Calling all triple negative breast cancer patients in the UK
Comments
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Dear Sylvia and all the lovely others,
Firstly please don't even dream of stopping this thread..it's a place which is full of excellent information and references about so many things relevant to all of us at different stages of diagnosis and treatment..Sylvia don't imagine that people aren't reading if they're not posting...I haven't had time to check the boards out for some time as I was in Italy for 6 days...had a fantastic time, walked (not as much as I'd have liked, but enough), ate wonderful fish and pasta and enjoyed the stunning landscapes of Liguria, high terraced hills growing vines and sloping down to the lovely blue Mediterranean. (Sorry for those of you in rainy UK!!).
Josephine, you should be exactly as you want to be, and say exactly what you want to say, and no need for apologies..I'm so sorry to read how much pain you're in. Unfortunately there is nothing more I can say or do to make you feel better, except that like the rest I feel for you and am very aware that in the future any of us could be going through what you are experiencing months...the randomness of this horrible illness! Someone wrote about how their life-style might have encouraged the onset of bc, but I can truly say that I had a really healthy diet, always exercised, did smoke, but stopped about 20 years ago now, mother and aunts never had bc, the only thing is that I used to drink wine on a regular basis, but frankly I really don't think that this is why I got bc...I think it was basically just BAD LUCK, like the majority of us here...
Bernie Ellen, my hair is also growing (white!!) but my eyelashes and eyebrows haven't yet.
Sylvia, I hope I'm not imagining it but the numbness in my toes seems to be getting a bit better... my ankles and knees still puffy and I was wondering if anyone who has also finished Taxotere is experiencing the same thing.
Bye for now to all of you.
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Maria Malta- I was the one listing the possible reasons I have breast cancer, but in no way do I really think one causes their own cancer solely by what they do. I just think I had so many risk factors that maybe I could have put off getting cancer if I had changed some of my risk factors, but I do think I was doomed! It is a crap shoot. I know of people who smoke, drink, overweight and are really pretty healthy, no cancer, no high blood pressure. WHo really knows!
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Hello josephine_
Thank you for your post. I was so glad to know that you had been doing some gardening this weekend. I think gardening is very therapeutic and I find that it calms the mind. I do a lot of gardening in the grounds in our apartment complex. I am also someone who is a Radio 4 listener, especially AM and PM. I love to keep up with current affairs and politics.I was interested to read the interchange between you and bak94 about our American cousins.
I do agree that it is important to keep up with what is going on with breast cancer treatment in the US and to compare it to the UK. I feel that the basic treatment is much the same as far as drugs are concerned, but that there is much more testing. Sometimes I think there may be over-testing, but that is my own personal view because I feel so strongly that being exposed too much to radiation is fraught with problems. I would like to have more blood tests to look for possible signs of cancer being present before the formation of tumours. However, I think that on the NHS the way things are going we get even more rationing of treatment.
Josephine_, I do admire your courage and the fact that you did gardening despite your pain. I was wondering whether you are taking any bisphosphonates as well as your pain killers. I was looking at all sorts of things on the internet over the weekend and came across a site Breast Cancer Network of Strength, formerly known as Y-ME NATIONAL BREAST CANCER ORGANISATION. There was some interesting reading about cancer in the bones. I was interested to read about intravenous bisphosphonate treatment that can alleviate pain in the bones from mets for some time. It said IV bisphosphonates and chemotherapy and radiation complement one another and are often used in combination. There is specific mention of the drug Aredia (pamidronate) which is administered over two to four hours. Apparently, Zometa (zoledronic acid) is the most widely used bisphosphonate to treat metastases. This is administered over fifteen minutes. Zometa is effective for women who have osteolytic or osteoblastic metastases.
I know you are very informed, josephine_, so you probably know all this and may have had this treatment. I thought I should post is anyway, because it may help somebody.
You probably know about Metastron and Quadramet, that are radio-pharmaceutical treatments that have to be administered by a certified nuclear medicine technologist. They are given by injection and can relieve bone pain for weeks or months. If you are familiar with this or have experienced the treatment, please let us know what you think.
The reference is: www.y-me.org/information/diagnosis/recurrent/options/recurbones.php
All our thoughts are with you, josephine_, and I hope that we shall hear from TEK2009 soon, so that we know how she is getting on.
Best wishes
Sylvia.0 -
Hello bak94
Thank you for your post. I was so glad to know that you like what Dr Oz said. I definitely think that he is somebody that we should all listen too. I have been keeping an eye on the thread that was started to give his details and was sad that very few people were viewing and no one posting, so I posted some words of thanks. Since I posted they details on this thread, I have been glad to see that people are now viewing the thread with the details and another person has even posted. Apparently, Dr Oz had a television programme in the US in the morning and that the programme is now at 4pm in the afternoon. I shall definitely try to keep track of Dr Oz on the computer here in the UK.You must not blame yourself for your breast cancer. If we look back over our lives we can all find things that perhaps we should not have done. I think it is the luck of the draw. I know that I was known by my friends and family as someone who took great care of themselves and was the last person they thought would end up with breast cancer, but I did.
Today we know so much more about risk factors and the environment. So much progress could be made if more money was put into prevention but we all have to realise that cancer treatment is very political and it is making a lot of money for some businesses.
