Calling all triple negative breast cancer patients in the UK
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Hello Sylvie, Mary and all of you!!.
Sylvie, I just read about your husband, I hope he is much better now!!.
Im going good, I am still in tests and medical checkups since I have not felt well, and my thyroid tumor indicators have not gone well. In March I have to go back to both the endocrine and the gastroenterologist to review the tests they sent me, abdomen ultrasound, colonoscopy, endoscopy, thyroid ultrasound and thyroid bed, plus a large number of blood tests.
I just returned to work again, after being disabled since November because I did not feel like I had enough energy to work. My right arm has been inflaming a lot and since yesterday I started doing Nordic walking again, trusting that and the lymphatic drainage massage that I am doing every three days improve my situation.
In Colombia, because with attacks again, this time, the ELN guerrilla, and with the tension of Venezuela, I hope that we will not be involved in a meaningless war like those of the Middle East, Vietnam, etc. We have not had any international war in our Latin America, I trust that this time it will not happen, but I feel nervous about it.
Muchos abrazos, y voy a leer sus mensajes.
Marias
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Hello Gill X and Susie W. I was reading about the teeth and their care while receiving chemotherapy. They are giving me Letrozole 2.5 mg, every day for 5 years, I have only been with the treatment for a year. Initially I received FAC-T, for 6 months. and then this oral Letrozole, from the beginning of chemotherapy, I was sent to oral cleansing every 3 months. To avoid any injury to a tooth, it also has an effect that I am being given an injection of soledronic acid (Zometa) once a year, and this can cause necrosis in the jaw, which would complicate any odological treatment. The hygienist removes all the plaque that has accumulated.
During the initial treatment of the FAC-T chemotherapy, you had to be very careful with the teeth and gums, for any type of infection and since chemotherapy reduces the defenses it can be complicated in a very easy way. I brush my teeth three or four times a day with a very soft brush. In these moments in addition to the breast and thyroid ca, I have complicated since I have high levels of trigriseridos, cholesterol, and sugar. since December 12 I am on a diet, two carbohydrates a day, animal protein, chicken or fish and lots of vegetables. They took away fruit juices and all the acid fruits, I lost 3 kls.
Un abrazote
Marias
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Hi, I was reading about the arthritic and joint pain that chemotherapy can cause, my oncology doctor prescribed me dololed, and I have been without numbness and joint pain for 4 months. dololed are calendula pills Hugs Marias
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Mary, thanks for the candle every sunday for me and Hanieh.
Abrazos
Marias
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Hello
https://www.vox.com/videos/2018/12/11/18136134/how-was-cumbia-created-colombia-dance-music
Espero lo disfruten
Marias
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hi everyone
It’s very hot here. We are peaking temps of 47 Celsius and the drought is really cruel for the wildlife. Visited my onco a couple of weeks ago and he seemed happy. Wasn’t realty interested in the aches and pains I have and feels it’s arthritis post chemo. Not sure how I feel it’s the mind games that really get me. Do I guess I still keep putting one foot in fro t of the other!
Have just been down in Adelaide where my daughter had her 3rd son. Henry Louis. Mum and baby doing well. The darling river which has been the life blood of Western NSW and has made world news with a blue green algae outbreak which is killing fish all along the river. Some of them are 100?year old Murray cod! So sad! It’s sll about cotton farming and water allocation. Hope everyone is well
Much love
Kath
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Hello Marias,
I was so glad to read all your posts. Welcome back to the thread.
There is nothing wrong with my husband Raymond. I think you are confusing him with Gill's husband Michael. Gill has been having a very bad time during her chemotherapy treatment and very recently also had the norovirus. Her husband Michael then had the norovirus.
I have been reading all your posts very carefully and I was sorry to read that you have been having so many problems. I am not surprised that you have not felt well and that you have not been able to go to work.
What exactly is happening about your thyroid tumour indicators? I think you had the cancerous tumour removed so what is happening now? Is your thyroid not right as regards thyroid hormone level?
I do hope you will get good news in March when you see the endocrinologist and the gastroenterologist to review all the tests that you had. What a lot of tests you have been having, colonoscopy, endoscopy, an ultrasound for the thyroid and all those blood tests. All this must put you under a lot of stress.
Try to keep looking forward and telling yourself you will get through this.
I know you are a cheerful person so hang on to that cheerfulness.
I was glad to read that you have just returned to work. Take it easy.
I was sorry to read that in addition to everything you have been through you are also having trouble with your lymphoedema and I do hope the Nordic walking will help to improve this. Keep doing the lymphatic drainage massage and keep hydrated to help the lymph to move.
