Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk · September 2016

Hello Mary,

I was glad to know that you got through your marathon of a weekend and that everything went well.

With reference to Chris Woollams newsletter, I just found it was all getting too much. There is only so much information you can absorb. I saw the heading on the last one so I do know it was about prostate cancer. As you say, what exactly do we do with all this information?

We certainly are being diagnosed with cancer at an alarming rate and all the emphasis is on producing more and more toxic drugs, which bring the companies in a lot of money.

That is so kind of you to offer to post anything of interest in later newsletters. I and all the others on the thread will certainly appreciate it.

It must be nice to think about a slower week. It must also be relief to have some cooler weather. The past couple of nights here in the UK we have had some well needed rain. It looks as though your October will indeed go by very quickly.

Yesterday afternoon I sat down to read a French magazine, Le Nouvel Observateur, that I get from time to time. I discovered that one of the main articles was all about breast cancer and it was a most impressive article. The magazine is all in French, but I shall put bits of it into English. The title in English was "Health: The truth about breast cancer". It is all about the views on breast cancer of a toxicologist called André Cicolella, the author a book "Breast cancer. To finish with the epidemic" and he says that the authorities in developed countries completely under estimate environmental factors such as chemical substances and pollution in the explosion of this disease".

His book is published on October 3^rd by Petits Matins. He is a professor at Sciences-Po. He was the person who managed to get the chemical bisphonal A banned in babies' feeding bottles.

This professor shows a whole load of statistics that reveal that breast cancer which is the leading cancer in western women and has been for fifty years, is due, to a very large extent, to toxic substances in our environment. He further says that our health authorities do very little to combat it.

It is the highest occurring cancer in the world and that there were 465,000 deaths in 2013 and this will double between now and 2030. He says that in 1980 in France there were 21,000 women affected and now there are almost 49,000 and he further says this can only be called an epidemic. He says that statistics of this kind cannot be attributed only to better screening or ageing populations.

There is mention of how younger women are also very affected. Apparently in 2012 22% of French women suffering from breast cancer were under fifty and younger women between the age of 30 and 44 are four times more likely to die from this pathology than from a road accident and often these younger women have very aggressive cancers.

I should explain that the article takes the form of a dialogue between two journalists and André Cicolella.

You may be able to find information about this article on line.

I shall try to post some more during the week, as I discovered that there is a detailed overview of breast cancer in general in a true or false format, which I think you may find interesting.

That is all for now, Mary, except to say there was the second Labour leadership contest here during the weekend and Jeremy Corbyn won again with an overwhelming and increased majority.

As for Brexit, it is not getting solved and implemented quickly enough.

Are you going to watch the first Presidential debate tonight? The news here this evening is that both candidates are getting negative ratings and are disliked by the people.

Talk to you soon.

Love.

Sylvia xxxx

maryna8 · September 2016

Hi Sylvia,

Just wanted to reply to your last question, and I will write more later.

A news organization counted people who go to Donald Trump's rallies, which he has been holding around the country since spring. He had 26000 people in a month, versus Hilary's few hundreds of people. There are pictures all over of her almost empty rooms, and less pictures of his crowds, because the media is all in for Hilary. She has been in mysterious ill health lately, and has not appeared anywhere. She has been dodging press conferences, while Trump has them whenever they ask, wherever he is. She has a lot of big money donors, and a lot of connections from being in politics so long; she also has a long history of lying, and giving unclear answers to very clear questions. Just what people do not like about politicians!

We will see what happens!

Talk more later, Mary

kathseward · September 2016

tough day at work today! Very teary wish I could get my head into gear! Everything set me off! Having a couple of days in Melbourne tomorrow until Sunday! Hope that will help. Last dose of AC on the 7th. They may have to adjust my dosage given the 12kg weight loss. Hope everyone is wel

sylviaexmouthuk · September 2016

Hello Mary,

Thank you for your post and your input about the American Presidential election. I heard snippets on the radio this morning. It will be very interesting to see who wins this contest. I certainly do not like Hillary Clinton and I do not think she is sincere. There are too many things hanging over her head as well. On the whole, I think Donald Trump makes more sense. Despite all his wealth he seems to be a man of the people. The people probably like him because he is not a politician.

