Calling all triple negative breast cancer patients in the UK
Comments
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Hi Rhonda,
It is a indeed a surprise that you are HER2 positive. You still have to determine by how much percentage because your succeeding treatments will depend on it. It is frustrating to know that your docs are suggesting another round of chemo but what can we do except follow? We've started this and we have to finish it.
Carboplatin was my first chemo drug choice but my MO prevailed upon me saying it is very cardiotoxic and is usually reserved if the first-line drugs don't work. It really sucks sometimes when you are helpless about these things.
Just remember to focus on the reasons or things that we are doing these things. Think of your loved ones and how you would want to fight this miserable disease to be with them.
We'll be here to give you support! You are not alone!
Love,
Gina
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Gina,
Thank you for your encouragement.He doctor said they aren't considered chemo but they have tons of side effects.Heart failure for both especially if you have Adrimiacin-which I did.I am already thinking of refusing
The Perjeta.I don't need two heart toxic drugs.I will fight the good fight
Rhonda
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Hi Mary,
Thank you for your congrats. You are always generous with your kind and helpful words. You are very good in encouraging others and knows when to use the appropriate words and ideas. As with Sylvia, the manner you arrange your sentences in response to posts are always very organized and clear. I enjoy reading them. You also have a nice sense of humor. To me, you are a big help in my journey.
I missed your query on Cocker Annie. According to Mandy, the daughter, Annie is doing much better now with her first completed chemo (i think Carboplatin and Etoposide) and it has shrunk her lung tumor from 7cm to 5cm. She's also feeling stronger since drinking Gatorade to hydrate her as she had been having difficulties swallowing pills, food and liquids before aside from contracting a superinfection which name i forgot. After all the delays in treatment, overall, her condition is much better now. She replied a few times to my picture and gif posts and i find her warm, funny, down-to-earth and wise. The reasons why she's popular. I hope she recovers and get over this new journey of hers as i think she was almost 4 & a half years NED from her previous bc before her lung tumor appeared. It is so unfair for her.
Ok, i have to go. Always a pleasure reading and posting to you.
Love,
Gina
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Sylvia,
You should have been a onco doctor. Your passion, interest and knowldge plus your big heart is what people need from a great doctor. The first oncologist whom i consulted before my surgery is Chinese, a General Surgeon and has extensive knowledge on Traditional Chinese Medicine. He is very good but charges so much that you would get cured from cancer but surely die from poverty. Lol!!!
Thanks for your latest picture post about Healthy living and avoiding diseases. There should be more doctors who specializes in both oncology and integrative medicine. That's a formidable combination.
I will take my month off from treatment and relax. Try to forget about my condition and regain my normal life with the addition of the Spartan mindset this time. Then, decisions will be made after my lab tests results, I will let you know of course.
Love,
Gina
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thanks Gina
I'm just going to post some pics of me and the amazing radiotherapy team
Cheers
Kst
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Hello Rhonda,
If that were me I would be pressing for surgery and for removal of lymph nodes.
Wishing you good luck.
Sylvia xxxx
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Hello Mary,
Thank you for your posts. In this country we have, what is called a Constitutional Monarchy, with the Queen as Head of State. I find it antiquated and believe we should be a democratic republic. The Lords is the upper house and is unelected. It used to be fully hereditary based on your birth into the aristocracy!!! This is beyond belief. It is still unelected and the politicians in the Commons stuff it with their party cronies, especially when they retire. There is constant talk of getting rid of the House of Lords and having a fully elected second chamber. The powers that be are very good at talking but not good at taking action. Both Houses are too big. The Commons has 640 MPs and in the Lords there are about 900, most of them past their sell by date! They all get too much money and claim a lot more through expenses. In the Lords a person gets £300 a day, just for signing in, even if he leaves straight away after signing.
I do not believe in Royalty, we should have an elected President as head of state and the so-called Royals should be put out to pasture. Our politicians are always on about equality and fairness, so it is about time that words such as royal and commoner were banned. We need a much smaller number of people in two elected houses and elections by proportional representation. I cannot believe the way we are governed. Another thing I strongly believe in is the abolition of all titles here. Giving people titles is no way to create equality. Can you believe that the Queen is still head of state in Canada, Australia and New Zealand and about fifteen other smaller countries.
