Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for your post. I agree that Christmas is not what it used to be and I do not bother with it at all. It all seemed to die out when parents died. I cannot stand looking at all the shops overloaded with junk. I think of all the valuable resources in the earth that have been used to make all this stuff, especially all the tinsel etc., not to mention the adulterated food.
I have a friend who owns pet shop and I was astonished at all the extra stock for pets for Christmas, such as venison chews for dogs, Christmas clothing and toys.
I was glad to know that you like the look of the fruit cake. I thought it looked good as well. We always used to have an iced fruit cake, with marzipan at Christmas time, along with a Christmas pudding and mince pies. All of this would be home made. I am wondering whether anyone will try making this cake. I would do the vegan version since I think we should avoid dairy products. I would cut out the sugary stuff as the dried fruit will give a sweet enough taste.
There are plenty of Christmas cakes around the UK in the shops but I would not touch them.
You asked what treacle is. It is commonly called golden syrup and is very runny like runny honey. The well known brand was and still is Tate and Lyle Golden Syrup. Tate and Lyle was a very famous sugar company in East London, but it has gone now. I would not think it is needed in that cake. In Canada I think black strap molasses was much more common than syrup.
That article that I posted on inflammation, if I remember correctly was in the magazine What Doctors Don't Tell You, the December edition. What it was saying was that most of our chronic illnesses start off with inflammation over a long period of time. With obesity it is obesity that causes the body to have inflammation. It is not the inflammation that causes the obesity. It should be common sense that carrying a load of extra fat around will not be doing your body any good.
As for Brexit, I think that the writer George Orwell, famous for his novels 1984 and Animal Farm, would be having a field day with all the newspeak that is going on. In the words of someone who quoted the following to the tune of I'm dreaming of a white Christmas, I feel the same: I'm dreaming of a real Brexit, just like the one I voted for. We are being told that we are going out but everything Theresa May and her comrades in arms tell us it is plain that we are staying in, but out only in name! It is a total farce. It is no wonder that Brexiteers, the true ones, not the ones in charge and pretending, are saying Theresa the Appeaser. They were likening her to Neville Chamberlin and Peace in our time. They were also likening the EU to the Third Reich. I do not think the government, the opposition, the politicians, the establishment etc. have a clue what ordinary people voted for. It was first and foremost control of our borders and the right to say who comes in and who does not.
This government will not give any time to the issues that matter on a daily basis. Everything is game playing about Brexit. The NHS is sinking fast, there is no real will to build affordable homes or social homes and there is no care about poverty and homelessness.
That is about all for today. I do want to post more about lymphoedema and also something I have learned today about something called a vivascope in use in Australia and probably elsewhere that will not be in use for about another ten years in this country. Have you heard of it and is it use in the US? It is something that is being used in Australia to detect whether moles are malignant or not and it does away with cutting them out for biopsies etc., with all the problems they cause.
I shall talk again soon.
I hope Hanieh will be fine and I am once again concerned about Marias. She is too silent.
Do you know whether adagio has gone on a trip? We have not heard from her in a while.
Take care. It is only Tuesday, but it feels like Friday!
Love.
Sylvia xxxx
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Hello Mary and all,
I am having a day of eating all raw foods, so this is a salad that Raymond and I shall be eating today.
By the way, Mary, I have not forgotten that link to MEDPAGE today that you sent me. I found it very interesting and I shall try to answer tomorrow.
Thinking of you and all in our group.
Love.
Sylvia xxxx
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Hi all
It's me on my first chemo.
And these are my drugs
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Hi, Hanieh
You look so lovely and calm, thanks for the picture. I never saw the boxes the drugs came in before, mine would come out in the little bags and get hung up and that was that. Thanks for posting that, you have made it very clear what you are getting in your infusion. 2 anti-nausea drugs, neupogen to build up white cells, and the 2 chemotherapy drugs. And you had mentioned the steroid.
I will be thinking of you!
Talk again soon, love, Mary
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HI, Sylvia
I will be back later to answer your post, my sister-in-law's mother has died, and I am off to the funeral. She was 92 and suffered from dementia for years.
Talk later, love, Mary
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Hello Mary,
With reference to the article about the problem with arm swelling, I think it is important that all ages of women get counselling before surgery. We also have to remember that with breast cancer, having your lymph nodes removed is not the only reason that you get this swelling and problems with arms. I think doctors tend to think that how you look and how you are affected is less important if you are older. That is ageism! We have to remember that having a lumpectomy with no nodes removed can result in swelling in the breast and chest area. That is why there are compression bras and garments for women affected in this way. Chemotherapy, especially the taxanes, can also cause swelling and of course radiotherapy, so there is no escape. A few posts past I did mention how the taxanes cause this.
