Topic: Calling all triple negative breast cancer patients in the UK

Nov 11, 2020 05:51AM Rosiecat wrote:

Hi Mary,

Hope the squirrel escaped. He/she probably made for the nearest tree or roof, well out of harm's way.

If you're despairing of American politics you might want to take a look at ours. Our Prime, in need of a new chief of staff, is about to appoint an ex tabloid journalist who used run about in public taunting the previous PM whilst dressed as a large chicken. I'm so proud.

There's quite a lot of opposition to the present lockdown in England. There's even been a mini rebellion amongst Tory backbenchers who want the country to carry on working as normal, going to restaurants and pubs, visiting the gym and so on. Older people and those with underlying health issues should stay at home apparently. I was in favour of a much earlier, much shorter lockdown involving everyone. Everything we do is too little, too late.

I usually put the Christmas decorations up at the last minute, but might be earlier this year in an attempt to be cheerful in the face of adversity The village Christmas tree is going to be officially 'opened' on December 4th. The local primary school will gather round to sing carols while the rest of us watch from a safe distance - small children being rather unhygienic germ magnets. Once the children have wandered off on a walk around the village to behold the wonders of handed painted Christmas themed vegetables on peoples' front lawns (!), the grown ups will enjoy a socially distances glass of wine or two. No village Christmas dinner, no village parties and definitely no village pub crawl for the men, though I'm quite pleased about the last thing.

Once Christmas is over it won't be too long until Spring, so there's something to look forward to at least.

Take care Mary.

Love,

Gill xxx

Nov 11, 2020 04:56PM pkville wrote:

Hello All -

Just a bit of news from America. I live in the middle of the country in the same state as Mary, but in the northern part of the state. The news today was that the whole country is in the red zone for COVID. Our President is silent. My son is one of the directors of nursing at a major hospital here in our city. He just sent me a message tonight that every bed in the hospital is being used. I do worry that cancer patients that need surgery or treatment will be put on the back burner. But for some their conditions may warrant the need for immediate treatment. My son also is worried about the nurses and doctors being able to keep up with the amount of hours they are being asked to work. They are all exhausted. Just expressing my frustration with our country not being successful at controlling this situation. Somehow the country north of us Canada has seemed to do a decent job of controlling it. As it stands now my family will not be able to get together for the holidays. So I won’t be able to see my children or grandchildren. I
On another topic, do you think there will ever be a target therapy for TNBC as in a drug that would be taken to suppress reoccurrence? Similar to the hormone + breast cancer. Drugs good or bad I feel like having a target therapy would give some peace of mind. I have read that some think taking aspirin will help, or that metformin might keep it from coming back. I guess I’m just always hoping there’s something.

Hope everyone is well

Paula

Nov 12, 2020 12:03AM sylviaexmouthuk wrote:

Hello Paula,

It was very nice to hear from you and have your most interesting post.

I was interested to read that you live in the same State as Mary, but in the northern part. Can you remind us what state that is? I have forgotten what Mary told us. I have been looking lately at the map of the US on the television screens and trying to pinpoint where Mary is. I know it roughly.

I was not surprised to read that the US is in the red zone for Covid. Your President took it all very lightly. When he came out of hospital after his own Covid, he said that he was giving all the medication that he had had, to everyone and for free, but, of course, that never happened.

We have had the same attitude in our country from our government and they have left it all too late. We should have gone into lock-down straight-away in March and also for testing. We have the worst deaths and cases per hundred thousand in Europe and we are just ahead of the US in deaths per hundred thousand. We are in our second lock-down and it is not a true lock-down. There are too many exceptions and too many people breaking the rules.

I was most interested to know that your son is one of the directors of nursing at a major hospital in your city. What he had to say about the bed situation is probably the same as here. Too many beds are being occupied by Covid patients to the detriment of other patients and we are definitely neglecting cancer patients.

As breast cancer survivor I am very concerned about all patients of any type of cancer not getting the immediate treatment they need. Being diagnosed with cancer is bad enough, and we all go into shock, but not being immediately dealt with must be just horrible. Our health service was in bad enough condition before Covid so you can imagine what it is like now.

We are also getting news here about the exhausted state of the nurses and doctors, so it seems we are in the same position as you in the US. Apparently there are hundreds of nurses and doctors off sick, those that are at work are exhausted and many are thinking of leaving.

The media has gone from 24/7 coverage of the US election to 24/7 coverage of the vaccine that is going to 'save us all'. These vaccines have lots of hurdles to get over before they can be used, so it gives a lot of false hope to everyone.