Last night I was listening to the Nigel Farage phone in show when it went off the air. He was broadcasting from the Conservative Convention in Washington when the Secret Service came in to do a security sweep. That was the end of the show for yesterday. Nigel did manage to phone back to LBC to let the listeners know he was alright. He will be making a speech at the Convention today at 12 noon Washington time. Donald Trump will be making a speech before him.
Fond thoughts.
Sylvia xxxx
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Hello again, Mary,
Thank you for your second post.
I think the main problem with dairy is when it is from cows. It is something about a large animal and growth factors. Chris Woollams always emphasises this in his posts. It seems goats cheese and ewes cheese is fine as they are smaller animals. Who really knows? Just enjoy your bit of goats cheese. It sounds very nice.
You mentioned Donald Trump and his invitation to the UK. Our Prime Minister invited him on behalf of the Queen on a State visit here. The protesters have been out ever since. I think they are mainly students. All kinds of villains have been here on State visits and nothing has been said. The democratically elected President of the US who has done nothing wrong and is probably unique in carrying out the wishes of those who voted for him, is persona non grata here.
I think you are right about "for hire" protesters. This country is in a state of constant agitation about all the wrong issues. I get very tired of it all. If I were Donald Trump I would tell this country that he is not interested in coming!
That is all for now.
Fond thoughts.
Sylvia xxxx
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Hi, Kath,
congratulations to you for being done and dusted, as you say! You have had an eventful time of it, you might win the prize for traveling the farthest to finish your treatment, it's good you only had one mishap.
As Gina said, you will get periodic check-ups, and scans if the doctor thinks you need them. And feel free to ask if you think something should be scanned, the doc will either do it or explain why you don't really need it. Keep your eyes open and be aware of any changes in your body, and as time passes the fear and worry will lessen. I wish I could say it goes away completely, but I can't; we all live with that.
Keep us posted, Kath!
Cheers to you!! Mary
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Sylvia,
This one extra treatment will just postpone it a week and God willing if my levels are good and surgeon's schedule
Is clear then surgery 3 weeks later. The surgeon does not want to delay either. Now I am worried the biopsy site is infected.There is a hard lump and it feels warm.I will see the doctor on Wednesday.
Rhond
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Hi, Sylvia,
I did hear about Nigel Farage speaking at the Conference in Maryland USA today, I hope I will be able catch some of it. If not, there will be coverage online later, and on TV tonight, I'm sure. He is always an eloquent speaker.
We've been having very balmy February weather, the poor plants think it's spring, and have put out buds, and some flowers. Tonight it will all change, back to the 20sF, below freezing.
Chris Woollams did not yet send out a post in February as far as I can tell.
Talk soon, love, Mary
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Hello Gina,
Thank you for your post and for your very kind words. If I had been an oncologist I would have had to be an integrative one. I firmly believe that orthodox medicine has to integrate with alternative medicine and that complementary treatments have to be part of it all.
I was interested to know that the first oncologist whom you consulted is Chinese. My oncologist was a Chinese woman, now retired, and I had a lot of confidence in her. She was very helpful and kept me with her for ten years. She retired soon after she was able to discharge me nearly two years ago. I did not discuss alternative treatments with her, because I know she believed in her chemotherapy drugs, but she did admit they were toxic and that she would have to poison my body in order to make me better. That oncologist was also the patron of the FORCE cancer centre in the grounds of the hospital. This was in a lovely modern house with a garden where you could go for a cup of tea or take your lunch. It was run by volunteers, some of whom were qualified to give you all kinds of complementary therapies. The oncologist knew I was taking other things but she never criticised anything.
I think that Chinese medicine probably has a lot going for it.
I was glad to know that you appreciated the latest picture post about healthy living and avoiding disease.
I think it is a good idea for you to have a month off from treatment and relax. I am convinced stress plays an enormous role in the development of cancer, so relax, laugh and enjoy yourself as much as you can. You have a good sense of humour, so that will help.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Everyone,
I'm just popping in quickly before my lunch hour is over.
Sylvia, Congratulations on your latest survivor milestone of 11 years and 8 months. I completed my radiation last Fri, and hoping to be free of the side effects soon.
Mary, I can say that I have tried several times to meditate, and though I can sometimes drift into that state pretty easily, I also encounter that classic problem of having my mind wander constantly. I know it will be worth working on that so I can get the full benefits of the practice.
Gina, I'm so happy that you finished chemo!
Rhonda, I'm sorry that you've had some unexpected news, but I'm glad that you got most of your treatment completed.