I was most interested in the reasons you listed for ending up with breast cancer. Since we now know about BRCA1 and BRCA2 I think there is a strong case for more screening to test for this, even if they say that genetic breast cancer represents only about 5% of all breast cancer cases.
As for birth control pills, I am convinced they are causing a lot of today's breast cancer. They alter what is a natural process in a woman. The villain appears to be oestrogen and causing women to be in a position of oestrogen dominance. We need natural progesterone as a protector against breast cancer. I have recently read a book entitled "What Your Doctor May Not Tell You About Breast Cancer: How Hormone Balance Can Help Save Your Life" by Dr John Lee MD. Although the book was published in 2003, the information is still relevant. I think you would find this very interesting. You will find more details about this book at: www.amazon.com/What-Doctor-About-Breast-Cancer/dp/044652686X .
I can see that your work as a hair colourist may have caused problems with your health and did something to your immune system. We all do things, especially in our younger days, that may come back to haunt us later.
Your weight issues were probably connected to your having been on birth control pills since you were 16. It is well known that birth control pills make you put on weight. I was wondering whether you have any children, because we are told that not having children or not having them until late in life is a risk factor for breast cancer. I do not have any children, so of course I wonder whether that has played a part in my breast cancer. I also had an ectopic pregnancy in my late twenties, so I wonder whether that was another risk factor. There are so many unknowns. How are you doing with your weight now?
As for alcohol, we now know that we are better off without it and that it is a known carcinogen.
In addition, we are now exposed to so many carcinogens in our everyday lives that we would have to live in a bubble to avoid it all (and not a plastic bubble!!). There is no doubt that our industrialised society has had catastrophic effects on our life. We do not have the infectious diseases now that we had in the past, but we do have the chronic ones, and the big killers like cancer and heart disease. As you say, all we can do is move on, and keep our fingers crossed.
I still think the medical establishment should be championing prevention, rather than all these awful drugs we have to take in order to stay alive once we have been diagnosed with this awful disease.
Keep posting, bak94. We can all be proud of the quality and depth of our thread.
Best wishes
Sylvia0 -
Hello bak94 (Brenda) again, BernieEllen (Bernie) and Maria_Malta
Thank you for your postings. I am so happy to see this thread going so well on this Monday morning. I have just posted to bak94 and josephine_, so I am going to take a break now and continue later on. Hello to everyone else.I have just remembered that it is exactly a year today that I decided to start this thread, so happy anniversary to all of us and a special thanks to all of you who have stayed with it and made it a success.
Best wishes to you all.
Sylvia.
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Happy Anniversary Sylvia.
Bak94 - you and I sound like we are similair - I was working as a hair dresser for all of my twenties and into my thirties, I was on Birth Control for long long time, I would say at least 10 years. I too, have also managed to put on a lot of weight as I get older. And, I was a smoker, was diagnosed 2 months to the day after quitting. That was a kick in the pants for me. I also contribute depression and stress as factors for me. I'm not saying that any of thise caused my breast cancer but I truly believe they were definite factors in helping it along.
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Hello again bak94 (Brenda)
I was so interested in what you had to say about Americans and America. I would love you and Josephine to point out some of the nuances that you think are missed in American English and English English. As Winston Churchill said we are two countries separated by a common language!I think that probably over here in the UK, a lot of people tend to think that, in the US, everything is bigger and better. I think they became influenced by series such as Dallas and Dynasty, not to mention Hollywood. There is no doubt that houses and standard of living seem better in the US. However, we have to bear in mind that both the US and the UK are very unequal societies and that there is too much wealth at the top and too much poverty at the bottom. Despite progress having been made with people's standard of living in both of these countries, there has not been enough equal distribution of wealth and the banking crisis in 2008 has made it worse. According to what I have read, there is much more general happiness where there is a much more equal distribution of wealth and less difference between the poor and the rich. This is supposed to be the case in countries such as France, Germany and the Scandinavian countries. In the US and the UK, there has been too much emphasis on materialism and consumerism. I agree with you that the gap between rich and poor in both our countries is widening and that the middle class is disappearing.
In the UK we have unacceptably high levels of unemployment and I cannot see much future here for young people and unemployment is out of control among the 16 to 24 age group in particular. Too many people are living on a minimum wage which is insufficient given the cost of living. Senior citizens here are given a basic old age pension that is a pittance. I agree that there is also discrimination on age and that once you hit fifty it is very difficult to find a job. Is it progress now to need two incomes in order to survive, whereas, not so long ago, a man on his income could support a wife and family.
I was sorry to hear about your brother and sister being unemployed and I hope that they will find something. It looks as though the American dream has come to an end, if it really ever existed.
I do wonder about the American health system based on insurance contributions and our NHS supported by taxation. It looks as though both ration treatment. I do not know how much longer our NHS will continue to cope. Our little island, with a population of 60+ million, is over-populated and I think quality of life is better with a small population. I think of Canada, with a huge land mass, but only 32 million population. Their state health, run by the Provinces, system seemed so much better than ours when we lived there.
What happens with your insurance-based system if you do not have insurance and you do not qualify for Medicaid?
