Calling all triple negative breast cancer patients in the UK
Comments
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Hola Marías,
Estuve muy feliz de encontrar tu publicación.
No necesita pedir perdón por no publicar por un tiempo. Entiendo completamente que estás pasando por un momento muy difícil. Puedo entender que ha tenido un caso grave de gripe y que no ha tenido ganas de escribir mensajes. Lamenté leer que has tenido muchos dolores de cabeza. No quieres estar cerca de una computadora. Estaba interesada en leer que has estado sufriendo de fotofobia. No es algo con lo que estoy muy familiarizada, pero puedo entender que no has estado usando tu computadora.
Estaré pensando en ti el 7 de febrero cuando tengas tu tratamiento. Este es el tratamiento con yodo radiactivo. ¿Cuánto tiempo estarás en el hospital? No estoy segura de lo que significa la referencia sobre una máquina. Si entiendo tu tratamiento correctamente, estarás en algún tipo de unidad de aislamiento.
¿Puedes explicar la dieta sin sal? ¿Normalmente pones sal en tus alimentos y tu sal yodada? Nunca he salado mi comida y no está yodada aquí. Hay suficiente sal natural en nuestros alimentos y no necesitamos ponerle sal. La comida salada te hace engordar ya que te hace retener agua.
Supongo que no debes comer mariscos ni pescar por el momento.
Puedes hacer buenas comidas sin estas cosas.
Usted dice que su estado de ánimo es bajo porque no está tomando el medicamento Eutirox, que se usa para problemas tiroideos poco activos, al igual que Levothyroxine. ¿Le dicen que ayune, que no es comer, antes de su tratamiento? Si está ayunando, podrá disfrutar su comida aún más después de su tratamiento.
Gracias por preguntar sobre el resultado de mi biopsia. Tengo que volver al hospital para un poco más de cirugía para profundizar un poco y luego debería estar libre. Quiero descargarme lo más pronto posible, pero tengo una espera de cuatro semanas.
Regresarás a días más normales y todos podemos esperar publicaciones interesantes y fotografías encantadoras.
Abrazos.
Sylvia xxxx
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Hello Mary,
Thank you for letting me know about the vaccine series. I shall try to watch some of it.
With reference to cancer treatment and survival here in the UK, I think it is a bit of everything. It has been on the radio since I read about it in the newspaper last week. The NHS does not have enough money, does not have enough doctors or nurses and has more patients than it can deal with. I think one reason is that men do not get themselves checked out and the disease may be too advanced by then. There is the PSA test, but my information is that it is not always reliable. I think often with older men it is better to leave it alone, as it develops very slowly. I have read that surgery to remove the prostate is not recommended unless the cancer is really aggressive. It leaves men doubly incontinent and impotent.
As for pancreatic cancer, I know that it is a killer. My elder brother died within three weeks of diagnosis with disseminated adeno carcinoma in the liver and pancreas that had spread from somewhere else, but the primary was undetected. I have always found that a bit odd.
With lung cancer, I think the disease is always quite advanced when detected.
Whatever the reasons for the UK being bottom of the class when it comes to cancer, I think we should hang our heads in shame. We have not trained enough medical staff and have been content to poach staff from other countries. Here in the UK everything is about how much money, but we waste enough money on unnecessary wars etc.
Like you, I get fed up with all the dire news about side effects from breast cancer treatment. We know what the treatment has done to us, but all the effort is on more and more drugs.
I think there will be more and more cases of breast cancer and cancer in general, because we have ruined our bodies through our modern lifestyle and in the shops we are getting more and more processed and junk food. I think our lifestyle is the cause of what seems to be an epidemic of cancer and other health problems.
I was glad to know that you are reading the book The Dental Diet. I hope everybody on the thread reads it. I have now read the first six chapters which make up part 1 and I have learned so much about the history of the mouth and how important it is to our health.
I am now reading part 2 and chapter 7 entitled Why The Food on Your Plate is making you sick. It really reminds me of how bad our food is today and how essential it is to remember to eat for health. He goes through all the things that are bad for us and lists sugar, grains, vegetable oils and refined seed oils, processed dairy, corn and soy.
He also mentions how modern farming changes the meat tht we eat. He mentions how important fat is in the diet as well as fermented foods.
Chapter 8 is entitled From Low-Fat to Cholesterol and elaborates on all the harm that low fat diets have done. He explains the importance of fat and how they are essential to absorbing fat-soluble vitamins, vitamins A, D and K2.
There is so much in this book that it needs to be kept as a reference book and needs to be looked at often.
I have read chapter 9 Eating to Make Your Dental Check-up a Breeze. This is a really important chapter which I need to read again.
I do not know what is going to happen to the health services with so many people obese or overweight. I cannot understand how people cannot equate what they eat with their weight and consequently illnesses. We have to eat foods that put all the nutrients we need in our bodies.
You will be glad to see that Marias is back with us.