I do listen very carefully when there is news of Colombia and I do know that there is trouble again.
Our news is full of information about what is going on Venezuela. I feel very concerned about what is happening in the world and I do hope that the powers that be will not start bombing South America as they have bombed the Middle East in various parts. War does not solve anything. It kills innocent people, destroys buildings to ruins and just causes more poverty and suffering.
I do hope you will be able to stay with us. I am going to use Google to put this post into Spanish. I shall post more when I have read your other posts.
Sending you all my love.
Sylvia xxxx
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Hola marias
Estaba tan contenta de leer todos tus mensajes. Bienvenido de nuevo al hilo.
No hay nada malo con mi esposo Raymond. Creo que lo estás confundiendo con el marido de Gill, Michael. Gill ha estado pasando un mal momento durante su tratamiento de quimioterapia y recientemente también tuvo el norovirus. Su esposo Michael entonces tuvo el norovirus.
He estado leyendo todos tus mensajes con mucho cuidado y lamenté leer que has tenido tantos problemas. No me sorprende que no se haya sentido bien y que no haya podido ir a trabajar.
¿Qué está sucediendo exactamente con los indicadores de su tumor tiroideo? Creo que te extirparon el tumor canceroso, ¿qué está pasando ahora? ¿Su tiroides no está bien con respecto al nivel de hormona tiroidea?
Espero que reciba buenas noticias en marzo cuando vea al endocrinólogo y al gastroenterólogo para revisar todas las pruebas que tuvo. Cuántos exámenes ha estado teniendo, colonoscopia, endoscopia, una ecografía para la tiroides y todos esos análisis de sangre. Todo esto debe ponerte bajo mucho estrés.
Intenta seguir mirando hacia adelante y diciéndote a ti mismo que superarás esto.
Sé que eres una persona alegre, así que aferrate a esa alegría.
Me alegró leer que acabas de regresar al trabajo. Tómalo con calma.
Lamenté leer que además de todo lo que ha pasado, también tiene problemas con su linfedema y espero que la marcha nórdica ayude a mejorar esto. Siga haciendo el masaje de drenaje linfático y manténgase hidratado para ayudar a que la linfa se mueva.
Escucho con mucha atención cuando hay noticias de Colombia y sé que hay problemas nuevamente.
Nuestra noticia está llena de información sobre lo que está pasando en Venezuela. Me siento muy preocupada por lo que está sucediendo en el mundo y espero que los poderes no comiencen a bombardear a Sudamérica, ya que han bombardeado el Medio Oriente en varias partes. La guerra no resuelve nada. Mata a personas inocentes, destruye edificios en ruinas y solo causa más pobreza y sufrimiento.
Espero que puedas quedarte con nosotros. Voy a usar Google para poner esta publicación en español. Publicaré más cuando haya leído tus otras publicaciones.
Enviándote todo mi amor.
Sylvia xxxx
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Hello Gill, Susie, Flora, viewfinder, Mary and Kath,
I have been reading all your posts and was so pleased to see the thread coming alive again. I shall be catching up today and during the weekend. Please say hello to Marias from Colombia, South America. She has posted a lot on here in the past and I know that Mary will be as thrilled as I am to see her back here with us. I do hope that adagio and Pam will pop in to see her.
That is all for now.
Love.
Sylvia xxxx
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Hello Marias,
I have been reading what you posted to Gill and Susie about teeth.
I do hope you were told about teeth care back in 2016 when you were first diagnosed. As soon as I was diagnosed and before I started chemotherapy, I was told to get a thorough dental check and to get any dental work done because I would not be able to have any dental work done during my chemotherapy because of risks of infection. Have you been having trouble with your teeth? I do hope you have not.
You mentioned that you are taking the anti cancer drug letrozole (brand name Femara) which is an aromatase inhibitor used to control hormone sensitive breast cancer. It looks as though you are being given this because, if I remember correctly, you were first diagnosed with breast cancer with triple negative receptors and then it came back in the same breast with some ER+ receptors (oestrogen positive). Taking a drug like this for five years seems fairly standard. Sometimes you are put on tamoxifen for five years or a mixture of tamoxifen and an aromatase inhibitor. I think recently here they may have extended the aromatase inhibitor to ten years. I hope you will have been told that they have side effects.
I was surprised to read that you were sent for oral cleansing every three months, because I was definitely told no dental work during chemotherapy.