I agree with you that writing on the internet can get misinterpreted and I always think carefully about what I am writing. We are here to exchange views and information and to support and help one another. It serves no purpose to get into quarrels and I have seen this on a few of the threads. We can all learn from what others say. We have come here because we were all diagnosed with breast cancer and although none of us is happy about this, we can have an enriching time together by discussing anything we want.
Keep on looking ahead, Brenda. You will soon be at the end of your treatment. The chemotherapy will be over for Christmas and keep posting to let us know how you continue to fare with Abraxane, Avastin and Zometa.
I am sure all of us here admire your courage in having to go through treatment for primary breast cancer the second time round.
Best wishes.
Sylvia.0 -
Hello BernieEllen
I was glad to know that your hair has started to grow back and that you now have new eyelashes. Did you loose your eyebrows on treatment. I ask this because I did not loose my eyelashes and eyebrows until I had Taxotere (docetaxel). Even now, after more than six years since diagnosis, my eyelashes are very delicate and my eyebrows not like they were before.I hope everything goes well on September 16th when you go to be marked up for radiotherapy.
Best wishes
Sylvia0 -
Hello Maria_Malta
Thank you for your post and for your compliments about the thread. I am so glad that you have found it so useful.I was glad to know that you had a lovely time in Italy.
I am sure the break will have done you a lot of good after chemotherapy and before radiotherapy. I am also sure that all the healthy food will have done you a power of good and the stunning landscapes will have been very peaceful and therapeutic.
Thank you for your kind words to Josephine.
I agree with you that it is just bad luck that we have ended up with breast cancer. Even my breast cancer consultant, when I first saw her, told me that I should not have breast cancer and that I should not blame myself.
Your eyebrows and eyelashes will probably take longer to grow back if you are like me. I think the Taxotere takes a big toll on a body. I hope the numbness in your toes continues to get better and that the puffiness in your ankles and knees will reduce. I still have problems with my feet, but have learned to live with it.
Keep posting and take us through each step of your radiotherapy.
Best wishes
Sylvia0 -
Hello mccrimmon324 (Heather)
Thank you for your post. You are right in how similar you are to bak94 with some of the reasons that may have contributed to your breast cancer. There is no doubt that you would have been exposed to many chemicals and carcinogens as a hairdresser, shampoos, hair dyes etc. I know that dyeing one's hair, especially with dark hair dyes, is often put forward as a risk factor. You also took birth control pills for a long time. My understanding is a lot of birth control pills had too much oestrogen, and were insufficient in progesterone, a cancer protector. I do not know what these pills are made up of now. I am convinced that birth control pills make you put on weight and change the shape of the body.I do agree with you that stress and depression must be big contributing factors, whatever the experts say. I went through big stresses before my breast cancer diagnosis. Stress and probably depression increase the hormone cortisol in the body, and this is not good.
Best wishes
Sylvia.0 -
Hello mcrimmon324,
I forgot to say Good Luck as you face your last chemotherapy treatment on September 22nd. It will soon be behind you.
Best wishes, Sylvia.
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Thank you sylvia, I'm counting the days.
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Hi Sylvia, Bak, Tek ad others on this thread
Sylvia you ask about nuances to cite that highlight how we on this side of the pond can misinterpret what our US cousins say and visa versa; now that is a challenge with my chemo brain. When it next happens I will write it down
As a family we love going to the US and my teenage children who both watch American 'shows' (as they call them) are as familiar with US culture as any American kid. It is a great place to go on holiday as people are so enthusiastic, and service so good and things -so accessible. I also note how much more advertising of drugs there is (big time pharma drugs not just pain killers) and more talk ttime shows devoted to disease and treatment, that my sense is that people are more aware and knowledgeable in the US. That said, there is this terrible gulf between those that can afford insurance (and I became aware of the need to have insurance to bridge what medicare does not cover this August when I was in Florida) and those that cannot. In the UK whilst there is unenployment and poverty I get the impression that there is not such a big gulf. All this is common knowledge so how does it influence what we say? I guess it is being aware that there are many ways to slice a cake, and that what we are familiar with is not necessarily the best. I am jealous though about the fact what whilst thee US have had public cuts, the research budget has not been so badly affected as it has been here .
Yes Sylvia I am on Zometa (since Jan) and as I have not got a clone, cannot tell you what would have been the effect w/o zometa and whether it has done anything? clearly my bone mets have spread. Currently I am looking forward to getting my mets zapped in my spine, hip and ribs by radiation. Does anyone reading this thread know/had this procedure?. I think I read somewhere that you get 5 sessions or so? and that the outcomes are good.
The less good news having met Prof (blank) UK expert in TNBC last week is that the PARP trials (as I thought) are not panning out for TNBC, and that the waiting game continues. He also suggested that I get tested for the BRACA mutation; most likely will be negative as I have no family history and am 53, but if by chance I am in that 5%, it potentially may open up more treatments. As you know the PARPs were orginally developed for the BRACA positive TNBC as these individuals have a mutattion in the enzyme involved in DNA breaks. Anyway.................
