Calling all triple negative breast cancer patients in the UK
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Hi Sylvia
I got my results and went to my orthopaedist. Thankfully everything is OK but I still have the pain in my ankles. He gave me some medicine to take but he didn't like give me much information about it. I should find out about it myself.
Sorry if some times I make some mistakes as I have learnt English mostly by myself through books and CDs.As I have said before I have never been in an English speaking country.
Lots of love
Hanieh
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Hello everyone
I am just popping in to post this photograph that Raymond took of sunrise in Exmouth two days ago.
It is still raining here and the wind has been howling all night. However, there are some daffodils in bloom along the highways but nothing so far in our grounds.
I am longing for spring.
Yesterday I watched the next episode of War and Peace by Leo Tolstoy. The acting is marvellous. I also watched Walking the Himalayas which has beautiful scenery. So far the man walking has walked about 1500 kilometres and has gone from Afghanistan and has now reached Nepal. He has been in some very dangerous situations. Are any of you watching these programmes?
Wishing you all well.
Sylvia xxxx
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Sylvia What a beautiful picture! You are really lucky to have so much rain and thus no pollution. Here in Tehran all primary schools are closed for two days because of air pollution. We long for some rain and snow. Please send us some
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Hello Hanieh,
It was nice to hear from you and to know that you enjoyed the photograph.
I would be more than happy to send you some rain if I could. I just do not know where all this rain is coming from. We could have done with some rain during the summer when the grass was turning brown. It is quite cold as well, so if we have any snow I shall be sure to let you know.
I do not envy you your pollution. I know that it is so bad for one's health. We do have pollution here, especially in the big cities. We also have lots of people suffering from allergies, especially here in Devon. I can understand primary schools closing in Tehran as children are very vulnerable. I know that people are getting very sick in China from all the pollution.
The news is today that the UK is being hit by its first wave of snow. The powers that be can never cope with it, so it will probably be chaos when it hits. It does not often snow in Exmouth but we have experienced it a few times. I cannot send you snow or rain but here is a snowy picture.
As a child in London I do remember the pea-souper fogs that we used to have before the clean air act was brought in. it was no picnic.
I have been reading a book about Shakespeare and his plays that have brought back happy memories of studying them at school and university. I think my favourite play is King Lear. I have also been reading about the evolution of the English language from old English to middle English and the beginning of modern English in Shakespeare's time. It was some good revision for me, especially the influence of other languages, especially Germanic, Latin and French over the centuries.
I have found it therapeutic to take up my old interests again.
Keep happy and do what is beneficial to you.
Love
Sylvia xxxx
PS. You might appreciate this joke. It is so English and so typical of this country.
Raindrops
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Sylvia you can't believe how refreshing it is for me to see these pictures. We have had some rain in the past few months but whenever it gets sunny the pollution is back.
Regarding what you said about Shakespeare, I should say I enjoyed reading all his tragedies and some of his comedies. King Lear and the story of his three daughters were amazing. I remember we had a professor at university who used to read Shakespeare songs with pure English accent. I loved listening to him as he was the only one who read masterpieces of English literature with their own English accent. I also loved John Keats and all his odes.
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Hello Hanieh,
Thank you for your post.
I was really glad to know that you have read and enjoyed some of Shakespeare's plays. I particularly like the tragedies such as King Lear, Othello, Hamlet and Macbeth. They are all full of everything about humankind, all its strengths and weakenesses. So many of them have been dramatised on the television and at the cinema, but nothing can compare to seeing them on stage. I did see King Lear many years ago on stage at Stratford on Avon when I was at school.
I am not so familiar now with the poet, John Keats, but we probably had to recite his poems at school, like ode to a nightingale. I very much enjoyed the tales and poems of Edgar Alan Poe, the American poet, famous for The Raven. He was very much in the Gothic tradition and some of his tales, such as The Fall of the House of Usher are quite frightening.
Today there has been no rain and it has been dry and bright, but very cold by English standards. Raymond and I had a walk in the town.