I was interested to read that you are now being given an injection of zoledronic acid (Zometa is one of the brand names for this). Zoledronic acid is a bisphosphonate which is one of a group of drugs used in the treatment of bone disorders. This zoledronic acid is very much in vogue in the UK at the moment. Zoledronic acid is also used in cancer treatment to help calcium blood levels to fall because they can be high when you have cancer. Zoledronic acid can only be given by infusion into a vein and has a very long duration so that it can be used very infrequently. This drug can cause pain in the jaw and necrosis of the jaw. Apparently the first dose of zoledronic acid may cause flu-like symptoms, including bone pain, fever, fatigue and gastrointestinal problems such as sickness and vomiting.
I do hope, Marias, that you are not being given too much of a cocktail of drugs. I have friends here who are feeling increasingly unwell because they are on a lot of medication and they are not told the side effects of all of these mixed up together. Are you taking medication for the thyroid problems?
As for your gums, you are doing the right thing brushing with a very soft brush. There are special toothpastes and rinses for these mouth problems, such as Biotene.
I was sorry to read that in addition to the breast and thyroid cancer problems, you have other health problems to deal with.
I was interested to know that you are on a special diet because of high levels of triglycerides, cholesterol and sugar. Your diet seems a good one. Are you managing alright on it? Lots of vegetables can only do good and low carbohydrates can only do good as well. I can understand that you cannot have fruit juices. They are too concentrated and even the unsweetened is high in sugar. Do you have any fruit? Berries such as blueberries and blackberries are probably the lowest in sugar. Well done for losing 3 kg. Do not forget to drink some green tea.
Thank you for the music link. I am sure we shall all enjoy it.
Abrazos.
Sylvia xxxx
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Hola marias
He estado leyendo lo que publicaste a Gill y Susie sobre los dientes.
Espero que se te haya informado sobre el cuidado de los dientes en 2016, cuando te diagnosticaron por primera vez. Tan pronto como me diagnosticaron y antes de comenzar la quimioterapia, me dijeron que me hiciera una revisión dental completa y que me hiciera un trabajo dental porque no podría hacerme ningún trabajo dental durante mi quimioterapia debido a los riesgos de infección. ¿Has estado teniendo problemas con tus dientes? Espero que no tengas
Usted mencionó que está tomando el medicamento contra el cáncer letrozol (nombre de marca Femara) que es un inhibidor de la aromatasa que se usa para controlar el cáncer de mama sensible a las hormonas. Parece como si le hubieran dado esto porque, si recuerdo bien, primero le diagnosticaron cáncer de seno con receptores triple negativos y luego regresó en el mismo seno con algunos receptores ER + (estrógeno positivo). Tomar una droga como esta durante cinco años parece bastante normal. Algunas veces se le administra tamoxifeno durante cinco años o una mezcla de tamoxifeno y un inhibidor de la aromatasa. Creo que recientemente aquí pueden haber extendido el inhibidor de la aromatasa a diez años. Espero que les hayan dicho que tienen efectos secundarios.
Me sorprendió leer que le enviaron a una limpieza bucal cada tres meses, porque definitivamente no me dijeron que me hicieran un trabajo dental durante la quimioterapia.
Me interesó leer que ahora le están administrando una inyección de ácido zoledrónico (Zometa es una de las marcas para esto). El ácido zoledrónico es un bifosfonato que forma parte de un grupo de medicamentos utilizados en el tratamiento de trastornos óseos. Este ácido zoledrónico está muy de moda en el Reino Unido en este momento. El ácido zoledrónico también se usa en el tratamiento del cáncer para ayudar a que los niveles de calcio en la sangre bajen porque pueden ser altos cuando usted tiene cáncer. El ácido zoledrónico solo puede administrarse por infusión en una vena y tiene una duración muy larga, por lo que puede usarse con muy poca frecuencia. Este medicamento puede causar dolor en la mandíbula y necrosis de la mandíbula. Aparentemente, la primera dosis de ácido zoledrónico puede causar síntomas parecidos a la gripe, como dolor en los huesos, fiebre, fatiga y problemas gastrointestinales como enfermedad y vómitos.
Espero, Marías, que no te den demasiado cóctel de drogas. Tengo amigos aquí que se sienten cada vez más enfermos porque están tomando muchos medicamentos y no se les informa de los efectos secundarios de todos estos mezclados. ¿Está tomando medicamentos para los problemas de tiroides?
En cuanto a sus encías, está haciendo lo correcto al cepillarse con un cepillo muy suave. Existen pastas dentales y enjuagues especiales para estos problemas bucales, como el bioteno.
Lamenté leer que además de los problemas de cáncer de mama y tiroides, usted tiene otros problemas de salud con los cuales lidiar.
