Calling all triple negative breast cancer patients in the UK
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Hi, Hanieh
I guess it's hard for me to understand that it's hard for you to get books! We have access to so much here that there is just a flood of books and it's hard to decide what one wants to spend time on. I think you should read whatever you want and be able to get what you want. As an American I guess I feel I already know Hilary well enough. Her husband was President for 8 years, she was later the Secretary of State, and now she wants to be President. Her husband's presidency was followed by George Bush's presidency for 8 years, and now Bush's brother wants to be President. I just think there are more people out here that are more qualified and I don't see why we should be expected to vote for the same families over and over. And I don't plan to!
I hope you enjoy your book. Right now I am reading the Mists of Avalon. It is a retelling of the King Arthur story with,Guinevere, Lancelot, Morgaine, and Merlin. It is a bit different than any version I have read, and is pure escape. I keep it by my bed and read a little at night before sleep. Also am reading "Out of Africa" by Isak Dinesen in little bits. I have read one or two of Zola's books, and I own "Therese Raquin". I think I will reread it now that we are talking about it. I do a lot of rereading! I am a fast reader and sometimes my first reading is more of a skim. If I love a book I will reread it over and over through the years. As I have done with John Steinbeck, Edith Wharton, George R.R. Martin, J.R.R.Tolkien, Charles Dickens, Margaret George, Tolstoy and so on. As you can tell, I like fiction; also history and biographies, and cookbooks. Ever since I was a child I loved the feeling of inserting myself into a make-believe world. Maybe that's why my collection of books on illness is so small, too much reality!
Hope your trip home is pleasant, Hanieh.
Talk soon, Mary
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Hello Hanieh,
Thank you for your most interesting post. I can see from the posts that politicians do not endear themselves to us. I think the problem is that they get elected by the people and then forget about us. They forget that their sole purpose in their work is to look after the people of their country, but I think they become in awe of the circles they mix in, get above themselves, become arrogant, and think they are very important. I agree that the worst results they give us are taking the country to war and they seem to do it very quickly these days. Cameron seems to be imitating Blair. I also think that going to war is easier for them than tackling the real and important issues in their country. They, themselves, are very unlikely to be the victims of their bombs, so what do they care about innocent people? There are so many problems in the UK but we are told we must get the deficit down and so we have a policy of austerity, but it is the poorest that pay the price.
You will be back in Tehran now so I am hoping you will not be feeling too cold.
I have been going through an article I found in one of our newspapers, which is about a new way fo fighting dementia. I was interested to see the following heading "Cancer link holds key to beating cruel condition". It is about a new treatment that could offer a breakthrough in the battle against dementia, by boosting a protein that prevents breast cancer. Apparently, this protein is essential to healthy mental function, but is depleted by the onset of brain diseases, such as Alzheimer's. The article goes on to say that scientists have found that mutations to the gene that creates the protein increases the risk of breast cancer. You can probably find more information on the internet. It does say in the article that this is an interesting study, highlighting how a fault in the BRCA1 gene not only greatly increases the risk of developing breast cancer, but could increase the risk of other diseases like Alzheimer's. I find this all a bit too complicated to understand.
I do hope the new patients who posted recently will come back to us to let us know how things are. I did start a list of possible side effects from chemotherapy and I must try to finish that soon.
Thinking of you and sending best wishes from a very quiet Exmouth today.
Sylvia xxxx
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Hello Mary,
I was interested in some of the things you said to Hanieh. I agree with what you said about all the books to which you have access in the US and of course it is the same here. In fact, I find the number of books in the shops quite overwhelming and for some time have found it difficult to make a choice. I often feel that we should have a UK-wide sale, at knock-down prices to clear out the stock. With Christmas looming, it is even worse and you can hardly move in the shops for books and it is the same for almost everything. I find that I often leave bookshops now, empty handed. The last book I read was one I think every politician should read and abide by. It is entitled "From the workhouse to MP". It is the life story of Will Crooks, born into abject poverty and went from being involved in Council work in Tower Hamlets in East London, to winning a by-election and then being elected again in a General Election, but stayed all his life in Tower Hamlets and lived very modestly. He did so much to help people. It is highly readable.
I agree with what you said about politicians and their family members getting involved and running for President and the like. I should think you have had enough of the Bush dynasty and the Clintons. We have the same here with the politicians and the sons and daughters running for MPs. It is bad enough that we have a feudal hereditary monarchy and an unelected head of state, without our MPs getting in on the act. I think there are more people outside of our parliament with more common sense than those within it.
I was interested to know that you have a copy of Therese Raquin. I read it many, many years ago. It is not part of the twenty novels of the Rougon-Macquart family. All of the novels can be read independently. Some of the most well known ones are Germinal, Nana, the Dram Shop, the Human Beast.
If I remember correctly, these novels are all about heredity in what makes you what you are, and environment.
There is lots of information on line about Emile Zola.
I was interested to know about some of your favourite authors and I do remember reading Steinbeck many years ago. My favourite classical author is probably Charles Dickens in this country, but my favourite authors are Tolstoy and Dostoevsky. I remember reading Anna Karenina and War and Peace, not to mention Crime and Punishment and the Brothers Karamazov. Nowadays I find it difficult to read fiction and difficult to find a book that really catches my imagination and interest.
