Calling all triple negative breast cancer patients in the UK
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Hi Cocolala,
No, I didn't have the gene test so it isn't a 'must'. Plenty of women get TNBC without it so I think they'll only test it for it if it seems likely.
I have no sisters or daughters so I'm not sure what use the test would be anyway.
Susie
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Hello cocolala,
Testing for the faulty BRCA1 and BRCA2 genes is not a must here for TNBC, but if you feel you would like one you could request it and see what your country's stance is on this.
I did see a geneticist nurse years ago when i was first diagnosed and I was told I would not get a test because of my age at diagnosis. I think the younger you are the more likely you are to get one. Of course there is always the option to go privately.
I do think genetic testing is becoming more common.
Remember that faulty genes do not necessarily go through the female family members. It can also go through male members. I have a friend whose sister died of breast cancer, and my friend, a female, and her three brothers all had genetic testing. My friend had it, as did two of the brothers, but one brother did not have it.
The percentage of breast cancers being caused by faulty genes is quite small.
Sending you best wishes.
Sylvia xxxx
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HI, cocalola
BRCA testing is done primarily on younger women because if the results are positive, it often passes to children. I was 62 and was tested because I have a sister 10 years younger, also because my insurance covered the cost. It is rather expensive, or it was 5 years ago. My results were negative.
I do know a family where the mother died at 50, was BRACA positive, and her 2 daughters also had the gene. They had the children they wanted and then had breasts, uterus, and ovaries removed. The 1 son had negative results on his test.
Mary
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Hi all, I see lots of conversation on the thread and read with interest. I am sorry to read about Marias and each one of you who is battling with this insidious disease.
I am still nursing my chest wound that isn’t showing any signs of healing just yet. I am now seven weeks out from biopsy. Today I saw my RO for 6mth review who recommends and referred me to a plastic surgeon to discuss a skin graft as an option. I am extremely wary considering the issues that have arisen with what should have been a straight forward surgical biopsy.
After seeing my RO I saw my surgeon and nurse who referred me directly to Hospital in the Home which is a service where they admit you to care that is provided in the home. I now have another negative pressure wound dressing called Activac. It is similar to the Prevena I had post op but battery powered and provides constant drainage (and in a very noisy fashion).
Hospital in Home means the nurses come daily to check dressing, change as required, do your Obs and provide medication under the hospital registrar. It’s a subsidized service which is great. The nurse said the Activac dressing increases wound healing by 60% but can’t advise how long it will take or even if it will ultimately heal.
The RO was doubtful suggesting skin graft a better option. I told both RO and surgeon that I won’t make any decisions on skin graft until I have had my next round of scans (late June) and can see if the latest dressing is helping me heal. If the wound gets worse I may have to consider skin graft to see if that will stop the wound spreading. I really don’t want anymore surgery to any part of my body.
It really is quite depressing but I need to find positives and make the most my health. The doctors are recommending cutting back on work. I’m still not ready for that. I have been getting confused about forward dates. I am hoping that is just stress and all that is happening just now.
I am sorry my posts are all about me and know there are many on this thread with their own frightening challenges. I do wish you all, each one of you, healthy or not, the best and that in each day you find something that gives you joy and that you treasure that.
Please know my thoughts are with you and I am very thankful to Sylvia for this thread and feel so fortunate to have found it. I may not post often but I will post when I can and when I have (hopefully positive) news.
Your BC friend - Helen x
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Hi helenlouise,
Good to hear from you. I'm sorry your wound is refusing to heal, seven weeks is a long time. I wonder if you had a low level infection after the biopsy? I guess that if this had been the case you'd have had a raised temperature and a blood test would have shown up any infection. You may have already mentioned this in an earlier post, if you have, blame my 'chemo brain' for not taking it onboard.
It can't be very restful having a noisy drainage system to cope with, but worth it if you finally heal. I can completely understand why you're less than convinced by the idea of skin grafts after your recent experience of surgery. Does your RO have any statistics on the success rate of skin grafting in similar circumstances?