Me interesaba saber que usted está en una dieta especial debido a los altos niveles de triglicéridos, colesterol y azúcar. Tu dieta parece buena. ¿Estás manejando bien en eso? Muchas verduras solo pueden hacer el bien y los carbohidratos bajos solo pueden hacer el bien también. Puedo entender que no puedes tomar jugos de frutas. Son demasiado concentrados e incluso los sin azúcar tienen un alto contenido de azúcar. ¿Tienes alguna fruta? Las bayas como los arándanos y las moras son probablemente las más bajas en azúcar. Bien hecho por perder 3 kg. No te olvides de tomar un poco de té verde.
Gracias por el enlace de música. Estoy seguro de que todos lo disfrutaremos.
Abrazos.
Sylvia xxxx
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Hello everyone,
I have managed to finish reading Snowball in a Blizzard – the tricky problem of uncertainty in medicine. It is not that difficult to read and you do not have to read every page or section. I think this book should be required reading for all patients and doctors. It certainly shows you that medicine is not black and white and there is lots of uncertainty. It definitely shows a patient how to take control in consultations.
I do hope some of you will read it.
The following words stayed with me regarding consultations.
"If you feel you are being bullied, you are being bullied".
I shall definitely try to catch up during the weekend, if not today.
Have a good weekend, Mary, Susie, Gill, Flora, viewfinder, Kath, and of course Marias.
To adagio and Pam, I do hope you will pop in to say hello to Marias.
Best wishes to everyone.
Sylvia xxxx
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Hello Sylvia, Mary and all here
It's been a long long time since I have been here. Please don' t consider me an ignorant person. The only reason that I seldom come here is my phobia with bc. Whenever I hear someone is suffering from bc and its treatment all my negative feelings and emotions are back again. I come to this site to check some success treads saved in my favourites whenever I feel depressed or stressed.
I was in Turkey for 3 months and worked there as an English teacher. Everything was good except I felt I did not belong to that culture and society. I don' t want to degrade their society but in every aspect except human rights they were less developed. If only there were some changes in our political system our country would be among the best to live in as we are rich in many resources.
Mary, I heard you still light candles for me. You are so kind and lovely. I had a big scare about two months ago but it turned out to be nothing.
Marias, thanks a lot for remembering me. I send you my deepest prayers for your complete health.
I love you all and wish you all the best things ever.
This is my latest picture took with my new hair growth taken a week ago on my daughter's birthday with my mother in law.
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Hello Hanieh,
What a surprise to see you back on the thread today. It has been a day of surprises because Marias reappeared as well. We just need to see Gina now!
I can understand your fear about breast cancer, but it is now nearly four years since you joined here and your life goes on. You have to remain optimistic all the time and focus on the fact that so many patients are surviving. Remember you can come here and talk about anything you like.
I was very interested to read that you had been to Turkey for three months and that you taught English there. I would love to hear more about that experience.
I was interested to know that you felt you did not belong to that culture and society. I would think this is a common experience when people are working abroad. We do say in this country that "there is no place like home". When I lived in Canada, France and Morocco I always missed England and I never felt that the other countries were home. Of all three countries I probably felt more at home in France.
I was surprised that you said that you thought Turkey was less developed in every aspect except human rights. I say this without any experience of Turkey or Iran, but human rights is always mentioned as not very good in Turkey and is brought up when there is talk of Turkey joining the EU. This comes up as well with Iran when it is in the news, but we have to remember that this is coming from the West.
Thank you for the lovely photographs. You all look a very happy family and your daughter is so grown up now.
Take care and please remember you can come here to talk about anything you like. I am sure Mary will be delighted to see your post.
Love.
Sylvia xxxx
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Hello Flora,
It was nice to see you on the posts. I do agree with what you said to Gill about her oncologist. I think she should have seen Gill without delay.
I do hope Gill will give herself plenty of time to recover and regain some strength before having any more chemotherapy.
I do hope, Flora, that you will soon be feeling better. I think we are all fed up with January.
I do hope your mum is still coping well.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
I do hope you get to see the Michael Portillo programme The Great Canadian Railways. There are twenty parts and tonight at 6:30 pm (GMT) it is part 15. It is on all next week at the same time.
You might also be interested in another programme done by the historian Lucy Worsley, called American History's Biggest Fibs. It is in just three parts and the second part was on Thursday January 24th at 9 pm (GMT) on BBC4. I shall say nothing about it and wait to hear what you think. Last week it was about the American War of Independence. The third part will be next Thursday.
I was interested to know that you have a Smart Television. I have been very upset that the French channel TV5monde has been taken off and I miss it so much. It is possible to get it on the computer but the sound is awful. Do you get this programme on your Smart Television? Do you get it without any hassle?