Can you remind me about what you were saying with the use of metformin? It seems to keep coming up in the news lately.
I went to see the podiatrist today and we were again talking about chemotherapy induced neuropathy. There is really nothing to be done about it and she said trying to treat damaged nerves is very difficult. I did buy a new cream for my feet. The brand is Gehwol Fusskraft Red. There are all different kinds but this one is a warming cream for cold feet. It does have essential oils in it. I shall let you know how I get on with it. It contains invigorating camphor, extracts of paprika and ginger, as well as essential oils of rosemary, lavender and mountain pine. It says it stimulates the circulation and imparts a pleasant feeling of warmth.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Katzie,
I am just popping in to say that I am thinking of you and hope you are feeling in better spirits. Are you doing anything nice for the weekend?
Hello 3timesthbat,
How are you feeling after the first Taxol? How was it administered?
Thinking of you both.
Fond thoughts,Sylvia xxx.
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Hi Sylvia, Mary and all
It seems we all share the love for books. I'm happy to be friends with such great people thanks to bc.
Now it's started snowing in Tehran for the first time in this year and we are happy about it.
Love you and wish you the best
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Hi, Sylvia
The article I read referring to the metformin stated that human trials are slated to start in 2016. It will be tested as to its' anti-aging properties; it is being studied to see if it will take humans to the age of 120. I read it in the telegraph uk so I am assuming maybe trials will start in the UK? Not sure. Do you remember "Inspired by Dolce" who used to post on this thread? I remember that she was taking metformin, although I think she was taking it for anti-cancer properties. Its' main use is for diabetic patients. It would be interesting to know if she has noted such an effect, although I guess she probably wouldn't know, it seems to me she is a fairly young woman. Then again, there is the story of Methuselah in the Bible, he lived to 600 years old or so and probably without Metformin. I suppose the years were shorter then?
The news is grim again with our multiple killings in the California office building, and yesterday I saw there was a multiple stabbing in London. That seemed to be a random act of terrorism, the California killing was terrorism too, but the killers knew their victims. There seems to be no end to this, and I don't see how conventional warfare will do much good. Conventional warfare goes to the offending country and lays waste, nowadays the killers are already in the homelands. Our leaders need to be out--of-the-box thinkers and it looks like what will happen in part is more and more surveillance and restrictions on the unoffending populace. I look at my darling little grand-nephews and nieces and wonder what they will have to contend with. Do we really want to live to 120?
I know what you mean about finding a good book to read. I seldom go into bookstores, they are all a good drive away from me, and they are so expensive. I do go on Amazon, and sometimes stumble onto book sales, where used books are being sold for a good cause. It seems to me that so much of the new literature that makes it to the best-seller list is just churned-out pap. Just as so many of the movies these days are remakes of old classics, and usually not as good. I am pleasantly surprised sometimes with what I run across. "The Martian" comes to mind; a book about a member of a space exploratory crew who gets stranded on Mars alone for some time. There are no aliens, it is simply a story of how he survives with the materials he has on hand; he is very ingenious. After reading it I gave it to my brother, who is an engineer. He loves taking things apart and putting them back together for repair. I thought he would pick it apart but he did not have much criticism and also enjoyed it.
And I love "Anna Karenina". In fact, I seem to have an affinity for doomed female characters. "Anna" and Flaubert's "Madame Bovary", and Wharton's Lily Bart in "House of Mirth", and Daphne du Maurier's "Rebecca", are all on my list of favorites. I am afraid I never made it through War and Peace; I did not read it in school, and only purchased it while I was going through chemo. I found it slow going, hope to get back to it one day. The book does remind me of what a friend once said to me; he said he hated Russian novels because it seemed like everyone in Russia was in them.
I hope your foot cream turns out well. My neuropathy seems to be taking new turns. Lately my heels burn, the more I walk, the worse they are. My legs still tire easily, and feel nervy. Even my backside feels numb if I sit for any length of time. I have about given up on the whole thing. I had another MRI on my lower spine which I suppose ruled out that being the cause of my leg symptoms. I don't know if I should consult any other doc or not, don't know if any good would come of it. My feet do not get cold, but my hands do; I have to be really careful of them in this weather.
We are entering the Christmas rush, that is all one hears now. I have put up some decoration, will try to do a little more for when the kids come on Christmas Eve.
Be well, we will talk soon,
Mary
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Hi ladies - just doing a quick check in. I have my daughter and her husband staying with us right now - so it is a bit busy! It amazes me how easy it has been to adjust to just my husband and myself at home - something which I enjoy very much. I do love having my adult children visit, but it does make life much more busy and I have to spend more time in the kitchen. Thankfully, I am well and I do have the energy to do the extra cooking. I continue to take my long walk daily and am working extra hard on eating less because I have gained over 10 lbs in weight which is not good for me. On the other hand I am so grateful for a healthy appetite.
