Calling all triple negative breast cancer patients in the UK
Comments
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Hello all,
I have had a lot of confusion and frustration with this new website. This may have been posted on here so maybe old news but thought I would share an article that was brought to my attention.
https://interestingengineering.com/new-molecule-kills-deadliest-cancer
P a u l a
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Hello Gill,
Thank you for your link. I have had a look at it and found it interesting.
I do understand your frustration about the confusion between metaplastic and metastatic. It does not surprise me. Google thinks it knows best! I find that sometimes when I ask questions I do not get an answer to my question and it is side-stepped with something irrelevant. I know your metaplastic type of cancer is rare and so there may not be too much new research available. As for triple negative tumour status in general, I have always been very happy not to be on any medication after post standard treatment. The only thing I take is a vitamin D supplement.
I have given up on our Prime Minister and Parliament in general. They all seem more interested in keeping their very well paid jobs rather than creating a fair and equal society. We need a modern country and not one steeped in the past. There is too much ceremony and not enough substance.
I understand that we have now gone from cake to venison with the Prime Minister saying let them eat venison! What a circus it all is. I wonder how much methane Boris generates!
That is about all for now. Enjoy your weekend.
Love.
Sylvia xxxx
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Hello Paula,
It was nice to hear from you. How are you getting on? I do hope that all is well with you.
Thank you for the link. I shall look at it in more detail later.
I do understand your confusion and frustration with this new website. I do not like it at all and do not understand why it had to be messed with like this. This new website is bland, without character and it has taken away the pleasure and enthusiasm of posting.
Keep well and keep in touch.
Love and best wishes.
Sylvia xxxx
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Thanks, Gill,
I'm waiting patiently for normality to return. This weekend has been tough, though I try to eat and drink as much as possible. My husband gets me whatever I ask for, though sometimes, nothing seems appetizing. I try as hard as I can. I'm also sleeping a lot.
I'm up this morning, just to give it a try. But it didn't last long yesterday and I already feel myself waning. But I do feel less achy. I dislike lying down most of the day. Unfortunately, that's the extent of most of my day. I'm waiting for the day when this passes. Hopefully that will be soon.
I've been waiting to get an appointment with the plastic surgeon. We've called that office a few times with no return call. I did tell them in the message that I am making a surgery choice before the end of the month and that my breast surgeon's office is right across the hall from their office. If they don't return this week, I'll call the breast surgeon and have her call them.
Enjoy the remainder your weekend!
Love, Sue
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Hi Sue,
This stage is absolutely exhausting, I stopped fighting the tiredness and took to my bed. If your body tells you to rest, listen to it! I remember how worried I was that some women on the forum were going on bicycle rides, long walks, jogging and generally carrying on as normal. That certainly isn't the case for everyone. Some of the patients I saw regularly at the chemo unit were reduced to using wheelchairs or walking frames just to get from their car to to the unit. I was one of them. I hated feeling so helpless at the time - but whatever gets you through. Normality will eventually return. I found this difficult to believe, but here I am. I do get more tired than I did before treatment, but at the age of 67 I might well have needed to slow down a bit even without treatment.
Your appetite will return quickly after chemotherapy ends. Mouth ulcers magically disappear too. Your mouth may continue to feel dry for a while afterwards, so the need for regular hydration continues, but water tastes like it should taste, so not a problem.
You plastic surgeon is taking too long as you have serious decisions to make. Hope your breast surgeon can move this forward.
Sue, you are doing really well. Your are very near to the top of the hill now and believe me, the climb back down is much, much easier than the climb up!
Love,
Gill xxx
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Hello Paula,
Thank you for the link. My husband read the article out to me a few days ago - from the Guardian I think. The fact that the trial had a100% success rate is amazing. Lets hope that this is the breakthrough we've all been dreaming of.
Gill X
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Hello Sylvia,
Another day, another scandal. Today it appears that Johnson's food strategy for dealing with the food crisis looming on the horizon is vague, factually wrong, and not worth the paper it's written on. I suppose it's just made up. Time to stock up on pasta, rice and tinned meat, fish and vegetables. Yes, 'let them eat venison' is just what people having to use food banks needed to hear. Vegan school dinners too! I'd say that growing children should be kept well away from highly processed food. Vegetarian food would be a better option as it includes cheese, eggs and milk. Children need to keep protein levels up.