It is all very common and has been largely ignored for too long. Patients have to know exactly what their treatment will be and how it is going to affect them. Treatment should be aiming not to hurt women and no to hurt their bodies. The Hippocratic Oath says that doctors should do no harm.
I think that, in the article, there is too much detail and too many statistics for ordinary people to absorb.
When swelling does appear shortly after treatment, or many years later, treatment needs to be swift.
I am quite concerned about how behind we are with cancer treatment in the UK. It is ironic that patients are travelling abroad to what are supposed to be poorer countries to get treatment not available here, such as proton beam therapy.
Everything with cancer is governed by NICE (National Institute for Clinical Excellence) and NICE is all about how much a treatment costs.
I discovered recently that in Australia they have a video microscope that can test suspicious moles to see whether they are malignant or not without cutting the moles out and sending them off for biopsy. A lot of these biopsies turn out to be non-malignant but the patient has been cut and left scarred. We are not going to be able to get this on the NHS and it looks as though nothing will be up and running for ten years.
If you have a mole that needs looking at, you have a biopsy. In patients with a mole in the same arm as they have the lymphoedema or swelling, they are not supposed to have anything done to that arm, but surgery is carried out for a biopsy and the patient is exposed to infection that can cause cellulitis and urgent need for antibiotics. I think in this country we need to up our game. The powers that be are trying to run a 1948 National Health Service in 2017. That is not on. We have a huge population and expensive treatment and the service is underfunded.
I do hope all went well at the funeral today.
That is about all for now.
I do hope we hear from Marias soon. I am sure she is having a difficult time.
Love.
Sylvia xxxx
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Hello Kathy, and LoveandLight,
I have been thinking about the two of you, one looking after a sister, the other after a mother, and wondering how things are going for you and of course for your sister and mother.
Fond thoughts.
Sylvia xxxx
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Hello everyone. It has been a while since I was on here. I have just completed 16 treatments of radiation, and now am hoping to find ways to reduce risk of recurrence. I haven't had a chance to catch up on posts,so hopefully tomorrow I can do that. I hope you are all doing okay.
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Hello 53nancy,
Thank you for posting in to update us on your treatment. Congratulations on having completed 16 treatments of radiation. You can now look forward to getting back to a normal life.
Please try to read all the posts that you have missed, as there is always a lot of important information being posted.
We have been talking a lot about lymphoedema, a swelling that can occur after treatment or even a long time afterwards, as a result of damage to the lymph system during surgery, and radiotherapy, as well as chemotherapy (which you are fortunate not to have had). The swelling can be on the arm where you have had lymph nodes removed, or on the body where you have had a lumpectomy. Keep an eye on these areas and keep an eye on any swelling.
As for keeping recurrence at bay, we all believe on the thread in the importance of healthy eating, Mediterranean/Rainbow diet. It is important to keep physically and mentally active and to avoid negative stress.
I hope this helps.
Keep in touch with us.
Fond thoughts.
Sylvia xxxx
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Hi, Sylvia
Responding to your earlier post.......I do think the younger people are hungry for some tradition, it just seems to have gotten lost, when referring to Christmas, in a flurry of commercialism and plastic. I was brought up in a religious home, and that would bring along its' own traditions. That seems to have become watered down as well from what I can see.
I was a little surprised to see that blackstrap molasses was more common than syrup when you were in Canada, I guess because when I think of Canada I think of maple syrup, but then Canada is a very big country! We used a lot of molasses at home because my dad could grow the sugar cane and make the molasses himself. I keep a couple of jars on hand now.
Yes, I agree that chronic inflammation is very hard on the body. My acupuncture doc was recently talking about it too, and about the difference between chronic inflammation and inflammation such as from an injured body part that causes pain and swelling.
As for Brexit, The Wall, and our countries' assorted problems.....you can guarantee that while the pols are out talking about all the wonderful things they have done, behind the scenes their little helpers are making sure that none of it ever happens the way it is supposed to happen. Because at the root of it all, they think we don't know what's best for us, and they do.
I think Adagio would have told us if she was on a grand trip, perhaps she has taken a jaunt somewhere.
Your salad looks beautiful, I eat something similar every day but I put lime juice and olive oil over it and mix it up.
In reference to the MedPage Today article, I posted it partially because it seems to show how the docs are realizing now how some of the side effects of all this treatment affect women, and perhaps they are interested because it is happening to more and more younger women. For whatever reason, at least the side effects seem to be getting more notice, I have seen also there are many clinical trials going on about CIPN, neuropathy. I thought the article was quite easy to understand, better than some!