Valstim, Thanks for the recommendations. I'm leaning heavily on the Silvadene, because I have open sores under my arm. I can't wait until those are healed so I can stretch and get back into a routine again.
Kath, Congratulations on finishing your radiation!
Cheers, Pam
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My doctor took one look at my gut and refused to believe that I work out. So I listed the exercises I do every day: jump to conclusions, climb the walls, drag my heels, push my luck, make mountains out of molehills, bend over backward, run around in circles, put my foot in my mouth, go over the edge, and beat around the bush.
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Read it Carefully to know what it is…
A Man is driving down the road and breaks down near a Monastery.
He goes to the Monastery, knocks on the door, and says, My Car broke down.
Do you think I could stay the Night?the Monks graciously accept him, Feed him Dinner, even fix his Car🔧.
As the Man tries to fall asleep, he hears a Strange Sound💬.
The next morning, he asks the Monks what the Sound was, but they say,
We can't tell You. You're not a Monk.
The Man is disappointed but Thanks them anyway and goes about his Merry way.
Some years later,
The same Man breaks down in front of the same Monastery.
The Monks again accept him, Feed him, even fix his Car🔧.
That Night, he hears the same Strange Noise 💬that he had heard years earlier.
The next morning 🌞, he asks what it is, but the Monks reply, We can't tell you😶. You're not a Monk.
The Man says, All right, all right. I'm dying to know.
If the only way I can find out what that Sound was is to become a Monk, how do I become a Monk?
The Monks reply, You must Travel the Earth 🌍and tell us how many blades of Grass there are and the exact number of Sand pebblesWhen you find these numbers,
You will become a Monk.
The Man sets about his Task.
Some 4⃣5⃣ years later, he returns and knocks on the door of the Monastery.
He says,
I have Traveled the Earth🌍 and have found what you have asked for. There are
145,236,284,232 blades of grass and
231,281,219,999,129,382 sand pebbles on the Earth🌏.
The Monks reply, Congratulations. You are now a Monk😇.
We shall now show You the way to the Sound.
The Monks lead the Man to a Wooden door🚪 where the Head Monk says,
The Sound is right behind that Door.
The Man reaches for the knob, but the door is locked.
He says, Real funny. May I have the key?
The Monks give him the key, and he opens the Door.
Behind the Wooden door is another Door made of Stone🚪.
The Man demands the Key to the Stone Door.
The Monks give him the Key, and he opens it, only to find a Door 🚪made of Ruby.
He demands another Key from the Monks, who Provide it.
Behind that Door is another Door🚪, this one made of Sapphire,
So it went until the man had gone through Doors of Emerald,
Silver,
Topaz,
and Amethyst.
Finally, the Monks say, This is the last Key🔑 to the last Door.
The Man is relieved to know end🏁.
He Unlocks the Door🔓,
Turns the Knob,
and behind that Door he is amazed 😳to find the source of that Strange Sound📡
. . . .
. . . .
. . . .
. . . .
☝😐😶But he can't tell You what it is because You're not a MONK!!!
😂😂😂😂😂😂😂😂😂
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Kath,
Thanks for that last picture you posted!
You're such Cutie!!! The eyeglasses look good on you!!!
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Hello Pam,
Thank you for your kind words on my latest milestone.
Congratulations on finishing your radiotherapy.
Fond thoughts.
Sylvia xxxx
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Hey, Gina,
Your jokes are very funny, I never realized stressed backwards is desserts!! Very good! Sometimes if I am tired and haven't slept well, I crave sweets. My doc says it is just that the body is trying to find energy anywhere it can, and sugar is a fast-working energy source. But not efficient.
I had dinner out last night in a very nice place, I overheard the waitress tell someone they had creme brulee, my ears perked up. But they were out of it by the time they got to us. Oh well, that's okay, didn't need it anyway.
The tulip picture you posted is beautiful. The last time I tried to get a tulip bed going, I went out and bought about 60 bulbs. We prepared the bed with lots of manure, planted the tulip bulbs deep, and waited for spring. When spring came, nothing happened. Finally I went out and dug around, and there was not a bulb to be found. Over the winter, something had eaten all of them, not sure what. No more tulips for me, I will look at your picture instead! I have a good sized hosta bed, it was about 15 years old and getting bigger every year, last year nothing came up, when I checked all the plants below ground were gone, I replanted and am not sure yet if anything will come up this spring. I am plagued with varmints at the place where I have these things planted, it is very isolated.