Apparently the NHS has adequate funding. This is from the Health Secretary. There are staff shortages in almost every hospital department. GPs are leaving to take up other careers and there's a mass exodus of nurses and paramedics. Adequate is a lie. Our NHS is nowhere near adequate. I've never been so angry with a Government. Older retired Tory ministers are speaking out and making it clear that those in power today are not Tories. They are deeply ashamed of what the Party has become. I'm very much concerned about cancer care. Cancer is always a frightening diagnosis, but there was always surgery, radiotherapy, chemotherapy and longer term drug therapy available. It wasn't always as timely as we would have wished, but it was available and it did save lives. This security blanket has been snatched away. Now there are no guarantees. Long waiting lists are just about doable for some conditions, but cancer isn't one of them. I feel helpless in the face of such cold contempt shown to the public, especially the sick.
We've been taking vitamin D since the beginning of covid. No idea if it works or not as it's very difficult to measure via blood tests. Apparently some people don't need as much as others and taking extra simply doesn't make any difference to most people. I'll keep taking it in the hope that it helps. There's a lot of late covid infections around. I know of several people who have been infected recently, all have had at least 3 vaccinations and non have needed hospital treatment. I see that monkey pox is more prevalent amongst younger adults. In itself monkey pox isn't dangerous, but scientists are concerned that since animals are becoming infected, there's a chance of it mutating into something more dangerous.
I'm off now to catch up on some reading and eat chocolate.
Wishing you and Raymond a peaceful week.
Love,
Gill xxx
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Hello Gill,
I have just read your post and it is very interesting as always.
I am in the middle of working my way through a list of things to do and this seems to be never ending. I shall write more later on today but I just wanted to say that I noticed there is a new newsletter from Chris Woollams and some of the headings sound very interesting. I hope we shall be able to discus some of them.
I wanted to say as well that I was horrified to hear on the news on Radio 4 this morning that GP surgeries are employing staff known as Patients Assistants to see their patients instead of a GP. It sounds as though these Patients Assistants are unqualified and come from agencies. Apparently they are cheaper to use and proper GPs are using them because that is all their budgets can afford. We are going to hell in a basket. Try to watch Panorama tonight as it is all about this. When oh when are the powers that be going to get rid of Boris and get rid of his front bench? When oh when are we going to get the verdict on Keir Starmer?
I shall get back to the thread later today.
I do hope you enjoy your chocolate! I find I cannot do without some Montezuma 100% chocolate on a regular basis.
Regards to Michael.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia,
I have been following your forum since January 2022 when my mother was diagnosed with triple negative breast cancer and I want to thank you so much. You have given me hope and when we were waiting for results I would read your Inital post about being 16 years clean over and over and it helped me so much and gave me hope and calmed my anxiety. My mother has triple negative HER2 1.9mm in 1 lymph node and is having 16 rounds of chemo, a lumpectomy and radiotherapy. They are still so shocked that she found it because it is so incredibly tiny! I love my mum more than anything and I cannot tell you how important and helpful this forum has been to me, it has kept me sane so I want to thank you from the bottom of my heart.
my mum has around 6 rounds of chemo left, she was in hospital with chemo induced neuropenic sepsis a few months ago, I forced her to go in because her temp was 38; the nurses said I saved her life! She is so beautiful and only 53 years old so she fought it and the second lot of chemo has been a breeze for her. At first the hair loss freaked her out but we went and got her some wigs the other day and she looks better than ever and all is going well.
thank you again Sylvia.
kelsey x0 -
Hello Kelsey,
Thank you so much for your post and for your very kind words. I am so glad that I was able to help you as you go through this journey with your mother. You have to keep telling yourself that she is going to be fine and that you will get back to a normal life together.
A diagnosis of breast cancer is always a shock and it takes time to absorb it and then go through all the initial phase of what is going to happen. You settle down as soon as your treatment begins and you get through the ups and downs of it.
I was reading the treatment plan for your mother and saw that she is having sixteen rounds of chemotherapy. This sounds like the usual six months of chemotherapy with an infusion every two weeks. What chemotherapy drugs is your mother having and in what combination? She is now getting towards the end of her chemotherapy journey, so she must hang onto that and tell herself this will soon be behind her. Having already had ten rounds she is probably feeling very fatigued.
I was so sorry to read that your mother had been in hospital with chemotherapy-induced neuropenic sepsis. I know how serious sepsis is and I was glad to know that you had got her to go into hospital. You certainly did save her life.
I was glad to know that the chemotherapy treatment has not been too harsh on her since.
I think that when we start chemotherapy, even though we are warned of hair loss, it still comes as a big shock. I remember I was dreading it, but had got a nice wig, ready for it. My hair started to fall out after the second infusion of chemotherapy. I was having epirubicin (Ellence) and cyclophosphomide (Cytoxan) together at the time for three months and then went onto docetaxel (Taxotere) for three months. The routine was every three weeks at that time. Patients say they find the weekly or two-weekly routine easier to deal with.
It is so good that your mother was able to find the small lump. Was she having mammograms?
