Calling all triple negative breast cancer patients in the UK
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Hello Amanda,
I was glad to know that you are feeling a lot better this week and that your body is slowly adapting to a new routine.
I was glad to read also in your second post that your bone scan came back clear. That is good news. I am supposing that you had a bone nuclide scan.
I suppose the pain you are having could be to do with the chemotherapy and radiotherapy that you had, but you should still try to get to the bottom of it. We all worry about unexplained pain. What do your doctors say?
Sending fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I do not know anything about what the routine is for check ups with gynaecologists here in the UK. I have never actually seen one for any treatment.
It must have been very frightening for you to be told that you had a mass on your left ovary and that it was not a cyst and that you should be tested for cancer. It seems to me that a gynaecologist should more likely have said that she could see something on your left ovary and that it could be a fibroid as they are very common.
It must have been such a relief to be told you had a fibroid and not cancer.
I had fibroids in my thirties, diagnosed by a doctor during a routine medical check up. They never bothered me and I just left them. Some women have them removed because they bother them and can cause heavy periods. They are supposed to shrink after menopause but that would take time as your oestrogen production becomes less from the ovaries but there is still oestrogen from another gland in the body. You have only had two dipherline injections to shut down your hormones, so it would seem that was not long enough to prevent fibroids. This is something about which you should ask your doctor. I am not a doctor but I never really understood about shutting off oestrogen when you were triple negative.
Saturday is not far away and so I hope you will soon have peace of mind.
Here in Exmouth it is a bit sunny today, but fairly cold.
All the news is about the terrorist attacks in France.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
It was nice to hear from you. How was Brentwood?
It is very kind of you to keep a watch on Owen Jones and his videos. I find he always has something of interest to say. In the ones I watched recently I was very interested about how Cameron and Osborne invent narratives and keep repeating them, and that Labour has to learn to do the same. The one I found interesting was that Labour should start calling working tax credits, 'work penalty' and keep repeating it.
I think you are right in saying that the Left does not seem hungry for power in the way that the Right does.
I am not sure if this is true. I think they want to be in power but it is such a battle for them against the Establishment, which is made up of all the powerful forces that represent conservatism and the privileges of the few (the royal family, the big wealthy families and land owners, big business, the church, the army, the media etc.).
I had read about pigeons and their tracking ability in the past, but I looked up the link you sent and was interested about how they can pick up on screens non-malignant and malignant cells. I can understand the interest, so how long before pigeons replace humans for screening. What a source of income for those eager to make money. They will not even have the minimum wage or the so called living wage. They will just have to throw them a few scraps.
I have read a few articles that might of interest to you. One of them was in the i paper this past week under Health, entitled Breast cancer drug is judged too expensive for the NHS by Jane Kirby and there is an illustration of a bottle of Kadcyla, the drug in question. It is a pioneering breast cancer treatment which will not be available on the NHS because it has been ruled too expensive. It is for women with the advanced form of the aggressive breast cancer triple positive. The drug costs £90,000 per patient for fourteen months treatment. Roche offered a discount but NICE said it was too expensive. There are a lot more details so you might like to have a look at it on line. It does say the drug will still be available in England through the Cancer Drugs Fund for some patients. In Scotland the drug has not been improved.
Another article connected to cancer drugs was in the Daily Mail on Tuesday under Good Health, Special Investigation by Lois Rogers – Sickening Rip-Off. There is a list of drugs under the title The Prices That'll Take Your Breath Away. Have a look at the list it will show you the type of cancer, cost in the UK, cost elsewhere and the cost to make, including 50% mark up. I picked up on paclitaxel (Taxol) to treat breast and ovarian cancer, UK price £13,789, price in India £3,176, cost to make, including 50% mark up £1,034. There is a long list of drugs that are no longer covered by the Cancer Drugs Fund and that includes Abraxane and Avastin.
There are two full pages which should be of great interest to you and everyone else.
Please keep in touch and take care.
Best wishes.
Sylvia
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Hello everyone,
I am just popping in to say that I hope you are all beginning to wind down for the weekend and hope you all have a relaxing one.
I wanted to say thank you to adagio, Mary, Hanieh, Amanda and Michael for contributing so strongly to this thread. It would not exist without posters and I do hope some of the regular posters in the past will come back.
Does anyone know about squamous cell carcinoma arising from metaplasia in the breast with triple negative receptors?