As for the confusion you're experiencing, it's hardly surprising when you consider the strain you're under. Work and your work colleagues seem to make you happy. You'll know when you need to cut back and I doubt if you have to make any decision right now. Naturally, the doctors are thinking of your physical health, but psychological health is equally important - in my own view.
You have absolutely no reason to apologise for taking about yourself. We all want to hear your news and to support you wherever we can. It's through reading other womens' stories on the thread, that I've been able to put my own worries into perspective. I've also learnt a great deal about breast cancer, its treatment and the resulting side effects - things that the medics don't always pass on.
Hoping to hear some good news from you very soon. You're right, there's always something to give us joy and to treasure in each day.
Gill X
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Hi all, thanks for the input regarding gene test. I don’t have any sisters and children so it’s not necessary. I think my BC comes from my mom’s family members who have issue with breast though not IDC. I also have cousins having issues with uterus and breast. I’ve asked my aunt to advise the other cousins to do ultrasound scan and mammogram especially when they reach 40.
May I know what is your diet now? What’s the most appropriate diet for us? I have heard a lot, like no sugar because cancer cells feed n sugar, less carbs, more protein, no processed food including bread and biscuit, no juicing as fruit juice/ smoothie is sweeter than whole fruits, etc.
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Hi, Helenlouise
I read your post and am so sorry you still are dealing with this wound. I learned from my husband's illnesses that an open wound can be a very stubborn thing. If I remember right you did have radiation in that area so that probably also compromised the skin, but still it is hard to believe that a biopsy needle could do such damage. I do hope the Activac will be the answer you are looking for, and will work to solve this problem. It sounds very good that you will have a helping hand every day to take on the care your wound. Did you also have a seroma at one time?
Have you heard anymore about when the Morpheus trial will begin?
I'm glad you are enjoying your work, I don't think you need worry too much about your mental acuity, there has to be so much on your mind right now. Work you enjoy is probably good for you.
Please don't apologize for sharing with us what is going on with you, we are all here to support each other and at least we have an understanding of what you are going through. We all have different stories but all from the same initial cause, TNBC.
Thinking of you on the other side of the world, love
Mary
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Hi HelenLouise,
Your Activat sounds very like the dressing I had on my breast wound to speed up healing so I could start chemo. We call it a Pico dressing. I think it did help and mine wasn't noisy.
Susie
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Hello Helenlouise,
I wanted to say thank you for your kind words about the thread. It makes it all worthwhile.
Just know that i am thinking of you and wishing you a speedy recovery now.
I do hope everything will heal up and that you will be able to have that much deserved holiday in Japan.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your recent post.
I do agree with what you say about politicians. We now have 11 candidates for the Conservative leadership and I do not think any of them are of any use. It will just be more talk and more broken promises. I heard on the news that the EU is fed up with it all and that if we have not implemented Brexit by the deadline of October 31st they are going to kick us out.
We need a General Election and probably some new parties. I think the Conservatives are an anachronism and I do not know where Labour is going (and nor do they). I do believe in looking after the many and not the few, and this government is certainly for the few and not the many.
It has been a busy week and tomorrow I meet with the Health and Safety Inspector and do the rounds here with him.
The urgently needed rain bypassed Exmouth, but it was pouring down just a few miles away. Today it has been cold, more like November, but the experts tell us it is going to be warm at the weekend.
Keep well.
Love.
Sylvia xxxx
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Hi, I've been like a whirlwind since Thursday. that if I do or do not get chemotherapy they offered me Gemcitabine and carboplatin through an implanted catheter. It does not matter how many nodules you have in your body. Yesterday, I asked for a second opinion and the doctor sent me a Pet Scan to see in what other places of my body there is metastasis. the sad thing is that it is not covered by the health system that I have and it costs one month of my salary. the oncologist who sees me says that the same chemotherapy is done to one or several metastases.
emotionally very sad. the gynecologist says that I get the treatment a few cycles and then I get oral capacotabine that I survive a year or a year and a half after new drugs that may be coming onto the market.
the oncologist sees me next Thursday, June 6
I do not cry anymore, I have so much but so much anger. impotence. disappointment How long can one plan life? what kind of life I'm going to have with this chemotherapy. they say. that every patient is different ... I do not know what decision to make.