I was most interested to read about your past adventures in Canada. Raymond and I lived in the provinces of Quebec and Ontario and we managed to tour by car in Nova Scotia and New Brunswick provinces in the east, along with Prince Edward Island. We did not get to see Newfoundland.
We did fly from Montreal to British Columbia one year, hired a car, toured in British Columbia, went to Vancouver Island, went on a ferry up the inside passage and then eventually drove through the Rockies, saw Banff and Jasper, Lake Louise etc., returned to Vancouver and then flew home. We always regretted that we did not take the train from Quebec across the Prairies going through the provinces of Manitoba, Saskatchewan and Alberta. It was like a missing piece to a puzzle.
As for Alzheimer/dementia, the latest thing I saw on the papers was that there was a connection between these diseases and gum disease. It seems as though everything goes back to gum disease and of course it will be connected to the gut in the mouth no doubt and the gut in the body. It has already been known for a while apparently that gum disease causes heart disease. I sometimes do not know what to believe.
I do not know what to think about Gill and what has been happening to her. I do think her oncologist should have seen her.
I am concerned about the fact that consultants seem to be enthusiastic about adding more and more drugs. I do not think the body can cope. I feel that chemotherapy drugs are enough to cope with.
I do hope Gill is feeling better and that we shall hear from her soon.
What a surprise today with Marias and Hanieh posting on the thread.
That is all for now. Have a good weekend.
Love.
Sylvia xxxx
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Hello viewfinder,
I read your post to Gill and I quite agree that she has been having a very tough time.
I thought I would post again about the chemotherapy treatments and the combinations, as there are not really that many chemotherapy drugs for breast cancer, whether it is with triple negative receptors or positive receptors. I think patients get confused because sometimes posters use the generic names and sometimes they use the brand names. The following are the usual drugs and combinations and the oncologist will decide what he or she thinks an individual patient needs. One of the simplest lists I have found is on page 135 of chapter 10, entitled Chemotherapy in the very latest book – The Complete Guide to Breast Cancer, How to Feel Empowered and Take Control by Professor Trisha Greenhalgh and Dr Liz O'Riordan – expert doctors and breast cancer survivors, 2018.
Chemotherapy for primary breast cancer:
These are some of the common drugs that are used.
- FEC (fluorouracil (5FU) epirubicin and cyclophosphomide).
- FEC – T (fluorouracil (5FU) epirubicin and cyclophosphomide followed by a taxane – docetaxel (Taxotere) or paclitaxel (Taxol).
- T - FEC taxane then FEC.
- AC or EC – AC doxorubicin (Adriamycin) or epirubicin (Ellence) and cyclophosphomide.
Viewfinder, as you can see from the above, there are not that many drugs and not that many combinations. It looks a lot because of this mixture of generic and brand names.
Basically you have:
fluorouracil abbreviated to 5FU and the brand name is Adrucil.
epirubicin brand name Ellence.
doxorubicin brand name Adriamycin.
cyclophosphomide brand name Cytoxan.
We then have two taxane drugs. They are:
docetaxel (Taxotere)
paclitaxel (Taxol)
I hope this helps. Your sister's oncologist will work out the best ones for her and if your sister has any questions about any of them she should not hesitate to ask.
Most of these drugs are quite old and are known as first generation drugs. According to the book, most chemotherapy regimens now include a taxane drug and the taxanes are known as third generation chemotherapy drugs.
According to the book, platinum based drugs (carboplatin and cisplatin) are now used especially if you have a BRCA mutation or a triple negative breast cancer.
I do not know how an oncologist will decide on whether to use a platinum based drug for a triple negative receptor and whether these platinum based ones will be in addition to the standard ones above or will replace one or some of them.
Finally, another regimen is CMF (cyclophosphomide, methotrexate and fluorouracil (5FU)).
My understanding is that these regimens are used because the different groups of drugs work on the cancer in different ways.
You might like to know that on page 134 there is a section entitled Questions to ask your oncologist/specialist oncology nurse. I am sure you would find it useful to look at this.
I would think using this book would be highly beneficial to all patients. It is much better than getting confused on the internet with conflicting ideas. The chapter on chemotherapy is especially useful because it takes you right through the whole journey which represents the major part of the cancer journey. It has simple language, simple lists and simple diagrams, such as those showing you the three ways in which chemotherapy can be delivered.
I have addressed this post to viewfinder, but I hope all people viewing will read it. You need to read all posts on this thread if you want to keep up with what is going on.
Viewfinder, I hope this helps to undo the confusion. I hope your sister is doing well and I hope that you are not forgetting to look after yourself as well.