Sending you fond thoughts.
Sylvia xxxx
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Hi Sylvia/all
Hope you are all well. Like you Sylvia we had quite a lot of snow over the weekend looks very pretty but it causes havoc trying to get to work etc. Do you get much snow in Iran Hanieh ? I'm looking forward to the summer I love the sunshine and hot weather.
I'm also watching walking the Himalayas Sylvia . I really enjoy programmes like this The young man in this programme is from a place called stone, which is only a couple of miles from where I live. I used to enjoy Michael palins travel programs years ago. I like to learn about different countries and cultures.
Wishing you all a lovely evening
Amanda xxx0 -
Hi Amanda
We have some snow in Tehran but not that much to let children enjoy playing and making snowmen. Whenever we desire some we go to some higher parts in the mountainous areas to have some fun. These days are sunny but thankfully because of some wind the weather is less polluted and the children are at school. Maybe one day we get the chance to have a trip to Canada to enjoy the snow to the fullest.
Love
Hanieh
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The sun shines in my apartment right now 9 AM.
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Hello Hanieh,
Thank you for the photograph and I must say I do like your windows.
Last night I started reading through a concise encyclopedia that I have. I do love encyclopedias and dictionaries, but with the internet encyclopedias are now hard to find in bookshops. I was looking at the map of Iran and was interested in exactly Tehran is situated. I saw the Elburz mountains and was reading how they are the fertile, densely populated lowlands around the Caspian sea, with a mild climate and abundant rainfall. I remember your telling us that you went to the mountains and I wondered whether this is where you went. I saw that there are also mountains to the west, known as the Zagros mountains. I think it is so educational to learn these things. Because you are in Tehran, I was interested to read that you get only about thirty days of rain a year and that the annual temperature range is of more than 25C (45F).
I am posting a photograph of a part of our grounds, for which I did most of the landscaping. Raymond took it earlier this week, so you can see it is still quite colourful in January.
I am hoping to post some details about making sure our gut is healthy. I hope to find some time soon. I think the secret again is just to eat healthily with a variety of fruit and vegetables, to try to help a variety of chronic illnesses, including cancer.
It is very sunny here today but very cold.
Wishing you well.
Sylvia xxxx
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Hello Amanda,
It was nice to hear from you and I shall answer in more detail later today. If I remember rightly you were asking in one of your posts about pro-biotics. you might like to look at Chris Woollams latest email and the heading 1. Give yourself a HUG for New Year and then the more detailed heading Heal Ur Gut in three simple steps.
Talk to you later.
Sylvia xxxx
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Hello Amanda,
We have not actually had any snow in Exmouth. I sent a picture of a snowy scene to Hanieh but it was nothing to do with Exmouth. We have known snow since we came to live in Exmouth, but it is the exception rather than the rule. It is very cold here today, so it could be one of those years when we get some snow.
Are you in northern England or in the Midlands?
I was interested to know that you were watching Walking the Himalayas. I do admire the man and his friend and they have sometimes been in dangerous situations. They were in an accident when their taxi went down a ravine. People from the nearby village came to rescue them and the Englishman had to be flown back to England to have surgery on a very badly broken arm. There have been scenes of outstanding beauty and it is so awful that mankind is such a warring creature and will probably destroy the planet.
I am not sure where Stone is.
I also used to enjoy Michael Palin and his travel programmes, not to mention Billy Connelly when he travelled across the US and also to Northern Canada.
Did you investigate pro-biotics any further? I found all the information about rebuilding your gut bacteria – your microbiome – most interesting. The detailed information was very useful. It was all about how researchers in the USA and Europe have shown that taking drugs, especially antibiotics, damage the microbiome. Usually it is the 'commensal' bacteria that is destroyed and these are the good guys. It is apparently the pathogens which are more hardy that survive. Because of this there is a complete imbalance – a new microbiome – in which the pathogens flourish and can make toxic chemicals, some of which are carcinogenic.