Abrazos
Marias
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Dear Marias, it is very frustrating and I feel your sadness. Some TNBC people do well on capecetibine (xeloda or madam X some call it - there is a thread on it). I found it easy to take but it played with my wbc count. Otherwise no real side effects and unfortunately no benefit. I still got skin Mets.
Thank you everyone for encouragement and support. Sylvia it is wonderful what you have created. You should be pleased and proud!
Mary I had rads twice to that side so yes compromised skin. The RO said the cancer is likely to be playing into the wound not healing as well. I had a surgical biopsy so I was cut and had 9 stitches. The surgeon did hit the seroma which has been there since mastectomy. Post mastectomy I had to have it drained 4 times, so the wound opening up was a risk. I think the surgical biopsy was a mistake on several levels but done now.
Nothing more on Morpheus, I have to wait for a solid tumor that can be measured by CT which is a criteria to be included. My MO messaged this morning asking to see me next week which is early as my next scans are scheduled for late June, so a tad anxious about seeing him. Let's hope it's something positive.
Susie the Pico is similar but apparently not for my wound. Nurse said today they would have a good indication if it is going to heal in about two weeks, so that's not too long to wait. Yes I am very fortunate to be able to have the nurses come each day and still work. I have direct access to most health services. We have a new regionalcancer Centre with oncology, radiology, 30 bedward and a wellness center. I have many reasons to be thankful. I have read in the posts how some are not so fortunate in getting treatment and care.
I'm off to meet up with a group of high school friends this weekend, some I haven't seen since the 70s so that will be great!
I truly am blessed even with this rotten disease thrown in!
Will keep in touch - thank you all. Xx
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Hi Marias,
I often think about you and wonder how you are coping.
Gemcitabine and Carboplatin are frequently used for those patients suffering a local recurrence of breast cancer or metastasis to another part of the body. The side effects vary so much between individuals. Some women are able to continue with work and their social lives, while others are not so fortunate. A friend of mine had a local recurrence of triple negative breast cancer and carried on driving the school bus every day whilst undergoing treatment with Gemcitabine and Carboplatin. In an earlier post I remember you saying that you were worried about nausea. I was too and was given a strong anti-nausea drug to take before each treatment. This medication was extremely efficient. Explain your concerns to your oncologist. Marias, if you find that the side effects of your chemotherapy are too difficult to cope with, then you can always stop the treatment at any time. Your quality of life is an important consideration.
Your anger, disappointment and sense of being impotent are completely understandable. Cancer makes us feel that we are no longer in control. The psychological and emotional aspects of this disease and its treatment are rarely discussed with patients, which is a great shame.
Try to take one day at a time. Don't spoil a good day by worrying about what the next day might bring. You can still plan trips out doing things you enjoy. Learn a new skill perhaps. You don't need to travel far to enjoy a holiday. I know it's hard to think about this before you've had a discussion with your oncologist and you're treatment is underway.
I do hope that you have support at home. Keep on posting, we're all thinking of you.
Gill X
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Matias, I am thinking about you and wishing goid things for you. We have to be away all day, so will send a longer note later. Hugs
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Hello! I already have the order for the PET scan. They do it to me on Wednesday and on Thursday the oncologist sees me.
God help me and trust me to spend these moments. !!
Abrazos
Marías
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Thank you for your words of support and recommendations. thousand hugs.
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Hello Marias,
It was nice to hear from you and I can understand what a busy time you have been going through, trying to sort out your chemotherapy drugs and treatment.