Thinking of you.
Love.
Sylvia xxxx
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Hello Kath,
It was nice to hear from you and I do not envy you that heat and I can understand what it is doing to the wildlife. These extremes of temperature are becoming very dangerous. Thank you for the photograph.
I was glad to know that your oncologist was happy when you saw him a couple of weeks ago. Hang on to that good news.
I can understand why he was not interested in aches and pains. My oncologist told me at check ups she was interested in everything being smooth of the surgery area and under the arm pits and around the neck. I think they know exactly what they are looking for and if they think there is anything doubtful they send you for an ultrasound.
We all have to live with the after effects of breast cancer, accept the reality of the disease and get on with our lives.
Congratulations on the birth of your third grandson and I am glad to know all is well.
It is very sad what is happening to our fish and I do wonder where it is all going to end. This past week I was watching part of a programme about the mighty rivers of the world and this one was about the Mississippi. By accident some Asian carp got into the river and they had been killing off all the other fish. A couple of men with a boat were frightening these carp out of the water into the air and landing in their boat to be killed off. As I say, I think we are slowly destroying the planet. The human species is a serious danger to this planet with all its bad habits.
How is your work going?
That is all for now.
Love.
Sylvia xxxx
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Hi, Marias!
I was very glad to come on here and see you posting, it's wonderful to hear how you are doing. Also, may I say your English is very good, I wish I could say my Spanish was very good!
It does sound like you are have had a lot of tests, but then you have been through so much over the last couple of years. So now you are waiting for all the results. I hope you can get this all sorted out, and get to feeling very well. It's good that you are walking a lot again, my walking has been cut back since the weather has been so cold. Today is an odd warm day, but that just makes my allergies go crazy. I am sitting here typing with nose running and stinging and eyes burning, it's always something!
So are you saying you are taking calendula pills to help with joint pain?
You are welcome about the candle-lighting, it is a good habit that makes me think of you and Hanieh and I like to think of you very healthy. And Hanieh just posted too, it seems that has happened before, that you and Hanieh have checked in about the same time, a nice surprise!
I hope your area does not get plunged into war, although it seems like everything is volatile these days, perhaps it has always been.
Take good care of yourself, just think of how far you have come.
And I'm glad you feel well enough to go back to work.
I am very glad that you stay in touch, Marias.
Muchos abrazos!
Love, Mary
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Hi, Hanieh!
Wonderful to see you here! I would never consider you an ignorant person, I understand your feelings about reading about people's difficulties with cancer and its' treatment. I have tried to go to some of the fund-raisers related to BC and I find myself uncomfortable with all the hoopla and survivor stuff. I'm not even sure why. Coming here does not bother me, but sometimes I read on some of the other threads and it does bother me. That's just the way it is.
Nevertheless, I am so glad to hear from you. I was wondering if you were in Turkey, or Iran, or perhaps even in Canada. I assume you are back living in Iran now, what are your plans? I'm sure your family is so glad to have you back.
I am glad your scare turned out to be nothing. I had an appointment with my oncologist on Thursday, my surgery site had been aching and sometimes had burning pain. She felt all around and thinks it's fine, she thinks the pain is coming from my shoulder, which still has the injured rotator cuff. The more activity I do, the more it seems to bother. These things do frighten us, it's only normal. Praise the Lord it's okay for both of us! She does want to MRI my shoulder, and make sure nothing odd is going on.
How interesting that you found Turkey less developed than Iran. As Sylvia says, we in the West don't really know what to think of daily life in Iran, it is not something we hear much about. Do you think you will go back to Turkey?
You are as pretty as ever, and look the picture of health. I will have to close now, but hope to hear from you again soon if you can do it. I will be going to church in about 20 minutes, and will remember to light those candles!
Talk soon,
Love, Mary
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Marias - great to see your post and to get an update on your health. So sorry to hear about additional problems, but hopefully with your new diet and going back to work, your life will improve and your blood tests get back to normal values.
It must be a big worry for you with all the politics in Venezuala - praying that things will get sorted out there and that your country will not be affected negatively.
Welcome back and it is so lovely to hear from you.
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Hanieh - you have a beautiful family and your daughter is so pretty - and you look very healthy. Your hair has come back in beautifully.
I visited Turkey a few months ago and I did find it a very fascinating culture, I only spent 10 days there, so of course I would not have been able to get the same feel for it like you did after working there for 3 months. Did you work in Istanbul or Izmer? I didn't visit Izmer, but I have a friend who lives there. I found Istanbul to be noisy and a hive of activity. As a visitor, I did enjoy myself very much. I also spent time in Cappadocia and Ephesus and it was a real eye opener for me to see the cave churches and to learn about the beginnings of the Early Christian Church - fascinating history!