I am sorry about what seems to be the lag in your NICE treatments and the long times waiting for this treatment. Our system is headed the same way, there are more and more people using the system, and fewer people paying for it, and there is no free lunch.....or healthcare. We do have a lot of the new technology here, but then I read about things that are only in other countries now because our FDA won't approve them, and I'm not sure what to think about that. Some of our processed food products still contain ingredients that have been banned in other countries. I am aware and do not eat these foods, except occasionally if at a restaurant where one has to choose between the lesser of evils. When I am driving I always notice all the fast-food restaurants I pass by, and the chain restaurants; and they always seem to be busy. You can bet that these places are using highly processed foods to produce meals quickly.
Yes, I think Marias is probably very worn out from all she's been through, I hope she is able to get good rest.
I also want to shout out to Kathy and LoveandLight, I hope they are taking care of themselves as well as their patients!
The funeral I attended yesterday was for the mother of my traveling buddy. She was 92, but had been in a nursing home for many years and suffered from dementia. She did not recognize her children or grandchildren for many years. I was reading her obituary; she raised 3 children, kept a large old house, and had many different jobs and interests. It seems a sad way to end such a life, to be kept alive for years while being largely unaware of anything, but it is all too common these days.
I will talk to you again soon, love,
Mary
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Hi, 53Nancy
Good to see you again, I am so glad for you that you have finished radiation treatments. I would say most of us here are all in various degrees of okay, some are still going through treatments and some through additional treatments.
It's probably safe to say we are all with you and trying to prevent recurrence, I hope that is possible. Are you involved in the Christmas rush? I wonder if you have had snow, we have not and I would like to see some. I always enjoyed getting all booted up and walking in a winter wonderland, haven't had that for a couple of years.
Talk to you again, Mary
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Hello Mary,
Thank you for your post. I always find what you have to say interesting. I do not know if younger people are interested in tradition. Here in the UK I find everything so different and the country is nothing like the one I was brought up in.
When I was writing about syrup, I meant the Tate and Lyle's Golden Syrup, which I think is peculiarly English. We used to have steamed puddings with this syrup poured over it. When talking about Canada and black strap molasses being more common than syrup, I was talking about what we know as syrup in the UK. Of course maple syrup is part of Canada, but I do not know if it is in every Province. It was certainly popular in Quebec and Ontario.
As for inflammation, your acupuncture doc is right about the difference between chronic inflammation and the inflammation from injury, which would be termed acute.
I think people here in the UK are getting fed up with all this manipulation of and scheming against Brexit. Parliament was at it again yesterday. We are never going to get the Brexit for which we voted. I think that Theresa May is being victimised as a woman against a horrible lot of men, both in the EU and in Parliament. I think the Conservatives and Labour are past their sell by date and we need two new parties and to drain the swamp of all the career politicians. Really Nigel Farage was the only person to deal with the EU bureaucrats. It looks as though UKIP is of no consequence without him as the leader.
I think it is high time that the long term and serious consequences of cancer treatment were given more publicity and more interest shown to try to prevent them. We must keep talking about peripheral neuropathy and lymphoedema. I do hope there are discussions going on about these and other side effects on the cancer groups on Facebook.
I think I shall have to finish for this evening but I shall try to do some tomorrow. I shall start on your last post at where you mentioned NICE and the FDA.
I was interested in what you said about being brought up in a religious family. Have you traced your roots? I know that Americans like to do this.
Thinking of you.
Love.
Sylvia xxxx
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Maryna8, no we don't worry about the Xmas rush. We had fabulous weather for travelling for treatments and now winter has shown it's face. Last year we were under three feet of snow by the beginning of December. Tonight we have freezing rain and snow is forecast for tomorrow. Do you mind if I ask how you managed with the chemo drugs? Those were the ones that were recommended to me, simultaneously for four sessions but, because all tests came back negative for cancer, I said no to chemo, but will consider it if there is recurrence. Have a wonderful holiday season
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53Nancy
I got up early this morning and was looking around the Triple Neg, I read your story about your cancer journey on the "Tell your Story" Thread. I see that we are about the same age, I am 65. I was 61 when I was diagnosed in 2014. My husband died in Feb. 2015, he had several serious issues going on, heart, lungs, and kidneys. Just too many things going on and worsening together. Things really started going downhill for him in about 2011. We also had an old cat, after having many dogs and cats over the years we were down to one senior-citizen cat, and she died last year in the fall at the age of 21.
I was absolutely stunned when I got the diagnosis of TNBC, I was so accustomed to taking care of things, and taking care of my husband, and suddenly I was wondering who would take care of me? Things worked out, and we survived all that, but it was a very tough time. While I was having mastectomy, and chemo he was in and out of the hospital and on a quite strict diet at home, to the best I could manage.