This leads to a second problem with too many yeasts flourishing in the absence of a strong presence of commensal bacteria. Without these commensal bacteria yeasts flourish and make holes in the gut wall and allow in chemicals and yeasts to enter the blood stream. The result of this is lowered blood oxygen, toxins in the blood, fatigue, bloating, cystitis, thrush, yellow toenails and worse. You can see how all of this can lead to chronic gut problems.
Chris Woollams newsletter then goes on to describe how you can rebuild your microbiome. He does this under three headings.
1. Restrict
2. Eliminate
3. Replenish
There is quite a lot of detail under these headings which I shall try to post about in more detail tomorrow.
That is about all for today.
Sending you best wishes.
Sylvia xxxx
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Hello everyone,
I am just popping in to say that today I reached 10 years and 7 months since diagnosis. The 20th of each month is very important to me and always reminds me of that date June 20th 2005 when I was first diagnosed. I did that journey without the help of a forum like this, but no one newly diagnosed and starting treatment needs to do this alone now. You can get through cancer treatment and go on to a normal life.
Best wishes.
Sylvia
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Hi Sylvia
Congratulations on your achievement to overcome this disease. Thank you so much for being here and all your inspiration and support.
What a beautiful area you live in, and good for your neighbours to have you and your husband with such a wonderful taste for landscaping. The pictures you posted remind me of our North which you called the lowland near the Caspian sea . It's one of the most beautiful and fertile lands in Iran which is a 3 to 5 hour drive from Tehran. A lot of people spend their vacations there. My father has a beautiful small villa there and whenever we get the chance we go there to rest and relax.
I was so interested to hear you searched some information about Tehran. It's located in the mountainside of Elborz and were it not the capital and thus so populated, it would be an ideal place to live in.
We have all climates in Iran from the coldest to the hottest and from the most humid to the driest. There are also a lot of natural resources that could be enough to a make a nation wealthy. Yet policy is what deprives people of what is their right to have.
Wish you and all health and happiness ,
Hanieh
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Congratulations Sylvia and thank you so much for starting this thread and sharing your knowledge . ❤️ Amanda xx
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Hello Amanda
Thank you for your kind words and appreciation of the thread. I hope we can all work together to keep it going.
I am still trying to find the time to post the rest of the information about getting the gut healthy. it is so important, as it seems to be at the root of a lot of illnesses. I should think it is very important for cancer patients and survivors.
Talk to you soon .
Sylvia
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Hell everyone,
I am posting a copy of the poster that my GP had put up on the wall outside her consulting room and which I found most interesting. What caught my eye and pleased me was the mention of food and nutrition in helping the liver. It is good that we are finally getting a mention of food and its connection to our health from orthodox doctors.
That is all for now.
Best wishes.
Sylvia
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Hi, Sylvia and all,
Picture is from Mexico, while taking the Swimming with Dolphins tour. So much fun!
For some reason I couldn't post with the picture, so this is the caption.
Talk more later, Mary
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Hello Mary,
It was nice to hear from you from Mexico and to see you on the photograph having such a lovely time. I understand that swimming with dolphins is supposed to be very therapeutic. I remember a similar photograph being posted from Jackpot (Gill) when she went swimming with the dolphins.
Wishing you all the best.
Sylvia xxxx
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Hello everyone,
As promised, I am posting more information about the importance of having a healthy gut – microbiome - for overall good health.
I was saying about the three steps to take to rebuild your healthy gut and they were under the headings Restrict, Eliminate, Replenish.
Restrict.
Take a pro-biotic containing certain lactic acid bacteria and bifidobacterium. The gut needs to have fewer pathogens and more commensal bacteria. You also need to get rid of yeasts in the gut.
Eliminate.
You need to eliminate pathogens. This is the essential step that so many people do not take, apparently.
It is stated that eating foods like sauerkraut and taking pro-biotics is not enough to kill off the pathogens, which make toxic and some carcinogenic chemicals.