As we all know sorting out our treatment and waiting to get started is a very difficult and tiring time. Once you get started you find a way to cope with what you are going through. I see from your post that you have been offered gemcitabine and carboplatin. These are familiar names to me and I know that carboplatin has been mentioned a lot on the forum for treatment of breast cancer. As for gemcitabine. My information is that it is used to treat breast cancer, ovarian cancer and non-small cell lung cancer. I would think that if your oncologist is offering you this, for your metastatic cancer, she must feel that this is the best treatment for you. These chemotherapy drugs go all round your body, as they are systemic and so will pick up cancer cells anywhere in the body.
From your post I see that you asked for a second opinion. Did that person giving you a second opinion tell you what he thought of the two recommended chemotherapy drugs?
I see that he wanted to send you for a PET scan and that such a scan is not coverred by your health system and that it is very expensive.
Have a good think about this and try to get started on some chemotherapy as soon as you can. I think we all know that with breast cancer you can get metastases in the lung, the liver, the bones and the brain.
I can understand how emotionally sad you are. Everything to do with cancer comes with a great emotional upset, but we do manage to get to a state of acceptance and we do start our treatment and get through it.
The other drug you mentioned, oral capecitabine, is also a very well known drug.
As you go through treatment other drugs useful for you may appear.
I do hope you will have a positive appointment with your oncologist next Thursday June 6th. We shall all be thinking of you here in our group.
It is good to have a good cry to try to get all of the different feelings out of your mind. I do remember crying like that after my first long day trying to sort everything out. I did not cry after that and I tried to settle down and accept what I had to do to stay alive.
As difficult as it is, try to be positive and tell yourself you are going to give this challenge all that you can. I hope you will have good support from friends and family and you know that you can come to us and vent every feeling that you have inside you.
You have already overcome many challenges and can overcome this one.
Sending you all my love and best wishes.
Sylvia xxxx
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Hola marias
Fue agradable saber de usted y puedo entender en qué momentos tan ocupados ha estado pasando, tratando de ordenar sus medicamentos de quimioterapia y su tratamiento.
Como todos sabemos, ordenar nuestro tratamiento y esperar para comenzar es un momento muy difícil y agotador. Una vez que comienza, encuentra una manera de hacer frente a lo que está pasando. Veo en su publicación que le han ofrecido gemcitabina y carboplatino. Estos son nombres familiares para mí y sé que el carboplatino se ha mencionado mucho en el foro para el tratamiento del cáncer de mama. En cuanto a la gemcitabina. Mi información es que se usa para tratar el cáncer de mama, el cáncer de ovario y el cáncer de pulmón de células no pequeñas. Pensaría que si su oncólogo le está ofreciendo esto, para su cáncer metastásico, ella debe sentir que este es el mejor tratamiento para usted. Estos medicamentos de quimioterapia recorren todo el cuerpo, ya que son sistémicos y, por lo tanto, detectan células cancerosas en cualquier parte del cuerpo.
Desde tu post veo que pediste una segunda opinión. ¿Esa persona que le dio una segunda opinión le dijo qué pensaba de los dos medicamentos recomendados para la quimioterapia?
Veo que quería enviarte para un examen PET y que tal sistema de salud no lo cubre y que es muy costoso.
Piensa bien sobre esto e intenta comenzar con un poco de quimioterapia tan pronto como puedas. Creo que todos sabemos que con el cáncer de mama se pueden producir metástasis en los pulmones, el hígado, los huesos y el cerebro.
Puedo entender lo emocionalmente triste que estás. Todo lo que tiene que ver con el cáncer viene con un gran malestar emocional, pero logramos llegar a un estado de aceptación, comenzamos nuestro tratamiento y lo superamos.
La otra droga que mencionó, la capecitabina oral, también es una droga muy conocida.
A medida que pasas por el tratamiento pueden aparecer otras drogas útiles para ti.
Espero que tenga una cita positiva con su oncólogo el próximo jueves 6 de junio. Todos estaremos pensando en usted aquí en nuestro grupo.
Es bueno tener un buen llanto para tratar de que todos los sentimientos diferentes salgan de tu mente. Recuerdo haber llorado así después de mi primer día largo tratando de arreglar todo. No lloré después de eso e intenté asentarme y aceptar lo que tenía que hacer para seguir vivo.