Apparently it is World Cancer Day today and Friday was Ground-hog Day. I remember that from Canada.
Did you know that in France February 2nd is La Chandeleur. They eat crêpes on this day but it is not anything to do with Shrove Tuesday Pancake Day. I had completely forgotten about it from my days in France.
Thinking of you.
Love.
Sylvia xxxx
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Hello Mary,
I was just having a look at the French celebration La Chandeleur-the day for eating crêpes. I thought you would enjoy the following link.
https://www.cntraveler.com/story/how-to-celebrate-...
Love.
Sylvia
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Hi Sylvia / Hi Mary !
Thank you for your kind words ! The neuopgen helped alot. She is now 3 days off of them and hasn't dipped/or crashed and is getting on as normal. She is a little tired every now and then, if the weather is nice this afternoon and not too cold I think it would be good for her to get some air and go for a little walk !
Hair shedding began this evening.. she had washed it the day before and let it air dry without combing it so i think it dried weirdly, she developed a big knot. So she combed it gently today and it just shed out in a clump and as she combed more hair was coming out. She felt a little disheartened and thought her cold capping didnt work. I hope not too much falls at once. From what i understood shedding begins 20 days + after your first chemo round.
Hi Hanieh,
Its so nice to see you up out and about. A good catch up with old friends will always lift your spirit !
Kindest,
Sarah Xx
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Hello Mary,
I am posting just to let you know that I have not had the time to look at all the videos presented by Ty Bollinger. I did pick out episode 4 to have a look at today. It is the one entitled Examining influenza – HIB and Pneumococcal Vaccines and Herd Immunity. I did find it all very interesting. I just wish there could be written documents for the seven episodes instead of videos. It is not easy to take all the information in while listening to conversations and you cannot take notes because you then miss important points.
I know this series was about what is going on in America with the doctors etc. and how vaccines are being pushed from birth. I do not agree with this as I think it does not give babies and very young children a chance to form an immune system. I am sure this is going on elsewhere and I think, as I have said before, the drug companies want everyone medicalised.
In this series, talking about the influenza vaccination, it becomes quite obvious that it does not work and that the vaccine is continually mutating. It looks as though you have more immunity if you do not have the vaccine.
You will understand all this about the flu vaccine was of particular interest to me because, against my better judgement, I had the flu vaccine and 48 hours later I have a problem with a swollen right arm from lymphoedema. I had not had any flu or colds in over twelve years and I had not had any flu injections during all those years. I only had one in 2005 when I was diagnosed with breast cancer and the oncologist told me to get one.
I am convinced the flu injection somehow caused my swollen arm. I shall never have a vaccine again, all the more so because I know they do not work in older people and I do not think I should have one because of a compromised immune system, due to breast cancer and a damaged lymph system.
That is all for now.
Love.
Sylvia xxxx
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Happy Sunday Everyone,
I was very happy to hear of your good news, Sylvia, even though you're not finished with your time in the system. I hope you gained back a little peace of mind now.
Your description of the underfunded, understaffed, and overburdened NHS sounds so much like my workplace - a state-funded university - that I'm not surprised that I feel especially exhausted this week. We are short-staffed to begin with, and about half of us were out sick or on leave during the week. I had to work our front desk, and generally accomplish own my workload at the same time. It was actually kind of fun, but now I'm at the weekend, and I need to rest. I'm doing my laundry, cooking, my workouts, and running my errands. It's a constant struggle.
If I don't do these things, my work week won't run smoothly. If I try to do too much, I go back to work tired, and never catch up. Still, I'm very grateful that I can push down a soap dispenser, lift a cast-iron pan, reach down into my washing machine, carry things, sleep on my side, do a workout, and shop by myself. These are all independent actions that I lost during my treatment, and especially during my surgery recovery.
I got my first haircut since June, 2016. It's a sleek looking, angled bob. I'm still getting used to it, but the hairdresser did a good job. I'm also still adjusting to the Weight Watchers diet, and creating a new routine around food prep. I don't want to spend every Sunday making food for the whole week, so I'm tackling ways to make it all more efficient.
I did keep up a lot of walking during some Fitbit challenges, but I have to pace myself very carefully there, so I don't run out of energy each day.
If you don't hear from me, it's not because I'm not following along with everyone's posts. I feel relatively well, and right now each day feels like I'm running a race. I'm going to try to get a good nap in today.
I hope everyone is feeling as well as possible today,
Pam
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Hello Sarah,
Thank you for your post. I was glad to know that the Neupogen helped your mum a lot and that she is now feeling more normal. She is bound to have moments of feeling tired and when she does she should just have a little lie down and try to relax. I do hope she managed to get a little walk in today but it was very cold and she needs to be careful.