As to the chemo drugs, I can only tell you how I managed, but everyone is different. It was hard on me, but I was given a 3-drug cocktail the first time, and became so weak with neutropenia and a fever that I was hospitalized. The doc then split the drugs and I did much better. If you look at patients history who post here, their regimens are usually 2 drugs given together, and then 1 drug, usually the Taxol or Taxotere, given by itself in smaller doses. That seems to be much better tolerated by people, and many people sail through the chemo with no major problems. Our Sylvia who started this thread is one of those, she did not have any problems, lost no weight, and kept a great attitude.
I do hope your husband is doing well, I suppose he has had his heart surgery by now? And a hernia operation, that's a lot. My husband also became quite hard-of-hearing, I blamed much of it on the very strong antibiotic he was given after a knee surgery that became infected in 2013. That was one of the side effects of that particular drug.
Hang in there Nancy, you have a lot on your shoulders, I do understand.
Take care, talk again soon,
Mary
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HI, Sylvia
I will answer your post tomorrow, just ran out of time today.
Talk soon, love, Mary
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Hello Mary,
I do think that our NHS system which was a wonderful introduction to proper health care in 1948 was our finest moment in this country. It is now underfunded, understaffed and overloaded. NICE is a fairly recent introduction and it decides on what drugs and treatments will be allowed on the NHS. It seems to be more based on money than anything else and it is so slow to approve things. What is so unfair is that the treatments are available privately, so that you end up with double standards and you get treatment available to those who can pay and unavailable to those who cannot. I do remember back in 2005 that women were having to fight for the drug Herceptin to be available on the NHS. We also have discrepancies between the different parts of the UK, especially Scotland which really often works as a separate country and that has got worse since devolution. Wales, Scotland and Northern Ireland all have devolved governments but we in England have no devolved government and thus no English Parliament. I think we should have one and that we should be a federal state with the Parliament in Westminster becoming the federal government and we should have an elected head of state, a president. Given the almighty mess that Brexit has become, I do not think there will be a federal government any time soon.
I have not mentioned it on the thread, so far, but along with the lymphoedema problem on my right arm, I also have a problem, or potential problem with a mole on the same arm as the lymphoedema. The GP had a look at it when I was at the surgery about the lymphoedema and referred me to Dermatology at the hospital in Exeter, which is my local hospital. The GP said it is what is known as a dysplastic mole and should be looked at and removed for a biopsy. This has made me very anxious, not only about the mole, but also the fact that it is on the arm with the lymphoedema, which, as you know, we are told should not have any injections etc. I saw the consultant at Dermatology and expressed my concern, but she says I shll be alright and if there is a problem I can take antibiotics. You know that I hate taking pills and having read that article about the dark side of antibiotics, I do not feel too happy about taking them. I feel that cutting into that arm is going to open me up to infection and cellulitis.
To sum up, my appointment to have the mole removed is on December 29th. That rather puts a damper on Christmas.
I shall need stitches in for a week and shall have to wait for two to three weeks for the result of the biopsy.
I have been researching about moles etc. and once again I have discovered that we are behind the times. We do not have in use under the NHS a standard procedure available elsewhere, for example Australia, for dealing with moles. This is called a Vivascope, which is a very powerful microscope which offers a virtual biopsy by looking at skin cells in depth and showing whether there is malignancy or not without cutting into the skin for a biopsy. Do you have this in the US in use? I did ask this before but nobody has answered.
NICE will not approve it here and wants more research, so it will not be available for about ten years, but I think it is available privately in London.
I feel this would be so useful for all patients, but especially for those with lymphoedema to avoid cutting the skin unnecessarily.
As for food products, I just think that the food industry has no moral conscience. Like the pharmaceutical industry, it is concerned first and foremost with making money. The latest news here is that the makers of Roundup, a weedkiller, will be allowed to produce it even though we are told it is deadly. There is no knowing what is in our food and it seems that fruit and vegetables have a cocktail of deadly chemicals sprayed on them. Is it any wonder there is so much cancer. I buy organic whenever I can, but I always have doubts about whether they are organic.
I agree with you about fast food outlets. They are probably the busiest places here in Exmouth. They have just doubled up the drive through for McDonalds because it is so busy and it is the same for KFC and Dominos Pizza.
It is a shame that there is still no news from Marias. As you say, with all that she has been through, she must be worn out.
I do hope that Hanieh is recovering nicely from that first chemotherapy infusion.
There are still lots of people viewing the thread, but the posts are few. I still see threads keep being created on the Triple Negative Forum, asking questions that could be answered here or on the TNs.
I am still doing some thinking about this thread, because, basically, we have no Brits active on it.
Thank you, Mary, for the tremendous effort you make on this thread and thanks to Hanieh, Kathseward, Pam, and Nancy for the contribution they have made this past week. I suppose others could be busy with Christmas or work. I do hope we shall hear from Lou to let us know how she is getting on back at work.
If you get a chance to read the article The Dark Side of Antibiotics, I would be interested to know what you think.