Tan difícil como es, trate de ser positiva y dígase a sí mismo que va a enfrentar este desafío todo lo que pueda. Espero que tengas un buen apoyo de amigos y familiares y que sepas que puedes venir a nosotros y desahogar todos los sentimientos que tienes dentro de ti.
Ya has superado muchos desafíos y puedes superar este.
Enviándote todo mi amor y mis mejores deseos.
Sylvia xxxx
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Hello!! today they programmed me the PET for the incoming Wednesday because on Monday I was here in Colombia. On Thursday, the oncologist sees me. The second opinion was given to me by another oncologist who sent me the PET. the latter is not part of the medical service. I paid it as a private consultation. He recommended taking the PET once he has it and he exposes it in a meeting of doctors and they give a concept. I also have the opportunity to take it to my oncologist. I hope to make the best decision for my life and well-being. I was shocked when the doctor said that maybe that diagnosis after the operation of a 25% positive on estrogen has been a pathology error. and that I was always triple negative. all this accentuates my anger and frustration. a huge hug and a thousand thanks for being with me during these difficult moments.
Abrazos
Marias
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Hi, Marias
Well, one good thing about all these scheduling matters, and appointments and phone calls, they pass the time which is better than sitting and worrying. I always felt as if it was better to be doing something about the situation and not just observing.
Sylvia said something I was thinking: if you are taking the chemo drugs, it's possible something better will come along while you are doing that. And someone else said, if you are having a difficult time with taking them, you can always just stop that process. New drugs are coming out quite frequently.
I have looked around on this website a lot over the years, and there are a lot of women who are Stage IV and have been going strong for years. It may help you to hear some of what they say. Helenlouise is going through this too, right now.
For myself, I would feel the same as you if this happened to me, now you are feeling sad and defeated. I think you said you are feeling well physically though, and where there is life there is hope. I am hopeful for you, Marias, as I would be hopeful for myself.
I send you warm hugs, love, and prayers for healthy life.
Mary
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Hello Sylvia,
I absolutely agree with your last post to me, we do need a General Election. Public confidence in the Conservative government is at an all time low. Labour is in complete disarray and need to find a new leader. I do, to some extent, blame the public for the situation we now find ourselves in, if only people could be bothered to vote. It's everyone's civic duty. A low turnout gives the politicians the impression they can do as they please - and so they do.
I shall be very happy to see Boris Johnson blustering his way through a court case.
I'm so glad that we can all be here for helenlouise and Marias and all those on the thread who need our support. I remember the sense of confusion I felt immediately after I was diagnosed and again before chemotherapy was underway. There is so much sensible information here from women who've been through the experience themselves or like Flora and Viewfinder, have a relative who has been through it. I would like to think that breast surgeons and oncologists occasionally took time to look at a site such as this - it would be quite an eye-opener.
I'm not sure whether you've had your visit from Health and Safety yet. They usually find that something isn't quite right. You just have to hope that it's nothing too expensive.
Apparently, it's going to be a very warm and sunny weekend here. I hope you get your much needed rain soon.
Enjoy your weekend,
Gill X
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HI Sylvia
Thank you, I finally know the difference between MPs and MEPs, I was confused about the election. I didn't realize it was for the European Parliament. I suppose it's similar to us in that we have laws from our Federal Government and then also laws from our State Governments.
Now that Theresa May is gone, I'm sure the Prime Minister race has really heated up, I don't know enough about all the candidates to cheer any of them on, I hear you say you don't care for any of them, and Susie said she can't stand Boris Johnson. So do you hold your nose and vote for one of them anyway?