It is a very difficult time when your hair starts falling out shortly after treatment. I found it very traumatic. It started falling out not that long after the first treatment. I had been warned that this would happen and that I would have to wear the wig when I came for my second three weekly treatment. I soon got used to my wig and did not feel strange when I went out. It looked very natural and some people thought I had not lost my hair! I could not have coped with wearing a tied up scarf or turban, as I thought it would be obvious what was going on with me. Since I went through my six months chemotherapy from November to the end of April, I wore a smart ready made turban type hat in bed, as without hair it gets a bit draughty.
I can understand that your mum was disappointed that the cold cap did not work. Do you think this was because your mum had long hair or did she have it cut shorter for treatment? It will soon grow back. Remember to tell her to keep her scalp well moisturised. I used to put pure avocado oil on my scalp and then wash the scalp with a little bit of gentle shampoo.
When is your mum's next appointment?
How does she feel about her paclitaxel (Taxol). I keep reading about patients who have problems with it. The taxanes, whether it is docetaxel (Taxotere) or paclitaxel (Taxol) seem to be very harsh. I did read there is another drug, Abraxane, which is a taxane but a bit milder. I do not know too much about it and I cannot remember anyone mentioning it on the thread in the past.
Keep looking forward, keep hydrated and rest when you need to.
Love.
Sylvia xxxx
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Hello Pam,
Thank you for your post. I always look forward to reading what you have to say on a Sunday evening.
You have certainly had a busy week at your workplace. It is so awful to have added stress at work because of shortage of staff. In addition, I know that in the US, according to the news, they are having a flu epidemic which is one of the worst in over ten years. I can understand that you were glad when the weekend came.
I think we all live hectic lives and I do not think it does us any good. It is very difficult to relax. My days are busy and I am 'retired'. Raymond and I have taken it in turns to be volunteer directors here for almost the whole sixteen years that we have lived here in Devon. We are responsible for the good running of our apartment complex and have to get on with all our residents. At the moment we are composing the first newsletter of the year that has to go to the residents and next week there is a directors' meeting and we have to do an agenda for this and then official minutes. We also deal with all the contractors to make sure everything is kept up to par. We are always chasing time!
Like you, we also have to deal with our own daily lives, household chores and shopping.
We all have to try to make time for ourselves and take time to appreciate quiet moments to ourselves. I think the whole world seems to be in a spin and that goes double for the UK. The politicians are making a mess of Brexit and not paying attention to the health service, education, housing and the poor and homeless. Apparently we have a shortage of 100,000 staff in the NHS and a teacher shortage as well, not to mention social housing.
I am very glad to know that you are feeling well and can do your chores. Keep up the good work and pop in whenever you can. Try not to wear yourself out.
That is all for now.
Love.
Sylvia xxxx
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Hi Sylvia,
Her onco and cold cap nurse did say there will be shedding and atleast 40%-50% hair loss / thinning. So the shedding that happened last night i suppose is just the beginning of that but they are hopeful that cold capping will work. As sad as she is about hair loss she is not keen on wearing a wig. Bit odd i found it, but my mum is just extreme like that i guess. She cut her long hair to a long bob so its easier to manage incase it does not work. We both donated our hair to the little princesses charity !
Regarding her Taxol, her onco said it is extremely more mild if we compare it to her EC. She said it will be much easier on her as EC apparently is the "stronger" drug. I am going to research this a little more though - Thank you for pointing it out !
Hi Pam
So thrilled you got your first hair cut since 2016. A sleek bob will always forever be a classic ! Im sure it looks amazing !
xx
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Hi, Hanieh
I'm glad you liked my picture of the sunrise. I do live in the country, there are advantages and disadvantages to everything, you know. It's nice to look out my window and just see trees, grass and birds at my birdfeeder and deer coming out of the woods, but sometimes it's lonely and sometimes it's inconvenient. So far I am not afraid to live alone, I do have neighbors on one side that could hear me if we were both outside screaming. My other neighbors are further away, but close enough that I get their newspaper sometimes in my mailbox!
I am very sorry that in your country the government and religion are so entertwined. That causes problems, indeed. Wearing a scarf at all times when in public would be constricting, can you tell me why some women must wear the hijab and some do not?
I'm glad you felt well and went out with your university friends, and I hope that more carefree days are ahead for you and your friends.
I hope you are doing okay with the chemo, I'm so glad you are young and strong. And you have a great support system in your daughter, husband and parents. It looks cold in your picture, it's cold here too and I would not be outside without gloves!
Take care Hanieh, I think of you so often and lit a candle for you and Marias this morning, I was running late so I had you both on one candle!
Talk to you soon, love,
Mary
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Hi Sylvia
Glad to hear all is well with u. I have enclosed the URL from our Immunise Australia program to look at. The varicella program is very new here as everything has to pass stringent TGA guidelines before free program commences. I would imagine that they are using an attenuated vaccine as opposed to live because the shelf life is longer, vaccine shedding would be less likely and the risk of anaphylaxis is much less with attenuated vaccine.