I have more or less given up on politics in this country. I think we have a dumbed down parliament and have no confidence in today's politicians. The people here have spoken clearly for Brexit and yet three months on we have no progress.

I think I am going through some kind of crisis in my head and do not feel optimistic about the fate of the world. Will ordinary people ever really get a fair deal? In this country we have four million children living in poverty. How can that be?

I shall write more later.

Love.

Sylvia xxxx

sylviaexmouthuk · September 2016

Hello Kath,

Thank you for your post. I am so sorry to read that you are having such a tough time.

Do you think that going to work at the moment may be too difficult for you? I remember you said you are a nurse and that kind of work must be very stressful. In addition to the stress, are you not exposing yourself to germs? You will have been advised to stay away from crowds and anyone with colds etc. Remember, your immune system will now have been weakened by your chemotherapy treatment.

I can understand your getting teary. It might do you a lot of good to have one good cry to get it all out of your system. After that tell yourself that on October 7^th you will have finished AC and that you have got through it. The day I was diagnosed I was very, very silent about it. The next day when I went through all the usual procedures after diagnosis, I was very teary and had a headache all day. That evening, when I got back home, I cried as I have never cried before. After that I just got on with everything as needed, although I did not start my treatment for many months later, because I wanted to go through other options, which I did, was told I needed orthodox treatment, faced up to it and then went through everything calmly. I think, with hindsight, that I was playing a very dangerous game with delaying for four months and I would not recommend it to other people, because you do not know what is going on in your body. I was taking other treatments and I feel they must have helped in some way, but I do not know whether they could have brought me into NED.

You must deal with the fact that you have lost 12kg and, if I were you, I would get the dose changed before you have your last AC on October 7^th. It is important to remember that the dose is based on your weight and height. You should get this sorted as well before you go on your weekly Taxol.

I do hope the short break in Melbourne will help to relieve your low spirits. Let us know how it goes.

We are all thinking of you and I do hope those on the thread going through chemotherapy will come on and give you loads of that TLC that you need.

Sending you fond thoughts.

Sylvia xxxx

kathseward · September 2016

thanks Slyvia

I'm sure the time away will help heaps. I work in public health so I don't have pt contact. I had a great day yesterday just a really really downer today. I referred myself to the mental health team today and will see a psychiatrist next Thursday to talk about things. I always feel better after that and slowly but surely I'm coming to terms with things. I think that will help. Living in a small town I keep get stopped by people who mean well but can't walk around a grocery store without get stopped! And that makes it tough too. Getting there slowly and as always talking to u helps so much! U are such a calming influence. I will post some pics from Melborne so everyone can have a look

Cheers Kath

sylviaexmouthuk · September 2016

Hello Mary and everyone,

I have just Googled Professor André Cicolella and there is lots of information about him. Let me know what you find and what you think. I know that a lot of it is in French, but you should be able to get Mr Google to translate it.

The last thing I read after posting about how young women are being badly affected with cancer, I also read that this professor thinks that the health authorities are not taking seriously enough what he considers to be an epidemic. He said that you have only to glimpse at the last brochure entitled "Cancers in France, edited by the National Institute of Cancer, the organisation which coordinates the struggle against cancer in France, to know that the environment as a cause is not taken seriously enough".

This brochure lists tobacco, alcohol, and working at night, but there is no mention of chemicals in our environment. These are chemicals such as phtalates, bisphenol, parabens, PCBs. These extensively used since they are found in plastics, agricultural pesticides (thus residues end up on our plates), washing powders, cosmetics, additives in our food, and electronic materials. A woman and her foetus ingest all this stuff together.

Many of these substances disturb the human hormonal system, even when they have been prohibited for years – traces of them persist especially in the soil.

The question by the journalists in this dialogue was "Has their role in the development of breast cancer been shown".

I shall continue later with the Professor's answer to them.

That is all for today.

Best wishes.

Sylvia xxxx

sylviaexmouthuk · September 2016

Hello Kath,

Thank you for your post. I do hope you have nice time in Melbourne.

I understand what you mean about living in a small place and people asking questions. They are just trying to express their concern and support. They mean well but I know it is difficult with people asking how you are all the time. People here still ask me how I am eleven years on! I always say that I am fine even when I am not. During treatment I said much the same and said the treatment was going fine.

Thinking of you.