I have another short article entitled Drug News – Antibiotics block our immune system from fighting the bugs. I shall write more about that later. We all know that sometimes we have no choice and we have to take them.
It is very sad about that grandmother. Dementia is the worst thing that can happen to anybody.
I remain very concerned about all the younger women that are posting about being diagnosed with breast cancer. This is not normal and something is very, very wrong.
That is all for now. It is a miserable December day here, with no sun.
Love.
Sylvia xxxx
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Hello everyone,
I am posting my story that is somewhere else on the forum, so that anyone posting or viewing on here with a breast cancer diagnosis with triple negative receptors can see it. I am not sure how much looking around the forum the newly diagnosed carry out.
As of Wednesday December 20th it will be exactly 12 1/2 years since i was diagnosed. I have had no problems since then until now, when a few months ago lymphoedema appeared in my right arm. I do not know why. It was a few days after a flu vaccine. I had not had one since 2005 when I was advised to have one before starting my breast cancer treatment. Please make sure that you ask about lymphoedema. It seems to be a much neglected subject. Do not be afraid to ask questions when you are newly diagnosed and throughout your treatment.
Best wishes to everyone.
Sylvia xxxx
This is my story:
"I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.
"I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.
"I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.
"That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.
"Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.
"The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.
"At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.
"In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.
"I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.
"Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.
"Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.
"I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.
"When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.
"Next June 20th it will be thirteen years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.
"Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.
"As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.
"Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.
"I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can."I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.
"Most hospitals here have charities offering all kinds of support to cancer patients.
"I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.
"Breastcancer.org is a wonderful forum and providing a marvellous service."
--sylviaexmouthuk, United Kingdom
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Happy Sunday Everyone,
Sylvia, I still have not have time to get back to you about your post that included the recipe. I have only about 10 minutes before a class this morning, so I will get back in more detail. Also, Mary, you posted some very intriguing ideas about celebrating the holidays that I wanted to discuss.
For now, I'll just have to say that we'll be thinking about you on the 29th, Sylvia, when you have your mole checked out. I wish you had a non-invasive way to get some results, and that you could find out without waiting. I agree that so many of our companies are without moral conscience, and simply serving greed. As for drive-throughs, years ago that was me, driving, not walking, to lunch, and eating junk. I'm happy that's behind me.
I've been completely overwhelmed with events at work and my own simple holiday prep. I'm trying to pace myself, but not very successfully. I found the idea online to make a "Grinch" head that uses up my still-good Halloween pumpkin, and I'm really proud of it. Do they show the Grinch cartoon in the UK? I am not a crafty person, and could never have thought of such a thing myself. Bless those who can. I'll write more as soon as I can.
Cheers, Pam
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hello you all, Im gettingI'm better off my high pressure. I have no good days lately. A month ago of my thyroid operation, two months of the operation of the ovaries and the completion of radiotherapy. I am slowly improving from all these interventions. my scars are going very well and I continue in the lymphatic massage three times a week. I do not know that all of this made my alterial pressure go up and also im taking 150 grms of eutirox, and 2.5 grms of Letrozole,
Be the best you can every time
Abrazos
Marias
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Hello Pam,
This is just a quick word and I shall write more tomorrow. I do enjoy your regular Sunday posts. For tonight I just wanted to say that I really liked your Mr Grinch and I am sure it would be a great hit anywhere it appeared. I think you have an artistic touch.
Fond thoughts.
Sylvia xxxx
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Hello Marias,
I was just about to close the computer for tonight and I suddenly saw that you had posted.
I was so glad to hear from you and to have some news. Mary and I have been very concerned about you.
It was good to know that your high blood pressure is going down. Try to relax and as the stress from all of this gradually improves I am sure your blood pressure will get back to normal.
It is not surprising that you are feeling tired. The thyroid medication, what we call Thyroxine, will gradually get you back to normal.
You have been through a lot of surgery and it will have taken a toll on your whole system. Give it time to recover.
Eat healthily to get nutrients back in your system.
Because of my own problem with lymphoedema in the right arm, I am very interested in what exactly is done at your lymphatic massage three times a week.
Are you wearing any compression garments? I have been given a compression sleeve which I am supposed to wear all day and especially when I do the recommended exercises. It has to be removed at night.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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HI, Sylvia
I am finally getting back here, it has been a mad rush with things turning up and unexpected occurrences. I suppose it's a sign I'm feeling better than a year ago this time, because I am doing more. I put up more Christmas lights and accepted an invitation to a card party last night. I did eat some of the salty snacks and I can tell it today too.
