Calling all triple negative breast cancer patients in the UK
Comments
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Hello Gill,
It was nice to hear from you. It is very quiet here, too, and this is in great contrast to yesterday, when it was sunnier and the beach and town centre were packed. We keep well away from both. I do envy you your rain, as we really need it here. The news was not very heartening about Covid – 19 as we were told that the cases are high in the whole of Devon and Cornwall and that they are worse than when the pandemic first started. It is not surprising because no one seems to be wearing masks or doing social distancing.
I have read those links that Debra posted, and being my usual self I am very sceptical about the immunotherapy vaccination. I always question the motivation, especially when profit making is involved. Like you, I do not believe that TNBC is difficult to treat and I think that hormonal breast cancer, especially triple positive, is far worse. When I was diagnosed I remember that women with hormonal breast cancer were being put on tamoxifen or aromatase inhibitors, such as Arimidex, were put on them for five years, but they were rapidly increased to ten. I did read sometime ago that if you stayed on these hormonal treatments long-term you could end up with TNBC. I have read some posts recently where women are getting TNBC after such treatment, or could be getting it because of this. Some of the posts were a bit vague, so it was difficult to decide because the poster was saying there was no connection with the first breast cancer. It got me wondering whether the two different ones would have to occur in the same breast.
Like you, I feel that triple negative breast cancer responds very well to the standard treatment of surgery, chemotherapy and radiotherapy.
I have been reading through all the information from Chris Woollams and Cancer Active about statins and their use in cancer treatment. I started off reading article 6. Common drug increases the risk of dementia. I think statins have become one of those all-purpose type drugs. I must admit I do not quite know what to think. That led me to read the next article entitled Lipophilic statins linked to higher risk of dementia. It was through this that I discovered there is another type of statin called Hydrophilic. To quote the article "UCLA researchers have found that older adults with mild cognitive impairment are more than twice as likely to develop Dementia over the following eight years if taking a Lipophilic when compared to those not taking a statin, or taking a Hydrophilic statin".
There is an explanation of why the Lipophilic statins might increase the risk of dementia.
You would need to read all this in more detail if you are interested.
The rest of the section is about diabetes doubles the risk of Alzheimer's.
I must admit reading all this gets you very confused as this article leads on to other articles such as Can statins really increase cancer survival?
Anyone interested in all this needs to read Chris Woollams latest email and read all the different sections indicated within it.
What interested me most of all was the last section I read entitled Is Lycopene better than statins? I have read a lot about Lycopene over the years and its anticancer effect. Cooked tomatoes are a rich source of lycopene and they are an important part of my diet. I fry them in extra virgin olive oil.
The verdict seems to be that lycopene is more effective than statins. Tomatoes are of course an essential part of the Mediterranean/Rainbow diet. This article on lycopene is worth reading. It is a powerful antioxidant.
I do agree with you that taking statins should be the exception and not the rule. If you have the inherited cholesterol problem you would probably choose to take it.
I think a good sentence to remember about breast cancer is that "Sugar feeds primary cancer, fat spreads the cancer".
With reference to online grocery shopping, I do not know where we are going. Boris just gets on my nerves. He seems to love hi-viz jackets, so perhaps he should take some training and become an HGV driver. On second thoughts, perhaps not, he would only cause mayhem on the roads! I think we need a referendum on Brexit again. This so-called freedom is not working. The problems have not been solved, just added to. Immigration is not being controlled and we have what I dreaded most and that is a Tory Fiefdom.
That is about all for today. I am wondering what has happened HelenLouise and Kath, not to mention Mary and adagio.
Love.
Sylvia xxxx
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Hello Sylvia,
I'm going to have to find the time to read more about lipophilic statins as I took Simvastatin from my very early fifties until aged about sixty when I was moved to Atorvastatin. The Risk of dementia from both is worryingly high it seems. Hydrophilic statins appear to be safer(?) I have been suffering from what I assumed was 'chemo brain' for over two years. Now I'm begining to wonder if that's what it is. Dementia concerns me far more than cancer, it's probably my greatest fear. I have to do some serious research. Thank you for giving me (and anyone else reading) this important information. Many of us will want to find out more. I've always been a big fan of tomatoes and was able to resume eating them about 9 months after C Difficile had disappeared. I know that all red fruits contain at least some lycopene and always ate a wide variety before colitis. Lycopene didn't help my high cholesterol, only statins worked.
I wish that a Conservative politician would use his/her voice to ask for an honest debate on the results of our leaving the EU. The public was lied to and another referendum is needed, but who will put their head above the parapet? How long will this charade go on for before someone challenges Johnson? We no longer have sufficient drivers to ensure our supply of food and other necessities. Johnson is responsible, so where is he? Parliament should never have been granted such a long recess during a pandemic, along with the horror unfolding in Afghanistan, and very real concerns about shortages, including shortages of medical supplies.
It's very sad that both Devon and Cornwall have been subjected to a rise in Covid infections. Inevitable, but unnecessary. Couldn't holidaymakers have used their sense? I wonder how many were fully vaccinated? Those who chose not to be vaccinated stand a very high chance of falling victim to Covid. Some will need hospital treatment. Cancer (and other) surgery waiting lists will grow and people will die. Do we really have to keep going round in circles?
Feels like Autumn here today. I doubt if we'll have a last minute Summer.
Best wishes to Raymond. Keep well both of you.
Love,
Gill xxx
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happy first day of spring to you all! I do hope you are doing ok, staying well and keeping safe. I can see there has been lots of discussion since I last visited. Love seeing the odd pic too.
As kath will have advised and you may have seen in the news, parts of Australia have trouble with the Delta strain. Now the push is on to get to 70% vaccination so we can move on from perpetual lockdowns. All of our family are double vaxed aside from some of the young one who are waiting for Pfizer. That has been redirected to areas of greatest need.