Sylvia xxxx

sylviaexmouthuk · September 2016

Hello Mary,

I thought you might be interested to know that I Googled the article from the French magazine and found an English translation of it. I thought you might be interested in it, as well as other people on the thread. It seems a bit problematic to give a link, so I suggest you go to Google and put in the name of the professor and the title of the article in English:

Health, the truth about breast cancer in the Nouvel Observateur – a dialogue between Professor A Cicolella and two journalists.

I have looked up the English translation of this. There are some funny errors but you will get the gist of the meaning.

In the same magazine, following this article, there is another one entitled "Pill, age, heredity, right from wrong". This is the article I was talking about where a risk factor or cause is the headline title or something that lessens the risk and then is added Right or Wrong?

For example, the first title is "The birth control pill is a risk factor – Right but" and then there follows a paragraph of information. I shall try to put more on line to make it easier to understand.

It lists the following information (in English):

1. The birth control pill – true, risk factor but...

2. HRT – true, a risk factor.

3. Breast feeding – lessens risk.

4. Screening – has its limits with prevention. Problem of exposure to radiation.

5. In France, it is stated that screening participation is only 52%.

6. Screening – is considered effective in that in France they have the lowest rates of mastectomies and go easy on removing lymph nodes.

7. Not having had children – it is true this is a risk factor and having a first child over 40 is also a risk factor, but not as big a risk factor as having had no children.

8. You cannot have children after breast cancer – This is stated as False, but there seems to be a difference of opinion. It was thought by the medics that you should not have a baby, but now they seem to think it is fine to have a baby but you should wait one or two years after the end of your treatment. There is mention that chemotherapy reduces a woman's fertility and so young women might want to preserve some eggs for future use.

9. Heredity – some women do have problems with genes but they are in a minority with breast cancer risk.

I have done my best to extricate this information, but please remember I am posting about articles I have read in a reputable French magazine and that these are not posted as my own personal views. They are for interest only.

If you do not read French and go for reading the available translations in English, you will find some of the translations are a bit comical. I started corrected them orally as I was reading in both languages, but Raymond told me to remember that the translations were done by a machine!!! You do get the gist of the meaning however.

Sending best wishes to everyone.

Sylvia xxxx

maryna8 · September 2016

Hi, Sylvia,

I want to add to my political commentary this: I do believe that many people are going to vote not for either candidate, but against the other. In my view, Trump seems to have built up more enthusiasm for himself, while Hilary seems to have built up enthusiasm against Trump, but not for herself. I share your cynicism about the political process, there do not seem to be many visionary leaders, everyone seems to be out for themselves.

I started searching for Professor Cilolella, and also found all kinds of interesting, scary detours where the horrors of all kinds of environmental toxins are discussed. After reading some of these, it almost seems hopeless to be able to avoid everything harmful. I guess we can only do the best we can do. It does seem crazy that, knowing all this research exists, these manufacturers are still allowed to produce this stuff. I did also realize that at least one thing that I ingest is not good, will have to stop that. Probably are many more that are just part of daily life. And I was given HRT in my late 40's to help with menopausal symptoms, I stayed on those many years because my trusted gyno recommended them to me. Did that help cause my cancer? I don't know, because my cancer was Estrogen-. Anyway, thanks for posting this, I look forward to more from your translations.

I am sorry about the crisis in your head, that just seems normal nowadays for any of us who attempt to follow local, national and global news stories. The abnormal has become normal, and the sensational is seen everyday. Up is down, and common sense is an antiquated notion. We here in USA are also told we have chldren going to bed hungry every night, we are also told that we are all too fat, including the children. The schools have become feeding centers, breakfast, lunch and dinner are served. Some schools stayed open in the summer so children had somewhere to eat. Money is collected for "buddy packs", so that when children finally leave for the day they receive a pack containing enough food to see them through the night until the next day. Where are the parents in all this? Nobody ever seems to ask that question. It seems we are absolving parents of all responsibility. And that seems to me to be part of the big problem.

After reading back over my post, it seems pretty grim, but I guess I will post it anyway.

On the bright side, just think of all the people you have helped and are helping on this thread. Kath has picked up on your calming influence, that also meant a lot to me when I was going through all the first steps of the cancer journey and didn't know what to think. For most of us, we can only affect the world around us, we will never be on a national stage. You took a scary time in your life, and made something positive out of it by helping all of us. Thank you!