Welcome back to the thread here - I do not come on very often any more - my life is full and overflowing with family stuff - and thank God I do feel well. I worry like the rest of us, of course, but I do not think about breast cancer as much as I did a couple of years ago - so maybe with time, things do get better for us all.
Wishing only the best for you and your family, and take good care of yourself.
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Sylvia - I share your thoughts on the biphosphonate drugs - the thought of taking them terrifies me. As you know I have osteoporosis and have never taken any drugs for it - but because of this I can only have a bone density scan done every 3 years - and I am due for one in the Spring, so I will be curious to see how much deterioration there is - if it is a lot, I may have to reconsider my viewpoint. But I would do that only after much research and soul searching.
Hope your are keeping well - I bet you are looking forward to Spring. Take care and thanks again for all your hard work on this thread - it is much appreciated by all of us.
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Hi Sylvia, Mary, adagio, marias and all
Thank you for all your kind words. It's so nice to have such nice people as friends from different parts of the world.
Sylvia, my teaching experience in Turkey was wonderful. My students were lovely and the general atmosphere there was positive. The only problem I had with them was that their English was not good at all. Here in Iran anyone who wants to learn English should at least study it for up to 5 years and people start sending their children to English institutes from early childhood. But in Turkey adults learn English for only less than 2 years and you see their pronunciation of English words, intonation, fluency and accuracy do not improve as the students in Iran are required to. Furthermore, high school students in Iran are far more busier with their school curriculum and the exams they have every day and the challenge of going to better universities than students in Turkey. Even the English teachers there tended to have the same number of slips of tongue as my intermediate students here have. Of course, it's not their fault but their system is not as demanding as our system is which in turn is more stressful as well. There, they did not have any final term quiz as we have here which can be a prompter for the students to study more carefully and accurately. Also, there are some advancements in Iran regarding architecture, industrial productions such as some household goods and etc that I couldn't find there. But Turkey is a very beautiful country with nice people and wonderful scenery.Their food is lovely and their cafes are really amusing. By the way, when I spoke English there, they couldn't believe I had never been in an English speaking country and that I was Iranian. I was so happy about that. Sylvia, I really love your language and it has always been my greatest honor to spend my life learning it. Although my acquired accent is American, I always enjoy hearing British accent.
Iran once used to be a growing power in the middle east before the revolution. Now more than 90 percent of people are against the current oppressive policies and the ruling power, yet protesting means putting yourself in great danger. Now a days when you talk to people, most of them will tell you that damn revolution was guided by the west to take the ever increasing power from Iran. Why such a person as Imam Khomeini lived so safely in France for some time for the things to settle for his artival and after the king' s departure he was escorted to Iran with the French pilot holding his hand in respect. Why no western country supported our king or even let him enter their country after all those guided movements in Iran yet supported Iraq during the following eight-year war between Iran and Iraq which was of course started by Iraq. Politics is so cruel.
Mary, thanks a million for all the positive feelings you give to me. Your candles mean a lot to me. They are the symbol of our friendship, sympathy and prayers. Although we have different religions I deeply believe in God and the different ways we can connect to him no matter which religion we have been born into. I still find lots of comfort in Jeol Osteen's sermons and I'm really sad I can not have his books here.
adagio, I was in Istanbul for some time and then in Denizli which is a city near Izmir. It was a small beautiful city. I was planning to live in Izmir for the next year but I changed my mind. For now I just like to spend my vacations there and live here until my daughter finishes school.
By the way, I had hair extension in Turkey but removed it when I came back to Iran.
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Hello Sylvia and everyone here,
How wonderful that so many old posters have come back. Your wish came true Sylvia. I'm too new to remember Hanieh, but do recall how worried you and Mary were about her. She looks so well and happy.
I apologise for neglecting to answer all the good wishes and concerns people have expressed for me. I really have been knocked back by both the Paclitaxel and the virus.
Sylvia, you asked if I'd been admitted to hospital after my last infusion. I was, twice, stayed for about four hours each time with temperature hike. I was given IV antibiotics both times, along with saline and IV anti-sickness. I'd been assured that Paclitaxel wouldn't cause vomiting. It certainly did! In my view, vomiting may well have caused the loss of essential minerals necessary for muscles. However, I've yet to discuss this with my Oncologist. My very capable key worker Oncology nurse is trying to arrange an appointment with my Oncologist. In the meantime she has rearranged my next treatment to February 10th and is suggesting that my dose of Paxlitaxel is lowered. I was on a very high dose, my body clearly couldn't cope. She has also organised strong anti-sickness medication. I honestly think I would have ended all treatment had it not been for her. As it is, I'm beginning to feel much better than a week ago.