We can’t complain in our location. Some have been in lockdown for over 200 days. Some businesses closed for more than 20 weeks. Not to mention people who are ill with COVID or have lost loved ones.
I am thankful to have my work and the garden is about to pop! Today was a lovely sunny day. Warm enough to have the windows and doors open. I been tilling the veggie garden and getting it ready to plant. So pleased to be say bye to winter. Whereas most of you would be starting to feel cool coming.
Best wishes to you all
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Hello helenlouise,
This has been the year that Summer forgot. We went straight from a cool overcast Spring to almost Autumnal weather. Long days, warm sunshine and cloudless blue skies just didn't happen - or when they did, they're were so fleeting that I can't remember them now. I envy you your 'Spring' and all those warm days you have ahead to watch the garden grow. Some of my plants didn't bother growing at all this year and those that did didn't put much effort into flowering.
I've tried to keep myself up to date about the Covid situation in Australia. According to scientists here, a 70% vaccination rate is too low with the Delta variant, apparently a 90% uptake is closer to what is needed. In England 88% of the population has had one dose of the vaccine and 78% have had their second dose, Scotland and Wales are higher. We do have an anti vaccine lobby here, but it's small compared to America and Australia. Covid has meant that hospital waiting lists for cancer diagnosis, surgery, and treatment have grown to the extent that for some cancer patients, opportunities for life-saving procedures have been missed.
Enjoy all the sunshine coming your way.
Gill X
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Hello Gill,
Thank you for your latest post. I do hope you manage to find time to read up about the statins. They seem to be quite a menace. I doubt if doctors are talking about hydrophilic statins to any patients. In my BMA Drug book I looked up, out of interest, rosuvastatin, because the husband of my nurse friend in Essex told me, not long ago, that he had had to stop taking atorvastatin because of side effects, and that his GP had put him on rosuvastatin. All the GP had said was that rosuvastatin was more expensive and that was why it was not widely prescribed, the preference being for the cheaper atorvastatin. I doubt very much that there was any explanation of the difference between lipophilic and hydrophilic. In my drug book it says that rosuvastatin is more potent than other statins and so can achieve lower cholesterol levels than the other statins. It further says that it is prescribed to people who have not responded to other forms of therapy, such as a special diet, or less potent stains, and are at risk of developing, or have existing coronary artery disease or stroke. Apparently rosuvastatin works by inhibiting an enzyme involved in the manufacture of cholesterol in the liver. It also says that rosuvastatin has milder side effects and wear of in time. It still says aches or pains or muscle weakness should be reported to your doctor immediately.
It is my own personal opinion that most cholesterol in the body is made naturally within the body and I do not think it is natural to block it. My information is that diet plays a minimal role in the amount of cholesterol in the body. The brain needs cholesterol, especially as you get older, and lack of it seems to put you at risk of dementia. In addition, since statins cause diabetes, and diabetes makes you more vulnerable to dementia, I would not want to take them. As you say, dementia/Alzheimer's disease is far worse than anything else. I have read that Alzheimer's is also being referred to as advanced diabetes. It is all food for serious thought.
Raymond and I are great fans of tomatoes and we eat fried ones (extra virgin olive oil) as well as raw ones very regularly.
By the way, I forgot to say that in my medical book it does say that rosuvastatin is used in the treatment of hypercholesterolaemia (high blood cholesterol levels) because it is more potent.
You will have no doubt have heard on the news that there is a new drug that will be coming available on the NHS. I need to look up the name but it is a drug that will be given through injections twice a year. How many injections can one body take? Apparently these new injectable drugs are known as PCSK9 and are a new type of medicine for lowering cholesterol in the blood. You might want to look these up online or ask your daughter about them. From what I have gleaned, they are called Evolocumab and Alirocumab. They sound very much like the endings of immunotherapy drugs.
I do agree with you that we do need an honest debate on the results of our leaving the EU. We were fed all types of hype but not given proper serious information. It was all very typical of Boris the showman. How we were misled! Immigration which was a major factor in the debate, especially control of it, has not happened. In fact it is worse and with people coming from further afield. It has resulted in a shortage of essential workers and Boris goes on about creating our own HGV divers by training people up. How long is this going to take or will Boris promise to produce them out of that magic hat of his, along with all those thousands of nurses and doctors. All I know is that in Exmouth there are apparently notices everywhere advertising for staff.
I am still taking in the Covid cases and deaths on a daily basis. It is certainly not getting any better. As you say, the surgery waiting lists for cancer treatment will grow and people will die. I was listening to the Radio 4 programmes this morning and heard that the NHS needs £10 billion now to help start getting the waiting lists down. The government keeps boasting about how much it is giving to the NHS but it never admits to all the cuts that it has made in every Tory government to the NHS, not to mention education and state housing. As you say, we just go round in circles.
It feels like Autumn here today as well. The schools will be going back next week and the government is still messing around trying to decide whether to vaccinate or not the 12 to 15 year-olds.
I am still working through various lists, but they never seem to end.
Take care and thank you for your dedication to our thread.
Love.
Sylvia xxxx
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Hello Helenlouise,
It is always good to hear from you. I hope you have an enjoyable Spring. Please post any photographs that you want as I agree that it is nice to have photographs on the thread. I have not posted any photographs of our grounds this year as I do not seem to have had the time. There is always so much to do.
I do hope you will be able to catch up with all the posts as it would be interesting to hear your own comments on some of them.
It seems that the Delta strain of the coronavirus is everywhere and that there is no escape. There was mention of yet another variant, Lambda, but that seems to have been forgotten. I prefer to call these variants by the name of the countries where they were first discovered. I do not think we shall ever achieve the herd immunity as it is being called. The Western countries have been very greedy over distribution of these vaccinations and the poorer countries have not had a look in. I think people are confused about the double vaccinations and how secure a person if with this. In the UK the whole interest of government is keeping the NHS from being overwhelmed with hospitalisation because of its inability to deal with such a situation. The NHS is underfunded and with the huge increase in population cannot possibly cope. We do get news about patients dying of different illnesses but that Covid is being put down as the cause of death. This is obviously to save face.