Hope you are feeling great, and have a very good Sunday!
Love, Mary
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Hi, Pam,
Good luck with the meditation, I think it's a good habit to have. I was told to not worry about it when my mind wanders, just go back to my mantra and keep saying it. Sometimes I picture myself with a lasso and I am gently roping my mind and pulling it back with the lasso (mantra).
I hope your sores heal soon, that sounds painful. The things we have go go through, I guess what doesn't kill us makes us stronger, as the saying goes.
Have a great Sunday, talk soon,
Mary
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Hi, Sylvia,
I did find the Nigel Farage speech he gave here in US that we talked about, on YouTube, it is about 13 minutes long. It is a fairly fluffy speech, he talks about Brexit, and then he compares it to Trump's surprise win. He is such a good speaker, I do wish Trump had some of his eloquence. He is also not a fan of Tony Blair, but spoke of him with disdain.
Later in the day I heard a couple of commentators on the radio, who were British, talking about Brexit. They thought it would get through the house of Lords, but after that they weren't sure. I'm not sure what that means? I thought it just needs to be implemented. They thought that when Donald Trump visits Britain he should avoid appearing in London, but instead go out into the more countrified parts of UK. I would imagine his Security will be a nightmare.
Have a very good Sunday, I will talk to you again soon!
Love, Mary
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Mary,
I love looking at flowers too but i'm not a green thumb, and besides, i don't have the space to grow them. I just enjoy going to parks occassionally where there are lots of flowers. It gives me the feeling of a fresh new hope.
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Funny Baby!
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Hi Sylvia and all
If I see my old age, I may be like this when I'm about 70. I wish to see those days too.
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hi all
See my breast surgeon in two weeks for post treatment check up and freaking out! Not sure he will do lots this early as it't will only be 9 weeks post chemo and 3 weeks post radio when I see him but I'm freaking out ! Thought they would leave it 3 months after rads! God I hate this feelin
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Hello Mary,
I shall try to have a look at the Nigel Farage speech on YouTube when I can find the time. I agree that Nigel is a fantastic speaker and I do wonder where UKIP is going without him as the leader.
We have recently had two by-elections here with surprise results. They were both in the North of England and were held because two Labour MPs had resigned. In one, the Conservatives won and that was a surprise, because Labour had held that seat since 1935. In the other one, another traditional Labour seat, UKIP was hoping to win and get an MP in Parliament, but Labour held onto the seat by 2,000 votes. Everything these days seems to be a surprise. I think the UKIP candidate messed it up. Last night on LBC Nigel was asking what UKIP had to do now and also what Labour had to do now. It was a very interesting programme. Both parties are divided and squabbling and in the meantime the Conservatives are forging ahead, even though they are divided. I think a lot of ordinary people here are very angry and I think anything could happen. This country is a patch and mend country, a muddle through country, and wants to vote in the middle, which is a muddle, and I do not think they vote on ideology or what is good for the country as a whole. There is an "I am alright, Jack" mentality. I think we need a strong person in control here to give this country a good shake up.
Last night a programme started about the House of Lords and Raymond and I watched the proceedings there with disbelief and concern. It is all so antiquated and rather like a pantomime. The sooner it is abolished the better.
I do not know where Labour is going. I think we need a General Election now.
I am still not convinced the will of the people on Brexit is going to get through. It will probably get through the Lords, but then in both the Commons and the Lords I think the poor losers will start a process of amendments to hold everything up. Theresa May wants to activate Article 50 in the next few days, but if that gets done, there is still a two year process before we can be in control of our immigration and our own country. It could be a lot longer.
Tony Blair and his un-Merry Men have reappeared and are trying to stir up trouble. He should be behind bars.
There is talk of Donald Trump, when he comes here, going to a big open forum, such as Wembley Stadium, but somewhere in the North, and addressing ordinary people. I think he is very good at that. If I were him, I would not want to come here. There must be more interesting countries! If he went to Russia that would make me laugh. If I were him that is what I would do.
I hope all is well with you.
Love.
Sylvia xxxx
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Hello Hanieh,
I was very interested in that ageing booth photograph. It is very clever. Just tell yourself you are going to see those days.
I hope all is well with you.
Love.
Sylvia xxxx
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Hi all,
Forsythia is blooming even though it's still February and it's been so very dry here!
Mary
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