Spent the week with my grandsons and had a ball. Had a tooth pulled last week as chemo destroyed it and my sinuses are really giving me grief after it! Have to keep reminding myself that I have always had sinus problems but had a very dark day yesterday imagining the worst and googling things I shouldn't!
I hope everyone is well? Our hot weather is continuing with 40 plus Celsius predicted all week.
www.mmunise.health.gov.au/internet/immunise/publishing.nsf/Content/shingles-Q&A.cnt
Cheers
Kath
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Marias,
It is good to see you here, I'm so sorry you are still being bothered by the flu, the photophobia and the headaches. The flu is very widespread this year, and the photophobia and headaches would indeed make it hard to look at the bright screen of your computer.
I understand you will start an iodine treatment on February 7, I looked it up and see that it involves taking pills that seek out any remaining cancer that may be in the body. This article said it does not bother any healthy cells. That is very good! The diet you are on is quite strict, but at least it is temporary, is that correct? How many pills will you have to take? Please don't feel you have to answer these questions now, it's fine, we can hear about it later. I hope it all goes very smoothly with great success, and you can then get over all you have been through.
We are happy to hear from you, and will be thinking of you as you have your next treatment on Wednesday the 7th.
Talk to you soon, love,
Mary
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Hi, Kath
Thank you! I agree with you about orthopedic docs, I went to one in 2014 who actually brought me to tears, I was not in good shape after chemo and he was so cold and dismissive I burst out crying and his attending intern was left to deal with me and give me a tissue! In my opinion, the nicest docs are General Practitioners and Animal Veterinarians, with perhaps the Veterinarians winning First Prize. Without fail, nice people!
I have actually been to 2 orthopedic docs over the last year, the first one is one I have known for some years, and he is one of the nice ones. He gave me 2 injections, the first one worked and the second one didn't, and he had no other answers. So I went to the second, most recent, one for his view, and he gave me a stronger injection that did nothing, and he has now washed his hands of me. Here the Doctors don't really promote the plasma injections, that is out-of-pocket expense so they don't explore it. I did pursue it, and I will perhaps pursue it more if and when I reach the 5-year survival mark. However, my acupuncture doctor is of the opinion that plasma/stem cell treatment is always risky for someone who has had cancer. He thinks cancer is chronic, and why take a chance of spreading any cells that may be lying dormant? So I will keep my appointment with the Pain Management Doc and see if he has any ideas I am agreeable with.
I am not sure what "shared care" is that you refer to, so you mean seeing more than one doctor?
I also had a tooth pulled last year, I didn't think of it being related to cancer treatment but it's very possible since I had not lost a tooth before. My dentist thought the tooth could be saved by doing a root canal, but after reading up on that I decided against it. I hope your sinus aches will go away, I was warned that might happen but it should be temporary for you
Wow, you are having hot weather, 40 C is 104 F, I see. We are at opposites, we have 8 F this morning, which is -13 C. Somewhere in the middle would be nice!
Thanks for your input, talk to you soon, love
Mary
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HI, Sylvia
I was curious what you think about the Dental Diet, wherein the author says we should eat different kinds of fat, and suggests meats, eggs and cheeses. I know you eat very little, if any, of these foods and you said at one time you were thinking of going vegan altogether. For myself, I have been eating very little red meat, but do eat Alaska salmon and eggs and some chicken. I have not been eating much in the way of fat, except for olive oil, salmon, avocados and so on. I do find that sometimes my body is actually craving protein, last week I bought a pound of Ground Buffalo, grass-fed. It was delicious, I added egg, oatmeal, onion, mushrooms, and some panko crumbs to it, made a loaf and baked it, and topped it with a bit of my homemade marinara sauce. It was filling, and satisfying and my body was happy with it. I do not think I could do completely without animal protein, I have gone weeks before without it, but also ended up feeling very hungry, hollow and unsatisfied. I cannot eat enough beans to get the protein needed, they only agree with me in small amounts. Soy products are fine for a while, but they do not satisfy for the long haul, for me. Perhaps it is all a matter of adjusting to it over time.
I am really glad you got to see at least one of the Vaccine Series, that is enough to get a taste of it. I am going to rethink the Influenza shot too next year. We have had a very bad flu season, it's not over yet, I am hoping to avoid it.
I told a few people about the number of shots children get at a very young age. Some of them were not aware, even some parents were not aware of all the different vaccines their children are getting in one injection! We are all rather brainwashed by the early-age vaccine proponents I think. Since I had very few childhood injections, and have no children, I was very surprised at all the shots they get.
If you had watched the last show in the Series, you would have heard a doctor talking about a program coming out from our CDC in 2020, called Healthy People 2020. It is a very ambitious plan which covers every possible test, vaccine, protocol for exercise which in their minds will keep us healthy. All these tests and every vaccine available will be pushed on all of us over the next many years. I went to the website Healthy People 2020 and there it all is, laid out alphabetically. It's a little Orwellian, I think. But it's already happening, In California children who attend public schools MUST receive all vaccinations the CDC thinks necessary, or they are not allowed to attend school. Home-schooled children are exempted for now.