I am not sure what will happen in the future but think the government will be reluctant to lock-down however bad things get. Covid happening with Brexit has caused so many problems. Businesses everywhere are short of staff. Goodness only knows where we are going.
I do hope you enjoy your gardening season and that you will have a successful vegetable garden.
Here in Exmouth it does seem as though summer is over. It is dull and cool.
That is all for today. Keep well, keep safe and enjoy your Spring days.
Love and best wishes.
Sylvia xxxx
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hello Sylvia
Happy birthday! I'm afraid I'm a day late, please forgive, as one Virgo to another.
Tuesday night I put a sweet potato in the microwave oven and then went outside with the dog. When we came back the house was filled with thick smoke and the potato was a black charred lump. It was on an automatic setting so definitely malfunctioned. I got help to rid myself of the offending appliance and am still working on getting rid of the smoky smell, I was also told I should get new breaker panels for all my electric. Yesterday on your special day I was busy with that and also had to visit the periodontist. Did you do anything special?
I hope you enjoy your birthday week.
Its another long weekend for us coming up. Somewhat the symbolic end of summer, more specifically Labor Day. Which has to do with moving the USA Labor Day from May 1 to September in 1800's, for our mothers it was a completely different kind of labor!
I will be back later, have to catch up on reading
Love, Mary
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Hello Mary,
I was so thrilled to see your post and feel so happy that you were posting to wish me a happy birthday for yesterday. There is absolutely no need for forgiveness. We are one Virgo to another! It is strange how many people around me are Virgos. Tomorrow a very elderly friend of mine will be 94. she called me yesterday for my birthday and we had a long chat. She said at the end that she was so happy to be able to talk to a "normal" person. I know it is your birthday soon, so I wish you a very happy birthday, Mary. We need you with us on the thread. You have been with us for a long time.
I was so sorry to read about your incident with the microwave. That must have been quite a shock. I do hope you will get your electric problems sorted out.
It must have been quite a day yesterday with a malfunctioning microwave and a visit to the periodontist.
Mary, I have to go now, but we shall talk again tomorrow.
Enjoy your Labour Day weekend. We do not have one here called Labour Day, but we should have. Our Labour Day on May 1st was abolished. It was replaced by the Early Spring Bank Holiday and we have a Late Spring Bank Holiday at the end of May.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
A belated happy birthday. Hope the weather behaved itself and that you had an extra square of chocolate to celebrate.
Love,
Gill xxx
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Hello Sylvia,
I've never been offered Rosuvastatin, I'm quite sure that cost is considered the most important factor in what we're given. I absolutely agree that statins shouldn't be dished out as a matter of course. People need to stop relying on drugs to correct health issues that are entirely concerned with lifestyle. Obesity is a huge problem here and it's so sad to see parents buying junk food and sugar laden fizzy drinks for their already overweight children. The burden of treating obesity induced health conditions falls on our NHS and adds to the ever increasing waiting lists. Talking to a friend with bladder cancer yesterday he told me that his regular scans had been put on hold and he was offered a telephone appointment instead! My hospital referral hasn't even been acknowledged by the breast cancer department. The lump hasn't changed, but my breast surgeon doesn't know that. It's beginning to look as though doctors are being forced into a 'when in doubt, guess' policy. I'm concerned that once breast cancer patients have had their treatment, possible recurrence is being ignored.
Covid infections continue to rise in England and Scotland along with the deaths of unvaccinated people. Some are very young and otherwise fit. I dread to think what will happen next week with schools back throughout the UK. The Government are still dithering about vaccinating schoolchildren, where's the leadership? Parents need to know what's happening now, not when schools are forced to close again.
The weather here is warm and sunny and this is likely to continue for the first part of next week. We'll be travelling to the coast and getting some fresh air. We've spent so long staying indoors away from people who can't be bothered to wear masks or keep their distance that we're both feeling quite low.
Hope you finally have Exmouth to yourselves and are able to enjoy some healthy walks well away from tourists.
Take care both of you.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
I do agree that diet and lifestyle are the key to try to keep healthy.
I was listening to the news on Radio 4 at 1 pm and did not think much of what Boris Johnson had to say about funding of Adult Social Care and the NHS. It all seemed to me be jam tomorrow and slowly building up to bribery just before the next election. I have had experience with Adult Social Care with my cousin in London and quite honestly I thought it was useless. The carers that he had did not do the things he needed most. One came in during the morning for barely 30 minutes, made a cup of tea, heated up some milk for cereals and gave him his medication. The same carer sometimes, but not often, came back in the evening just to give him his pills. Most of the time the carer just phoned him and dictated the pills over the phone. What my cousin needed most was someone to help him manage his paperwork etc., keep his little flat clean and tidy, and make sure he was eating. In the end my cousin just ended them. I have been more useful to him on the phone from Devon!
I think I have Covid fatigue syndrome. What a mess it all is, and I think we shall be going back into lock-down.
I have been doing a lot of catching up with my reading of Chris Woollams. I print off a lot of his information sheets. From his last email I ended up with six separate printouts of articles dealing with statins.
I have not yet had time to read the article about radiotherapy which is of course of great interest to all of us breast cancer people. It was entitled 20 Ways to improve your radiotherapy experience and it started off with the first part entitled Be clear about what sort of radiotherapy you are having, and it then numbered the possibilities. They are as follows.
a) Stereotactic radiation.
b) Cyberknife.c) Gammaknife.
d) Ordinary radiotherapy.
I shall try to enlarge on this in the near future. It did say for d) that "You may still be offered 'ordinary' radiotherapy in some hospitals. Older machines, and not so tightly targetted. This article further said that it is crucial that you understand what form your radiation will take. There were four pages under this one article.