Having rest day today, but lying in bed sucks. Work properly at work at least three days a week and that is what keeps me going. Will look into denusumab soon (the alternative to zometa)
finally y Sylvia to add to your discussion re what prdisposes ourselves to breast cancer, or TNBC in particular. What everyone has been describing are environmental agents that potentially bring about epigenetic changes to our DNA, with the consequence that a well behaved basal cell starts dividing beyond control. Cell cycle is one of the most tightly controlled processes in the human body, and why there are several different mechanisms that come into play to ensure that it does not go awry. Hence, many of these mechanisms need to be defiective before a cell becomes a tumour cell. One of the most important in cell cycle control is a process called apoptosis (from the greek) meaning programmed cell death. Most cells will apoptose eventually, but not cancer cells who have managed to short circuit this loop, so many drugs in development are trying to correct this. The problem with these drugs is that they will not be specific to cancer cells. A better approach is targetted therapy, whereby the tumour is targetted by a monoclonal antibody (like herceptin), and is engineered so that after bnding the tumour cell death occurs. As we ALL know TNBC lacks specific markers AT THIS TIME, and my feeling is that more research should be directed at finding these both on the primary tumour but also on the mets. The second area which I think is underfunded, or needs more research is understanding how our own immune system can be beefed up to be more active against the tumour. However, tumours are very crafty and secrete (or even get the immune cells to secrete) chemicals which inhibit the immune response. One of these chemicals is called transforming growth factor beta which very effectively inhibits the function of immune cells. In a away the tumour is a parasite (and certainly not a commensal) and why evolution has supported their development is a mystery to me, other than the fact that epigentic (paint stripper, smoking, hair dyes etc etc..) bring about changes during our lifetime that are not inherited.........blah blah blah now that I have sent you all to sleep I shall sign off (with lots of typos)
J
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Hello Josephine,
Thank you for your post.I do agree with you about the enthusiasm of American people and their friendliness. On the few times that I went there during my long time in Canada it was something that really stood out, as did the service in shops, restaurants and hotels. There is an incredible enthusiasm for life and for getting things done that we do not have here. I think also that we could learn a lot from the good service you get in America. I think you are right that people are more knowledgeable about illness and treatment, but I am not sure that the big pharmacies literally throwing drugs at you is a good thing. That is my own personal opinion as someone who tries to take as few pills as possible. I also wonder about the insurance based health care and I was asking on the thread what happens when people do not have money to pay for treatment and do not qualify for medicare. I think that in this country people are too much in awe of doctors and the medical establishment and do not ask them enough questions when being treated. I know my own consultant was surprised that after my first contact with her, I sent her a letter with a long list of questions about my breast cancer. When I saw her next she thanked me for the letter, said how scientific it was and answered all my questions. She also told me that usually most people do not want to know what is going on.
I think that both the US and the UK are very unequal countries and that there is a big gulf in both between the rich and the poor. Apparently it is in these more unequal countries that people are the unhappiest and the most segregated. I am in the middle of reading a book entitled "Injustice, why social inequality persists" by Daniel Dorling. It is right up to date (2011). The US and the UK are not painted in very glowing pictures, and society is better in more equal countries such as the Scandinavian ones, France, Germany and Japan. I have also recently read a book entitled "Chavs, the demonisation of the working classes" by Owen Jones. I found the book quite brilliant.
I think that the problem with the UK today is that too many people sit back and moan and complain, but they will not take action. Having lived abroad for quite a chunk of my life, I find everything quite subdued in the UK after Canada and France. When I was working in Morocco I was with French teachers and Americans serving in the Peace Corps and they were all very outspoken and energetic. My Moroccan students were amazing.
I do agree with you that in this country there is not enough emphasis on research and development. My husband knows all about that because he was in R & D as a chartered electronics engineer. Business is very short-sighted and neglects R & D. All the emphasis was on marketing. Then they were surprised when they had no new products to sell!
Yes, Josephine, it is unfortunate that you do not have a clone so that we can compare the effects without Zometa. I have read that there are two kinds of bone mets, osteolytic and osteoblastic, and that most women with bone mets have osteolytic lesions, and this is what the drug Aredia targets. Zometa is effective for both types of mets.
In your post you do not mention Metastron or Quadramet, the two radiopharmaceutical drugs. Have you had these or are they not available here?
If anyone reading this thread has any experience with radiotherapy for bone mets, would they please support Josephine and let us know.
I hope you will not have to wait long for your treatment.
I have read much the same as you have about PARP inhibitors and I do wonder whether there is any future in them for TNBC. It probably is a good idea to get tested for the BRCA mutation, because there are always exceptions. I wanted to be tested and saw a genetics nurse for an interview at my hospital in Exeter, but she said that she would not be referring me because of age and lack of family history. I think we should all be tested. My maternal grandmother died of breast cancer with mets in 1955. The only treatment she had was a mastectomy. She had nine children, seven boys and two girls. Of those, three of the men have died of cancer and a fourth has been treated for prostate cancer. Of the children from those seven, there were just four girls, and I am the only one so far diagnosed with breast cancer. One of my older brothers died of disseminated adeno carcinoma, primary unknown. One of my deceased cousins had prostate cancer. That is a lot of cancer on one side of the family. I know very little about my father's side. I am not convinced about age and genetic cancer.
I was glad to know that you are managing to work at least three days a week as it will certainly help to take your mind off things.
I entirely agree with you that all emphasis should now be on finding targeted treatments for both primary and particularly secondary TNBC.
Do you think that your consultant mentioned getting tested for BRCA in view of perhaps putting you in a PARPs trial. I read that the PARP inhibitor veliparib with a chemo agent Temodar (temozolomide) had had significant responses in mets patients with BRCA mutation. Another PARP that I read was encouraging for TN metastatic patients is Iniparib.