Medullary cacer in the breast with triple negative receptors also seems to be getting mentioned. It was said on one post to be less aggressive.
Tom, if you are still with us you might be able to help us with the above.
I just wanted to let you all know that I have reached 10 years and 5 months today. If I can do it so can all of you.
Later on I shall be posting about a section in Tuesday's Daily Mail under Good Health entitled Life-saving Tips You Must Read Before an Op by a top doctor who knows all the risks (Dr Erika Schwartz). She is the author of a book I mentioned recently Don't Let Your Doctor Kill You. I have been trying to order this but it is sold out. Some of this is obviously being serialised in the Daily Mail.
The headings in this article are Do I really need this op? What are the risks? Don't be bamboozled by medical statistics. Seeing the doctor? Bring a friend. Get a second opinion, Make everyone wash their hands.
A separate heading is Find a medic who looks you in the eye.
This is a must read article and book for all of us.
When we are diagnosed with breast cancer, we must be an informed patient, ask questions and not be intimidated.
Thinking of you all.
Sylvia
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Hi Sylvia
Congratulations on your reaching 10 years and 5 months survivorship. It's so nice of you to try to be of so much help to newly diagnosed.
Today I saw my gynaecologist and she was sure there was nothing wrong with me and everything looked fine. Thank goodness that huge shock turned alright.
Thank all my dear friends here for their warm support and kindness.
Lots of love
Hanieh
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Hello Michael,
It looks as though we are now getting emails from Owen Jones on YouTube. We have just listened to the latest one about the Paris attacks. Have you watched it? We watched a back-dated one with Owen Jones and Peter Hitchens. It was most interesting.
You might be interested in the video of the speech that John McDonnell, Shadow Chancellor, made at Imperial College yesterday (I think). I found it says it all - New society, new economy, new relationship with the world. I hope you have a look and tell me what you think.
The link is
https://youtu.be/A6Prnyvp9GIWe are now looking for an event that is taking place in London in which John McDonnell and Yanis Varoufakis participate. We are hoping to find it on the computer somewhere.
The event is entitled Build the fight against austerity.
In my head a lot of this is connected to cancer because the NHS is under-funded, drugs to save lives are being withheld and I hate to keep reading how we lag behind with the rest of Europe. This is not right and it is not fair. We are the sixth richest economy in the world. Here in East Devon we cannot even get public grass verges cut regularly!!!
I hope you are having a relaxing weekend.
Best wishes
Sylvia
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Hello Hanieh,
Thank you for your kind words about my survivorship. I am only too happy to help people going through breast cancer treatment, but disappointed that so few patients are using this thread now. I am sure that more and more are being diagnosed but if they are able to cope on their own with so much more information availble, then so be it.
I am so, so glad that you have had good news from your gynaecologist and you must feel so relieved. Does that mean there are no fibroids?
I hope you have a good weekend with your family and friends. Will you do something special and happy to celebrate the good news after all the anxiety you have been through?
You have the true spirit of what this thread is all about.
Thinking of you.
Love
Sylvia xxxx
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Hi Sylvia
I do have that fibroid but the doctor said it was nothing to worry about as it was only 14mm.
The only thing that I want to do to celebrate my being fine is to fulfil the promise I made myself to help some disabled children living in an asylum.
Today when I got up in the morning I felt I was blessed with a rebirth. I hope to be able to render the best picture of myself to the universe.
Lots of love
Hanieh
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Hello Hanieh,
I was so glad to know that you had just a small fibroid. That should not be any problem.
How thoughtful of you to celebrate your good news by helping others and going to an asylum for disabled children. I am sure that you will brighten up their day. Tell me a bit about these children and what their disabilities are. What exactly do you do for them?
Every time I read your posts I am so impressed by your depth of thought at such a young age.
Your students are so lucky to have you.
Today in Exmouth the sun is shining and this morning I again saw a beautiful sunrise. It does stir the emotions. I shall post it later on. It is unusually cold this morning for Exmouth but the weather has been mild most of the time for November.
We are now into the manic shopping that goes on in the weeks preceding Christmas. It is all too materialistic.
I heard on the radio this morning that the government is proposing to bring in a sugar tax on fizzy drinks to try to deal with the ever rising increase in obesity. Those drinks are just the tip of the iceberg.
That is all for now.
Love.