I had not finished reading all the sections of this email of August 24th 2021, before another one arrived, dated September 6th 2021.
I always read the email and tick off the sections that interest me most. This time I ticked off number 6, Can eating these 'nuts' spread cancer? I followed the Go to instructions and read the article Can eating peanuts spread cancer? This also led to articles about coffee. One was entitled A coffe a day keeps cancer at bay.
Number 3 was interesting, entitled The highs and lows of blood pressure, 4 pages.
Number 7 was interesting, it was all about the use of Ivermectin to treat Covid.
Whatever one may think of any of these articles, there is a lot of useful information.
I think you would be very interested in reading an article I found about epigenetics and cancer.
That is about enough information for now, as we can get overloaded.
It looks as though we are going into hot weather. I actually dread it. The grounds are very dry and we urgently need rain. It is hot here today but there is a terrific wind.
How are you and Michael getting on? I do hope you are both coping as well as you can. Life is very odd at the moment.
The thread is still very quiet, as is the forum. There is so much going on in the world and everything seems so frenzied.
Take care. Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for all the information. My Chris Woollams reading has ground to a halt and there does seem to be a lot of important articles that I should be researching. With everything else going on here I'm feeling a bit overwhelmed. The archive is taking up more and more of my time, especially as Heritage Open Days begin this Saturday. This means a lot of extra research and people can be very demanding - especially those who send in vexatious requests. We have to be so careful who we give information to and how it will be used. It's becoming more stressful, especially since Covid appeared.
It doesn't surprise me that your cousin decided to do without his carers. They no longer have time to care for people properly and don't seem to be allowed to do the things that patients need most. When I was a child, Leicester Council had a Home Help Service and provided a home help for us. She would cook and clean. This meant that I could have a warm meal at lunchtime. It was free at first, but after two or three years we were required to pay, after another few years it would be free again. I never knew what was going to happen next as no one ever thought to tell a child (albeit a child carer) what was happening. Anyway my mother and I eventually lost our hot midday meal. Home helps worked to keep people out of hospital and out of residential care. The superficial 'care' service provided now does neither.
I listened to the PM announce tax rises for Social Care and the NHS and I also listened to Prime Minister's Questions. Middle income workers and employers are to be landed with the cost. The wealthy get away once again. Our hospitals are in crisis, cancer patients are dying because waiting lists are through the roof, but major international companies who trade throughout the UK manage to avoid paying taxes to the country that is a major source of their income. Our taxpayers are funding their luxury lifestyle.
I don't know that I have much to contribute to breast cancer discussions at the moment and it seems that others are feeling the same. A friend who has recurring skin cancer on his ear has been told, after suffering profuse bleeding from his ear, that he isn't on the first priority list for surgery/tests, but on the second list and he can't be seen yet. I'm so grateful that my treatment ended two and a half years ago. It's sad for those who have been diagnosed more recently. I just can't see how the NHS can ever sort out it's waiting list. Will doctors be called upon to triage their cancer patients? Maybe by prioritising those most likely to respond best to treatment or those who are younger with families or those who are more useful members of society, less of a burden on the taxpayer....... That's a very sinister scenario I've created and I trust that our medical staff have more integrity and higher moral standards. The Government and senior hospital managers though? I used to trust that if I was ever unlucky enough to have major health issues, the NHS would be there for me, and it was. Now that trust has gone. I suppose I'm frightened for the future, both my own and that of all those stuck on the waiting list.
That's a grim comment to leave on this lovely warm Summer day, but I'm afraid that's the way I feel.
Hope it isn't too hot in Exmouth for you both and that the wind has dropped.
Love,
Gill xxx
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Hello Gill,
Thank you for your post.
I do hope that you will be able to read some of the information from Chris Woollams of Cancer Active sometime when you are not so busy. I do know how you feel. We really must learn to try to give ourselves more personal time.
What exactly is involved in the archive project for which you are busy giving up a lot of your time? I know what you mean about people being very demanding. I do hope you will be able to get some relaxing time over the weekend.
I was interested to read about what you had to say with reference to the difference between carers and home helps. This is exactly the term I used when talking to the social worker and others about what my cousin really needed. He needed someone to help with household chores, make sure he got food in and above all someone to keep his general affairs and paperwork in order and so on an so forth. I remember years ago now getting a home help for my mother. With carers today they are in and out of households that they barely have time to do anything. As you say, it is very superficial.
I also listened to the PM with his press conference and PMQs. He never answers any of the questions and just tries to be clever or tries to appear to be clever. The Speaker is absolutely useless.
I was appalled to hear on the news that the NHS is recruiting 42 bureaucrats at a salary of £275,000 each a year! It beggars belief! This is more wasted money when people on the front line are being paid peanuts.
As you say, with the new taxes it is the rich who are getting away with everything once again and the poor who are being soaked. How much longer is this government going to survive?
I think it is quite difficult now to have discussions about breast cancer. What else can be said? It seems that everything patients need to get through their treatment has been said. I do think it is important that patients, especially in the UK ask about the different sorts of radiotherapy now available and that they get the most effective and least harmful for them. They should also make sure they know the possible side effects of the different chemotherapy drugs and are able to make a choice. The same goes for surgery and they must make sure they have the least invasive, unless it is really necessary.
That it all for now. I will talk again perhaps over the weekend.
Love.
Sylvia xxxx
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Hello Gill,
I have not had any free time today and I do wonder where the day has gone. It seems to be a regular thing now that Raymond and I do not sit down to relax until about 7pm and we are up at 7 am, sometimes earlier.
It has been very overcast here today, even a bit chilly.
I do hope you have had a good Saturday.
I have just checked the active topics and saw that it only stretches to two and a half pages. That is very quiet indeed.
Boris Johnson has promised that the shelves will all be full up for Christmas!