I was most interested in what you said about the immune system and trying to find a way to beef it up to be more active against tumours. It amazes me what a tumour can get up to. I did not know about the chemical transforming growth factor beta. I do understand what you mean by a tumour being a parasite and not a commensal. Could it be that evolution has a bit of nasty streak in it? Since I am not a believer I cannot speak of a malevolent deity.
I doubt very much that you have sent any of us to sleep.
With all that we have said about the pros and cons of our different health systems, and how you think research is better in the US, do you think, when all is said and done, that breast cancer patients are getting better treatment in the US than in the UK? I get the impression that the treatments and the drugs available are much the same, although I think that drugs become available more easily in the US than here. However, are our American ladies getting any drugs for TNBC that we cannot get? I certainly think they have more mammograms, more scans and more blood tests than we do. There are pros and cons for these things.
That is all for now. Thank you for a most informative post.
Best wishes
Sylvia0 -
Home exhausted/sick after (hopefully) last treatment on Monday and happened to see this thread -wanted to comment re birth control pills.
I attended a talk given by an Oncologist, and one of things he mentioned was a research presentation he attended at a major scientific conference where there was a presentation on the differences in the cell-cycle of women on bc pills vs those not. For those on bc pills, during the "g2" point of cell division, the cell remains "open" for a longer period than those not on bc, therefore leaving it more vulnerable to invasion. He said the presenter said (paraphrasing) "folks, we have a major problem here, as there are XXXXXX million women globally on bc pills."
It was purely a scientific finding - not a moral statement etc. I was happy to see that some of you here are at least open to the idea that there is a possible link to bc pills and cancer -- yet I am shocked at how many people are so quick to dismiss any link to bc pills and cancer. I get that we want to control our fertility to fit our lifestyles, choices etc., but we need to know the truth so we can make informed choices in our lives. I am tired of women being treated as though we are too emotional or stupid to be presented with ALL the facts. One other fact I was not aware of is that synthetic hormones are not destroyed during the water treatment cycle, and thus while 100's of millions of us are on the pill and our waste enters the public water system, we are then feeding our children (theoretically from conception on as we are consuming it and the baby is surrounded by amniotic fluid) water that is full of synthetic hormones. I can only hope that maybe, ultimately, there is not a connection to bc pills and cancer, but it is ludicrous to (as so many do) blame "the hormone disrupters in plastic" or the microwave or the pesticides and sweep bc pills under the rug.
Apologies for the lack of cohesiveness in this post, I am just so tired but i think you get the point, and again, it is nice to see that some women that are intelligent enough to take emotion out of the bc pill issue and look at facts, for our, our daughters, and all womens' sake!
left out a major reason i started looking into the bc pill link and cancer - one of the first questions the onc asked me after diagnosis was how long, and starting at what age, I was on the pill.
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Hello momof2greatkids
Thank you for your post. I was sorry to learn that you are feeling exhausted and sick after your last treatment. I am not sure what your last treatment was. Was it Herceptin or are you having something else for your mets? I do hope that you will soon be feeling better and all of us on this thread send you our support.Thank you for your information about the talk that you attended on birth control pills, given by an oncologist. I am not a doctor but through reading a lot about breast cancer I started to think that breast cancer was linked to birth control pills. I became more convinced of this given that younger and younger women are being diagnosed with this awful disease. I cannot understand why so many people would dismiss it. Perhaps it is because so many people seem to think that they can swallow down pills without side effects. They are all foreign bodies to our system and the birth control pill is interfering with natural processes in a woman's body and it is the same for HRT.
I can understand that the birth control pill has been liberating for women and it may annoy them to think that it may be doing them harm. I agree with you that we need to know the truth so that we can make informed choices. Nobody has the right to impose anything on us without giving us the facts. You may be interested to read the book "What your doctor may not tell you about breast cancer".
I have read about all the synthetic hormones that are entering our water system and the harm that they are doing. We appear to be literally drowning in oestrogens, both internally and externally and excess oestrogen is said to be a great promoter of cancer.
I can understand why you started thinking about the pill and the possible links with breast cancer. It was the same with me when I was diagnosed with TNBC in June 2005. I saw a research nurse and she asked me if I would mind filling in a questionnaire. It was all about when you had your first period, had you taken birth control pills and if so for how long and when you started menopause. It is obvious that all those questions are related to hormones, especially oestrogen. I was also asked to give a blood sample for research purposes, but told I would not be given any results. I did this, but of course I do not know what was actually done with it. I think the younger you start on the pill and the longer you take it, the higher the risk of breast cancer.
I do hope you will be feeling better soon and that your children help to take your mind off all this. I hope you will post again as it is so important to share our views.
Best wishes
Sylvia.0 -
Hello everyone
I thought you might find the following websites of interest.http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771_page8.html
http://www.youtube.com/watch?v=QffAJmyALb0&feature=shareI think you will find the video interesting. It is about Dr Tuohy's vaccine, the first vaccine against breast cancer to target a specific protein found in cancer tumours but not in normal breast cells. Apparently this is said to prevent and inhibit tumours in mice and the immune system is better at preventing tumours than in treating them. The next step is to bring it to testing it on humans.