I don't know where it's all going.
I do know I must go, I will be busy too the first part of this week, and I hope Marias first treatment goes well, and everyone else is doing well too.
Talk to you soon, love,
Mary
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Hello Sarah,
Thank you for your latest post. I did not realise that when you had the ice cap for your hair that you still lost some of your hair and had thinning. For some reason I thought that it worked 100%. It will be interesting to see whether as the infusions continue, whether there is more hair loss. The cold cap does strike me as quite an ordeal. I think if your mum tried on a wig, she might take a liking to it.
I am puzzled as to why your oncologist thinks that Taxol is a lot milder than the EC regimen of epirubicin and cyclophosphomide. From my own experience, I thought that the taxane drugs were much more difficult. I had docetaxel (Taxotere) and my oncologist told me it was much less toxic than paclitaxel (Taxol) and was not as harmful to the heart. I found that my eyebrows and eyelashes disappeared when I started Taxotere and that I also developed a metallic taste in my mouth. I know from my oncologist that the taxane drugs caused the peripheral neuropathy in the feet. Recently reading the great book on lymphoedema, I discovered that the taxanes somehow cause lymphoedema.
As I have said before, I had Taxotere every three weeks, but other women have said that they found the taxanes easier to deal with when they had them weekly.
I would be interested to get more information about Abraxane.
I do know that epirubicin, doxorubicin and cyclophosphomide have been used for longer that the taxanes and are known as the 'older' drugs.
I do hope your mum continues to do well. Make sure she keeps nice and warm in this unusually cold weather.
Take care.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your kind words and for enclosing the link. You might want to edit the link and put a dot after www otherwise it does not come up when you click on it. I shall try to read it this week. It is only Monday but I already have a collection of documents to read. I do not like sitting at the computer for very long, so Raymond prints things out for me and I can read them at my leisure.
We have certainly had 'the mother of all discussions,' about vaccines. It is just as well because they are very much in the news at the moment. Did you, by any chance, look at the Ty Bollinger videos? I hope they appear again so that I can look at them some more.
I was glad to read that you had enjoyed yourself with your grandchildren.
I think we should have another good discussion about our teeth and gums with reference to our breast cancer treatment and our development of breast cancer. This is another topic that is very much in the news.
I have just received my February email from Chris Woollams, Cancer Active, and he has twelve topics in it. At a first glance I saw number 9 Now Gum Disease is Linked to Breast Cancer – a staggering 54% of adults have some sort of gum disease, and it does not just result in your teeth falling out!! Gum disease has been linked to heart disease, and pancreatic cancer. Now it is the turn of breast cancer. Then you have to click on – Gum disease and breast cancer.
I do hope you are feeling better after sinus problems after having a tooth extracted. Here in the UK we are given lidocaine and adrenalin when we have a tooth extracted and it does make you feel strange. What do you take for relief for sinus problems?
You must keep away from these dark corners that your thoughts go to. Do something that makes you feel happy or makes you laugh.
We seem to be having extremes of weather. It is very cold here for this country. I hope it does not snow because the powers that be are hopeless at dealing with it and we shall have chaos!
Take care.
Love.
Sylvia xxxx
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Hi Mary,
I see that I forgot to respond to your message. I'm sorry that you'll miss your LA trip. I mentioned the homeless problem, which has been all over the local news and a topic in our county lately. The homeless population in Downtown LA is centered very near that bookstore, and the its numbers have exploded in the past few years. We need compassionate solutions for this issue, since many of the homeless are mentally ill, and the we lost our institutions for the mentally ill in California years ago. Had you come, you would have encountered many of these people. Some of them are homeless by choice, but their living conditions are disturbing and heartbreaking to me.
I hope you get a break in the weather, and a chance to take one of the road trips to Texas and Oklahoma. You're right, it's looking forward to the get-away that's important. My husband and I have not traveled, but we want to visit Portland and Seattle. I want to find a way to see Ireland soon, and go back to Scotland at the same time.
Back to work for now...love,
Pam
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Hello Mary,
Thank you for your latest post. I was interested in the fact that you picked up on what Dr Steven Lin says in his book the Dental Diet, about the importance of eating different kinds of fat, including some saturated fat from animal products, such as meats, eggs and cheese. It makes sense about having different kinds of fat and having all of them in moderation. I do understand about his opinion that the low fat diet that has been promoted for a long time has done a lot of damage to people's health. I can understand that in order to absorb the fat soluble vitamins, A, D, K, we must have some fat in our bodies.