I have been in the Hospital a lot this week; my Gynecologist annual visit was due, and I saw the Orthopedic Doc for the almost-12 week visit. Also I was there 3 times for therapy. The Gyno visit was dizzyingly fast, they seem to have it all down to a science. In and out so fast you are not sure what happened. No bother with small talk, the doc herself rarely takes her eyes off the computer she carries with her. Tick, tick, tick, as she checks boxes on her screen. The questions I asked were answered so rapid-fire I will have to call back to be sure what she said, one question was answered from outside the room because she had already left. When I first saw her 3 years ago she spent some time with me and I was impressed. Now I know she was establishing a baseline for me and visits now are peremptory, and perhaps that is a good thing? I find it annoying however.
The Ortho Doc sat down beside me, no computer. She manipulated my arm and was pleased with most of my progress. The only movement she was not totally happy with was the overhead extension, that is still difficult for me. So she will see me again in 2 months, therapy goes on. Apparently I have scar tissue in my shoulder, which pops, crackles and hurts when I do the offending movement. Oh well, nobody said this would be easy. She did prescribe me some prednilosone tabs to help make this easier, but I am reluctant to take them. After leaving the office I remembered that this drug makes me nauseous and unable to sleep, so I am going to try to work through this pain to better success. I will have them on hand if I don't make progress in the next 2 weeks. It is only a week-long course but supposed to dose them properly every few hours, 6 a day to start out. I have a very busy next 2 weeks so do not want to be sleep-deprived for this.
I do hope Marias is getting good care, and has good support. I do believe she has many good friends and her brother to help out, and there is no doubt she is a very strong lady. And she has us!
Hope you get some rain, heavy hoses are no pleasure but necessary at times, rain would be a blessing. Here we are finally having a respite from rain, but there is no end to the flooding on our large rivers, as the rain that falls upstream is still coming downstream.
Talk to you again soon, love
Mary
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hi everyone
Just touching base to say hi and much love to everyone! Been extremely busy with work and uni and have a holiday coming up in two weeks. Off to Macau Hong Kong Vietnam and Penang. Will try to post some pics.
Still very stiff and achy but I'm learning to stretch which helps heaps. Still have very dark days and remain hyper vigilant. Been doing really well in pharmacology and clinical assessment units but really struggling with research.
It's very cold here and flu season has hit with a vengeance. There have been 35 deaths this year and all public health units on high alert!
Much love
Kath
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Hello Gill,
Thank you for your latest post. I do agree that we should all have to vote because otherwise people are getting elected with insufficient support and undemocratically. I do not think any party has been elected since Clement Atlee was elected with over 50% of the votes in 1945. Since then all the good work of that Labour Party has been systematically undone.
It looks as though we are going to end up with Boris Johnson and Michael Gove as the two contenders for leader of the Conservative Party. They both want the position too badly to be any good.
As for our thread here, it is certainly true that our main reason for being here is to help and support those who are having a really bad time. We all have so much information and experience with this cancer journey and we have to keep spreading it.
The Health and Safety inspection was fine. I know the man well now and he knows that he will find everything in pristine order.
I keep hearing on the weather forecast on the radio that in the south it is going to be 28C but it is certainly not that here in Exmouth. There is still no rain, except for a few spots, but it has been raining all around us.
I do hope you are making a good recovery and that you are feeling much better.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. With reference to the European Parliament, it is not quite the same as your Federal and State laws. The EU Parliament which is made up of 28 countries (27 if we ever get to leave!), holds sway over these countries and they have to abide by any laws that the EU brings in, but these laws are made up by unelected bureaucrats, such as Jean Claude Junker. One of the main reasons for the referendum we had in 2016 and Brexit won, was because the people wanted to govern their own country and also wanted to end freedom of movement which has brought in too many immigrants.
The race that is going on is not to elect a new Prime Minister, it is to elect a new leader of the Conservative Party and because at the moment the Conservative Party forms the government, that new leader will automatically be the Prime Minister. It is all very undemocratic. There are about twelve candidates for the Conservative leadership at present and the 300 Conservative MPs will whittle them down to two and then the Conservative Party members (120,000) will vote for one of the two. It is all very undemocratic and more like an oligarchy than anything else.