Sylvia xxxx
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Exmouth sunrise
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Hi, Sylvia
I have been gone a few days; I wanted to let you know that when I came back I found TTAC videos and transcript waiting for me. I just opened it and the transcript is very nice. It is in the form of a nice paperback book, not the small kind but the larger kind that the booksellers call trade paperbacks. A nice size to carry along somewhere and look over. All in the form of the dialogue that was on the show.
Probably won't look at the videos for a while.
I will post more later.
Mary
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Hanieh
Congratulations on your good news, enjoy your new lease on life. I know exactly what you mean by feeling we have another chance when we get good tidings.
Wishing you continued good health!
Mary
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Hi Sylvia
What a beautiful picture of the sunrise in Exmouth. You're are really lucky to have the chance to see the beauty of the sun rising. Here in Tehran and especially my neighbourhood the highrise buildings do not let us enjoy such beauties which can be so uplifting. But I have a window in my kitchen which opens to a very old plane tree which shows me the four seasons of the year. I will post its picture in the morning.
Thank you so much for your kind words to me. There is an asylum near a small town which is about 200 kilometres from Tehran . There, some mentally disabled children are kept whose families are not able to take care of. I was introduced there by my daughter's teacher whose hometown is there. In fact, here in Tehran there are many such places but they are usually supported by a great number of people. But that asylum is very lonely. At first sight people may think these children do not understand a thing but I have seen how they react to kindness. In fact they love being hugged and caressed. When I'm with them I feel so calm that I forget about all the problems. They are so cool and nice. Moreover I try to support them financially to the extend I can by buying them what their nurses say they need. They are 50 angels .
Lots of love
Hanieh
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Hi Mary
Thank you so much for your kind words. Yes, we are all offered a new chance of living which we should try to enjoy to the fullest.
Wish you the best
Hanieh
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Hello Mary,
It is nice to have you back on the thread.
I was glad to know that you had received your videos and the transcript. Please let me know what you think of them when you start looking at them. I would really have liked to buy the transcripts. I am much more of a reader than a viewer. I think it is very good that they have done the transcripts in the form of the dialogue that was on the show.
Have you done anything differently since watching the videos? Are you taking anything that you were not taking before?
I have not really done anything differently. I do stick faithfully to green tea and the bitter apricot kernels, but I have been doing that for over ten years. I also take a few vitamins and minerals.
The weather here has gone very cold for this time of year in Devon, but at least with the cold the sun has been shining. Today Raymond and I went to Sidmouth which is another seaside town about 12 miles from here. It was cold, but nice to be out in the air.
That is about all for now. I hope to hear from you soon.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Thank you for the post and the picture. It is a beautiful plane tree. Judging by the gold colour of the leaves of the tree, you are behind us here with autumn. Our deciduous trees are all bare and now all the leaves need to be cleared up. In the grounds here we have an English oak that has shed its leaves, but we also have three holly trees which are evergreen with shiny dark leaves and bright red berries. We also have a smaller tree, a cotoneaster, which is also evergreen and has bright red berries. The biggest trees in the grounds are a deodar (fir tree) and a holm oak which is evergreen, hybrid half holly and half oak, with acorns. It is a very messy tree and sheds something throughout the year, leaves in summer, then catkins, than acorns. It is a foreign tree and meant for warmer climes.
I was very interested in what you said about the asylum for mentally disabled children. I am sure that these children will react to kindness and that it will nurture and nourish them. You are doing a wonderful job.
That is all for now. I hope to find time soon to post some more information Life-saving tips you MUST read before and op. It is from a book from a top doctor by the name of Erika Schwartz. I do hope to buy the book some time soon.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am just finishing the article by Dr Erika Schwartz from last week's Daily Mail. The article was entitled Life-saving tips yo must read before an op – a top doctor who knows all the risks. It is stated that as many 10,000 hospital patients die as a result of medical staff errors and thousands more suffer harm, including from hospital acquired infections.
She lists the things to do to minimise the risk. It says that you must not be afraid to speak up and advises not to become a faceless nameless person in the crowd. These are some of the tips.
Make sure that you really need an operation, bearing in mind that surgery, biopsy and any invasive procedure will change your body's anatomy and immune system for ever.
Make sure that you know all the risks and of any special risks to you because of your health.
Do not be taken in by any statistics thrown at you by a doctor.