With a shortage of 100,000 HGV drivers, I think this is pie in the sky!
Apparently he has also said that he wants to stay as Prime Minister long enough to beat Margaret Thatcher's record. If that happens there will be no UK!
I hope to have more free time tomorrow. I do hope that the NHS will get moving on treating all these waiting cancer patients but I have serious doubts.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
We've had some surprisingly good weather over a weekend when rain had been predicted. Just as well, as this Friday, Saturday and Sunday and next weekend are Heritage Open Days here. No rest for Michael and myself as Michael is doing guided tours of the Cathedral gardens and I'm baking and serving afternoon teas in support of our local hospice. I enjoy this, but tire so easily now.
We're the archivists for the entire catholic diocese. It's fascinating work as we are responsible for collecting, cataloguing and preserving the history of the Roman Catholic Church in East Anglia. We also help researchers to find relevant information and undertake quite a lot of research ourselves. We have our own office underneath the Cathedral, down a stone staircase reminiscent of Hogwarts in Harry Potter.
It would be interesting to hear from newly diagnosed patients in the UK - treatment in America seems to be far more extensive than here very regular testing and far more appointments with their breast surgeon and oncologist. A friend who lives in London and was diagnosed with TN around the same time as me has had far greater access to scans and aftercare services. I was very much left to my own devices. In too many parts of the country women are being treated and abandoned, apart from an annual mammogram and a quick check up with the breast surgeon and I'm beginning to wonder if check up appointments are still happening as I don't have one yet. Is this 'abandonment' leading to further trauma and longer term mental health problems I wonder? Breast cancer isn't just about physical wellbeing, yet this is never discussed in clinics. Perhaps other patients both here and those from other parts of the world would like to comment on their post treatment aftercare?
I read about the 42 new managers appointed by the NHS. For heaven's sake when will someone get a grip of the situation? I think we both know the answer to that!
Keep well both of you and enjoy the rest of your weekend.
Love,
Gill xxx
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Hello everyone,
I am just posting to say that today marks ten years exactly since I decided to start this thread, because I thought that breast cancer treatment and information was in the dark ages in the UK, especially with reference to breast cancer with triple negative receptors in the tumour.
I was past my own TNBC breast cancer when I started this but I had been reading and posting in Calling all TNs since 2009. When I started this thread, I was still facing surgery for an over active parathyroid gland which had been discovered after my diagnosis of triple negative breast cancer, when the oncologist was concerned about high levels of calcium in the blood, which can be a sign of cancer having spread. All scans for this had come back clear, and the oncologist decided to do a parathyroid hormone (PTH) blood test, which is the most important part of diagnosing hyperparathyroidism. I had that surgery on Remembrance Day in November 2009.
By reading on Calling all TNs I felt that much more information was being given out in the US to patients.
Looking at everything now, I am wondering just how much have advanced in breast cancer care in the UK. I would welcome any comments from patients going through breast cancer treatment, especially TNBC at the present time. I do remember, back in 2005, being told that most patients just wanted the treatment and that I was unusual in asking so many questions!
I would think that patients must know more and must be asking more questions, thanks to charities like bc.org and Cancer Active.
Our thread is not as active as it was in the beginning and as it has been for many years.
I do hope that all those patients that have gone through this thread, not only in the UK but in many different parts of the world, have gone on to live happy, healthy lives.
I am not sure where we are going now with the thread.
Best wishes to everyone.
Sylvia
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Hello everyone again,
Because I am a very busy person, I have decided to post just the headlines of the most recent topics about which I have been reading on Chris Woollams (Cancer Active) recent emails. They are as follows for September.
1. Can eating peanuts spread cancer?
2. The high and lows of blood pressure.
3. A coffee a day keeps cancer at bay.
4. Italian style cuts prostate cancer risk in half.
5. Ivermectin repeatedly linked to lower Covid levels and death.
6. Junk science? Number 128: Ivermectin does not work – really?
7. Junk science? Number 129: Research – the vaccinated are simply not protected from Covid-19.
8. What can I eat on the real Rainbow Diet?
9. Adopting a Mediterranean diet significantly reduces death rate from strokes and heart disease.
10. The Active8 programme.
11. Tai Chi and Qi Gong for cancer support.
12. Lipophillc statins linked to higher risk of dementia.
13. Lipophillc statins extend survival in cancer patients.
14. Cancer, coenzyme Q10, dementia and statins.
15. Can statins really increase cancer survival?
16. Is lycopene better than statins?
17. Beetroot consumption can lower blood pressure by five points.
18. Twenty ways to improve your radiotherapy experience.
19. How a high fat diet damages your health.
20. Twenty-five epigenetic compounds to correct cancer.
21. Top ten natural compound against cancer cells.
22. Bioactive natural compounds can correct breast cancer and even TNBC.
If any of these are of particular interest to you, you can investigate them further on the Cancer Active website.
I have found many of these articles very interesting and you just have to make up your own mind about them.
I have now gone more than sixteen years since my diagnosis with IDC, triple negative receptors. I had a large tumour and was told that the prognosis was poor and after some delay I had the standard treatment of chemotherapy, surgery and radiotherapy. I was fine throughout and sixteen years on I have minor lymphoedema in the right arm and neuropathy in the feet. Neither really bother me.
Face your diagnosis, but give yourself time to accept it. Tell yourself you will get through it and be your own advocate throughout. Always ask questions, get second opinions if you are not satisfied with what you are told, eat a healthy diet, get plenty of exercise, avoid stress and negativity, keep looking forward and take care of yourself.
Best wishes and good luck.
Sylvia
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Hello Gill,
Thank you for your latest post. I do hope you managed some kind of rest during your busy weekend.
I do agree that it would be interesting to hear from some newly diagnosed patients in the UK but I do not think it will happen on this thread or indeed this forum. I think they are all probably on Facebook etc.
