the new edition at Cancer Active. I do not know if you can find the paper edition in the US, but you can definitely download it online. It is well worth reading. I am so glad that I discovered it at my hospital way back in 2005.
I hope to hear from everyone soon.
Best wishes.
Sylvia
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hi
I have a query. As stated previously I have just had a triple neg breast cancer of 9 mm stage 2 with good margins excised with a negative sentinel node biopsy two nodes removed. My oncologist told me after doing calculations through NHS and Nottingham that I had a 90% chance of non recurrence and my Ki 67 was 10. I start chemo on 5th August and I am very confused. I just picked up the letters for chemo and it says that he has explained fully to me that chemo will increase my chances of survival by 3 or 4% which put the fear of God into me. He did not mention that at all at the visit just that I had a 90% chance of non recurrence . What does this actually mean? I'm now terrified!!!!
Cheers
Karh
Also which is the preferred for chemo for triple negs AC and Taxol or FEC and taxol
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Hello Kath,
I have just read your post and want to reassure you that I would think your prognosis is good and I would ignore all these calculations that the experts do. It is not an exact science. You have a very small tumour, a very good stage and no nodes, so you should feel optimistic about the outcome. I feel that patients are going from too little information, to too much information. Try to relax and go forward with optimism with the rest of your treatment. Free your mind of everything else and start your chemotherapy.
There are different mixes of chemotherapy and your oncologist would have chosen the one most beneficial for you. The letters used for the chemotherapy drugs can become very confusing, because sometimes the brand names are used and sometimes the generic names are used. I shall try to explain these.
AC = Adriamycin (this is the brand name for doxorubicin) + cyclophosphamide.
EC = epirubicin + cyclophosphamide.
In North America they tend to use AC and the UK EC, doxorubicin and epirubicin are the same group of drugs and are red and cause your urine to look red straight after treatment.
A patient will usually have so many months of AC or EC and then go on to one of the taxanes. This will be either Taxol (paclitaxel) or Taxotere (docetaxel). Which country are you in?
I had three months of EC (epirubicin + cyclophosphamide) and then three months of Taxotere (docetaxel).
Some patients also have FEC = fluorouracil + epirubicin+ cyclophosphamide, and then a taxane (either Taxotere or Taxol) = docetaxel or paclitaxel.
Just ask your oncologist which ones of these you are having.
Reading these threads I have noticed that the letters AC are more common in North America and EC is more common in the UK, BUT the drugs are the same.
I hope this will help.
It is best to take one step at a time and get through each individual treatment. You might want to ask whether you are getting the drugs weekly, two-weekly or every three weeks. I had them every three weeks but these are now often administered weekly or two-weekly and patients seem to suffer fewer side effects.
Get through your first dose and see how your body reacts.
Remember to drink plenty of water while going through chemotherapy, get plenty of rest and keep looking forward. On this thread we have all been through it, we have all reacted differently to chemotherapy, but we have all got through it and so will you.
Let us know which country you are in and your age.
Please come back to us before August 5th if you have any more questions.
Wishing you all the very best.
Sylvia xxxx
By the way, my oncologist simply told me the drugs that she was going to give me. She said epirubicin was less harmful on the heart than doxorubicin and that docetaxel was also less harmful on the heart than paclitaxel.
I hope you have had a pre-chemotherapy appointment before you start to check that all is well with you. I had one and I think that was routine at the time in the UK.
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Hello Michael,
I just wanted to let you know that I shall read the link this afternoon. I have just downloaded it.
I would be very interested to know what it is that you do not like about JC. He is a decent, honest man and he has good policies. He believes that there are five problems in today's society in this country that need to be dealt with. They are insecurity, neglect, inequality, prejudice and discrimination. He believes in the NHS and social welfare etc. Is it his policies that you do not like or is it JC himself? He is not a showman or a smart Alec but he does interview well in that he answers questions and answers them honestly. He does not play to the camera at PMQs.
As for Angela Eagle and Owen Smith, they have taken JCs policies and are spouting them as their own. As for Angela Eagle she is now out of the running and I found her nasty and spiteful. She thought she had a right to be leader because she was northern working class roots and because she is a woman. I do not support women who think they have a right to power on their gender.
As for Owen Smith, he has come from nowhere and is boring.
JC has a popular movement that believes in him. They surrounded him, not the other way. If the Labour Party splits I believe it will be the fault of the Parliamentary Labour Party and not JC. They want a Labour Party that is Tory Light, so we might as well stick with the real nasty party, Tory Heavy!
I do hope your dog is feeling better today.
That is about all. Wishing you well.
Sylvia
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