It is also stated that natural herbs, like cloves, slippery elm, black walnut and pau d'arco can make an impact here.
To kill off yeasts natural compounds like caprylic acid, pau d'arco, garlic, oregano and cinnamon can be very effective.
Sweet wormwood (artemesinin) can be effective against pathogens and yeast.
Replenish.
It is stated that sauerkraut, sourdough bread and apple cider vinegar are useful in re-establishing diversity in the gut.
Eat relevant pre-biotic foods that good bacteria love, such as pectins from apples and carrots for acidophilus and inulin in onions and chicory for Bifido strains.
I found all of this a bit complicated to remember and just decided that if I eat a varied, healthy diet and stay of processed and junk foods my gut should be OK. I do not take any pro-biotic supplements and at the end of this article.
In this Cancer Active article it is stated that pro-biotic supplements are not worth the money. It is better to eat foods such as chicory, onions, whole oats, flaxseed, apples, carrots, and vegetables like cabbage and Brussels sprouts.
There is such a lot of information on the regular emails from Chris Woollams at Cancer Active that I think it is more useful for you to sign up and read all the details for yourself. You can then discuss anything you like with the group.
As cancer patients, especially if you are going through treatment, you might like to read section 3 of the latest email, entitled 'Prepare yourself well for cancer surgery' and then look into the underlined headings within this, which are:
Can Surgery Spread Cancer?
Cimetidine or Tagamet.
I thought you might be interested to know, as well, that I saw a neighbour of mine yesterday and I asked her how long it was now since she had been diagnosed with breast cancer. She told me it was now 27 years ago, so that is just amazing. At the time she was about 27 and had a lumpectomy and some radiotherapy, which was treatment by insertion of radioactive rods. She was not told what kind of breast cancer it was or the receptor status. My guess is it was probably triple negative because she was not given anything like tamoxifen. She also told me she has not taken anything herself since diagnosis. We all need to know about cases like this.
I also thought you would like to know about an article I read in yesterday's Daily Express entitled 'Space age dyes will transform cancer surgery' by Giles Sheldrick. It is all about a 'magic bullet' cancer treatment that will massively improve the effectiveness of tumour surgery and could be available in just five years.
It is about molecular imaging that fills cancerous cells with dye, making them fluorescent in ultraviolet light so surgeons can easily identify them and remove them.
It was stated that British researchers said it could change the face of cancer treatment for ever and was a very simple procedure.
There is a lot more to the article, which you may like to read on line.
http://www.express.co.uk/life-style/health/636920/Magic-bullet-cancer-treatment-tumours-remove
Another article in the same paper yesterday was entitled "Schoolgirl of 16 on the Pill died from blood clot". She died after taking the contraceptive pill for just 8 months. Have a look at this article.
http://www.express.co.uk/life-style/health/636902/Schoolgirl-16-on-Pill-died-blood-clot-inquest-told
She was taking the common contraceptive Microgynon and apparently there was a leaflet with the prescription warning that it increased the risk of developing a blood clot.
That is all for today from a sunny and much milder Exmouth.
Best wishes to all.
Sylvia
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Hello everyone,
I am directing this information mainly at those of us living in the UK. We all know that our National Health System is stretched to the limit and that we all need to play our part in being responsible as patients, if we do not want to find ourselves back in the terrible times before the NHS was introduced in 1948.
I have been reading one of the newsletters from a local surgery in my area and was concerned and shocked by the information on medicine wastage in Devon.
A report by the Department of Health estimates that unused medicines cost the NHS around £300 million every year, with an estimated £110 million worth of medicines returned to pharmacies, £90 million worth of unused prescriptions stored in homes, and £50 million worth of medicines disposed by Care Homes.
In Devon each year as much as £5,5 million is wasted on unused medicines! This same amount of money could pay for:
- 730 heart bypass operations
- 1000 hip replacements
- 2235 knee replacements
- 1070 cataract operations
Patients need to help this NHS money in Devon be used more widely.