Make sure you take someone with you to take in any information being given you. It is easy to forget things.
Make sure you get a second opinion if you have any doubts.
Make sure that anyone dealing with you if you are in hospital carries out strict hygiene, especially washing their hands.
I think that when we are dealing with a cancer diagnosis, we have to ask a lot of questions and get answers that satisfy us. We have to feel comfortable and at ease with all the medical team treating us. You need a picture of your overall treatment and details of each part of the treatment, be it surgery, chemotherapy, radiotherapy and after treatment. Be informed at all times.
Happy Thanksgiving tomorrow to all our American friends.
Best wishes.
Sylvia
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Hello linali (Lindsay),
We have not heard from you in a very long time. I do hope all is well with you and all your family members. I do hope you are still working at the cancer centre.
If you have decided to move on, please let us know.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia and all,
I read with interest what you wrote about the Erica Schwartz article regarding medical errors, surgical dangers and infections. I can relate to it. When my husband had his second pleural efflusion (fluid that gathers between the chest wall and the lung sac), he was the victim of a physician error. It is a rather simple procedure to drain this fluid, but when withdrawing the needle the doctor nicked a blood vessel. They brought him back to the ER after the procedure, with nobody knowing what had happened. They did an immediate xray, which showed all to be well. He was smiling and appeared to feel much better. After a while they came in and gave us the option to leave or stay overnight at hospital and if we wanted to leave we could go ahead and do so. I had been watching him and thought he looked as though he had begun to feel worse, although he wanted to go home. I talked him into staying at the hospital, and he got more and more uncomfortable. They took us to a room and got him in bed, and the nurse said she would be back soon. Just minutes later he was in bad shape, he couldn't breathe and was beginning to panic. I told my friend to stay with him and I found the nurse and demanded something be done. Went back in the room, and he was in worse shape. He gasped that he thought he was dying. It seemed like forever but actually quite quickly they got him and took him to Intensive Care, and got right to work on him. It was then they discovered that the chest/lung cavity had filled with blood. They put a large drain in, (another surgery!) and honestly I did not think he would survive the night. The doc told me later that she didn't think he would either. But he did, and was in that room for 5 days. After that he was put on dialysis for his kidneys, he collapsed while having his 5th treatment and died a week later. Side note: the doc who made the mistake on him came and apologized and said it was only the 2nd time in doing the procedure on 1000 patients that he had made such an error.
My husband had knee replacement surgery in 2013. I was worried about him having this, but he could hardly walk anymore because of the knee. When they brought him back from surgery, he was not good. I believe he was very over-medicated, over-sedated. He could just not handle all the meds they had given him through anesthesia and pain meds. They gave him no more drugs for 5 days, if that tells you anything; he had enough still in his system to pull him through the pain. That was when his kidneys went into a faster decline. They had been slowly declining but that was the first time we heard the word dialysis, and the situation didn't get any better. Then a couple weeks later the incision opened and became infected and he had to go on 2 months of IV antibiotics. Also very hard on the kidneys. Plus he had to be operated on again, but this time they were careful with the amount of drugs they administered. He came back to the room in pain, but overall in better shape. I think in all reality he was mishandled more than once, in hindsight I can see it.
In my own cancer treatment, I am not sure I wasn't overdosed the first time I had a chemo treatment. The oncologist told me that in his opinion it was much more effective to give the 3 drugs together, instead of separating the Adriamycin/Cytoxin from the Taxotere. He proceeded and I landed in the hospital severely ill. I had researched just enough to know that the drugs were the proper ones, but I did not know that usually nowadays these drugs are given separately. I also believe in the case of a diagnosis of TNBC the dosage is higher than for estrogen positive cancer. Which nobody there would admit to me, I happened to see on a drug sheet one day that the nurse had left at my chair that it stated "high dose". When I asked about it, the nurse gave me an answer that didn't seem logical, but I was getting Benadryl and my other drugs at the time and I let it go by. At that time in my treatment I thought the best thing would just be to get it over with. They no longer left sheets of paper laying about on my table though. Once again, hindsight is 20-20.
When we are diagnosed with cancer, it is very hard to patiently do all the research that would be good to do. One is in a state of fear, and has a sense of urgency. I was that way in any case! Plus I had a sick husband and I was trying to figure out how we were going to handle all this. I can look back now and see the mistakes I made, but what's the use? It's over and I have to figure out how is the best way forward. If, God forbid, I have to deal with it again at least I am better informed.