I see that you are suffering from a suspicious mole on your arm. and it has been found to be dysplastic. You are between a rock and a hard place, I think. I understand your reluctance to get an infection and take an antibiotic, but you certainly don't want to take a chance it could be melanoma. I haven't heard of the Vivascope, I don't think there are any around here, maybe in our big cities. I will check on that. It sounds wonderful to be able to just go under a microscope and have a biopsy. But I certainly do understand your fears, since you are now suffering from symptoms of lymphedema.
I did a quick check of Google and see that in July 2016 the FDA was still studying test results of the Vivascope, it didn't sound like it was approved yet at that time. I don't see how it could be harmful, so I suppose it is a question of whether it works well enough. Our FDA is famous for often dragging their feet with these things, long after other countries.
Speaking of inflammation, I had a cortisone shot in my rt. knee Friday. My knee has been diagnosed with arthritis and meniscus tears, so we are trying the injection since I am trying to figure out how to be more active with less discomfort. Friday night was very unpleasant, and I think I am figuring some things out. It seems that every time I have an injury of any kind, my nerves will go crazy. So imagine that an injection is an injury. About 3 hours after the injection, about 6 PM, the nerves in my legs and feet became very painful, very tingly and I had an amazing number of foot and leg cramps. By 11 PM the same day it was really calming down and then stopped. I can only think it is a side effect of the peripheral neuropathy, because I do have the neuropathy in my legs as well as my feet. When I was injected above the ankle for a varicose vein after chemo 2 years ago, it was very painful for quite a while. When I was injected BEFORE chemo, I had no problems. I am really glad that what is going on in my feet and legs has subsided to its' normal state, which isn't really normal.
We have traced our roots in a way, I was raised in a county where 95% of the inhabitants are from a few areas of Germany. We had many relatives who fought in World War II over there and they came back and told us they found my father's side of the family was from Koeln (Cologne)in Bundesland or North-Rhine Westphalia state. Which didn't tell us too much because my great-grandfather and his twin were the first to come over here, and that's where they came from, what I am saying is they couldn't find any further information about it. My mother's side was from Bavaria, but I don't know exactly where. And when I say religious I meant daily prayers before meals and rosaries every night, never missing Mass and going to religious elementary school and taught by nuns. That is quite different than most families these days, but maybe I would be surprised if I really knew.
I know that you are a champion of the NHS, I just could never see how it could work. If everybody can get all the services they want, but not all people are paying into the system, it's bound to get overloaded and bog down. I think there will always be doctors and other medical workers who want to be paid more for their work, thus you have the private health-care where the patients can get more up-to-the-minute care because they are paying more. The people who are paying more are probably also paying into the NHS, but they have enough disposable income to buy themselves better care. I don't know what the answer is. Over here our medical system is rather a jumble, there is a little of everything.
I'm so sorry this further development of the dysplastic mole has come upon you, right now I am going to have to stop, but I will be back soon and write more.
Talk soon, love, Mary
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HELLO all of you
I do not use any glove or compression system on my arm. only the massage that is soft and ascending goes from the fingers to the arm, to the shoulder to the armpit, to the back and then to the side towards TO the center of the stomach. they consider that the organism must be taught to function without a lymphatic system in the armpit. and they teach the body another way for the lymph to reach the center of the stomach. So the massage is to teach the body another path different than what was used before removing the lymph nodes in the armpit.
I swell under my armpit and shoulder, and it hurts a bit to move my arm, when I go to massage this swelling decreases. They say that later I should go once a month even if there is no swelling.
Here it is usual for women who have had surgery in previous years to wear gloves and compression tights, but now with the innovation of lymphatic massage the use of these systems has been decreasing
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC50881... is about nordic walking and lymphedema
I find this too, https://fysio.dk/globalassets/documents/kurser-og-...
and I find this too:
https://europadonna-fi-bin.directo.fi/@Bin/288dcc9f333c4367496a0af223eb3900/1513579280/application/pdf/412890/Lymfaodeemaharjoitukset-Sarja%20I-%20Kuvat.pdf
https://www.europadonna.fi/@Bin/412893/Lymfaodeemaharjoitukset-Sarja+II-Kuvat.pdf
https://europadonna-fi-bin.directo.fi/@Bin/bf41ec1a940a500ee9d4f46a7843d8ff/1513579462/application/pdf/412816/Lymfaodeemaharjoitukset%20-%20Sarja%20III-Kuvat.pdf
https://www.youtube.com/channel/UCmiEFaurMlYNr9xRe...
I hope you have understood me, I used the Google translator to write to you
Abrazos
Marias
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Hannie, I hope you feel well with your first chemotherapy and you are prepared for the fall of your hair. I remember that I had a treatment called FAC + TAXOL. I read your medicines but they did not seem the same as they gave me. I trust all this well with your family and with you-
you look so beautiful and calm in your picture, thanks for share
Abrazos
Marias
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Mary I hope you continue feeling good with your feet and knees, and that you remain active.