What is going on in Devon will be going on elsewhere in the UK.
Do not stockpile medication and do not keep repeating prescriptions unless they are needed.
In the UK people over 60 do not pay for their prescriptions, but they are not "free". Others will be paying for them for you and others will be paying a full price for each item on their prescriptions. If we do not use our NHS system wisely and responsibly, it will disappear.
I was wondering whether any of you are watching "Trust me I am a doctor" by Dr M Mosley and his team. It is well worth watching and you will get answers to many health problems. You can find the programme at BBC.co.uk/trustme.
This past week I watched with interest part of the programme which was about how different proteins can be detected in the urine of someone who has heart disease before symptoms develop. I also watched with great interest the results of tests on people taking extra virgin olive oil or ordinary olive oil. Different groups were taking 20 ml of olive a day and then results were given. The upshot of that was olive oil, whether extra virgin or not, had positive effects on your health.
Part of the programme also dealt with meat and whether it was good or bad for your health. There were two guests, one pro meat and one against. I felt that the one against proved his point more, but then I am a non meat eater. The one definite verdict was that processed meat, burgers etc., were bad for your health and may cause cancer. The other verdict was that eating fish and vegetables was good for longevity.
If any of you are viewing and have been newly diagnosed with breast cancer, with triple negative receptors, or are various stages of treatment, please come and join us.
Best wishes to everyone.
Sylvia
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Hi Sylvia
I am just browsing through the posts. I like the one Raymond took of sunrise, I find it difficult to get up for sunrise although I have lots of pictures of sunsets. My body clock is set for day to start about 9:30am and end at 2am. I spent my whole school and working life being late. Even when I made an effort to be on time incredible things would happen to make me late. I remember a business meeting I had planned in Glasgow during the middle of July and the flight was delayed in London because of fog. Unbelievable!
The weather is fairly wet here although we have had a couple of beautiful days this week.
I hope everyone is well!
Michael
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Hello Michael,
It is always nice to hear from you. You have been and are such a loyal poster. I was glad to know you liked Raymond's photograph of the sunrise in Exmouth. We both like to watch sunrises and sunsets. With the sunrises here they are too often followed by cloud.
We did laugh at what you said about your body clock. It is strange how the body sets itself. I have two younger brothers who are night owls, but my body clock seems to be set for needing to go to bed at 10 pm and waking up about 6 am. I have tried to push it to 11 pm but by then I am wide awake and cannot get to sleep. Luckily Raymond is about the same.
That was interesting about the fog in July, probably due to pollution. The weather in the UK is so changeable that it is no wonder that our body clocks are all a mess.
I have a tendency to get to appointments very early and then usually have to wait around.
We have been watching some interesting programmes on the television. On Friday evening at 7:30, on Al Jazeera, Mehdi Hassan has a new programme called Up front. It started last Friday and this past Friday he was interviewing Noam Chomsky, arguably the greatest intellectual in the world. It was all about the Middle East. There will be a second part to this interview, next Friday January 29th.
On RT on Saturday at 5:30 pm I watched Redacted Tonight. It is a cynical view of the news, very profound but presented in an off the wall manner. I really loved it. At 7:30 pm it was Sputnik with George Galloway. I like this programme and this week he was interviewing Jacob Rees-Mogg (an anachronism) and someone, a Scottish Palestinian named Lord of Shute and who has an Israeli passport!!! At 9:30 pm it was Going Underground and there was an interview with John McDonnell, one of my favourite people. It was a fair interview and not the one-sided interviews you get on the BBC. There was also an interview with one of the higher ups of the RMT union.
I do like programmes that make you think.
How is everything with you these days? I do hope all is well. Have you any new information about cancer in general and triple negative breast cancer in particular?
I was surprised to read on one of the other threads that someone had mentioned about two drugs of which I had never heard, for HER2 negative. I think it might have been trials or perhaps an error. I would not have thought you needed treatment for HER2-.
Sending you fond thoughts.