I also love reading but try to steer away from heavy books - although, the one I just finished reading was about the Irish famine in the 1800's and how many Irish people sailed to New York seeking a new life in the land of plenty. Many hundreds died on board the voyage and when they arrived at New York, they had to wait for 7 weeks before they could disembark - they had no food and many were very sick. In some ways it reminds me of the Syrian refugees and makes me realize that times have not changed much really. The older I get, the more I realize how crazy a place the world is - lots of strife and unrest!
I am so grateful for a home and ample food to sustain me daily. The Christmas season is upon us here in Canada, but I am not a big fan of the consumerism of Christmas - I like to keep it simple and as relaxed as possible. I do not put up any Christmas lights or decorations until around the 15th of December.
Trust everyone has had a relaxing weekend.
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Hello Hanieh,
It is true that we are all book lovers here. I am glad you are happy to have us as friends.
I am glad you are happy to have snow. If we get any here there will be lots of moans and the authorities will not be able to cope. Whatever kind of snow it is, they will say it is the wrong kind!
Here we go with the beginning of another week. Everything is now about Christmas and it is all to do with consumerism.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for the information about metformin. I have read about using it to increase longevity but I was mixing it up with articles about metformin as an anticancer preventive. I am afraid that I am cynical enough that it is really just another way of putting as many people as possible on cheap drugs. As far as the longevity aspect is concerned, research seems to be centred on the fact that diabetic patients on metformin live longer than those who are not on it. I cannot see that has anything to do with increasing longevity in non-diabetic people. I do not think we can afford having people living to 120 and with quality of life. In the UK we seem to view old people as a nuisance and many are certainly not getting the care they need and with this government making so many cuts the situation will not improve.
I do wonder what has happened to InspiredbyDolce (Debra) as she always wrote such interesting posts and did lots of research. I do hope she is alright. Yes, she was a young woman. It would be interesting to hear from her, but as you say, she would not be able to tell whether the metformin was working or not. I have been told that metformin is not a pleasant drug to be on. I did have to laugh about what you said about Methuselah!!!
It is certainly grim news about the multiple killings in the California office building. It just proves that all this bombing is insane and useless. I think we shall now have small random attacks in the western countries that are bombing Iraq and Syria. It will be ordinary innocent people that will be the victims and not the politicians who cause all this trouble.
I have to stop for a while. I shall write more later.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am going to try to continue the post that I began this morning. I was not surprised to learn about the terrorist attack on three people at an Undergound station in East London yesterday. I was certain that once the debate and vote was over and bombing started within the hour, that there would be an attack here. I listened to a lot of the debate and found big holes in what the Prime Minister was saying and I was dismayed that 66 Labour MPs voted with the Government and thus gave him the majority he needed. We are now into indiscriminate revenge killing and I think the method will be small attacks anywhere any time. The man who carried out the attack shouted that he had done this for Syria. I see no end to this. I do wonder what the future of this country will be. I blame all that is happening on Tony Blair.
I do agree with you about books and the amount of rubbish that is on sale. I also agree with you about films and that the best ones are the old ones. I have not been to the cinema in years and have not really watched films on the television.
We seem to share a love of the great classics and the doomed female. Like you, I was very much marked by Anna Karenina, Emma Bovary, Lily Bart, Rebecca, and let us not forget Kathy Earnshaw and Jane Eyre. I read War and Peace when I was in my early twenties and I do not think I could re-read it. Mary, you amaze me, reading War and Peace during chemotherapy, that deserves a medal! I am not surprised you found it slow going. I think Dostoevsky is my all time favourite writer and Crime and Punishment and the Brothers Karamazov my favourites of his books.
I did have to laugh about what your friend said about Russian novels and that he hated them because everyone in Russia was in them!
At university it was Jean Paul Sartre and Albert Camus who influenced me the most and somehow they influenced my character. I would recommend in translation the novels Nausea by Sartre and the Outsider by Camus. They are not long books but very profound.
I have used the foot cream a couple of times and it somehow feels good when I massage it in. I think there are a lot of us suffering from neuropathy as a long term side effect from chemotherapy with the taxane drugs. I wonder what is in them that has such a devastating effect. I was talking to the podiatrist about reflexology and she said it would not help with the neuropathy but it does make your feet feel good. It somehow reminded me of what is said about acupuncture as the reflexology is supposed to line up with certain points and help soothe and cleanse the inner body. Have you tried it?
Would a chiropractor be able to help with your lower spine problems?
I was reading one of the other threads about copper and I did not know what to make of it. Have a look at the thread Copper Depletion, recently created and tell me what you think about it. All I know about copper is that it is a trace mineral in the body, but it is very important to have it. I was a bit puzzled about what I read on this thread.
That is about all for now.
Thinking of you.
Sylvia xxxx
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Hello adagio,
I am sorry I have not replied to your post today but I have been very busy. I shall make it my first priority tomorrow.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
It was nice to see you posting. I was glad to know that you are adjusting to the empty nest syndrome. I can understand how much busier you are when you have visits from your grown up children and their family.
I was also glad to know that you are feeling well and have sufficient energy to deal with extra cooking when necessary. It is good that you take a long walk daily and I am sure you will slowly be able to lose the weight you have put on. It seems that the way to do this is to go on a high protein, low carbohydrate way of eating. It does not seem that long ago that we were being told the reverse. A friend of mine lost weight and got her stomach flat by cutting out potatoes and anything processed from them, all bread, and going for gluten free products. I think that the anti-diabetic and indeed the anti-cancer diet helps keep weight off. The problem with too many carbohydrates is that it sends the blood sugar levels up because starch is converted to sugar in the body. We all know that sugar is very bad for cancer patients.