I shall leave it to you to make up your own minds about it.
You might also like to have a look at the following.
http://www.youtube.com/watch?v=HVTaJn1dMrsSylvia
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I remember reading the birth control packet years ago and it did say could increase chance of breast cancer, do they still say that on the enclosure now? I hate to admit, though, that I probably still would have taken the pill because of quality of life issues, as I was taking it for medical reasons. I still wonder why I had such bad monthly menstrual cycles, maybe I had a hormonal imbalance from the young age of 16 and maybe that also was a cause of my breast cancer. I think in the US alot of times we get treated for the symptom and not necessarily for the real problem, and that was true in my case, as the doctors could not find anything wrong with me. But, they never tested my hormone levels when I was young, and I am thinking that was my issue.
I find all of the research info that josephine and sylvia and others post to be very interesting. I think all of you are well informed and know so much more than I do! You are a great group of women!
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By saying I think it is bad luck that women get breast cancer I didn't mean that there aren't factors which might act as a catalyst to set off abnormal cell growth...and certainly it seems logical that any thing we consume which might affect hormones, might also spark bc...hence the bc pill, hrt, and of course meat we consume which might have been injected with hormones, as well as dairy products..I hadn't thought of synthetic hormones which might survive in water, and that's a very scary thought!
Sylvia, thanks for those links..unfortunately the TNBC Foundation's info on the chemotherapy sequence is a bit too late for me, as I had the more tradtional FEC followed by Taxotere sequence, and anyway I don't think I'd qualify as having 'early breast cancer'. But very interesting nonetheless, and useful for newly diagnosed women. The you tube links were also interesting and hopefully, if not for us, but for our daughters and women everywhere, preventive methods will improve... the idea of the possibility of a vaccine is really exciting. But I'm not holding my breath...am reading 'The Emperor of all Maladies, a biography of cancer by Siddhartha Mukherjee, (I really recommend it!), and the one thing that comes across is that cancer is an incredibly complicated disease, which is still not properly understood, notwithstanding that there have been amazing strides in its treatment.
Best wishes to all, especially those who are in pain, or going through a tougher than usual time..when I figure out a way to upload photos I'll put up a pretty picture of the place in Italy I visited last week to inspire us! I'm playing the waiting game myself as I'm scheduled for a bmx on 5th October. At least I'm back at work next week and will be busy for a fortnight before going in for surgery.
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jinglebell what type of chemo did you have?
r-s
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Hello everyone, posting while taking a break during work. I will try to read and catch up on everyone this weekend. I have had 4 of 33 radiation treatments so far. I'm already feeling "tight" or maybe I just notice it more. The radiation techs are nice and I have it scheduled first thing in the morning so it goes quickly because it always takes me a while to wake up in the morning. I splurged for a camisole with a "puff" because my bra was already starting to irritate the skin under my scar on the radiated side (left side.) I hope my skin holds up. I am very eager to get reconstruction as soon as I can following radiation but I know I may have to wait at least six months. 0
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Hello everyone
bak94I was very interested to know that the risk of breast cancer years ago was actually put on the package. I have no idea what happens nowadays. Perhaps someone could post to let us know. I would think the risk of breast cancer notification would put a lot of women off. I can understand your dilemma. It is a difficult decision because naturally women want to control the number of children they have. It would probably be prudent to look at the oestrogen and progesterone contents and to see if they are balanced, bearing in mind we are being told that oestrogen is the problem and progesterone the protector, but it has to be natural progesterone not synthetic.
I have read in the past that problems with periods, especially heavy ones, may be connected to an under-active thyroid gland. Hormones and an imbalance of them are said to be connected with a lot of health problems and I have also read that an under-active thyroid is a risk factor in the development of cancer, and it also means you put on weight and feel tired and lethargic. I am certain that my own over-active parathyroid gland was also somehow connected to my breast cancer. We should all be having our hormones regularly checked through blood tests.
I definitely agree with you about getting treated for the symptoms and not the underlying causes or problems, and that happens here in the UK as well. The medical system seems to be based on matching a patient's symptoms to a pill. One pill produces side effects and so you are given another pill to counteract them and so on and so on! I do not think this is the answer. I know people who must be literally rattling from their pills!
I am glad to know that our thread is helping you. Keep looking forward to the end of your chemo.
Keep posting.
Maria_Malta
I think we all understand, Maria, what you mean by bad luck. There are many factors in all of our lives that lead to cancer. I feel sure that our modern way of life is a big factor, but there is not a lot we can do about that, except to make changes in our own lifestyles where we can. I agree with you that we should avoid if we can meat and dairy products with their growth hormones. That can probably be only an individual choice, because the meat and dairy industries are big and powerful and produce these products for profit and not in the interests of the consumer. I remember in one of the articles on the internet, Secret Weapon to Fight Cancer, that certain hard cheeses were advocated. I would not eat cheese, but that is my personal choice.
I agree with you that it is frightening about all the synthetic hormones that survive in our water. These all seem to be oestrogenic. I remember reading long ago about the feminisation of our fish due to oestrogen. Fish is supposed to be good for us but I am concerned about hormones and pollution.