My brother joined https://www.familytreedna.com/?idev_id=1625&utm_so... and has found many relatives from other parts of the world in an incredible way. maybe with that you can find more relatives from germany.
abrazos
Marias
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Slvie, I hope everthing go good with your mole.
Many years ago, the doctor take out more than 30 moles of my body, face and head. no one was bad. I have a lot because of the genetic and the sun I take when I lived in Cartagena. The wounds of the biopsy are usually very small and they heal quickly. I trust that having lymphedema does not complicate it. in which part of your arm is the mole
But also is someone is bad, I hope no, is a easy way to take care of this kind of cancer. dont be worry so much.
The Vivascope is a new technology. I did not know that I had just read in our FDA, "Invima" that its use was approved for 10 years in Colombia in 2016
Thinking about what you say about the use of pesticides Pendimethalin, here in Colombia glyphosate is widely used to fumigate coca plantations. but next to these plantations are the other vegetables that we eat daily. It is unreliable as you say you buy organic food because we do not know if it is true that it is organic. the best would be that one sowed and consumed healthy. but it is unlikely to do so. I'm using the translator so I trust you can understand me.
On December 2, I went to the nuclear medicine appointment in one of the clinics here in the city. the doctor who attended me told me that iodine therapy was necessary, it is a pill that I need to take, and to spend a few days in the isolated clinic while the radiation of the pill decreases and is no longer risky for the people who are there. around. the doctor also told me that thyroid cancer is endemic here in Cali, you do not know the reason, it may be I think of pesticides, water, and not caring for the environment in general. Sometimes I feel bad for having two primary cancers and I think I did wrong, which I did wrong, to which I explained that allowed me to develop these cancers one in the breast and another in the thyroid. Thyroid cancer has three lymph nodes with metastasis and this particular news has made me very sad, maybe like that June 20 of your story, I cry all day, but the next day I get up normal mood, sometimes I feel I need to cry a little more. When I was little I was bitten by a dog with rabies, so they gave me 40 injections against the rage in my belly. I ate a lot of junk food especially chicken and I imagine that they feed it as much chemical He lives in an industrial city for about 5 years, where they produce cement. I worked during my thesis in a coal mine underground, and I keep looking at what I have exposed and I think that this is what caused the cancers and they are all possible answers-
It seems that after the operation of the thyroid the parathyroids were not touched since the calcium and phosphorus levels are at the normal level.
I am still taking 1500 grms of calcium and one pill of vitamin d3 a day.
abrazos
marias
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Hello Galway 2017
When I was in 6 taxol I had a very strong flu with a lot of cough that lasted 10 weeks. improve a lot with eucalyptus in the fourth place in a pot of electric rice.
Take 3 antibiotic pills one each day. until the blood count showed that my defenses improved, although the cough persisted even after the 12th taxol.
the annoyance of the neuropathy is handled by the oncology doctor with vitamin b6. after finishing chemotherapy and having undergone radiotherapy, I was given 7 daily injections of vitamin b12, then one every week for 4 weeks, then 1 month for 4 months .. I have not put in the last months for the surgeries of the ovaries and the thyroid.
Next I'll go to the oncologist and I'll ask him if it's still necessary to put the next two I'm missing.
Now that I am taking Letroxole, I have felt my hands and feet warm and burning, so I have tried to keep them moist with cream and not stand for a long time or exposed to hot water.
Abrazos
Marias
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Hello to all the wonderful ladies on this thread - I have been super busy with family stuff, but I am well, albeit a bit tired at times but that I consider to be fairly normal. I had a short trip to Quebec to see my son and his family since they will not be coming to Vancouver this Christmas. It was very cold there with a biting wind. My new granddaughter (here in Vancouver) was baptized a few weeks ago so we had a family lunch at our house afterwards, which was lovely. My youngest son had a severe dog bite on his face and this was quite a shock for me - it was not his dog, but a dog that he knew. Fortunately, he is healing well. My other daughter and her husband will be coming from New York for the Christmas holidays, so I am looking forward to that very much.
Sylvia - so sorry to hear about the mole on your lymphodema arm - that is discouraging and a bit worrying since the lymphatic system is already stressed and further invasion may not help - but on the other hand, a mole has to be checked out. If the doctors are fairly confident that the impact will be minimal, I think one has to trust them - they are the experts after all, and we would hope that they would know. Having said that, I do understand your hesitancy about intervention. Understandably these issues will put a damper on the Christmas holidays for you. Please know that (along with the other women on this thread) we wish only good outcomes for you, and I send warm, loving and healing thoughts your way. You continue to be tremendous support for so many of us on this site - thank you.