You sound in good spirits now in your post and that is good and it will help your mother.
I was wondering what country you are posting from? We have had posters from all over the world. When I started our thread back in 2010 because I thought the UK needed something and there was not enough being said about patients with a tumour status of triple negative. Most of the emphasis was on hormonal breast cancers and there was too much frightening news about triple negative. When I was first diagnosed I was not told about triple negative. I was just told it was not hormonal.
I do hope you will stay with us.
Love and best wishes to you and your mother.
Sylvia xxxx
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Hello Gill,
I have at last found a bit of time to sit down and post.
I am wondering how much more time we are going to waste on this chaotic government? It is just unbelievable. What world are they living in?
Whether it is food, health, housing, transport, social care, they just do not have a clue. I was really concerned about what came to light on that Panorama programme and the goings-on of this company Operose and the use of Assistant Physicians. Apparently there is a chain of NHS GP surgeries being run by Operose. Because the GPs do not have enough money in their budgets they are using Assistant Physicians, unqualified, to see patients. Where are we going? This is dangerous and is dumbing down professions. I thought it was bad enough when they brought in Teaching Assistants but this latest is beyond belief.
I hardly bear to think about where we are going in this country, especially with cancer care. We are so boastful and yet what have we to boast about? There is so much poverty, inadequate housing, horrible crime and so on, and yet we have the elite living a life of absolute splendour and having more money than they know what to do with. This idea of levelling up is Johnson nonsense, just like oven ready Brexit!
High dose vitamin D is the only supplement that I take. I have taken it for ever, it seems. When I was diagnosed with breast cancer I got my breast cancer surgeon to take a blood test to see what my vitamin D level was. When the test came back she said it was excellent and that the lab had sent their congratulations to me for it!
I do wonder whether all the problems we have in this country and around the world will ever be resolved. I am so against war because it just destroys everything, kills innocent people and impoverishes all of us and we have to rebuild. War should be a crime and an abuse of human rights. I do not know where we are going with our open borders here. They need to be controlled. I heard this yesterday on a news programme. "It is not racist to want to control your borders." I was looking at a map of Europe yesterday and it reminded me how small Western Europe is compared to Eastern Europe, especially Ukraine. We are a small island and have a population of about seventy million. Ukraine is gigantic, is the largest country in Europe, and has a population of about forty million.
Coronavirus is still with us but we do not get any statistics any more. The last news I heard was that last week there had been a million new cases and rising. I was expecting it after all the crowd gathering for the Jubilee and all the sports events. People are acting as though it has gone. As for monkey pox, who knows where we are going with that one?
I thought you might appreciate this quote. "We are moving into an anti-democratic age with rule by experts- the tyranny of experts". I prefer to trust ordinary people more than the elite like Charles Windsor and the Archbishop of Canterbury.
That is about all for now. I see that Mary has gone missing again, not to mention Kath, HelenLouise and adagio.
I am not looking forward to hot weather.
Take care and keep safe.
Love.
Sylvia xxxx
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Hello Sylvia,
How have these patient assistants managed to slip under the radar? During my last stay in hospital, over three years ago, I frequently had visits from a male wearing dark blue scrubs. He told me that he was somewhere between a doctor and a nurse. I don't know what kind of training he had, but he must have missed the lectures on patient dignity and the importance of listening. I had sepsis and c dif yet he thought it was a good idea to sit on my bed. My daughter took over 10 years to train as a doctor. More qualified and experienced nurses train hard to qualify as nurse consultants and nurse practitioners. Would we have ever known about patient assistants if it hadn't been for Panorama? They are employed because they're cheap. Now we are told that people who think they might have cancer can go to a pharmacist and she/he can book them in for a scan if deemed necessary! Then what? The waiting lists are overflowing with properly diagnosed, confirmed cancer cases.
Tory ministers are now considering withdrawing the UK from the European Court of Human Rights. Heaven help the poor, the sick, the persecuted. I have difficulty being polite to those still supporting the Conservative Party and Norfolk has more than its fair share.
I had a quick scan of Chris Woollams' newsletter, but haven't been able to have a closer look yet. As always, too much to do and too little time.
Weather very hot here and we are urgently in need of rain.
Take care.
Love,
Gill xxx
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Hello again Sylvia,
I've only just seen your last comment.
I agree with everything you say about where we are going. England is now a country that caters only for the uber wealthy. The rest of us have to work and pay exorbitant taxes to keep them in luxury. I've nothing but disgust for this Government. Have you noticed how many of them have been investigated for sexual assault or rape recently? How many sit on the front benches after having one too many at the bar beforehand? How many have taken far worse than alcohol? The Tory front benches are a disgrace to Parliament and to democracy - though there's precious little of that left.