We are all glad to know, I am sure, that we have another book lover in our midst. There is nothing wrong with sticking to books that you enjoy. The one you have just finished reading about the Irish famine in the 1800's and how the Irish went to New York to start a new life, sounds very interesting. I have great admiration for the Irish and the way they have survived so many ills, despite how badly the English have treated them.
It is true that we now have the Syrian refugees who have had to flee their country. The saying goes "the more things change, the more they stay the same".
I do agree with you that the world is a crazy place, vicious and dangerous and that mankind will end up destroying the planet. In this country there is a debate going on about whether to renew Trident, the nuclear arsenal here. It will cost £170 billion and I find that immoral and think of all the useful and necessary things that could be done with that money.
We have the same manic activity about Christmas going on here. Raymond and I do not really celebrate it and will just have a quiet day.
I think you would be interested in a couple of links that I found on another thread which is all about copper and prevention of angiogenesis in breast cancer patients, especially those with triple negative receptors. The links are as follows.
http://www.ncbi.nlm.nih.gov/pubmed/24210000
I respect your knowledge and input, so please tell us what you think.
Sending you best wishes over the pond and over Canada to Vancouver.
Sylvia xxxx
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Hello Tom,
I do not know whether you are still looking, but if you are I know we would all value your opinion on this research about copper and the conclusions from a first phase trial.
I suppose you are very busy preparing for Christmas.
Best wishes.
Sylvia
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Hello everyone,
I found the following article on page 37 of yesterday's Independent. It is a regular feature entitled "Dilemmas" by Virginia Ironside. The article features a letter from a reader asking advice on a particular matter. Virginia gives her point of view and then readers give theirs. This is the letter.
"Dear Virginia, For the past 18 months I have supported my mother – a widow - through very unpleasant operations and chemotherapy. She has had to go back and forth to the hospital and has felt very rough for a lot of the time. She has braved it all with stoicism and made friends with the nurses – even giving comfort to other sufferers who have not coped nearly as well, but a month ago she was given the all clear and since then she has been in a deep depression, crying all the time. Is it a delayed reaction? I do not know what to do."
I found this letter most interesting because we have discussed aspects of how we feel after finishing treatment and suddenly all the everyday hustle and bustle comes to an end and we feel very isolated. I think all of us can identify with this and the feeling that we are left hanging. I certainly felt it after treatment and I sometimes feel it now that I have been discharged from the hospital.
If you can, have a look at the article and the detailed reply the Virginia gave. Some of the points she made was the terrible toll that exhaustion from chemotherapy takes and can last for a long time.
She mentions the toll that it takes on the mind as well as the body. I feel this is something that is not dealt with well at the hospital and that counselling or support groups like this one, can help. You can also relax the mind through various complementary therapies.
Virginia also mentions the constant anxiety about the disease returning or spreading.
I found it interesting that Virginia mentioned how during cancer treatment a patient becomes practically institutionalised within a life made up of injections, scans, blood tests and check ups. The hospital becomes like a second home.
She mentions the Maggie Centres (maggiecentres.org) where you can go for help and company. Apparently they run a course for people like this person's mum called "Where now?".
Also mentioned is the feeling of guilt that you have survived but others have died. I felt that acutely here where I live when my lovely neighbour died of breast cancer.
There are lots more details and I am sure you would be interested in the responses from two readers, one entitled "The scars are deeper than you know" and "Allow here to be in charge of herself".
The link is:
Wishing everyone a good week.
Sylvia
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Hello everyone,
I am redoing the side effects of chemotherapy which I started sometime ago, so I shall try to put them all together.
1. Bone marrow suppression.
2. A lowered resistance to infection.
3. Anaemia.
4. Bruising/bleeding.
5. Nausea/vomiting.
6. Sore mouth and mouth ulcers.
7. Hair loss.
8. Premature menopause.
9. Fatigue.
10. Diarrhoea.
11. Constipation.
12. Thrombosis and pulmonary embolus.
13. Problems with veins.
14. Damage to your heart.
15. Cystitis – cyclophosphamide can cause irritation of the bladder. This can be prevented by drinking regular fluids.
16. Damage to the nerves – the taxane drugs can cause damage to the nerves of the hands and feet and this can result in pain, tingling or numbness. Report this to your doctor.
17. Redness of the hands and feet – 5-Fluorouracil when given intravenously can cause this. The drug oral capecitabine (Xelda) can cause the palms of the hands and the soles of the feet to become red and sore.
18. Skin and nail changes – your nails can become discoloured and your skin dry and flaky. Skin can be sensitive to sunlight.
19. Red urine – epirubicin (Ellence) is red and your urine will be red for a day after each injection.
20. Dizziness/hot flush – this can happen when cyclophosphamide is injected.
21. Temporary taste changes – you can have a metallic taste in your mouth and may lose your sense of taste.
When you see all these possible side effects, it makes one wonder how we ever consent to treatment, but we do, what choice do we have and we do get through it all. A lot of these problems can be alleviated.