Please, Mary, do not look for any logic in what goes on in this funny old country. We have laws going back to Henry VIII.
I can see that you have been very busy with hospital visits this week. It must be very tiring. I do not like visits to hospitals or GP surgeries, nor dentists for that matter. For these people I suspect I am too outspoken, challenging and questioning. I am like a dog with a bone and I want answers to my questions.
I do not like the fact that doctors are on their computers all the time and then seem to touch patients without washing their hands. I should think that computer screens and keyboards are full of germs. I refuse to use the touch screen in the vestibule of our surgery to announce that I am present at my appointment. I go to the receptionist desk and tell that person, who logs me in on their computer!
I see that you have been given the drug prednisolone which is a powerful steroid that is used for many things and has lots of side effects, so I am not surprised you are reluctant to take it. The side effects are very serious if taken long term.
I do hope you will find some time for relaxation during the next two weeks when you say you are very busy. It seems that some of us are far too busy.
Each time I think the following week will be more relaxed, things keep turning up.
Like you, I do hope Marias is getting good care and has good support. I think it is awful that during her treatment she was wrongly diagnosed with hormonal positive breast cancer, only to be told now that she was always triple negative. It cannot have done her any good to have been taking anti-hormonal medication. I do hope she will keep in close touch.
Helenlouise also seems to be having a lot of problems and I do hope she will make a good recovery soon. I do hope she gets to Japan for her holiday.
There is no rain in sight in Exmouth and the weather in the UK is all over the place. There has been so much rain in the north of the country.
Do you get BBC television where you are? On the BBC News Channel on Saturdays at 11:30 am there is a good news programme called Dateline London. It is well worth watching. It is just half and hour but it should be more.
I must end now.
Love.
Sylvia xxxx
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Hello Kath,
It was nice to hear from you and thank you for popping in.
you must be looking forward to your holiday in two weeks time and we look forward to having some photographs.
I was glad to read you are doing well in pharmacology and clinical assessment and you can only try your best with research. What kind of research are you doing?
It sounds as though the flu where you are is very bad. I hope we do not get it over here.
Keep in touch.
Love.
Sylvia xxxx
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Hello Gill,
I forgot to say that viewfinder has been through breast cancer. She has had hormonal breast cancer and is now supporting her younger sister who is going through treatment for TNBC.
Thank you for all your support on the thread this week. It is so good of you to do this after all you have been through.
Love.
Sylvia xxxx
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Hi, Gill
In response to your last post to me, I did look up a little information on tornado frequency. In the last 20 years this year so far has had the second-highest number of tornados. 2003 was the highest in the last 20 years. The very highest on record with the most loss of life was back in 1925, I believe. This is for the area known as "Tornado Alley", which includes our state. I think we have a false sense of security here locally because we are very hilly, but tornados can strike anywhere. It is because of the unusually cold spring air coming over the Rockies and meeting the warm moist air from the Gulf of Mexico, always right over our heads here in the midwest. It makes for some unpredictable weather! We usually have a lot of wild weather in May, things have calmed down a bit now. Although the flooding continues as all that water continues to flow down the big rivers. And there's no denying it's been a wild tornado season, now the weathermen are calling for next week to include more severe weather.
I do not get very far into the climate change panic, I am sure the climate is changing because it has for millions or billions of years. I think it would be changing whether we are here or not, because that's the lesson of history, and science. The big difference now, in my opinion, is that there are so many more people living in the path of these disasters. Sort of like, if the tree fell in the forest and nobody was there, would it make a sound?
It is a busy time of year to be one-armed, but I am getting better, arm is still stiff but I am using it more now. I did learn a lesson after I had both arms hurting, and slowed myself down. Onward, more therapy.
My oncologist aftercare is now a once-a-year visit after a mammogram. Not much happens there, but that's a good thing, I guess. One of my sister-in-laws is having a cervical cancer scare right now, she will find out more information next week. And a dear friend is visiting a pulmonary doc next week after landing in the Emergency Room this week and having nodules found on her lungs. I guess it's good it's a pulmonary doc instead of an oncologist? Much more to learn about all this.