The NHS is being dismantled quite quickly now. The many services that have been outsourced are failing, but nothing is done to bring them back into public ownership. Several hospitals are so unsafe that wards and entire floors are closed off. The roof of the Queen Elizabeth in Kings Lynn (Liz Truss' constituency) is falling in and medics fear for their own safety and that of their patients. We were supposed to have 40 new hospitals. So far we have none.
All services are failing and we've become backlog Britain. All we need now is to be dragged into a war - Johnson will probably have this high up on his list of useful distractions .
All this misery takes my mind off breast cancer, so not all bad!
Happy days!
Love,
Gill xxx
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Hello Gill,
As I understand it, this company appears to operate quite openly as certain surgeries employ them. It seems the doctors are taking them on knowingly because they are cheap and it is all the GP surgeries can afford to do because of insufficient budgets. This is unbelievable given that it takes ten years to train a doctor. I have a friend who is semi-retired now but still working as a nurse for a consultant in Cardiology. She started when she was in her teens and has worked all of her career life in the same trust. She trained under the old school and did a Masters Degree while working. We talk quite a bit.
As you say, we are now resorting to using pharmacists as doctors. It is ironic because an elderly friend of mine in Dorset told me today that at her pharmacist there is a notice in the window saying Pharmacist Wanted!
I watched Prime Minister's Questions today and was beside myself with anger. The whole place was acting like a bunch of yobs and the Speaker cannot control them. The whole thing was shameful and I think that the Speaker should have closed down PMQs. It has become a waste of time. Our Parliament should be a place of dignity and serious debate. Once the Prime Minister opens his mouth it is so rude and nasty, not to mention loud, and is reminiscent of a yob out to cause trouble. His chaotic behaviour, his clumsy leaning on the dispatch box and his shouting to his Tory rabble makes everything chaotic. It should not be allowed.
I knew the plane would not take off, and even if it had, this will not stop the dinghies coming in illegally. The only way to stop them coming in is not to go out and rescue them. I have just heard on the news that these people have just turned up in Devon now on board a speedboat and were picked up immediately by two speeding cars. Who knows where they are now? We are overpopulated in this country and cannot take in all these people. We are full up. The country is not working for our own people.
This country is getting quite a reputation for breaking the law. We do not want to abide by the European Court of Human Rights and I think that court should remember that human rights also include the people of this country.
As for Northern Ireland, I think it should be reunited with the Republic of Ireland and we should apologise for the way we have treated Ireland over the centuries. Those who want to remain part of the UK should come and live here if they think so much of England. Practise what you preach.
When, oh when, are we going to hear about Keir Starmer and Beergate, not to mention not getting his fees recorded on time from other jobs? He is being attacked for being boring but that is better than being a lying loudmouth.
As for Chris Woollams, I think his newsletters are now getting too complicated and technical for ordinary people looking for simple advice and information.
I agree with everything you say in your second post to me. I especially agree with what you said about Johnson dragging us into a war to distract away from his own behaviour. Giving all these arms is just prolonging the war.
That is about all for now. When oh when are we going to have any peace?
Love.
Sylvia xxxx
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Hi Sylvia, thank you for the response!
I am from London UK, we are lucky because my mother is under Bart's hospital and they specialise in triple negative breast cancer, they have been amazing!
My mother started with four rounds of AC (doxorubicin-Cyclophosphamide) and is currently undergoing her 12 rounds of paclitaxel and carboplatin. She has around 5/6 rounds of that left and is then undergoing a partial lumpectomy and finishing her treatment with radiotherapy but we don't know how much yet! The four rounds was once every two weeks and she struggled with that, the one she is having now is once a week. I feel much better about that because having it weekly you also get your bloods done weekly which is great because you know if she has an infection it most likely will not go to sepsis because she is being checked weekly She is finding the weekly chemo mix of paclitaxel and carboplatin much easier than the AC, that gave her awful mouth ulcers. This one just makes her feel quite tired, and also gives her nosebleeds which is a common side effect.
During the lumpectomy my mum will also be getting her breast implants removed! She found the lump by feeling the affected lymph node as it was swollen, because of the breast implants she did not feel the actual breast lump, it's so small I doubt she would have felt it anyway
Her actual breast lump is about half a cm so it is tiny and only in one lymph node.
I took her for an ultrasound to see how the chemo is going and they said it has actually gone now, if she did not have clips it they would not have been able to see it so she has responded amazing which is great
It has been such a journey! We were so scared because when she was having her initial scans and tests they also found cysts in her kidneys, stomach and liver but thankfully they are benign! But waiting for the results for those was excruciating.
Amazing you being nearly 17 years clean. I am sure you have helped so many people with your forum, like I said I cannot thank you enough, it has been so helpful! Do you have any tips for when my mum is clear?