I do agree that treatment in America seems more extensive but remember in the US you will not get far without insurance and sometimes I think patients are over treated. As for what is going on here, they are probably being under treated. Even back in 2005 when I think I received good treatment, it was not that extensive. I had a CT scan, a bone nuclide scan, and an ECG, both before and after treatment. I do not know whether everybody got this. Remember I had a large 6+ cms tumour and there was the question mark over my high blood calcium levels. When my treatment finished I had very basic physical check ups. They started with three months check ups alternating between the oncologist and the breast cancer surgeon. This very quickly went to every six months, again alternating between the oncologist and the breast cancer surgeon. These appointments did not last very long. Basically they were checking physically the area of the mastectomy, looking for smoothness, and looking at the line of the mastectomy scar for anything abnormal, especially rashes. They also checked under the arms for abnormal lymph nodes and around the neck. It was all very quick.
You are probably right about getting better care in London, but whether that is still the same with such a shortage of every kind of medical expert, who knows?
I forgot to say that mammograms were about every three years but I do not think I went for all of them.
I do agree that breast cancer is not just about physical well-being but oncologists and surgeons probably think that is for some other department!
I think we have to accept that this thread is not functioning like it used to so I do not know if we shall have much response to what we would like so see. It would be interesting to hear from new patients about what is going on in the UK and around the world.
As it is so quiet I think I am going to take a break and see what happens. All I can say is that, if I were a new patient, looking at this thread I would start at page 1 and read it through so much a day. Peter of Peter and Liz did this and I think that was very wise. There is so much information on these pages. Take a break, Gill, and let us see what happens.
Thanking you once again for the great effort you have put into this thread. It is most appreciated. Give Michael my very best wishes and Raymond joins in this as well to both of you.
Love and best wishes.
Sylvia xxxx
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hi Sylvia and Gill
I was looking at your list of Chris Woollams posts and thought I would comment on just those headlines, since I haven't kept up with his posts, sadly.
Eating peanuts......I think I heard years ago that peanuts were not very good for us and I have avoided them, except for spates of organic peanut butter eating. Then I discovered almond butter and switched, now I eat neither one. Sometimes it seems the days aren't long enough to eat all we are recommended to eat!
Blood pressure.......this seems variable for most people. I've heard if one is checking BP it should be taken several times a day to get an idea of what's going on. My norm is 120/70, but it varies depending where I am and what I am doing. My lowest low was 70/40, that was during the worst part of my chemo. Dehydration, the nurse said, never mind I thought I was dying.
Hurray for coffee! I drank morning coffee before cancer diagnosis and still do now. Apparently it didn't prevent BC.
Ivermectin, a hot topic right now. I have family members who are not taking Vax and are stashing Ivermectin in case they get sick. Sadly, In this country it has become political, and can't be discussed logically.
Statins and dementia. I will try to avoid these drugs as far as I can. They scare me a bit but docs think they are great because cholesterol numbers look better, often. I have family history of dementia and try to avoid anything that might make my chances worse. Since these recommendations seem to change every day this is difficult.
Is lycopene better than statins? Maybe but I dont know. My family and extended family ate LOTS of tomatoes, and 2 of my grandparents died of strokes in their 80s, they also ate every part of every animal and worked very hard. I remember my grandpa eating his pork fat sandwich happily, I didn't like meat fat even as a child. I cannot eat tomatoes in quantity anymore, maybe one in a day, and tomato sauce is ok.
I will continue this later, I hope you both are having nice rest. Greetings to Michael and Raymond.
Love, Mary
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Hello Mary,
It was good to hear from you and to have your comments. I do hope you will be able to catch up on some of Chris Woollams emails. It is really worth it. With reference to the information about peanuts, I know that in the past there has been information from various sources about aflatoxin on peanuts. I think this is some kind of mould. The Chris Woollams information is not about this and it is not about peanuts causing breast cancer. It is about some kind of process that goes on within the body and causes cancer to spread. The page on peanuts is just that, one page, so it is well worth reading. We have been eating Meridian Organic crunchy peanut butter for quite a while and really enjoyed it. It is not adulterated like some of the brands. We have now changed to Meridian crunchy almond butter and also Meridian crunchy cashew butter and fine them very tasty.
As for blood pressure, I think it changes during the day according to what a person is doing. The GPs always seem to take them three times when they are checking. According to Chris Woollams you need to take it on the bare arm, seated and both feet on the floor. Somewhere else I read that you should take it seated with your arm resting on a table. The GPs seem to be fixated on blood pressure.
As for coffee, the information was about drinking proper coffee, not instant coffee, and not decaffeinated. Apparently strong Italian coffee is the best. Raymond loves coffee, I have a cup now and again. Out of loyalty to Marias, I like to buy Colombian coffee and strength 5!
I do wonder about this product Ivermectin. It makes you realise that Donald Trump was not that far wrong when he was telling people to drink bleach!!
Raymond and I will not touch statins. I have never had one, and Raymond only had them in hospital. He stopped as soon as he got home, because he was having nasty side effects. The GP was none too happy but we have told her we own our bodies and she does not own them. As for cholesterol, the brain needs it, especially the elderly, and I think taking stains is messing with Nature and probably helping to cause dementia.
We eat lots of cooked tomatoes for the lycopene. We are pill adverse and so avoid them whenever we can.
I did have to chuckle about your grandpa and his pork fat sandwich. Raymond and I remember as children being given "dripping". It was fat from meat on bread or toast. I did not like it.
It is so good to see you back on the thread. You are part of our special group and history.
How are things going in the US? Here in the UK, especially in England, life is "nutty". So much nonsense is being spouted that often you cannot believe what you are hearing. Did you see the trio last night talking about nuclear powered submarines? Biden could not remember the name of the Australian Prime Minister, Johnson was more like a clown with his usual show-off act anf the Aussie was just brash. We had not heard of his name, so he cannot be in the news that much.