Sylvia
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Hi everyone
I wonder if I could join your forum? I am not from the UK, I am from Melbourne but there is so much great information and support here that I would love to post here. I have just completed a year of treatment for TN. During that year my job was restructured while on sick leave. Basically it was a tough year as I'm sure all of those here understand. I still don't feel back to normal, maybe I never will. Joint stiffness if I sit for a period of time, fatigue especially in the afternoons. I am starting a new job in a couple of days and a little concerned about how I will go fatigue wise. I am doing everything I can to stay healthy. Exercise every day, diet and trying to reduce stress. I have a 13 year old daughter and a husband and a life I want to keep living!
Anyway thanks for listening..
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(((((( Joliel)))))) Thanks for joining, and so glad you found this amazing group of people at Breastcancer.org. Sounds like you have been through a lot, and we really hope that you maintain your energy to keep up with your job. We are routing for you!
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Hello Joliel,
Thank you for your post and on behalf of our group I would like to give you a very warm welcome and say that of course you can post here and we shall give you all the support and help that you need.
Although I started this thread over five years ago to bring the UK out of the dark ages with TNBC, women from all over the world posted here, including from Australia.
We can all understand what you have been gong through and we know how great the fatigue can be. You have successfully got through all your treatment so congratulations on having got through the big hurdles of surgery, chemotherapy and radiotherapy. Give yourself time now to let your body recover from all that trauma and toxicity. It is a slow journey back to recovery as your immune system needs to recover and grow strong again.
The younger women here of working age do find it a challenge as they go back to work and you will need to try to pace yourself.
On this thread we believe that healthy eating, the rainbow or Mediterranean diet, is key, along with gentle physical exercise, such as regular walking, and the avoidance of negative stress.
If you have any questions please do not hesitate to ask. We are all here to help and support one another.
I am sure Mary from the US, Amanda from the UK, adagio from Canada, Hanieh from Iran and Michael from Northern Ireland UK, will be popping in to welcome you. As you can see they come from all over the world.
Keep positive and tell yourself you are going to be fine.
Very fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Thank you for your warm welcome to this thread. It sounds like I have a similar approach to keeping healthy. I walk everyday, eat organic and fresh foods as much as possible, no red meat and I have been meditating regularly for the past 8 months. When I was diagnosed I thought about how I was living and decided I could definitely improve my diet and try to reduce stress. I am keen to keep up with all the latest research on tn and to focus on staying well. Can I ask you how long it took for you to recover from treatment? I guess it's quite a process. I keep expecting to bounce back. I finished chemo in June, then had a mastectomy followed by radiation. This took me up to the end of November before I was finished. I am still experiencing body aches and pains and of course fatigue.
Thank you again Sylvia, this thread is a great resource and a wonderful way to connect with others who understand. xx
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Hi Joliel
I'm so sorry that you had to join Breast cancer. org but want to welcome you here. Like you I joined this thread after all my treatments. It seems after all the treatments we have the challenge of adapting ourselves to post cancer life with all its ups and downs. We are all from different countries with different nationalities yet there is a strong bond of sisterhood between us which let us share all our hopes and fears. Here I found a strong support which I could find nowhere else.
Wish you the best
Hanieh
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Joliel - it can take a couple of years before you feel less fatigue after the chemo, surgery and radiation. That sounds like a long time, and it is, but you will find that little by little over time, you will feel better and stronger. Walking every day and eating "real food" goes a long way towards health. Occasionally I stumble and indulge in the not so healthy stuff, and I am fine with that - I figure it is what I do 80% of the time that matters. Meditation is great for reducing the stress in our lives - after chemo, I did a course on Mindfulness based Stress reduction - it was very helpful - unfortunately now I don't practice it as much as I should. Allow yourself to have a rest or a nap whenever you feel the need. I am 3 years past my diagnosis, and I feel healthy and strong now. Welcome to our group - you will learn lots simply by reading previous posts - there is a wealth of information here.
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