Kelsey x
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Hello Kelsey,
I was interested to know that you are from London. I thought you probably were from the UK by the way you wrote. That is the High School teacher in me! I was born in London and spent the first twenty years of my life there.
I was interested to know that your mum is under Bart Hospital and that they specialise in triple negative breast cancer. I have a long time friend who is a cardiac nurse and works for a consultant in Cardiology at Barts. She is semi-retired now and works a few days a week.
I was interested to know about your mother's treatment. Her chemotherapy treatment is similar to that of a lot of women. The extra chemotherapy drug now seems to be carboplatin for some women. Was your mother's cancer diagnosed as invasive ductal carcinoma (IDC) which is the most common, or was it diagnosed as ductal carcinoma in-situ (DCIS)? I am wondering whether it was DCIS because it is so small.
I was also wondering what a partial lumpectomy is.
I know from past posts that women seem to feel better and cope better with weekly infusions and, as you say, it is very useful to have weekly blood tests to make sure everything is fine.
Mouth ulcers, a sore mouth and some nose bleeds seem to be quite common going through chemotherapy.
I think your mum has every reason to be optimistic about this and that she will get back to a normal life. The two of you must keep looking forward and telling yourself that all is going well and that before you know it your mother will be post-treatment and back to a normal life.
My main tips for your mum are eat healthily, keep physically active and avoid stress. Take life one day at a time and live that day to the full and enjoy it. I hope that helps.
On Monday, June 20th, I shall mark seventeen years since diagnosis. I do wonder where those years have gone. It seems like a lifetime ago but I do remember it all very clearly from the day I went to see the GP, the referral to a consultant, the cancer journey, the wonderful oncologist, a very nice and gentle woman, the breast cancer surgeon, who answered all my many questions, and the cancer nurse. I also became a friend of one of the volunteer nurses at FORCE, a charity set up in the grounds of the RD&E Hospital where I had all my treatment. FORCE was in a lovely house where you could go for a cup of tea and a chat. They also had support services. We somehow hit it off and we are still friends today.
That is about all for now.
Thinking of you and your mum and sending best wishes.
Love.
Sylvia xxxx
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Hello Sylvia,
I'm in a rush to get everything done before the middle of next week when we go on holiday for a few days. I did want to tell you about an excellent Horizon programme on BBC2 - 'Making Sense of Cancer' with Hannah Fry. It's the most down to earth analysis of the real benefits of cancer treatment, especially chemotherapy, that I've seen. The statistics will undoubtedly come as a surprise to many people. Hannah Fry is a scientist and a mathematician who has had a serious brush with cervical cancer. Her diagnosis meant that she needed to undergo a radical hysterectomy. There's so much that oncologists don't make clear about the benefits (or not) of chemotherapy. The side effects of surgery which involves the removal of lymph glands is also discussed when Hannah develops lymphoedema. It's an engaging programme, not remotely patronising and extremely informative. Highly recommend!
I watched Prime Minister's Questions and the House was in uproar. The Eton yobs must think they're still out and about trashing hotel rooms and restaurants if the yelling and raucous laughter was anything to go by. Europe and the rest of the world no longer want to deal with us as Johnson has broken so many legal agreements. The UK is an untrustworthy laughing stock. Not to worry though as it looks like the PM's turning his attention to making a bid to hold next year's Eurovision Song Contest.
I do wonder how helenlouise's treatment is going. She's had an awful lot to cope with in the last few years. Would be good to hear from Kath, adagio and Mary too, though they all have very busy lives. Hope Sue is over the worst of her last cycle of chemotherapy.
Enjoy the weekend. Hope the weather cools down a bit.
Love,
Gill xxx
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Hi everyone!
It's been a slow recovery from the last infusion. I'm still not feeling great and can't do very much. I'm hoping that the beautiful weather promised this weekend will help me get outside for periods of time. I've been able to eat and drink, but get stomach aches afterward. Despite that, I've been trying to eat healthily and sleep periodically to restore my body.
Kelsey, welcome! I believe that you mum and I were probably diagnosed about the same time. She is so lucky to have you with her to take care of her. I can't imagine what I would do without my husband here to help me. There are only so many times we can say thank you and it isn't enough. I'm sure she really appreciates everything you are doing for her.
I'm sorry to read everything that you all are going through in the UK. We don't hear much about it here in the US. We've got so much of our own controversy going on. I don't like watching the news. My husband has always filled me in on important issues. But being home for the last 6 months (after being active, working, and on-the-go) has been so difficult. Sometimes I can't concentrate to read or write. I watch TV, sometimes just for the "noise." It's awful to hear what's going on in many places, including the violence every day in Philadelphia, where I lived for a while after college.