Talk to you soon, love,

Mary

rlk58 · September 2016

I want to post an update.My pet scan showed 2 small areas on the opposite rib thAf will be scanned to check it out.Hopefully an old injury.My lymph node biopsies are not back and my oncologist wants me to see a psychiatrist and deal with some depression.I feel like I am up and down.My daughter arranged for my hair to be done and we took photos with her,my son and grandchildren and I broke down at the end.It was all so sweet and I was so grateful and surrounded by love.My daughter also framed a scripture and bought me all kinds of items to make me comfortable during chemotherapy.My doctor feels that starting next week will be better as far as chemo goes

Bex1980 · September 2016

Hi

I've just come across this thread and wanted to know if anyone had heard ofpeople being treating with Xelode in the UK following neoadjuvent chemo and who didn't get a PCR?

Thanks

sylviaexmouthuk · September 2016

Hello Rhonda,

Thank you for your post and update. I was sorry to read that you are going through a time of anxiety and worry. I do hope that what is showing up on a PET scan will not be serious.

I do hope you will have good news when your lymph nodes biopsies come back. It is always a difficult and worrying time when we are waiting for results.

If I were in your situation, I would give myself more time before being referred to a psychiatrist to deal with some depression. This seems to me to be a bit hasty. You have had to deal with a diagnosis of breast cancer, so you are bound to be feeling in low spirits. If that were me I would be asking my oncologist how she thinks she herself would be feeling if she had just been diagnosed with breast cancer. You are now facing the long chemotherapy journey and that is daunting as well. Try to relax, try to be optimistic and strong, and tell yourself that, like the rest of us, you are going to get through this. Come to us, rant and rave as much as you like and get everything out in the open. If you want you could join a local breast cancer group near you. Anything that helps you to express your fears and anxiety will help. What you do not want is a load of pills turning you into a zombie.

Relaxing with your children and grandchildren will do you a lot of good. If you have good friends, keep them close to you. We have all been through this and we got through it and so will you.

Let us know the date when you start chemotherapy. You will be busy when this starts and you will find that you will soon get into a routine. Remember to drink plenty of fluids during chemotherapy, especially water, get plenty of rest and keep looking forward with determination.

Thinking of you.

Sylvia xxxx

sylviaexmouthuk · September 2016

Hello Mary,

I did enjoy reading your great analysis of what is going on between Donald Trump and Hilary Clinton.

Like you I looked up on Google about Professor Cicolella and was amazed at how much information there is about him. I tend to avoid following everything. I agree it is an impossible task to keep all of these toxins out of our lives and anyway, according to this information, we may have been doomed in the womb! As you say, we can only do our best and control what we can control to the best of our ability. We are living in an industrial age and there are pollutants everywhere. HRT seems to be particularly bad and it was dished out for years. What is done is done. The problem with all of these things seems to be getting them banned. Profit and greed comes before health. Greed is the name of the game. We have to remember with breast cancer that cells mutate, and, as my oncologist told me, my breast cancer could have started off as hormonal at some point in my body, mutated and then ended up triple negative. Some of these risk factors I was told long ago – early onset of periods, late menopause, not having children, having children at a late age and so on and so forth. Goodness only knows what we were exposed to as children. I think cancer will get worse as the generations go on.

I do agree with you about the lack of common sense. Unfortunately it is not so common!

Thank you for your kind words about the thread. You are right, we cannot set the world right but we can do our little bit in our immediate surroundings. You have made a big contribution to this thread and have great insight into many things.

Have to go.

Best wishes.

Sylvia xxxx

maryna8 · September 2016

HI, Bex980,

I don't know if you saw, but there is a group called Xeloda and TNBC. Go back to the main Forum: Triple Negative Breast Cancer and you will see it. I don't think anyone here is using Xeloda, that I know of.

Good luck to you, hope all is well.

Mary

sylviaexmouthuk · September 2016

Hello Bex1980

Thank you for your post. You are quite welcome to post on our thread. Are you are triple negative? We have had so many posts over the past six years that it would be difficult to recall if anyone had been treated with Xeloda. There are different combinations of chemotherapy drugs and it is the oncologist who decides which drugs will be most beneficial to an individual patient.