Will write more later, I did get another e-mail from Chris Woolams.
A man has come to do some more work on my never-ending house project!
Talk soon, Mary
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Hi Sylvia
Thanks for the links, I will check them tomorrow.
Brentwood stays much the same, although, it is missing many of the shops that were there 10 years ago. The retail scene is dominated by the huge Sainsburys although a, shock, horror, Lidl is about to open on the Ongar road. 😉
I must say I have been very disappointed by Jeremy Corbyn this week. A new leader probably has a six month honeymoon period and if JC cannot gain some headway in that period then he has no chance. In my opinion JC has shown no ability to lead, his past rebellions have hopelessly comprimised his authority and he is overlooking the fact that it is no good preaching to supporters on the left, he has to convince the man on the Clapham omnibus. The one person who has impressed me is John McDonald. I think Ken Livingstone has acted disgracefully over the past month. If he unintentionally upset people then he should gracefully apologise and move on and not engage in the "yes but, no but" arguments. A couple of months ago I used to say to people that we cannot make a judgement on JC'S leadership until he has been in office for a year. I am afraid I have made my judgement. Maybe I am just in a bad mood as I bathed the dog this morning and now it is tipping down with rain and she is going to get trashed on her walk 😂
Michael
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Hello Mary,
I read your post with great interest. It looks as though your husband was very unlucky. All procedures carry an element of risk and when you undergo them you can never know whether you will be the one to fall victim to human error. I can understand how hard that must have been for you.
As for cancer treatment, we can never know how we are going to react to the various procedures. With reference to chemotherapy I can only say that my oncologist told me that the doses given for chemotherapy are based on your weight and height. I do remember having a phone call from oncology before I was due to start chemotherapy and I was asked for my weight and height. I also remember being weighed and measured. I had the epirubicin (Ellence) and cyclophosphomide (Cytoxan) together over three months and at three weekly intervals. My only side effects were fatigue and the inevitable loss of hair. I had the docetaxel (Taxotere) on its own for the next three months and the same three weekly intervals. It was then that my eyebrows and eyelashes disappeared and I had a metallic taste in my mouth. I did not know it or feel it at the time, but my oncologist told me that the neuropathy I experienced after the treatment was definitely due to the docetaxel.
From the posts on this thread over the years, women started having this same combination at weekly intervals and at a lower dose, and felt much better. Now the dosage seems to include a platin drug, so I would think the dose overall must still be based on height and weight and the dosage of each drug adapted accordingly.
I do not remember ever reading that you get higher dosages for non-hormonal breast cancer than for hormonal.
For all newly diagnosed patients I would remind them to take charge of their case, ask all necessary questions about especially chemotherapy. They need to ask why they are having it, is it necessary and can they do without it? They need to get the precise name of the drugs, all the side effects and how to cope with them.
I think newly diagnosed patients should listen more to their oncologist than picking up information from the internet. This does not mean blindly accepting what the oncologist says, but it does mean asking questions and expecting answers. I asked my oncologist why I was getting epirubicin rather than doxorubicin and was told epirubicin was less harmful on the heart. I asked why I was getting docetaxel rather paclitaxel (Taxol) and again I was told it was less harmful on the heart. If you have doubts about what you are told then you can always do some research or get a second opinion.
If our cancers do come back I am sure all of us will have a good think about how to deal with it and do what we think is best for us.
I also had another email from Chris Woollams. I read it but did not think there was much that was new in it. I tend to keep in mind above everything else to have a varied diet, keep physically active, stay away from sugar, alcohol and processed foods, and the hardest of all to try to avoid negative stress.
When do you expect to finish your house project?
The book entitled Don't Let Your Doctor Kill You is now back to a normal price. I am waiting for it to be delivered.
I hope you had a nice Thanksgiving Day.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for the news about Brentwood. It seems to be the case with all High Streets that shops do not last very long. I do remember the Sainsbury's supermarket. Lidl seems to be sprouting up everywhere. We have one here in Exmouth, just a stone's throw from Tesco and an Aldi is in the process of being built. We have a lot of useless shops in Exmouth, not a decent bookshop and nowhere to buy good quality shoes or clothes. Have you noticed how everyone seems to be in a uniform of tight trousers or tights, tucked into big boots. It does not look very nice, in my humble opinion.