I have one more week before my last infusion. I'm hoping I can get a bit more mobile before that last one.
Enjoy your weekend!
Love, Sue
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Hi Sue,
You're almost over the worst of it, just one more infusion to go and then some time to recover before the exciting bit, surgery. I've never looked forward to an operation before, but couldn't wait to have my mastectomy. The decision about lumpectomy versus mastectomy and reconstruction is probably the hardest part of the surgery process. My surgeon told me that I could change my mind right up to the day of my surgery. I had a partial lymph node clearance as 7 modes appeared to be enlarged. They were all negative for cancer, but I had to wait 8 days for the results. My margin was only 3mm, I'd have liked at least 5, but that was nearly four years ago now. You'll probably have a much better cancer free margin as the chemotherapy has shrunk the tumour.
Good luck with your final cycle of chemotherapy.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. I do hope you have a relaxing time when you go on holiday for a few days. Thank you for letting me know about the Horizon programme on BBC2 'Making Sense of Cancer'. It sounds most interesting.
I also watched the last Prime Ministers Questions and was horrified by the behaviour. I think Johnson's behaviour was shameful. I also think that the Speaker should have just stopped the whole thing, but he is useless. The way Johnson was leaning at the Despatch Box, spitting out words and turning his back to his spineless supporters was yobbish. How much deeper into the sewer are we going? It now looks as though Johnson is doing everything he can to promote WW3 to save his own skin. He should be made to resign.
I think the Labour Party needs a new leader as well. It is about time the Durham police made up their mind whether they are going to charge him and we need to get on to clear up the mess the country is in. Labour cannot keep sitting on the fence. They have lost the confidence of the ordinary people they are supposed to represent.
Like you, I do wonder what is going on with HelenLouise, Kath and Mary. I hope they are all alright.
I finally got my avatar sorted out.
I have been reading some of the Active Topics and noticed quite a few posts about breast cancer patients who had later developed problems with melanoma on the arm where they had had their radiotherapy as part of their breast cancer treatment. This is exactly what happened to me in 2017. The GP noticed a mole on my right forearm and was concerned. He referred me to the mole clinic at the hospital and I had surgery to have it removed after I was told it was melanoma. I had to have two surgeries in fact to get it clear. I definitely attribute that melanoma mole to three weeks of radiotherapy.
Looking at the Active Topics, I have also noticed quite a lot of posts about neuropathy. I have it in my feet, but not in my hands. A lot of patients seem to be having quite a lot of problems with it. Some seem to be taking medication but I do wonder about that. My oncologist told me that it was definitely caused by the taxane drug, docetaxel (Taxotere) that I had during the second three months of my chemotherapy. I suppose the other taxane drug, paclitaxel (Taxol) would also cause it. She told me there was no cure. My GP also told me that there was no cur, as did two podiatrists. If I remember correctly, the drug that they are taking is gabapentin. It is used for other things but also for neuropathic pain, such as the pain suffered after shingles etc. The neuropathy in my feet is not painful but is a kind of irritating stiffness that does not go away.
The other popular topic is lymphoedema. I had it for a while and had some physiotherapy and then did not think about it until many years later in 2017, when I had a flu jab after not having one since 2005 and it caused the lymphoedema to come back in my arm. I got it treated for a while at the hospital at the lymphoedema clinic and wore a special sleeve for a few months. It then subsided a bit and did not bother me. My right arm will always remain a little bit fatter than the left one. I was also told that there is no cure for lymphoedema. It is due to damaged lymph from surgery. I seem to remember in a book Let's Talk Lymphoedema that the taxane drugs were mentioned as a possible cause. I think it also mentioned radiotherapy as a possible cause. As for my lymphoedema coming back after a flu jab, the pharmacist explained it as being caused by a flood of antibodies into my arm after so many years without a flu jab.
Finally, the information about the side effects of the coronavirus vaccines are gradually being reported, not to mention deaths.
That is about all for now. Let us hope we shall manage somehow to keep the peace. We could do with Paul McCartney and his song Give Peace a Chance. It was his 80th birthday yesterday.
Have a good break.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
Thank you for your latest post. I was sorry to read that you are not feeling great and I hope you will gradually feel better. I do hope you manage to get a bit more mobile before your last infusion. Concentrate on the fact that you have just one more infusion and then gradually build up your strength.
It looks as though both the UK and the US are going through very difficult and very stressful times. We really need some strong people with high standards to clean up the mess. There is a lack of dignity and professionalism. On the whole television is not worth watching.
There is not much else to say so just take great care of yourself and let us hope for better times.
Love.