Of course, I should be seeing my Oncologist much more often. She has far too many patients and far too little time. The hospital is a PFI and all money goes to pay this off. Nothing is left and the debt is massive. Most PFI hospitals are failing. Here there is no money left for staff, syringe drivers, pillows, and I was asked to buy my own paracetamol on the palliative care ward as it was too expensive. The Care Quality Commission placed the Hospital on Special Measures and ranked many departments as unsafe. It has become a very dangerous place in many ways. I'm in the fortunate position of being able to check everything. There have been too many mistakes.
I'll keep you all informed about my progress. I do think this site is invaluable for exchanging information. Not all chemotherapy is straightforward it seems! Maybe my body was just too keen on fighting off the poison it was being asked to cope with. After all, before cancer I was rarely ill at all, not even colds.
Keep well everyone. It's just started to snow here - this shouldn't make me happy, but it does.
Much love,
Gill X
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Good to see you back, Gill.So glad you're feeling a bit better now and that you have a really good nurse on your side.
Macmillan nurses - or the like - are really invaluable in these crazy times when it is so hard to see one's consultant. They often know almost much as the doctors anyway.
Oh dear, your hospital does seem to be in a rather dismal state if you have to buy your own paracetamol etc. As you have heard, Oxford is having its own problems too.
As you say, the ability to check everything seems increasingly important in any hospital experience these days. Along with her first paclitaxel infusion, my mother was prescribed the very anti sickness drug she had a major allergic reaction to with the AC.This order came from her oncologist(!), and the mix-up was probably to do with the sudden transition from public to private. Luckily, she's on the ball enough to recognise the mistake and refuse to take it!
Anyway, enough of the failings of hospitals today.... Luckily, the staff are-in the main-wonderful.
Anyway, onward and upward. I'm glad your chemo has been put back so that you can have a really good rest. You'll probably be amazed at how much better you feel by Feb 10th!
Flora x
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Hello Flora,
I'm so pleased that your mum is tolerating Paclitaxel well, but horrified that the very drug that she was allergic to was almost given again. Your mum was on the ball, many patients are not. I'm always shocked by those patients who always believe that the doctors and nurses know best.
My Macmillan nurse was too in awe of the surgeon to be supportive. My Oncology key worker has been excellent and seems to understand more about reactions to chemotherapy than my Oncologist. She insisted on my PICC line when I'd run out of veins.
I think part of the problem has been that I continued to insist on treatment and on seeing an Oncologist after I'd been refused. Going to Dr. H. seems to be considered as some sort of betrayal. I cost them money, aged over sixty and with a difficult to treat cancer.
I do hope that your mum continues to do well and can soon put this whole thing behind her and get on with all the happy things life has to offer.
Hoping too that your niece and her parents are coping well with the treatment.
Remember to look after yourself too Flora.
Love,
Gill
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Hi Sylvia,
Thanks again for all the excellent information.
My sister has had a very bad cold for several weeks and is on antibiotics. As a result, her chemotherapy is delayed. It is possible that my daughter may not be there for the first treatment as planned. However, she has been able to help my sister get a lot in order, including buying supplies. Plus, my sister has several other people lined up to help going forward.
A lot of info in the recent posts and I apologize for not having the time to respond to them individually. I enjoyed the stories about other countries and, of course, so sad to learn what some have been going through. I wish everyone only the very best!
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Hello viewfinder,
Thank you for your post. I do understand that you do not have the time to answer all individual posts. I am finding it quite a struggle as well.
I am glad you found the information about chemotherapy drugs helpful.
I do hope your sister will be feeling better soon and if I were her I would not start chemotherapy until I felt strong enough. During chemotherapy if it were me I would just concentrate on taking the recommended regimen plus the medication given to take for a few days afterwards. Keep well hydrated, keep looking forward and being optimistic.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post.
I do hope you get to see your oncologist soon.
I do remember, when I was going through treatment on a three weekly basis, that I saw the oncologist or her registrars before going for my chemotherapy treatment.
I was horrified at what is happening at your hospital and I do think all this PFI was completely wrong. The politicians of both parties have done it to hospitals, schools etc. and they have brought this country down as they live in their protected environment. I cannot believe the price that the NHS is paying for cheap drugs such as paracetamol.
Wishing you better soon and a smooth journey through your next chemotherapy session.
Love.
Sylvia xxxx
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