Raymond and I are not exactly having a rest but we live in hope!
Love and best wishes.
Sylvia xxxx
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Hi everyone
So sorry it's taken so long to post but as u could imagine it's been bedlam here! Delta has hit our most vulnerable and also non compliant populations. Wilcannia has been hit incredibly hard with Delta and with large numbers of people in single households who are traditionally transient. Its been a mammoth task it's to contact trace and ensure people with Covid comply with the Public Health orders. Delta is also decimating our IVDU population so u can imagine the problems that is bringing
We have all been working 12 hours shifts for 16days at a time and it's been absolutely exhausting but an incredible learning curve. Our vaccination rates are slowly increasing so by October we should be close to 80% double vaxed . The poor police have also been smashed with assisting us for people who aren't complying and have done an amazing job.
Can't see the light at the end of the tunnel yet as our numbers keep rising but hopefully at 80 % double vaxxed it wil start to slow. It's interesting to note though that people are not getting as sick as we would have imagined for such a vulnerable pop with so many comorbidities which is a plus.
I think of u all often! Stay safe and I'll write more as soon as I can take a breath and get some down time.
much loveKath
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Hi Mary,
Good to hear from you. I replied yesterday morning, a fairly lengthy comment and then lost it just before sending. So here's another shorter version.....
I knew that peanuts were a choking and allergy hazard and didn't allow my children to eat them for that reason. Peanut butter on the other hand seemed to be the ideal quick nutritious snack and we all enjoyed it. However, we were asked by the Headteacher not to make peanut butter sandwiches for school packed lunches as several children had severe nut allergies. Nut allergies seem to be common here and in America, in fact I read that peanut allergy had increased threefold in America over the last ten years. Bad news for peanut farmers. Thanks to Sylvia I did some research on the frequent consumption of peanuts and the spread of breast cancer. A report on this subject from Liverpool University is worth reading. So, that was the end of our crunchy peanut butter quick lunches. We've changed to organic almond butter, but it doesn't have the crunch or flavour of peanut butter. It's a good source of potassium and protein so we'll plough on with it.
The statins and dementia connection is worrying. I inherited my high cholesterol so I have to keep taking them. I still have chemotherapy related memory problems and I don't want to end up completely gaga.
Look after your shoulder Mary.
Take care.
Love, Gill xxx
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Hi Kath,
I've been reading only this morning about clashes between Melbourne police and anti lockdown protesters. I also read about the anti vaxxers. We have our fair share of these selfish idiots here, though vaccine take-up is high. My brother-in-law in Canberra is a vaccine conspiracy theorist and it's impossible to have a sensible conversation with him - so we don't.
I was pleased to read that your vaccination rates have gone up significantly, so most people are getting the message. Your 12 hour shifts must be exhausting, I hope you'll be able to take a rest soon, until then, good luck and remember to look after your own health before all else.
Love,
Gill xxx
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Hello Kath,
Thank you for your post. It was nice to hear from you and to find that our faithful group is gradually coming together again.
You must be exhausted from the long hours that you are having to work. It is very hard work trying to encourage people to get vaccinated. The only way to really resolve the problem is to make it compulsory, but then we shall have the courts getting involved and lots of protests about freedom and human rights.
Our government has been messing around since the beginning of the pandemic. We have not really had any true lock-downs. There were always lists of exceptions. Added to that the different parts of the UK had governments coming up with different rules and regulations.
I also think that the safety of two vaccinations was overstated. We know that two vaccinations do not stop you from contracting Covid. From the beginning it has all been about keeping people out of hospital because our underfunded and overstretched NHS cannot cope. It could not cope before the pandemic, so it was obvious it would not cope when a pandemic hit us.
There are also different stories about how effective mask wearing is. Some say it protects and others say they are useless. Raymond and I continue to wear masks in shops etc.
There are also different stories about antibodies. Some days we hear that some of those vaccinated do not produce antibodies, and other days we hear that the antibodies from vaccinations are not as good as antibodies produced by those who get Covid.
I do wonder what is going to happen with autumn and winter approaching here. This coming week they are supposed to be calling in certain groups to get the booster vaccination, but it appears the AstraZeneca vaccine will not be given. Raymond and I had the two doses of this and we both have doubts about mixing vaccines. They are also going to start doing flu vaccinations and we have no idea what strain they are vaccinating against. Do you have any clues?
We have noticed that a lot of people here are not wearing masks, especially on public transport, so we are avoiding it.
That is about all for now. Stay well, stay safe and make sure you try to rest.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
With the discussion going on about peanuts, please remember that peanuts do not belong to the nut family. They belong to the legume, pulse, pea family, and grow underground. This makes me wonder whether, if you have a nut allergy, you necessarily have a peanut allergy and vice-versa. Please remember the article in question is not saying tht peanuts causes breast cancer.
Most nuts are the seeds of a fruit. I have cracked open the stone in apricots, for example, and there you will find apricot kernels. According to something I read about nuts, the only true nuts in themselves are hazelnuts, walnuts and almonds.
I have found Meridian crunchy almond butter and Meridian crunchy cashew butter to be tasty.
That is all for today.
Love and best wishes to everyone.
Sylvia xxxx
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Hi Sylvia
In answer to your query about current events in this country, its crazy times here too. We have a President who demands everyone be vaccinated except the hundreds of thousands of people flooding over our southern border. Our leaders seem to have no plan in place to even check their identities, much less check their Covid status, its all a haphazard mess, as was our chaotic exit from Afghanistan. We have also taken in at least 100,000 Afghanis, who just jumped onto planes as they fled from Afghanistan, nobody seemed to know who they were. I hear they are now being dispersed around the country to various communities, along with the vast crowds from South America. I can only hope this goes well, as well as it can.