Sylvia xxxx
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hi Sylvia Gill, Sue and Kelsey
I am still kicking, did I tell you that the long awaited remoders are here? I had 1 week to get ready for them and they've been here since then. They started 1 week ago. I am still very busy every day, moving things and discarding a lot, today I have a new shower to use, while they are working now on the bathroom I did usually use. Every evening I clean enough so I can sleep without choking on dust. And then collapse.
Sylvia and Gill, I think our governments are the same, run by the powerful who put puppets as leaders, and continue with their Great Reset. It doesn't matter who we elect, the bureaucracy goes on with the Plan. I can't stand them. Personally I'm glad I'm a senior, but I feel sorry for the younger people who don't know what life used to be. Altho, there have always been wars, and greedy elites
Ugh I could go on, but I'll be back!
Sue, hope you will feel better once you get last infusion in. It is a long slow process, but you will get there!
Kelsey, I hope your mum feels well today, what age is she? I am 69, found the lump at 61. And chemo followed, it's rough but we all did it. Best wishes to your family....
Love, Mary
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Hello Mary,
It was nice to hear from you.
I do not envy you having all that work going on, but at least it gives you the chance to have a good sort out. Make sure you take care of yourself while all this is going on.
I certainly think we can agree about our governments. It is the rich and powerful who call the shots and we, the ordinary people, are just the navvies. I think the UK needs a complete overhaul and to come into the 21st century. Everything here is based on the past. It is strange that the word modernise here is used to describe lay-offs of workers from their jobs. At least you live in a Republic. Here we are stuck with the monarchy and I cannot see any change coming. If Henry VIII strolled into the Palace of Westminster he would feel quite at home, except for smartphones!
I have just started reading a book, hot off the press, and I think it is a must-read for thinking people. It is non-fiction, right up-to-date about this country. The title is The Social Distance Between Us – How Remote Politics Wrecked Britain by Darren McGarvey (he is the Orwell prize-winning author of the book Poverty Safari. I have not read this one but hope to read it sometime soon).
This is what is written on the back cover. "At what point do we look for the root of Britain's problems not in the lifestyle choices, attitudes and behaviours of working people, and the poor and the vulnerable, but in the groundless assumptions, fake beliefs and prejudices of the apparently educated, cultured and sophisticated?"
"Put simply, if all the best people are in all the top jobs, why is Britain such a bin-fire?"
I do hope you will manage to read it sometime.
I do not know if Gill will post today. I remember she posted that tomorrow she is going on a short holiday.
As you can see from recent posts, we have Sue going through treatment and Kelsey posting for her mother going through treatment.
I do hope we shall hear from HelenLouise and Kath soon and I hope adagio is keeping well and will pop in soon.
I have been following the news about elections in Colombia with great interest and wondering what has happened to our Colombian friend, not to mention Hanieh in Iran. They both disappeared so suddenly.
Sending you love and best wishes. Keep safe. I heard on the radio this morning that there are two new variants of the Omicron virus. I wonder if we shall ever be free of these viruses?
Yesterday marked 17 years for me since diagnosis.
Thinking of you.
Sylvia xxxx
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Hi Everyone!
I hope you all are well. I've had a good week. I've been able to eat and generally stay out of bed. I planted some flowers in my hanging pots, though it took me a long time. I am grateful for anything at this point.
I will have my last chemo next Wednesday, June 29! I have the usual anxiety about the drugs going into my body and the side effects that follow, but I'm looking forward to being finished!
I finally got an appointment with the plastic surgeon to discuss what he would propose if I choose a mastectomy. Honestly, I'm leaning toward lumpectomy at this point. I don't want multiple surgeries and reconstruction of my breast. But I will listen to the positives and negatives of that choice.
I'll write again soon. Love, Sue
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Hi Sylvia and all
I was looking at my last post and I can't believe I said I was glad to be a senior! Only in certain contexts, I want to add.
I also believe Covid will remain with us. If only these misguided scientists would use their talents to find cures, not more exotic diseases. And to allow one to escape into the public is unconscionable.
I had my bi-annual Oncologist visit last week, another new Doc for me. A very business-like Onco; she walked in , asked me a few questions and told me I was "cured", never thought I'd hear that word! She said I didn't need to be seen anymore, no more MRIs, but would still need an annual mammogram. It's been 8 years since my diagnosis, she said there was almost no chance of getting a recurrence of the TNBC, but she hastened to add I could get another kind of Cancer, and to go ahead and have my next colonoscopy, because in 5 years I will not get another one. I will have aged out of Cancer screenings, I suppose. If I live that long. So I walked out of that office with mixed feelings, glad to been given the all clear, but feeling a bit as if I'd gotten the bum's rush!
The remodelers have almost finished, I've spent the weekend cleaning and resting. Tomorrow it starts again, for a few days.