We are reading a lot now about how saturated fat is not the cause of heart disease. It is up to each individual to decide whether to believe this or not. I certainly never took any notice about the promotion of cholesterol levels and heart disease. I read a long time ago that the body makes its own cholesterol and is responsible for 75% of it in the body. Cholesterol from food makes up only 25%. The body evens out what it wants. I do not necessarily believe statistics. I think a lot them are all about proving what researchers want to prove and to promote pills. I do not believe in statins.
I do remember that Chris Woollams once said that, even if saturated fat was not implicated in heart disease, he thought it was implicated in cancer. Who knows?
With all this information floating around, individuals have to make up their own mind, and hope for the best. You will not get any agreement in the medical world. All I can say is that I prefer to try to deal with my own health by making an effort to eat healthily, but I think a lot of people do not want to do this and prefer to swallow pills which probably do more harm than good. They may soothe symptoms but they do not tackle the cause.
I shall stick to the eating patterns that I have had for quite some time. I decided not to go vegan because I think that fish is too important and from time to time, I do not know why, I have felt the need to eat it. I shall stick to frozen wild salmon and some frozen haddock, both from cold waters. I do eat eggs but I buy only organic ones. I do find them filling and satisfying and apparently they contain lutein which is good for the eyes and I have read it is not in other kinds of eggs. I do have some whole prawns on the shell for iodine. Apart from that, my nutrition is based on fruit and vegetables, seeds, nuts, pulses and beans, along with Sojade or Provamel plain live culture soy yoghurt. I have all of these every day. I shall never eat meat, poultry or dairy products, but that is my personal choice. From time to time I may have a little soft goats cheese. It seems to be cows dairy that is the villain. I still drink a lot of green tea, mainly Clipper leaf tea and also drink leaf dandelion tea. I am still eating my bitter apricot kernels.
Like you I use olive oil and eat avocados. I try to have a good mixture of nutrients and everything in moderation. My one treat is Montezuma 100% cocoa dark chocolate. It is full of magnesium.
Since all the talk about a healthy gut and the microbiome, I have added fermented foods to my diet, such as fresh sauerkraut, tempeh, miso, and karma kombucha drink, which is fermented green tea. I have not tried kimchi because it smells too strong for me, or natto, which I have not seen anywhere.
I do believe that all the talk about a healthy gut makes sense and especially about the different microbiome centres in the body. I have a feeling that all my troubles might stem from gum disease. My dentist has told me it is genetic, inherited from my parents and that there is nothing to be done except having good hygiene. The alternative is to be on antibiotics for life. No way José. I remember that article in Nexus about the dark side of antibiotics.
I am sure, Mary, that you are following a healthy diet and that your meal with ground buffalo, grass fed meat, will have done you nothing but good. It is important that we enjoy our food.
I can understand about beans. I think we need to eat them in small amounts. I try to eat chickpeas because of their calcium content, but also love red kidney beans and lentils. This week I tried some black beans and enjoyed them. I do buy the beans and pulses in cans but make sure they have nothing else in them but salt.
I did think highly of that vaccine video I saw and hope it may come around again so that I can see more. I do think that Ty Bollinger is forthright. I wonder what series he will do next? I would quite like one about the truth about food and all the junk that is now promoted as 'food'.
I did see that in the US you have also had a bad time with a flu epidemic this year. I do not think the flu jab has done much good.
I am against all these flu jabs in young children. I recently read an article about mumps and how children who were vaccinated as babies are now getting mumps in the 13 to 20 age group. What a mess!
I was appalled by what you said about a programme coming from your CDC in 2020 called Healthy People 2020. I hope people resist it. Our governments are getting too dictatorial and, as you say, it is all Orwellian. I cannot believe that in California you must have the vaccinations to attend state schools.
We are living in a very strange world and in the UK we are probably one of the strangest countries. Political correctness has gone mad. The latest thing coming from the Labour Party, is that men can just say that they are a woman and then the Labour Party that is pushing all-women candidates in all the elections will push them forward as 'women' candidates!! it is mind boggling.
That is about all for now. I have lots of things I want to put on the thread but I have got to find the time.
Do you get the magazine What Doctors Don't Tell You or do you read it on line? I thought you might be interested in a few headlines, given all that we have been discussing lately. From the January edition I have picked up on:
Foods that keep your teeth healthy.
Is bacteria the secret cause of cancer?
In February:
Does gum bacteria cause heart disease?
There are lots of other interesting articles.
It was in the January edition that I read a long article by the dentist Dr Steven Lin, which led me to buy his book. His article was under Healing Foods and entitled Raising a Smile – There is such a thing as the optimum diet for your teeth and gums. Dentist Steven Lin offers the basic rules "Dental diet, plus a few deliciously healthy recipes".
That is it for now.
Love.
Sylvia xxxx
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Hello everyone,
I thought I would post this small chart about the different groups of chemotherapy drugs. Some of them will be familiar with you and others may not be. You wil see that some of the drugs you know are in different groups.