Maryna - I just cannot imagine how stressful it must have been for you to have a sick husband while you were going through your cancer treatments. The human spirit is so incredible in that it enables us to do what must be done. You must still be recovering from the whole emotional aspect of your husband's death and your own diagnosis and treatment in addition to the physical part of the body taking time to heal. So sorry that your knee still causes you grief and that the neuropathy does not seem to improve - and yet you keep busy and upbeat - you are an inspiration. Are you singing in the church choir for Christmas?
Hanieh - what a shock it was to hear about your recurrence of cancer - going through chemo will have its challenges and losing the hair is just a small, but significant part of it. I send healing prayers your way and remember to take great care of yourself.
Marias - life does not seem very fair does it? Not just breast cancer, but thyroid cancer - so sorry to hear about this. Your body will need time to heal. I think everywhere there is so much pollution in our environment, that it must surely have some impact on the health of people. It sounds like you had a fair bit of exposure to pesticides and that could possibly contribute to cancer, but honestly I don't think any of us can know for sure what the cause is. We have to do what is best for us now and try to help our bodies to heal. I do not quite understand what you mean about the iodine therapy?
Pam - thanks for your lovely cheerful and thoughtful posts.
Wishing everyone a restful and peaceful Christmas season.
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Hi, Sylvia
I came back to finish what I was writing yesterday, and now there is an abundance of posts to go through. How nice that Marias feels well enough to describe what's going on in such detail, I'm so glad of that.
I have looked around a bit more and can't find where the Vivascope is used in this country. But, it could very well be used under a different name or something like that. I have found quite a few articles about research studies on similar equipment. I was only looking for Vivascope in the USA. According to Marias, it has been approved years ago for use in Columbia.
The RoundUp is indeed a problem, here it has been used for many years by farmers who saw it as a boon to their operations. Finally a solution to the problem of thick weeds that would smother plants before they grew large enough to shade the ground. Sometimes the RoundUP would affect the growing plants however, then the Pesticide sellers came out with genetically modified seeds that were termed "RoundUp-Ready", the resulting plants would grow no matter if the grower sprayed the pesticide directly on them. The farmers were assured it was safe, so they saw more profits and larger crops because of not having to worry about weed proliferation. It is widely used for weed control in many places, I have used it myself along fencerows and on weeds growing in the cracks of concrete. Now that I know the problems it can cause, I have rethought that practice. And I know many farmers who have started to produce non-GMO crops, however, their neighbor might not be growing them. They do have to have their crops tested before being named non-GMO, their is probably still a bit of GMO there because of other crops in the area. Nothing is perfect, that's for sure. All we can do is the best we can, either grow our own crops or buy organic and hope for the best.
The pesticides are probably one of the causes of the disease of cancer, the fast-food places are probably another piece of the puzzle. The high-fructose corn syrup is an ingredient in most of the things that are served in these places, this syrup is very bad for us. The food served in these places is also high in sodium and the meat that is served is usually fried in some kind of oil that will stand up to high heat, and sometimes the meat isn't all meat at all. The rate of obesity here is very high, eating thoughtlessly must be one of the causes.
I'm glad to see you posted your story again here, you are a very good example of someone who went into the cancer journey very thoughtfully, even though you were frightened and nervous. I'm afraid I jumped into it, just wanting to get it over with, and that haste may be blamed for some of the problems I have now.
I will let you get on with all the other reading here, and will talk to you again soon,
Mary
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Hi, Pam
I love your Grinch pumpkin, I just so admire "crafty" people, you did very well there. I was at a card party over the weekend and the lady of the house was also talented, we played cards in an area of their house she and her husband had remodeled, doing almost all of the work themselves. She said they figured out how to do much of it with YouTube videos. It was so attractive, and the finishing touches were things that she had created out of things she had found on a riverbank, a junk store, out in the woods and so on. My niece is the same, she loves to pick up old furniture at a cheap price and refinish it and make it beautiful. I think Pinterest and similar websites really inspire these young women, I look and admire but feel no urge to do it myself but wish I had a little of that craftiness in me.
The holiday practices I was talking about were from my childhood, I was trying to show the difference between then and now. The day of St. NIcholas, hasn't changed but the observation of the day is not the same around here anymore. Advent is still Advent, and perhaps the children still have the Advent Calendars, I do not hear about them however. It is just the commercialization of everything that has taken over, and I do not see how it can change unless people make a decision to cut out cellphones, TVs, communication with others, shopping etc. It's almost impossible to do all that, and I wouldn't want to either, so parents have a hard job of trying to instill some love of simplicity and shared traditions while the whirl of commerce goes on all around. I am probably just being somewhat nostalgic, the way things are now is the way most children will think is the way they should be, it's the way of things.
I hope things calm down at work for you, you will be getting some days off anyway very soon!
How will you spend your Christmas vacation?
Talk again soon, love, Mary
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