I have thought over the years since BC, that I have slight lymphedema in my right arm. I read a bit on the Lymphedema thread this morning and learned that "Structural injuries such as carpal tunnel, tendonitis, and rotator cuff injuries are common after BC treatment." I have all of those conditions, with the worst being the shoulder. This was the 1st place I've seen it stated so, altho I've thought it all along. I think Docs don't have much education about this, at least not the ones I've been with.
I have to say this; Donald Trump never said people should drink Bleach for Covid. He was having a press briefing and made comments about docs studying ultraviolet light treatment and disinfectants, they were hitting Covid germs with strong light and maybe bleach, and other disinfectants. The hostile media immediately ran with this, saying Trump says to drink bleach! It mattered not what he said, it would be twisted, and there would be an uproar. Obviously this is the truth as you in the UK heard it too, remember I told you to take what our big media says with a grain of salt. Try checking on a different news source maybe. Sadly, I suppose there are people misguided enough to ingest bleach.
I also live in hope of living in more optimistic times, and not dreading the news of the day. Maybe its that there is now such a flood of news, and we are left to pick out what's real. Its too much at times.
In other news, our weather has moderated. We will have nice fall weather this week, hurrah!
Greetings to Raymond, and thanks Sylvia, for keeping us going in this pea-nutty world!
Love, Mary
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hi Gill
I adopted Sylvia's method of writing post in different platform and then transferring it when finished. I am being optimistic this time and just posting here. If I refresh screen first it usually works.
I also like the almond butter but it doesn't have as much protein. Peanut butter is still very popular so Dr. Carver can rest easy.
I have a couple of friends traveling to Ireland next March, I'm welcome to go along,, so I am unsure what to do. And wondering if it will be canceled. And if it will be safe, I am not crazy about getting the booster shot. Its so draining, this pandemic.
I see that you and Michael are still slaving away in the Church basement. I hope your work is appreciated. I was coming down from Choir Sunday and saw 3 parishioners with a large drawing. Apparently our Church is getting a redo and they were seeing the offerings for a plan. I approve of their plan, but to me its not necessary, I like the old Church as it is. Maybe its a benefit of not having great vision!
First day of fall romorrow and it feels like it, a good thing.
Love, Mary
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Hello Mary,
Thank you for your recent post. It made very interesting reading. I do agree with everything you say about the way our countries are being run, or rather not being run! I have no confidence in our parliament and I think too many of them are there out of self-interest and not out of dedication and service to our country. I doubt that I shall be voting any more.
Like you, we have endless numbers of people being allowed into our country and we are just a small island. I doubt if they are being checked and we have so many just walking in illegally. I think we should have a referendum about what is happening to our country. Nobody asked us, the people, what we want. This country is unrecognisable as the one that Raymond and I were brought up in.
As for lymphoedema, I know from having belonged to the Lymphoedema Society and received their magazine, that GPs certainly do not know much about it. I have no serious consequences from my own lymphoedema and it does not bother me. I have friends who have carpal tunnel but have not had breast cancer. My friend at Barts Hospital in London is one of them. She has had surgery on both wrists. She thinks it is probably due to wear and tear and repetitive stress. My elderly aunt also has it, but is having injections for it.
I do not take much notice of what is said in any of the media. I make my own mind up about things. There has been a lot of scaremongering about Covid and I think the power of the vaccinations have been overhyped. We are now getting pushed into boosters.
I agree that all the news flooding in can wear one down. Sometimes I think the drums are beating to WW3.
That is about all for now. I am getting ready for a meeting with a Tree Officer about trying to get work done on trees in our grounds that had tree preservation orders put on them when two separate parts of Local Governments were at loggerheads about building the apartment complex in which I now live.
Take care and live in the most enjoyable way that you can. I have doubts about all this peanut butter stuff. Raymond and I have been eating it for years, but we eat only the healthy brands and not those filled up with sugar etc.
Love.
Sylvia xxxx
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Hi Mary,
Peanuts are such a good source of protein and we're both fans of peanut butter here. I suppose almond butter will have to do until some bright spark finds something wrong with that too.
Who knows if holidays anywhere will be safe next year? I do know that Ireland's vaccine take-up was very high, but whether there'll be a need for tourists to have had boosters before visiting is still an unknown. My own feeling is that the boosters should be delayed in order to ensure that developing countries have the vaccines they need. Our Prime Minister is dithering about boosters for England, so none of us know what's happening.
Michael's mother was from County Wexford in South East Ireland and Michael spent every Summer holiday there as a child. He remembers it as very green, often raining, with plenty of homemade bread and butter and cake for when the priest visited - which was usually at teatime.
The Catholic Church here aims to have Sunday worship back to normal on the first day of Advent. We'll have to see if the cooler weather brings another Covid hike, nothing's set in stone at the moment.
Enjoy the fall.
Love,
Gill xxx
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Hello everyone,
Cancer treatment in England has been a lottery for some time now. However, Nottingham University Hospitals Trust has publicly stated that due to staff shortages, cancer treatment will only be offered for those patients likely to benefit most. Chemotherapy will no longer be given in order to extend life for those diagnosed with terminal cancer, neither will it be offered for those in need of palliative care. Other Hospital Trusts need to be equally transparent. People who have paid into the NHS all their lives will be left without treatment.
As far as breast cancer is concerned, we need to consider what is meant by 'terminal'. Very many patients with a stage four diagnosis go on to live happy lives for years. A stage four diagnosis is not the end - IF patients are given access to surgery and treatments. Nottingham Hospitals Trust has stuck its head above the parapet, other Trusts need to do the same. As my GP referral to the breast clinic has been ignored, I can only assume that Norwich is in the same boat as Nottingham. I also remember Flora writing on the thread about her mother's chemotherapy being stopped when the oncology department ran out of funds. Just how widespread is this?
Covid will be blamed for all NHS ills. In reality, it's over a decade of deliberate underfunding.
Love and best wishes,
Gill xxx
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