Telling all of you going through the long journey that is chemotherapy you will come out the other side and in time get back to a normal life.
Best wishes.
Sylvia
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Hello everyone,
I found this on another thread and I was most interested in it, because of the mention of a parathyroidectomy. When I was diagnosed with breast cancer, it was discovered that I had high blood calcium levels and it was thought I might have had spread to the bones witn my breast cancer. I was tested for high parathyroid hormone level and it turned out I had an over-active parathyroid gland. There is research that connects it with breast cancer. I was cured in 2009 after having a parathyroidectomy to remove a non-malignant adenoma on one of the glands. My breast cancer consultant surgeon and endocrinologist told me the over-active parathyroid preceded the breast cancer. I have always wondered whether it caused it. When I was much younger I had fibroids which never bothered me and I just left them alone. Having discovered this post, it brought it all back.
If you want more information about all this, go to the forum Not diagnosed with mets but concerned and go to the thread High calcium levels. You can also go to the forum Invasive ductal carcinoma (IDC) and the thread Breast cancer and parathyroid disease.
I would be interested in your views.
Sylvia
I was just reading on a uterine fibroid forum where a woman persisted in having her parathyroid investigated as a cause of her fibroids based on numerous symptoms that pointed that direction. She had a Parathyroidectomy and her fibroid went away.
She mentioned that taking more Vit D if your levels are low can be detrimental to blood calcium levels, that the low Vit D may instead be a protective mechanism to slow blood calcium. If you take more it might be pushing the wrong button.
Vitamin D3 and the P53 gene work together evidently. Also, PTH and PTHrP are implicated in mammary gland development, pregnancy, lactation, and metastasis, particularly of the bone. Tumors release parathyroid stimulating hormones/proteins, especially in metastatic patients.
Low magnesium levels will mimic parathyroid disease and affect levels in the body."
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Hi Sylvia
I see that there are a lot of posts to catchup on.
I have been sheltering from the weather although we haven't had it as bad as most parts of Ireland. The west seems particularly badly hit.
Alex did his driving test last Tuesday and ge passed. That was his first time. We arranged to go and look at cars after work on Friday but I got a call from him on Friday morning telling me that he had found a body hanging from a tree. So he was (is) pretty shook up.Tye police said that they would need a statement from him and he asked if they could do it that day while it is fresh in his mind and he didn't want to have to recall it later. They said they would finish up at the scene and be in touch. Of course he hasn't heard a thing. The police here are useless. I mentioned Keystone Kops to Alex but he didn't have a clue what I was talking about 😕
I hope that the weather in SW England hasn't been too bad.
Michael
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Hello Michael,
It was nice to hear from you and I hope you will manage to catch up on the posts and give us some input about some of the posts, especially this thing about copper.
I cannot believe the amount of rain that has been falling in Scotland and Cumbria. I feel so sorry for the people that have had to be evacuated from their homes and their homes are ruined. There has not been a lot of news about Ireland. How bad has it been?
Congratulations to Alex on passing his driving test first time.
What a shock for him to have found a body hanging from a tree. I can understand how shaken up he must be and I do hope he will be alright. I think it is quite shocking that the police did not take a statement from him straight away, but they do seem a bit lax anywhere in this country. I had to laugh about the Keystone Kops.
The weather in Devon has not been too bad and we have not had that much rain recently, but November has been dull and damp, and I have never been so fed up with the weather this early on. I am hoping that December might be sunnier but April and spring time seem centuries away!!!
I have been horrified but not surprised about the terrorist attack at Leytonstone Underground station. I was expecting something to happen after the government won the vote to join the bombing in Syria and thought something would happen quickly. I was very disappointed in Labour MPs and some of the shadow cabinet joining with the government and so allowing the vote to go through. The bombing will serve no purpose, especially our few planes and there will be more retaliation. Public opinion is now swinging against the bombing. The government was economical with the truth and now, having won the vote, are talking about years of bombing. The only thing this is good for is BAe. The bombing will certainly not help the global climate.
Have you heard about the flesh-eating disease that is affecting many of the Syrians. It is being spread through insects and, of course, because of insanitary conditions. How long before we have it here? This is a different disease to the one we have had here in the hospitals, necrotising fasciitis, also a flesh eating disease.
It looks as though in the UK, especially in England, we are fast losing our identity. The younger generation have grown up in a completely different country to the one the older ones of us were brought up in, so we have a different idea of what it is to be English. We shall end up with no identity as English people.
That is about all for now. Take care of Alex as he will be in shock. He may need some counselling. I do hope the two of you manage to get together to go in search of a car. Passing your driving test and getting a car is a rite of passage for youngsters now.
Best wishes.
Sylvia
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Hi, Sylvia
I looked at the article on the copper depletion drug that is in testing. It's nice to see there is something for triple-negative patients in the works. I noticed the side effects, which they minimalize, are anemia and neutropenia. In my experience, side effects may be minimally experienced, but they are not minimal to the one who suffers them. Hopefully through testing they will find this to be a successful treatment and can work on making it even better tolerated.