I have taken this chart from a reference book that I keep here and update every time a new one comes out. The title is "New guide to medicines and drugs – The complete home reference to over 2,500 medicines". It is by the British Medical Association (BMA) and is the eighth edition and fully revised and updated. It is published by DK in 2011.
It says the following about the action of cytotoxic anticancer drugs.
"Each type of cytotoxic drug affects a separate stage of the cancer cell's development and each type of drug kills the cell by a different mechanism of action. The action of some of the principal classes of cytotoxic drugs is described below."
I think Sarah will be interested in all of this with her mother going through chemotherapy for the first time.
I hope this is of interest.
Best wishes
Sylvia xxxx
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Hello Everyone
So sorry Sylvia you had problems with the flu vaccine. I've received one every year since 2003 when I had the flu twice. Since, I've not had even a cold. I get the injection every October. My husband was staunchly against the flu shot. In 2013 he got the flu twice. Since, he has gotten the flu shot each year. Then my baby daughter is a pharmaicist. She gives the shots regularly. She won't take it. She says either your body 'accepts' the shot and it's antibodies or it does not. She makes sure we take it, but she won't for herself. Interesting eh?
Hello to Mary, Marias, Hanieh and Lilyp6. Hope to hear from 4everstrong, Kathseward and others I may have missed. Working towards my new normal.
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Hello Val,
Thank you for your post. It is always nice to hear from you. I was interested in your comments about the flu vaccine. I saw that your history with breast cancer goes back 28 years. I do admire you for all the great strength you must have. Keep posting and keep well.
Love
Sylvia xxxx
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Hello everyone,
I am not sure what is happening, but I just saw by chance that bc.org is proposing changes to the forum and that posters do not seem to be very happy about this. I saw a lot of posts objecting to the changes on one of the threads in the triple negative forum, that was started by the moderators. Apparently the changes will cost a lot of money.
There is a link to click on to find out information, but I have tried it several times and it comes up with the page is not found.
Please read my post and if you have any information about the changes let me know. Unless we find out what is proposed, we cannot have an informed opinion and make it known.
Many thanks.
Best wishes to all.
Sylvia xxxx
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Hello Kath,
I just wanted to say many thanks for that link about the shingles vaccine. I printed it out and read it very carefully. I was impressed at how straightforward it is to understand, especially compared to the muddled explanations we get here.
In this country everything is always a muddle. My own GP told me she was not quite clear about the shingles vaccine and age eligibility.
It is the same with the referendum to leave the EU. The people spoke and voted to leave the EU. That was in June 2016 and the politicians are still talking about it. Brexit meant Brexit. The people wanted out 52 to 48. Since then we have had seven days a week chewing the cud. Our politicians talk about we cannot have hard Brexit, we might have soft Brexit and we may have RINO (Remaining in not out) but looking like we are out!!!
We live too much in the past and cannot live in the present or plan for the future.
It is about time we said like it is and that is how the Australians and Americans are, at least compared to the Brits, whoever the Brits are!
Keep posting.
Love.
Sylvia xxxx
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Hi, Sylvia
I found the site you mentioned with the info about possible changes to the Forum. Like you, I could not get anywhere with the links. There is one post from the Moderators saying they adore this BC Community forum and would not make any changes that separate people. Not sure what is happening, a couple of the posters seem to think it might become more like Facebook, I suppose it might become full of advertisements, if it is funding they are after. I hope that's not the case. I do remember to make a donation to them yearly, I'm sure there are people who can't afford it, with medical bills etc.
Mary
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Hello everyone,
I thought I would post this photograph of the latest sunrise in Exmouth.
Best wishes
Sylvia
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Hello Mary,
Thank you for making the effort to read the posts where people seem concerned about changes to the forum. I have got no further with finding out what is going on.
I do think there are too many forums and too many threads and that makes it complicated. It could probably do with a tidy up in that respect and also to get rid of threads that have been unused for years.
I wanted to let you know that, sadly, my friend and neighbour died on Tuesday afternoon from metastatic melanoma cancer that had gone to the liver. I feel very sad about this. She had been going through immunotherapy and we used to talk about each of her sessions. The treatment made her worse and it was stopped. She seemed much batter after that but then took a turn for the worse.
I am a bit confused about what immunotherapy involves. My friend and neighbour just went to the oncology ward where I had my treatment and was hooked up to a drip. Obviously the drugs were toxic, so how does it all differ from chemotherapy?
A Professor from Oxford University was on the radio this morning talking about immunotherapy and how it could be a possible cure for cancer. He said something about manipulating immune cells to kill cancer. I do not really understand this. It sound rather high-tech. Why not leave your immune system alone to fight cancer and why all these years have they been treating cancer with chemotherapy and radiotherapy which depress your immune system and, we are told not to take anything to boost it!?
Thinking of you and thanking you for your dedication to the thread.
Love.