I was interested in what you had to say about Jeremy Corbyn. I think he is a good, decent man of great principle and I admire him for that. I think the right wing press has constantly undermined him and had stupid headlines of no consequence. They have condemned him for not singing the National Anthem, for not supposedly kneeling to the Queen and kissing her hand, about what colour poppy he should wear, about whether he bowed his head deeply enough on Remembrance Day, about whether he would wear a dinner suit at the obscene banquet held in honour of the Chinese head of state, and so on and so forth. All of that is done just to undermine him and there is complete contempt for the fact that he won the leadership contest with almost 60% of the votes.
Now, the Tories and the Establishment are using the Syrian issue to undermine him. He has had to choose a Shadow Cabinet that is largely opposed to him and my information is that only four of the Shadow Cabinet share his views on the bombing of Syria, and that includes John McDonnell, Diane Abbott and two other men whose names are not familiar to me.
I think he has the Labour members behind him, but it seems he does not have the general public. This is a very conservative country that would appear not really to believe in democracy or democratic socialism, so only Tory-light Labour parties, such as we had under Blair, can squeeze in to government. Remember, Cameron has only 24% of the eligible voters supporting him. This country has long forgotten all the good that the 1945 Labour government did for this country. Without that victory there would have been no NHS, no welfare state and no social housing.
I think Jeremy Corbyn is trying to do the impossible for the ungrateful! We are an anachronistic country steeped in class, in dire need of modernisation and it is certainly not going to happen in my lifetime.
I had spotted John McDonnell long before the leadership campaign and I thought long ago that he would make a good leader, but, apparently, in the past, he could not get enough support to get on the ballot. Remember MPs were supporting Jeremy because they wanted a debate. They got more than they bargained for! The other lot were more than useless. Andy Burnham should never have been in the shadow cabinet. They all need sacking, but where to find better people?
As for Ken Livingstone, he speaks his mind. He is an intellectual version of the loud mouth and fisticuffs from Hull, otherwise known as John Prescott.
It is sad for me that you have made your judgement on Jeremy, but that is your right. I shall continue to support him and respect him. I think he is too good for this country, so is John McDonnell for that matter. The Right wing press was at it again, making the little red book the highlight of his brilliant speech as Shadow Chancellor. They were just too thick to understand it.
I think the horrible weather and general lack of sun is probably getting to everybody.
I read recently that Trident is going to cost £170 billion. I find that morally indefensible. Just think what that could do for the NHS, social welfare, housing and education. It makes me so angry when I think of cancer drugs not being available to patients because NICE thinks they are not cost-effective. I think it is morally indefensible that people think it is OK to send off one nuclear warhead that can kill 10 million people.
I truly believe what Jeremy Corbyn wants, which is a new society, a new economy and a new foreign policy.
I hope your dog did not get too wet. Bedraggled dogs and their owners are part of the general landscape in Exmouth, especially on the beach.
Have you any up to date information on cancer treatment and research? I think the same chemotherapy drugs continue to be in use.
Best wishes.
Sylvia
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Hello to Sylvia and all,
Re: the Chris Woolams email, I don't think I knew that bisphonates reduce likelihood of metastases to bones. I wonder if we are to infer from that, that having weak bones can add to the risk of metastases? Interesting. I do have a couple of friends on the bone-strengthening drugs, one of them had breast cancer, and now has osteopenia, the precursor to osteoporosis.
I had heard of patients on these threads taking Metformin and saying it helps immensely. I was not sure what it helped with, this article would imply it's success was specific to a certain drug.
I was glad to see good news about probiotics. I am happy with the one I am taking, it is helping my stomach crankiness and bowel regularity. I had been having problems with those issues since finishing chemo.
I did not know that a baby aspirin "stops rogue cells hiding from immune system." In all cases it is very important to have a strong immune system. I am having my back molar tooth pulled tomorrow and am supposed to start 5 days of antibiotics. I have not taken any since I was hospitalized with the neutropenia. The probiotic should help so the drug doesn't alter the immune system too much.
Chris mentions curcumin ; I have been supplementing with it already. It is supposed to be a great cancer fighter, this article says it has heart-protective ability as well; that's good.
And the B 12 and folate to fight the onset of Alzheimer's; it would be nice if something could stop that dreadful disease.