You said you had had neoadjuvant chemotherapy so I was wondering what chemotherapy drugs you had had. Chemotherapy before surgery does not necessarily bring you to a complete response. It is usually done to help shrink a large tumour a bit to make surgery easier.

What chemotherapy drugs did you have? One of the most common ones in the UK is epirubicin, cyclophosphamide, and a taxane, either paclitaxel (Taxol) or docetaxel (Taxotere). The drug Capecitabine (Xeloda) belongs to the group of chemotherapy drugs known as Antimetabolites. The other common chemotherapy drugs in this group are Fluorouracil and Methotrexate. These last two mentioned have certainly been part of regular chemotherapy regimens over the years.

You should ask your oncologist about Xeloda. Are you asking about it because you had it as part of your neoadjuvant chemotherapy or because you thought you should have had it?

It would be useful if you could give us more details.

I do hope you are doing alright with your treatment.

Best wishes.

Sylvia

Bex1980 · September 2016

Hi Mary and Sylvia

Thank you for your replies. I was diagnosed in March this year with TNBC 2.8cm tumour, 9mm tumour and a few satalite nodes in my right Breast. They also suspected lymph node involvement because of various scans. I had 3 x FEC and 3 x Docetaxal. On 1st Sept I had a mastectomy. The histology results showed they removed a 14mm tumour and 2/13 lymph nodes were involved. I am due to have 15 rads shortly. I had read that people in other countries who didn't get a PCR to chemo get offered Xeloda. Someone also said that her oncologist in Hertfordshire was starting to offer it to people who didn't get an PCR as well. I'll talk to my oncologist but I don't think he'll agree to it. He'll probably just end up saying it's only used for secondaries like he said about the carboplatin! Here is a link to the study about Xelode which is meant to improved survival rates

http://www.breastcancer.org/research-news/xeloda-i...

Thanks

Beccy

sylviaexmouthuk · September 2016

Hello Beccy,

Thank you for your post and for the extra information. I can see from this that you had standard chemotherapy treatment and that your tumour did shrink. You will ultimately have to make the decision as to what you want to do next. Most of us on the thread have had radiotherapy to finish our treatment. I was told by my oncologist that the radiotherapy was to mop up any stray cells.

I have read the information from the link that you sent and it seems to me that the added benefit from Xeloda is minimal. It is up to you whether you press for Xeloda with its very serious side effects, such as neutropenia and hand and foot syndrome, from which you may have already suffered from your previous chemotherapy. If you are in the UK, as I think you are, you cannot go by what happens in other countries. It is true that drugs such as Xeloda and carboplatin were first used for advanced breast cancer.

Nobody can really predict survival rates. Those of us who have survived for many years have survived without Xeloda or carboplatin.

If you feel you want the Xeloda and your oncologist will not agree, you will have to get second opinion from another oncologist. My own personal opinion is the less chemotherapy the better. It knocks your body for six.

It may be prudent not to do too much looking on the internet. Remember drug companies push drugs because they want to make money.

I was wondering how old you are, because this sometimes affects doctors' decisions. My oncologist told me she was giving me epirubicin rather than doxorubicin because it was less harmful on the heart.

Let us know what you decide. I do remember, as well, reading that you cannot really be told that you have a complete pathological response, because cancer cells known as stem cells, can remain hidden and not get treated and they can later reappear. All we can be told is no evidence of disease (NED).

Good luck, whatever you decide.

Sylvia xxxx

Bex1980 · September 2016

Thank you Sylvia. I turned 36 in July this year. You are a real inspiration to other women out there and I can't believe how you have posted selflessley in this thread for 6 years to help others. Although I'm keen to get as much treatment as possible I'm also keen to move on with my life and not ever have to mention the word ever again. In some ways I find these forums helpful but in other ways I want to remove myself from them altogether and never do another search on the Internet about any of this ever again (perhaps too optimistic!).

Thanks

Beccy

chatterbox2012 · September 2016

Hi all

This is a very good piece from Irish radio interviewing a couple of ladies living with advanced breast cancer.

https://player.fm/series/rt-the-ray-darcy-show/living-with-a-metastatic-breastcancer

sylviaexmouthuk · September 2016

Hello Micheal,

It was so nice to see you back on the thread and I do hope that you have had a good summer.