The article about the woman who successfully treated her breast cancer only to become depressed rings very true to me. I think part of it stems from the fact that the people who care about you want so badly for you to be okay, that when treatment is successful they assume that you will pick up and return to being the person you were before. They don't realize that the trauma one has been through is such that it will take much time for that to happen, and it may never happen. While we are on our long road of recovery we are also getting older, and things don't just fall back into place. My General Practitioner told me at one point he thought I had PTSD! Maybe he was right.
It's also so different after treatment, as the article said, when you are no longer the focus of all the attention of doctors, and nurses and other staff. While going through it all I couldn't wait for it to be over, when it was over I too felt somewhat cut adrift And then there is the spectre of recurrence that hangs over one's head. I find myself not making a lot of long-range plans, I go as far as not buying large jars and boxes of things to economize because the little voice is saying "Maybe you won't need it." But that's also because I am single now, and don't use stuff as quickly. To cut to the chase, I would say that some depression after successful cancer treatment is normal, and hopefully the daughter in the article will understand that. I notice Virginia states deep depression, that of course is a more worrisome case.
I read a bit on the parathyroid disease, and it certainly has a lot of symptoms that can mimic other problems. I have enough of the symptoms that I checked my latest blood test from November 2015, but my blood calcium is in the normal range. Sounds like a lot of issues can be cleared up by removing the tumors. Even preventing later cancer! The author of the article I read said that usually 20-25 years is the maximum time people can live with this tumor being untreated. I had fibroids on my uterus about 25 years ago; I ended up having a hysterectomy after constant bleeding for months. Nowadays they would probably not have done that surgery, not sure. Now I wish the doc had taken my ovaries too, they are still in place, and hopefully behaving. I wonder about our TNBC too, was it really fast-growing or has it been simmering somewhere for years before it made a problem of itself?
I don't think chiropractic medicine would help my lower back. I have degenerative disk disease, and a cyst there too. I have had this problem for many years, but it seems accelerated since the cancer/chemo. Perhaps also because I don't get as much exercise as before. But now walking a lot really bothers my feet and legs, to the point of pain. Maybe my neuropathy is worse, as I said before, but I don't know. It's very disheartening. That is the point where I most identify with Virginia's mother; I thought I could go back to being the physical self I was before, but I am far from that.
Wow, Michael's son finding a body hanging from a tree! That would be a shocker, not something you see every day, thank goodness. I too would be curious about what's going on and why the police haven't contacted him.
Adagio, glad you are doing so well in your quieter home! Ten pounds isn't much, that will fall off with your daily walking and healthy eating.
As to the terrorism, my country's problems with it started long ago probably in the 80's. It was not nearly so well organized then as it is now though. But I do think it is more a problem of ideology, they despise our Western way of life and our culture and use any measure possible to disrupt and destroy. I don't think stopping intervention will stop the attacks, they use our Western openness against us. Some people think it started with the overthrow of the Shah by the Islamic revolution in 1979, some think earlier than that. It is certainly a complex area of the world to deal with, and seems to be getting more so.
Better go for now,
Talk soon!
Mary
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To anyone interested,
There is a movie that came out about 10 years ago called "The Last Station". It is about Tolstoy near the end of his life when he made a decision to gift his book royalties to the Russian people, and the turmoil that stirred up in his family. Dame Helen Mirren plays his wife and Christopher Plummer plays Tolstoy. It is really a good movie if anyone is ever inclined to watch.
Mary
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Hi Sylvia, Hi all
Just flicked through the posts, glad to see the thread is still going strong!
Life has kinda returned to normal, or as normal as things can be with two young children and a busy job!
I've just had a look at the copper study, very interesting. I will have a proper read and post my thoughts.
Hope everyone is doing well.
Tom
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Sylvia - thanks for the articles on copper depletion. There is always something new coming out, isn't there? It is marvellous that so much is being discovered as a means of treating cancer. I must confess that I do not totally understand the process around the depletion of calcium in the body. The proposed drug sounds interesting - my main concern with the drug is that it suppresses the immune system (neutropenia) and can cause anemia - both of these issues can also be a side effect of chemo. What none of us know (not even the scientists) is how these drugs are going to impact long term on a person's body.When it is a matter of living as opposed to dying - these drugs will be used and will benefit a lot of people, and then the side effects will be treated. Likewise with chemo. It is kind of a circular dance to me. However, I admit to being very biased towards favouring no drugs if possible. I still struggle with having chosen chemotherapy and often wonder what lurks inside my body as a result of the assault of the strong chemicals. But then again, I am fully alive and if I hadn't had the treatments nobody knows what may have happened?? At this time and stage in my cancer journey, my preference is to steer clear of all drugs for fear of what they will do to me. I am living life with much grace and gratitude. Each day I awaken, I consider it a gift and embrace it wholeheartedly.
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maryna - thanks for the movie recommendation - sounds like something I would enjoy. Did you read the article in What Your Doctors don't tell You about root canals having a direct link to cancer? I thought of you. It gets so confusing for us with all this new information coming out. My mouth has at least 2 root canals - the article suggests it is better to have the tooth removed!!