Have a good weekend, Gill, and enjoy your asbestos-free home while watching the rain fall!
Love, Mary
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Hello Mary,
I was wondering whether you have read the latest email from Chris Woollams of Cancer Active, dated May 28th?
I was having a look at some of the headings.
1. is this all? - This is about how poorly 71 new drugs launched in the past 12 year perform. This has apparently come from a leading oncologist. It is all about the somatic theory of cancer. You have to click on The poor record of the last 71 drugs.
2. How some scientists do question the status quo. Could a non-drug cure be imminent? You have to click on UK Scientists potential cancer cure.
3. So what are the best foods for gut health. It does not matter whether a person has cancer, chronic fatigue syndrome, dementia, diabetes, high blood pressure or stroke risk, IBS, or allergies. Their gut microbiome is damaged. Their immune system is weak. Click on Best foods for gut health and immune strength.
4. How to increase your personal odds of survival. This is all about Personal Prescript
ions with him. I was wondering whether this would help Marias. What do you think, Mary?
https://www.canceractive.com/article/Personal-prescription-feedback-and-comments
5. The latest news you can use on breast cancer? - It says they have decided to take Cancer Watch (our News Service) and divide it into each of the cancers so you can see exactly what useful research has happened on your cancer. They have started with breast cancer. Click on Breast cancer - latest research, latest news you can use.
https://www.canceractive.com/article/latest-research-10
6. This month's Cancer Overview: Brain cancer. Click on brain cancer overview.
7. Here is a little bit of science. Click on The food proven to increase survival by correcting your genes.
8. Join the Cancer Active Forum. Have you joined this forum, Mary? Click Science meets chemotherapy at last. This about fasting during chemotherapy.
Hello everyone,
Although I have addressed this post to Mary, because we have been receiving the emails for some time, I do hope, of course, that everyone will read this, and I do hope there will be some comments. We must remember we are, above all, a cancer support thread.
To Marias,
I hope you will read the section about personal prescriptions.
To Kath,
You will be interested to know that a popular programme with Michael Portillo about his travels by train around different countries of the world, will be starting a new one with his travels across Australia, will be going to Broken Hill.
To Val, adagio, Hanieh, Flo, and any others I may have forgotten, please pop in and say hello.
Best wishes to everyone from the UK where everyone has something to say about Donald Trump and his visit this coming week to our odd little island.
The weather here is like Brexit, it cannot make up its mind!
Thinking of you, Mary and everyone else.
Sylvia xxxx
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Hello Sylvia,
Thank you for your last post to me. I'm feeling much better thank you. The only really difficult side effect of chemotherapy I have left, is the overwhelming tiredness. However, as my last treatment was only just over three months ago and was followed by the C. difficile infection, maybe I'm just being impatient. I do still have a few problems with my taste buds and would like the bitter taste in my mouth to go away.
It will be disappointing for many victims of cancer to read Chris Woolams' articles on the very poor performance of so many cancer treatments. I had already seen the video concerning the views of a senior oncologist on the poor results and health deficits of chemotherapy. They are very disturbing. My consultant oncologist at the London Cancer Centre advised me that in regard to metaplastic cancer, without chemotherapy I had a 50/50 chance of survival. With chemotherapy I could improve my chances to about 70%. I did go to the Predict site and noted that the percentage of those surviving breast cancer was higher for those who underwent chemotherapy, but not that much higher. However, the statistics are based on averages and as we all know, chemotherapy can work well on some breast cancers, but hardly at all on others. Triple negative breast cancer seems to respond well to chemotherapy, but triple negative metaplastic is often resistant. For myself, I'm glad that I had the opportunity to try chemotherapy. But I might have felt differently had I been left with painful neuropathy. At present, most of us have no choice, however, I'm optimistic about the development of new treatments and look forward to the day when chemotherapy is history.
Hope your weather is better than ours - cold and grey today.
Love,
Gill X
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