Hanieh and Marias, it would be so interesting to know where they are now. I hope they are well, but I know Marias was having many health problems. And Haniah could have been detained, not much news comes out of Iran. It would be very nice to hear from them.
Talk to you later, love, Mary
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Hello Mary,
Thank you for your post. Covid is still very much with us and will remain with us. Cases are going up here and it is not surprising because people are behaving as if it has gone away. Cases started going up here immediately after all the big gatherings for the Jubilee and since that there have been no end of large gatherings. There are two new variants of Omicron, known as 4 & 5. There is also more news about people who have died from the vaccines. There is a lot of publicity and interviews with the families of people who have died from the vaccines on GB News. I think you can get it on the internet. The best presenter here is Mark Steyn, along with Neil Oliver.
I was interested in what you wrote about your bi-annual oncologist. I was very surprised to read that she had said that you were cured. I do wonder about that. I think the term usually used is "no evidence of disease (NED)". Saying that you could get another kind of cancer is common sense. Anybody can get any kind of cancer. I think your hospitals, like ours, seem to want to get people off their lists.
On the radio this morning, there was talk of the future way things will be happening in the NHS and it is obvious the powers that be just want to keep patients at bay. There was talk of things being done through your smartphones, downloading apps, and video consultations. I am not in favour of any of this.
You must be glad that the re-modellers have almost finished. It must have been a lot of hard work for you.
I do fear the worst for Marias and Hanieh.
That is about all for today. We have to get on even though we are living in dangerous times.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sue,
I hope all will go well with your last chemotherapy today June 29th. Dwell on the positive and on the fact that you have got through this.
I can understand that you are leaning towards lumpectomy. Multiple surgeries and reconstruction are problematic and best avoided if possible.
Thinking of you today and sending best wishes and positive vibes.
Love.
Sylvia xxxx
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Thanks so much, Sylvia,
I've been trying to be positive. I feel good about my chemo being finished today! I'm always a little nervous about all of those chemicals going into my body and the side effects that ensue. But I'm happy that this is the last of it.
Unfortunately, my husband tested positive for COVID. He went to his 50th high school reunion, attending 2 large indoor events. I asked him not to go, but of course he wants to believe that COVID is over. We had a few heated discussions about it. Monday morning, he woke up with a sore throat. I was furious that he'd put my health at risk, especially so close to the end of my treatment.
I've stayed away from him and stay masked at all times. So far, I don't feel sick and hope that I've skirted this one. I am a bit worried about tomorrow and Friday when the side effects start kicking in.
Hope everyone is well. Love, Sue
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Hello Sue,
I have just been reading your post and wanted to say congratulations on finishing your chemotherapy. I do understand about your nervousness about these chemicals going into your body. I felt exactly the same and did not want the treatment, so I delayed for quite a while. I decided I had no option and so decided to have the treatment. Because I had a large tumour I had the six months of chemotherapy before surgery. I was very lucky because I was not that ill during the treatment, except for tiredness. My oncologist was very understanding about everything, but frank and told me that she was going to have to poison my body to make me better.
I was so sorry to read that your husband has tested positive for Covid. I have heard of quite a few stories about people catching Covid by going to large indoor events, and even outside ones. Covid has got worse here since the Jubilee. Why do so many people think that Covid is over? It is not.
I do hope your husband will not get too ill and that he will make a rapid recovery.
I can understand how upset you must be at this happening. However, it has happened so you must be very careful and not put yourself at risk.
I have a cousin who has had Covid twice and has not been at all well. She had all three vaccinations but these do not give you complete protection. Her mother, my aunt, also had Covid and was not well, but it was the vaccinations that made her feel really unwell. They are still pushing the fourth vaccination, even though lots of information is gradually seeping out about the terrible side effects from all the different vaccinations, and even deaths.
I do hope you do not get Covid, that your husband makes a speedy recovery and that you will be able to do something enjoyable to celebrate the end of your chemotherapy treatment.
That is about all for this evening. Try to keep safe, keep well and keep looking forward.
Love.
Sylvia xxxx
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Hi Sue,
Congratulations on staying the course. I can imagine how annoyed you're feeling with your husband though. My husband brought Covid into the house after attending a reunion in London. He too thought covid was just about over, it isn't. The latest variant is more infectious than ever and it's spreading rapidly here. The last thing you need is an infection of any kind so soon after an infusion. I'm keeping my fingers crossed for you and of course I hope your husband recovers quickly with no longer term side effects.
Give yourself some breathing space after chemotherapy. Your body's taken quite a battering. I felt the same as you about allowing my entire body to be poisoned, but chemotherapy is extremely effective for triple negative breast cancer, so you made the right decision.
Take good care of yourself.
Love,
Gill xxx
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