None of us can worry about not having had chemo drugs or a different sequence that are now being used. We had what we had and we are here to tell the tale! I had EC followed by Taxotere (docetaxel), so I wonder why I did not have FEC (F meaning fluorouracil). We can all wonder why, in the US, Taxol (paclitaxel) is used rather than Taxotere, which is used over here. I think that the the taxanes (Taxol and Taxotere) have been a good addition for us TNBCs, because they are supposed to work well for us and if all that is on offer is toxic chemotherapy, then we accept it in order to stay alive.
I was so pleased to know that you are reading the book that I mentioned I had read earlier this year. It is a powerful work. I would recommend "The Emperor of all Maladies" to everyone reading this thread.
I do understand that the process of developing cancer is long and complicated, but I do not think that necessarily means that the cure is complicated. The emphasis must now be on prevention and targeted treatment that is not as devastating as chemotherapy, radiotherapy and surgery. Chemotherapy and radiotherapy take a huge toll on the body. There is a lady at the top of my street who had breast cancer about 25 years ago. All she had was surgery and is still alive today! I do not know what kind of BC she had.
We all look forward to your pretty picture of your holiday venue in Italy. I think good visual therapy is important when going through cancer treatment. We must all remember, what they call complementary treatment and what I call treatment to take your mind off your cancer, such as aromatherapy, but also things such as music and art, or anything that gets the thought of cancer out of your head.
I hope everything will go well next week when you resume your teaching. Make sure you do not get too stressed. We shall all be thinking of you when you go for surgery for your bilateral mastectomy.
Keep posting.
christina1961
Thank you for your post, especially for doing it during your break at work. I hope you manage to catch up on all the posts at the weekend, but make sure you enjoy your weekend.
Thank you for all the information about your radiation treatment. It is so useful for others about to go through it or going through it, or for the newly diagnosed who will have to go through it.
Make sure you keep the area well moisturised and follow any advice from the radiotherapy technicians. It is good to have the treatment first thing in the morning as it gets it out of the way.
Here in the UK when you are mapped out you are given a smock that you keep throughout your treatment and that you can wash as needed. You are also given a tube of moisturising cream. The procedure is you turn up at the hospital for your appointment, are called in and directed to a changing room, where you take off your top clothing and put on the smock. You are then called in and are positioned on the radiotherapy machine and the top part of the smock undone. The room is darkened, the technicians leave the room and switch on the machine, which positions itself over you. The treatment is all over very quickly. I have put this information in so that the newly diagnosed know what to expect. I also wore a "softie" in my bra for a long time and in the UK you can have a supply of these on the NHS. It was quite a time before I got flaps and adapted my bra and started to use a prosthesis. You need to be well recovered from chemotherapy, and especially the possible soreness of radiotherapy before wearing a prosthesis.
Very soon we should discuss reconstruction on this thread, as it is something we have not mentioned much. I did not want it, but I can understand that a lot of you younger women will.
Keep posting.
R-S (Roxann)
Thank you for your post and on behalf of everyone on this thread I would like to welcome you and let you know that we shall all support you in any way that we can.
Jinglebell, if you are still viewing this thread it would be lovely to hear from you and for you to support Roxann and answer her questions.
We all hope that you are recovering well from mastectomy and want to reassure you that you will be alright doing the chemotherapy. The treatment you are having is standard treatment here in the UK and is much the same in the US. AC is four cycles of Adriamycin (doxorubicin) and cyclophosphamide and Taxotere is docetaxel. Do you know how long all your chemotherapy will last and whether you are having the treatment every three weeks or more frequently? Often with ACT after four cycles of AC you often get three or four cycles of a taxane (this can be the Taxotere (docetaxel) that you are having or Taxol (paclitaxel).
There are different combinations of chemotherapy drugs and the oncologist will choose what he/she thinks is best for the patient.
Since you have been diagnosed quite recently, please let us know if we can help in any way.
Keep posting.
I have been wondering how suze35 and gillyone are getting along. You are part of our loyal American posters on this thread and I always think of you as part of the group of five. We would love to hear from you and know that all is well.
To everyone on the thread, keep well and enjoy the weekend.
Best wishes
Sylvia.0 -
Hello again everyone
I just wanted to add another piece of information about radiotherapy. I was told not to use Dove soap during radiotherapy because a metal in it. Here in the UK I was told to use Simple soap.
Sylvia
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Hello all, a friend just suggested I should take Arnica tablets to help the healing process after surgery.. I looked Arnica up and in cream/ointment form it appears to be very useful to help one's skin heal, but I then read that it should only be taken internally with extreme care. Anyone know anything about this?If it is so good for healing it might help those of you who are having radiotherapy now.
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Hello mcrimmon324, BernieEllen and Maria_Malta
I have just been reading the TNS thread to keep up with everything and was sorry to read that all three of you are not feeling up to par.Mcrimmon324, I hope you will soon be feeling much better, that the infection will clear up and that you will be ready for your last chemotherapy on Thursday September 22nd. We shall all be thinking of you. I think we all have ups and downs during chemotherapy and I am sure that sometimes we feel we cannot go on, but we do. The most important thing for you is to get plenty of rest and drink plenty of fluids. Ginger is the best thing you can take for any kind of sickness, nausea, and even feeling below par. I have been feeling tired this week and have been having mugs of ginger and lemon tea, using two teabags per mug. If you can add a slice of lemon and a little chopped fresh ginger it is even better. Ginger capsules also work wonders. Peppermint tea is also very invigorating. I believe it is quite common to have to go on antibiotics during chemotherapy treatment. It will probably seem a long time between now and next Thursday, but just concentrate on how you will feel next weekend when chemotherapy is behind you.