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Sylvia and everyone - I am doing a 3 day juice cleanse - have never done anything like this before. The drinks are all green - with a wide variety of good things like parsley, kale, cucumber, spinach, celery, lemon, ginger, cayenne, apple - all good and very tasty. Day 1 is over and I feel fine - have not missed eating at all. I have heard that Day 2 can be challenging. Has anyone ever done a juice cleanse?
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Hello Mary,
I must admit I do not quite understand this copper depletion drug, but I am hoping that Tom will be able to explain it to us. All I know is that copper is important in our bodies but that we need it only in small quantities. I am not sure how it connects to patients with breast cancer with triple negative receptors. I would not want to touch the pill, especially with serious side effects such as anaemia and neutropenia. I honestly believe that the only way to try to prevent cancer is through life style and not through a pill. I do not believe in magic bullets.
I was very interested in what you said about the article on the woman who went through successful treatment for her breast cancer and then became very depressed. I think you are right that people who have not experienced cancer cannot begin to understand the trauma that it causes in patients. I think talking to other people who have been through it is probably one of the best medicines.
What others cannot understand, either, is that cancer is a life sentence. There is always the possibility of it coming back and that takes away peace of mind.
As for parathyroid disease and an overactive parathyroid gland, the only way to get a diagnosis is to have a blood test for parathyroid hormone. You cannot rely solely on your blood calcium level, as this can be normal or only slightly elevated and yet your parathyroid hormone can be very high. It is negligent that with routine blood tests your PTH level is not taken. I could have been walking around for years with an overactive parathyroid that was not diagnosed. There can be serious consequences to this so I consider myself lucky that I was alright. I am so glad it was discovered quite by accident when I was diagnosed with breast cancer. I had a large non-malignant adenoma on the lower right parathyroid gland. If you have high PTH you are then given a sestamibi scan that locates which gland is affected. Mine was the lower right gland which had a large adenoma that my breast cancer consultant said had been there for quite a time and had definitely preceded the breast cancer.
The parathyroid glands, of which there are usually four, controls calcium levels in the blood and when one becomes overactive, calcium comes out of the bones into the blood. Consequently an overactive parathyroid gland can cause osteoporosis. Strangely, I had no sign of osteoporosis until I had my breast cancer treatment.
You might like to look up www.parathyroid.com.
I think that the tumours connected to TNBC are often thought to be fast growing. My breast cancer consultant told me that my tumour had probably started about three years before to reach the size it had. Who really knows? It did seem to come from nowhere and women often say this about their TNBC.
That is all for now.
Fond thoughts.
Sylvia xxxx
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Hello Tom,
I was so glad to see you back on the thread and to know that you are still viewing. I was glad to know that all is well with you and your family. I can understand how your time is taken up with two young children and a busy job. I do hope all is well with your wife.
I am sure we shall all be very interested to have your opinion on the copper study. I am wondering why they want to deplete copper in the body, and whether it is because breast cancer patients have too much of it, and if so why?
I look forward to hearing from you.
Best wishes.
Sylvia
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Hello adagio,
Let us hope that Tom will be able to give us a greater understanding of this treatment through copper depletion.
I was surprised when I read about it because there was and probably still is an alternative treatment that uses salicylic acid (aspirin), ascorbic acid (vit C), manganese and copper in a liquid oral mixture to treat cancer. I found out about this in 2010 when my uncle was diagnosed with throat cancer (on the tonsils). He had seen a programme on the television featuring a man who had throat cancer, went through that treatment, called CV247, and went into remission and at the time of the programme had been in remission for about ten years, having been told by orthodox medicine that there was no hope. I wrote to the hospice where the treatment was being given by a doctor, and obtained it for my uncle. He took it for quite a few months at home and went to the hospice for check ups. I think by the time we got the CV247 it was too late for him. I know that they first started the treatment on dogs with cancer and it was a vet that was using it and curing the dogs. The treatment made sense to me because I had heard about treating cancer with high doses of vitamin C and with aspirin. I know that manganese and copper are essential minerals in the body, but we do not need them in large quantities. If you want to have a read up Google CV247 cancer treatment.
I would be very concerned about the new drug in trials, especially as it depresses the immune system and can cause neutropenia and anaemia. I have never understood the theory and the practice in treating cancer. We are told the immune system has to be depressed in order to kill fast growing cancer cells and yet, at the same time, we are told that we need a strong immune system to fight cancer cells from developing! I remember my breast cancer consultant telling me that I had probably developed breast cancer because I had never been ill until that time, my immune system had not had to fight, and so had become lazy.
You are quite right to say that none of us knows, including the scientists, what impact these drugs are going to have long term on a person's body. I suppose you would risk the drugs if it was a matter of living or dying, but, I do not think I would trust any pills as a preventive. I think lifestyle is the answer and I am not very optimistic about this as people seem to be addicted to unhealthy, rubbishy food. You are what you eat and that is really showing up in people here in the UK. I think supermarkets have made it worse and there is too much processed food. The fast food companies are also at fault. Raymond and I were brought up on very simple foods and we keep to that. Food companies seem intent on adulterating everything. How many variations on a tin of tuna can they invent, not to mention crisps etc.? I avoid most of the aisles in our local supermarket.