It is very chilly and damp, and gray here too. I can't seem to get warm, just finished a hot cup of tea and probably need another. My sister-in-law and I have made plans to go to the sunny (hopefully!) shores of Mexico in January. We are very much looking forward to it. She is widow of my husband's brother, who also died young. Of colon cancer. Anyway, haven't been anywhere in almost 2 years, something to look forward to.
Hope all is well, and the sun is shining somewhere!
Mary
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Sylvia,
I forgot to say "thank you" for your Thanksgiving greeting. I was very social, went to a family dinner on Thanksgiving Eve. On Thanksgiving Day went to stepson's house, he and family have just moved into a very nice place. I snacked there, and then went to friends' house and had another big dinner. I thought I was finished celebrating when my sister called last night to ask why I wasn't at my cousins' big get-together at their mom and dad's house. Both parents passed away over the summer. Anyway, it had completely slipped my mind, I just forgot about it. So I got ready and went there, and had to take a lot of jokes about getting old and forgetful!! Which is apparently true!
I don't think I have to go anywhere today, so am recovering from Thanksgiving! It is very nice to get to see so many friends and family members.
Mary
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Hi Sylvia
Don't get me wrong I like and respect JC but surely it is his job to sell his vision and convince enough people in order to win an election with a workable majority? I don't think he has the ability to do that, even without the press undermining him. I don't think Syria is doing him any harm as I think many people have mixed views. According to the Irish media today, even the British right are moving against bombing.
He is a nice likeable man but without the ruthlessness to be a leader. I was talking about this in the pub last night with my left wing friend (he makes Mao look like a Thatcherite) and I said that I think people who become leaders, managing directors etc have that as their goal from the time that they start their career paths.
Michael
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Hello Mary,
Thank you for your post. I think bisphosphonates have been around for quite some time. They are a standard treatment for women diagnosed with osteoporosis. I was advised to take them for this, but I have refused and I would not touch them. I know that they advise women who have been diagnosed with hormonal breast cancer and are put on aromatase inhibitors to stop oestrogen production after their standard cancer treatment to take them. These aromatase inhibitors cause osteoporosis and bisphosphonates are supposed to help with strengthening the bones. However, I have read that bisphosphonates stop new bone forming and you are left with old bones that are brittle and can break easily. In addition, there are nasty side effects such as bone necrosis of the jaw, which is a very serious condition. A friend of mine was left on bisphosphonates for about seven years to treat osteoporosis and had terrible trouble with her jaw and teeth.
I remember talking with two different consultants about bisphosphonates and they told me they were not nice.
Back in 2005 they were already being used for advanced breast cancer that had spread to the bones. I do not know a lot about bisphosphonates as a preventive to metastases to bones. If that is the case that they stop metastases to the bone, then I would ask why are all of us not automatically put on them at the end of standard treatment. Of course, you would presumably be on them for life. I certainly would not take them. Who knows what they are going to do to the body. It is horrible that our cancer treatment, be it chemotherapy or radiotherapy, damages the bones and we end up with osteopenia or osteoporosis.
Some trials have suggested that women who took bisphosphonates after surgery had a small but significant improvement in survival. There have also been trials with the bisphosphonate known as Zoledronate, given in 15 minute infusions every three months, which show improved survival.
I know from friends who have had breast cancer and are on aromatase inhibitors, that they need to have regular DEXA scans to check bone density, if they have bone problems they will probably get bisphosphonates.
Bisphosphonates are said to be an effective treatment for cancer that has spread to the bones. Bone metastases can be diagnosed through x-rays of the bones, a bone scan, a CT scan and an MRI scan. You can also diagnose this advanced breast cancer through a blood test which shows high calcium levels in the blood. However, high calcium levels can also be a sign of an over-active parathyroid gland and this can be very serious. I had high calcium levels on diagnosis and, thankfully, this was due to an over-active parathyroid gland, which had never been detected and was cured through surgery. There is some research that shows a possible connection between an over-active parathyroid gland and the development of breast cancer. I cannot understand why parathyroid hormone is not part of routine blood tests, at least here in the UK.
It is true that for quite some time now the medication metformin, used in the treatment of diabetes 2 is being taken by some patients as a preventive. Again, it is not something I would take. It has side effects. However, we all have to make our own decisions.