Are you having to work during treatment?
BernieEllen, I was sorry to read that you are feeling below par. You probably need to concentrate on resting before you start your radiotherapy. I do not know how all you women are managing to work and do chemotherapy. It must be very hard. I do not think I could have done it. Somebody I know diagnosed with hormonal BC last August and was told she would have a lumpectomy and radiotherapy was immediately put on sick leave until after December of that year. Chemotherapy is by far the worst part of the treatment and I would think, ideally, from the fatigue point of view, it would be better to be on sick leave if possible.
I hope all goes well with the radiotherapy marking today.
Maria_Malta, I hope that the heaviness in your legs will soon disappear. As for this neuropathy, I have been told that there is no cure. The tightness and stiffness in the soles of my feet really bothers me sometimes, but I continue to bathe my feet in salt water, use Scholls granules to keep them soft and moisturise very often with Atrixo regenerating treatment with panthenol. It is really for rough chapped hands but it is the best thing I have found for my feet. I also use a tube of E45 cream.
To everyone else, another good tip for radiotherapy is to wash with aqueous cream. You can big tubs of this in Boots and is very gentle on the skin. I also remember being told not to use any talcum powder when going through radiotherapy. I do not use it but some of you may do. I think again it is because of the metal factor. I think talcum powder contains aluminium. I also used aloevera gel during radiotherapy but you should always ask advice from your medical team.
As for arnica cream, which you mentioned, I have used it and found it is really effective for bruising. My breast was really bruised after a mammogram on diagnosis and arnica is what I used.
TEK2009 and karen3. I do hope all is well with you.
Best wishes
Sylvia0 -
Hey Slyvia, Thanks for thinking of me, just got back from my chest xray. Honestly other than the fever I don't feel bad or have any other symptoms. I just want to be ok for my final round. I have been resting all week, at least my dogs love having me home. They are both on the bed with me sound asleep.
Yes, I have been working thru treatment. I don't work the same hours at all but try to get a least one full week in during my "good" week, unfortunately that was this week and I only worked on Monday. It hasn't been too bad, my boss and the guys I work with have been extremely good to me and I pretty much can adjust my schedule to whatever I need. I know that I am beyond lucky to have that type of work atmosphere and truly appreiciate it. I hope everyone starts feeling better soon.
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Hello everyone
I just thought I would post the rest of snippets of information that I have obtained mainly from the rest of my reading of the book "Why Millions Survive Cancer".In the future, the greatest reductions in mortality associated with cancer will come from preventing the disease, rather than treating it after it has been detected.
The good news about cancer is that new knowledge of the disease is being translated into new targeted drugs and away from chemotherapy drugs, which attack healthy rapidly growing cells, such as hair follicles and cells of the intestines and blood, causing loss of hair, ulcers and anaemia. New targeted drugs will have fewer side effects, but they will have side effects.
The reason why cancer is such a difficult and lethal disease is because of the possibility of metastases. Ninety percent of cancer deaths apparently are due to metastases. There is hope of new drugs that will target metastases. The ability to identify those patients at risk of metastases when they are diagnosed will help to deliver the best treatment.
There are simple everyday things that we can all do to lower our risk of developing cancer. We can give up smoking if we smoke, as there are about 82 carcinogens in cigarette smoke. We can all stop drinking alcohol or at least cut down, as alcohol is recognised as a carcinogen. We all know by now that we should eat plenty of fruits and vegetables, organic if possible, and have a rainbow array of colours on our plate. We should all be as physically active as we can. Vitamin D is important, but we should avoid too much sun. We should all try to maintain a healthy weight.
Mass screening helps to detect cancer in its early stages. There are preventative vaccines for certain cancers, such as cervical cancer. The drug Avastin is a good anti-angiogenesis drug, that is it prevents the formation of blood vessels that tumours need to grow.
The use of a person's genome and their tumour genome as an information technology, promises advances in cancer treatment in the near future.
Personalised medicine will lead to better and more effective care in less time, with fewer complications and side effects, and will cost less.
I hope you will find all this useful and interesting, and I think we should all try to remain optimistic.
A further bit of news that I found in the press this past week was news about the possibility of using something in autumn crocus bulbs in the treatment of breast cancer. There have been trials on mice where this has been successful. We now need trials on humans. Let us hope that these kind of trials that show promise can be speeded up. Time is of the essence!
I do hope you are all managing to have a nice weekend and that those of you who are working while having treatment are managing to have a rest and some enjoyment with your families.
Thinking of you all.
Sylvia.0 -
Hi mccrimmon, i finally quit my job, just couldn't stand it anymore. Feeel so much better. Rally hope you are doing good.
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Hi Sylvia, your info is so helpful. I don't look anywhere else now for info. Hope you enjoyed the weekend
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Bernie, You quit your job? Is that a good thing? Congrats if it is! I'm still floundering around with this stupid infection, and freaking out that they will delay my last treatment. Only symptom I really have is a low grade fever, 99.??
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