I am with you on favouring no drugs if possible. I think we cannot have regrets about the treatment we went through. I think I would not be alive without it, but I do worry about what it has done to my body. However, so far, the treatment has not killed me, but I think the cancer would have. Remember that I did delay my treatment for a while and saw a homoeopathic cancer consultant and a well known nutritionist doctor and both told me they could help as adjuncts in my treatment, but I needed to go the orthodox way. I also consulted a well known herbalist. I think all three of these helped me tremendously with their treatments at each stage of my orthodox treatment, and I never felt really unwell. I have kept an open mind about all this and I shall never know the whole truth about the different treatments. I stayed with the homoeopathic consultant from diagnosis in the summer of 2005 until the end of 2010. She considered my treatment successful and asked for permission to use my case in her lectures, which she also did in addition to working at the hospital. I need to find the time to look at my much earlier posts to find the names of the things she prescribed at each stage of my treatment. She did all this in consultation with my breast cancer surgeon. I do know that for those five years I took oral Iscador, which is used in cancer treatment in Germany. It comes from mistletoe. You can get mistletoe tea, which I sometimes take.
As for the nutritionist, she really recommended the rainbow diet, with nuts and seeds etc. It was through her that I started green tea and bitter apricot kernels and I have taken them ever since.
The big no-no in all of that was to stay away from dairy products because of the growth factors.
I was so glad to read that you are living with much grace and gratitude and that each day you awaken you consider it a gift and embrace it wholeheartedly. That is very poetic and a good way to live. I am sure that Hanieh will approve of your words. Do you realise what great philosophers we are becoming!!
Yesterday I went to an event to celebrate Christmas and Raymond and I were in charge of setting out the food and drink. It was largely wine and cheese and nibbles. As I set out the food that people had donated, I thought I probably shall not eat anything. It was a relief when someone, after my own heart, came along with carrot, celery and courgettes with some hummus dip and a few olives, so that was what I had. I donated some sugar free sparkling white grape drink and that proved very popular with the few non-alcoholic drinkers beside Raymond and me. The others were very keen on the alcohol and cheese!!! I thought through the evening that there was no hope for the NHS. Both patients and doctors are killing it off.
That is all for now.
Thinking of you.
Sylvia xxxx
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Hello adagio again,
I was most interested to know that you are doing a three day juice cleanse and that you have never done anything like that before. Are you blending the ingredients yourself or are you getting the packets of powder drinks that seem to be everywhere in the natural food stores? I have looked at all the ingredients, parsley, kale, cucumber, spinach, celery, lemon, ginger, cayenne and apple, and it sounds as though it should be really delicious. Let me know if you are doing it by blending the ingredients and how much you need of each, and then Raymond and I will do it as well. We have blended a few ingredients like this in the past and would like to try this one for three days like you.
I am assuming you do this for three days and do not eat anything else. We are both feeling a bit tired and below par, so this might be just the thing. How many times a day do you drink it? We know that the green cleanses are good, rather than the juice ones, because too much concentrated fruit will send your blood sugar up.
Please let us know how you are feeling after day two.
Do you ever have the spirulina or chlorella powder drinks? They are green and supposed to be good, but expensive.
Drink up and be healthy!!!
Fond thoughts.
Sylvia xxxx
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Hi, Adagio
I did opt to have the tooth removed. It was the very back molar on left top so it won't show. My sis-in-law and a good friend both had bad experiences with root canals and had to have the tooth extracted later anyway, so they were pushing me in the direction of removal. Plus the cost! If you have the root canal you pay an endodontist, then you return to your dentist and have a crown put on. Then, if and when it gets infected, you have to pay for removal, and in my sister-in-law's case she had to have a bone graft and an implant put in. Her whole bill was almost $5000. I had also heard of the cancer risks of root canals, because of the possiblity of hidden infection causing problems in the body. I am not getting an implant, even though a friend suggested that teeth will move away from each other. The oral surgeon said that teeth move forward in the mouth, not backward, so they are not going to shift back and away from each other. I think he was also too kind to say that at my age (63) I probably don't have to worry about that too much.
I read an article yesterday about the "cold cap" for people undergoing cancer treatment to keep them from losing hair was okayed by the FDA just recently. I had no idea, I had read about it so much on the cancer websites I thought it was already okay. I guess they finally decided it works. Maybe that means that now insurance companies will pay for it. I did purchase the slippers that you chill and wear on your feet during chemo to keep away the neuropathy, unfortunately I purchased them after my first treatment. I think the damage was already done because my first treatment brought on the neuropathy, should have had them before.
And the movie on Tolstoy's late years is good, I think you would enjoy it. I also recently saw "The Grand Budapest Hotel." It is a comedy, a little dark, but really a good story; an unusual style of filming. I watched it more than once.
Talk soon,
Mary
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Hello linali (Lindsay),
I was so pleased to receive a PM from you in reply to my PM and I shall be replying later on today.
You are a very important part of our group and we miss you on here. Please do not be shy about saying whatever you like here. Remember we are all in this together as breast cancer patients and survivors. We can understand anything that you are going through and you will find everyone here supportive.
Sending you very best wishes over to Ireland.
Sylvia xxxx
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