As for probiotics, I cannot see the harm in taking a supplement, but you can get it through food and it needs to be accompanied by prebiotics. I take organic soy yoghurt every day for this, but you can also eat sauerkraut. For prebiotics you can include onions, leeks, garlic, asparagus and artichokes in your diet.
As for aspirin, 75mg that is being pushed forward for all sorts of things, including cancer prevention. We have to remember that aspirin also has serious side effects such as bleeding in the stomach.
Curcumin (turmeric) is also something that has been published widely as an anti-cancer agent. I buy turmeric in powder form and try to integrate it into my diet. I think the curcumin supplements are probably better because I remember reading that turmeric powder gets destroyed in the stomach.
I have my own theory about Alzheimer's and other forms of dementia. I think a lot of it may be to do with the cocktail of drugs that people are being given having a disastrous effect on the brain. I have read that antidepressants and sleeping tablets could be implicated. It certainly makes sense.
Can you remind me whereabouts you are in the US? I bet you are looking forward to your trip to Mexico. I think you have earned it.
Here in the UK it is another dreary day.
Take care.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for your very interesting post. I shall reply later on today, as I have to go out to do some mundane shopping and post some letters for an elderly neighbour.
Talk to you soon.
Best wishes.
Sylvia
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Hello Michael,
It is always interesting to read your posts.
I think that it is very hard for a person like Jeremy Corbyn, who has a very clear vision of what a decent, caring society should be like, and who has held firm to that vision over his lifetime and in the over thirty years in Parliament, to sell that vision to people who do not believe in it. I think that people, especially in England, take no real interest in politics. They are more interested in having a good time and to hell with everyone else. Having lived in France for seven years, I can see the difference clearly. French people are very political and talk politics all the time. The press here play on people's ignorance and give only half the story. I have just listened to the BBC News and the journalist was saying that since were bombing in Iraq, we should be bombing in Syria. What she omitted to say was that we have been invited by Iraq to come and bomb in their country, but that we had not been invited to bomb in Syria. Because of this and the failure to give the full facts, ordinary people base their opinion on half the story.
I have also just heard on the news that 75% of Labour members are against bombing whilst only 13% were in favour. The problem is that MPs are out of sync with members, so it makes you wonder what can be done.
I was interested in what you said about the Irish media. It is true that UKIP and some 20 Tories are against bombing. When you say Irish, do you mean Irish Irish or Northern Irish?
The Libdems and the SNP are also against bombing, so it will not look good if a lot of the Parliamentary Labour Party and the Shadow Front Bench vote with the Tories.
I do agree about ruthlessness, but I would not support a ruthless person. All that kind of person cares about is rising to the top out of a sense of vanity and ego.
I did laugh about your friend whom you say makes Mao look like a Thatcherite! What did your friend reply to what you said about ruthlessness?
It looks as though this is going to be an interesting week.
Changing the subject, I was looking through some of the other threads on the TNBC forum and noticed one post in which a woman was saying that in the past she had had non-Hodgkin's lymphoma and was BRCA2. She now has breast cancer with triple negative receptors. It made me wonder whether all types of cancers are diagnosed according to receptor status and BRCA status. Do you know anything about this?
On Saturday I watched the latest two Owen Jones videos. One was about the attacks in Paris and the other was Six things that Jeremy needs to do. I was wondering whether you had seen them?
It sounds as though you have good conversations in the pub. Here in Exmouth it is all very feudal. Probably the only controversial conversations going on are coming from my brother!
I hope you are not feeling so down today. Here the weather does not improve. The wind is terrible, but it is a bit milder. I think we are all suffering from cabin fever.
Sending you very best wishes.
Sylvia
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Hello Mary,
I have just looked up the common side effects of the bisphosphonate alendronic acid (brand names Fosamax, Fosamax once weekly). Side effects – abdominal pain/distension, diarrhoea/constipation, muscle/bone/joint pain, headache, pain on/difficulty in swallowing, new or worsening heartburn.
Rare side effects – nausea/vomiting, rash/photo-sensitivity, eye inflammation, jaw pain.
Alendronic acid is usually prescribed indefinitely for osteoporosis.
This does not seem like a bundle of joy!
The other bisphosphonate zoledronic acid is the other well known bisphosphonate (brand name Aclasta, Zometa) is used in a similar way.
Let me know what you think of all this.
Fond thoughts.
Sylvia xxxx
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