Thank you for the link to the radio interview. I shall be sure to listen to it either today or during the weekend. At the moment I do not seem to have enough hours in the day to get through all I need to do. I am very busy with running the complex where I live, keeping the thread up to date and of interest, keeping our own affairs in order and having some time to myself for reading and relaxation.

How do you feel about post-Brexit UK? I think it will take ages for anything to happen if anything does ever happen! As I told Mary, I seem to be going through some sort of crisis and having a clear out in my head, much like doing spring cleaning. I have left the Labour Party and so has Raymond. It is too dictatorial and does not seem to allow freedom of expression or even thought. I shall never join another party and I do not know where Labour is going.

It is a nice sunny day today and very mild for the end of September.

Sending you best wishes.

Sylvia

sylviaexmouthuk · September 2016

Hello everyone,

I am going to try to finish off the two articles that I mentioned from the French magazine Le Nouvel Observateur. You will remember that the first article was entitled The truth about cancer and it took the form of a dialogue between the toxicologist Andre Cicolella.

To recap briefly, the titles discussed in my previous posts were An epidemic of breast cancers and whether this term was too strong.

The next one was Screening and then Young women and how they are being strongly affected. After that, it was about Health authorities not taking the measure of the scourge of breast cancer and how, in a brochure entitled Cancers in France, published by the National Institute of Cancer (INCA) the organisation that fights against cancer in France, they mentioned tobacco, alcohol, working at night, being overweight but say nothing about the chemicals that are found in our environment. Such chemicals are phthalates, BPA, parabens, PCB, and these are extensively used. The article goes on about where these are found and how we can ingest them in our mother's womb.

The next question put to Professor Cicolella is Has their role in the development of breast cancer been shown? The answer from him is that breast cancer is a multi-factorial disease so we do not yet know what their importance is in the epidemic of breast cancer, but research shows a definite link between the two. He talks about the case of DDT and names a researcher and her team that proved DDT, an insecticide used a lot after WW2, is responsible for the current outbreak in the US. Apparently, women whose mothers were exposed to DDT are 3.7 times likely to have breast cancer than those who had no or little exposure. The same goes for PCBs, chemical compounds that used to be used widely in electrical equipment. It is the same for bisphonol A.

Professor Cicolella states categorically that unlike infectious diseases, breast cancer will never be cured by a vaccine. He says it requires the medical establishment etc. to change their view of the disease. Cancer is a slow poisoning that starts in the foetal stage and continues all around us. He thinks that the traditional medical question "what are you suffering from?" must be completed by another - "to what have you been exposed?".

There is a lot more in this article and mention of Belgium, which is a small country but has the highest rate of breast cancer in the world. The Himalayan country, Bhutan, has virtually no breast cancer, although it is about the same size as Belgium.

There is mention of the birth control pill and how it is carcinogenic. The irony is that it is a risk factor in breast cancer, but seems to protect against ovarian and endometrial cancers. Apparently, one of the components of the pill is (or was) chlordane, a pesticide now banned.

HRT is also classified as carcinogenic. There is mention of work where chemicals are handled as risk factors, for example hairdressers, beauticians, lab technicians, working at night, nurses and police.

Stress also could be a risk factor and people such as teachers, journalists, lawyers, managerial people all have extra risks.

Apparently prostate cancer in men follows the same lines as breast cancer in women.

The professor says that although these dangerous chemical substances are all around us, the ones with the greatest danger are about twenty and he thinks that if these could be prohibited cancer rates could well go down.

He finishes this dialogue by saying that he remains optimistic for the future because attitudes evolve all the time. He further says that our attitude to things like tobacco, alcohol and cars are not the same now as they were in the past. He thinks that with the right attitude we might be able to eradicate breast cancer or at least reduce the number of cases.

The other article translated from the French, is entitled "Pill, age, heredity right from wrong. We heard everything and its opposite on the risk factors and breast cancer prevention. Overview of what to know." I started posting about this and I am just going to check where I ended.

Back in a minute.

Best wishes.

Sylvia

sylviaexmouthuk · September 2016

Hello everyone,

I have just looked back to what I posted to Mary on September 27^th, so this is what I posted then about the second article.

=====================