Sylvia xxxx
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Hi, Sylvia
I had a very busy first part of week, and then yesterday when I woke up I was coughing a lot. I soldiered through the day but by last night I was exhausted. I had a long sleep and this morning I am very stuffed-up, and have a sore throat and headache. No fever, thank goodness. It's quite discouraging, I have been really trying to do things right and taking in the things that supposedly build the immune system but here I am again, with another virus apparently. Maybe it's as you say, maybe our immune systems are permanently weakened because of the chemotherapy. I preferred to think the damage to my immune system could be reversed. I have only one appointment today and I can easily cancel it, so I probably will.
I'm not sure what to think of the immunotherapy for cancer treatment either, from what I have read the side effects are the same as with the old chemotherapy drugs. It does seem better to stimulate the immune system to fight the cancer, rather than killing all dividing cells including healthy ones. But if that's true, why do these drugs cause the same side effects? I am really not up-to-speed on this treatment. I do believe I saw that Chris Woollams did not like the immunotherapy treatment.
Speaking of Chris, I have not been able to get to his latest post at all, maybe today I will have some time.
I am very sorry about your friend and neighbor who has just died. There is just way too much of this going on these days, and there are so many theories why it's happening. When I think back to my early years in the 1950s, it seems to me this is about when all the new products started to appear. Pest and disease control for crops, widespread use of plastic packaging, food that came in a box with mostly artificial ingredients. We did not hear much of any down-side to all these things, they were true wonders. Instead of a farmer sweating through his fields all day, and working at weeding with a hoe, he could apply a spray. People could move to cities and not have to worry about having a big garden and animals to supply food, they could go to a grocery store and buy it instead. As we moved farther away from our food sources, perhaps things started happening in our bodies too. You and I have read books, including the latest, "The Dental Diet", that say ingesting some of these things in our food, air and water can actually change our DNA. I wish I had some answers, I only seem to think of new questions!
Your picture of the sunrise is beautiful! There is always something to be thankful for, such a beautiful sight lifts the spirits.
I saw a headline this morning in The Daily Telegraph UK about Brexit. It says that it has been found that George Soros, the multi-billionaire man "Who broke the Bank of England" is backing a secret plot to overthrow Brexit. I have seen his name involved in many nefarious schemes, it seems intolerable such a person is allowed to use his money to try to shove through what he wants, no matter what the citizens want.
I will talk to you again soon, Sylvia.
Love, Mary
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Hello everyone. I have been reading the posts here, but not commenting. However, I want to add to my knowledge in any way I can and Will continue to participate in this forum. My heart goes out to you with the issues that you are having; please know that I have you in my thoughts and prayers. I feel like a fraud posting my news here, because I feel like I hardly deserve your support and kindness. We saw the radiation oncologist last week and he told me that he was signing me off to the medical oncologist and would not be seeing me again. When I asked him if I was still considered to have cancer, he said no, you are cancer free. This surprised me, because when we met him in November, he told me there would always be a possibility of recurrence because I could have cancer cells that were too small to be picked up on a scan. He also told me that he expected the medical oncologist to sign off on me as well when we see her in April. This is kind of scary to think of as it is barely six months since I had my surgery And not quite two months since I finished radiation. I hope he was wrong in makingthat statement, because I thought the norm Here in Canada is to follow up on a patient for five years. Have any of you experienced something like this?
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Sylvia my sincerest condolences. I’m so sorry to hear about your friend passing.
Xx
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Hello Nancy,
Thank you for your post. We are very happy to have you in our group and to help you in any way we can. Try to post when you can because without posters the thread will disappear.
You must be glad to have finished your radiotherapy.
I was not surprised that you have been signed off from your radiation oncologist, but I am surprised that you are not going through the usual check ups after treatment finishes.
When we have finished treatment, which is a mixture of surgery, chemotherapy and radiotherapy we usually get a pathology report and if all is well, we are told that we are NED (no evidence of disease). This means there is no visible evidence of cancer. We often have scans to back this up. This does not mean that we are cured of cancer and as we all know there is always the possibility of a new primary, a recurrence on the same site as the original breast cancer tumour, or spread to other parts of the body.
Of course, with your treatment finished, and there not being any evidence of disease, you will not be considered to have cancer, but it does not mean you are cured.
In the UK it is usually standard practice to continue having regular check ups that alternate between your medical oncologist and your breast cancer surgeon. It statrs off with check ups every three months and after a couple of years this goes to six months. After five years you can often be discharged. In my own case I got discharged from visits with the breast cancer surgeon but continued for another five years with the oncologist, seeing her once a year, and then was discharged.
When you see your medical oncologist you should ask her whether she will be seeing you for regular check ups, and if not why not? There are always variations in different individuals. You should also ask about when you should have mammograms, if you want them.
You might want to be cautious since I see from your details that you did go from DCIS to IDC and from stage 0 to 1A.
Take care of yourself and remember to eat healthily, keep mentally and physically active and get back to a normal life.
I hope this helps.
Love.
Sylvia xxxx
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