I am not sure it is any better in Canada. They have a much smaller population, but even so a friend I have in Ottawa tells me they are going through all the same problems.

It looks as though we are going through the same as in your country when it comes to the festive season. People are not happy here that families may not be able to get together. There are a lot of promises being made but I do not think anything will be back to normal for some time soon.

It is hard to say what will happen in the treatment of breast cancer with triple negative receptors. I am sure the drug companies will try hard to get patients on something, but cancer is very complicated and there are no guarantees, not even for those with breast cancer with hormonal receptors. The medication for these do not guarantee that there will be no recurrence or metastases. We have to remember that there are all different types of breast cancer, even though the most common is invasive ductal carcinoma (IDC). Others such as metaplastic are very rare and I know someone who has inflammatory breast cancer which is also less common. All we can do with TNBC is get through the standard treatment and get on with our lives and live healthily.

You mentioned aspirin and metformin as some kind of help. I am sure there are patients taking these, but these are individual decisions. I read recently in a Chris Woollams newsletter that aspirin is supposed to help with Covid patients in that they did not seem to suffer as badly. The same goes for steroids apparently.

That is about all for now. Keep well, keep safe and just live the day.

Love and best wishes.

Sylvia xxxx

Nov 12, 2020 02:35AM sylviaexmouthuk wrote:

Hello adagio,

Thank you for posting in when you have so much on your mind about your heart problems. I think it is a bit much that you got only a phone consultation with a cardiac surgeon as nothing can compare with a face to face consultation, but this seems to be the way of the future. It is certainly what is happening here with GPs and I would not be surprised that it is the same with consultants.

I was sorry to read that you are now being referred to a different surgeon who does both valves, the aortic valve and perhaps the mitral valve. When all this started were you told that you needed two different valve replacements, because that would have saved a lot of time. I definitely understand your frustration at all this and I think you have been very patient. Have these medical experts any idea of the stress that they put patients through?

I can certainly understand that you are having second thoughts about this invasive surgery.

I can understand it even more because of the other issues that have been brought up. It just shows you the unforeseen consequences, both short term and long term of cancer treatment.

I can understand about the sternum, the osteoporosis factor and the longer time to heal but if it will heal then that is a comforting fact to know. I can only say that Raymond is now nine months away from when he had his surgery and had the sternum (breast bone) cut through and separated. It has now healed nicely but there is a long pinkish scar very visible. I do not think that will ever disappear. He still has a slight feeling of bruising in the ribs.

I read very carefully the second factor about the radiation you had to the chest wall as part of your breast cancer treatment. You said that he had said there was a higher risk but unless I am not reading it correctly, I cannot see that he says what the higher risk is. He just seems to say there a higher risk because of scarring.

Thinking about the radiation that we go through as part of our treatment, are we all to understand that we have invisible scarring inside that area where we had the radiation? What does this mean for you and all of us breast cancer patients? I do not think we are told about scarring, but I do remember my oncologist told me, when I was actually having the radiation, that there was a possibility of inflammation of the lungs.

I can understand that there could be a complication because your breast cancer was on the left close to the heart.

I can understand that you need to weigh up the pros and cons of all this. It is a bit like we had to weigh up things with our cancer treatment.

If that were me, I think that I would have a difficult time trying to make a decision.

I would think about the positive factors that you have, namely that your heart is in good condition according to the angiogram results and that you seem healthy enough. I do agree with you that it is puzzling that he can say you seem healthy enough without seeing you. Doctors can tell so much about your health by just looking at you.

I noticed that you said that, when you told him about the noises in your chest/lungs, he did not seem worried about that and said it was possibly some fluid. I would be thinking and probably saying that surely it is not normal to have fluid on your chest and lungs. Is that not one of the reasons that you have been told you need valve replacement surgery? As I have said before, my mother (and Raymond's mother) had valvular heart disease and one of the problems was fluid accumulation on the chest and lungs. I remember my mother having occasions when she had to be admitted to hospital to have the fluid removed and was put on a respirator. Valve replacement was not offered then but I know that my mother was on warfarin (a blood thinner), furosemide (a diuretic) and digoxin (a heart pill). Both mothers were on these for many, many years.

If you feel you do not want this major surgery, perhaps you could ask whether medication is possible. I know that, like me, you do not like medication, but sometimes we have no choice.

I think you are right to consider you age and I would do the same. You are healthy, super active and take great care of your body, so I can understand how depressing you find this all. I felt exactly the same when I was diagnosed with breast cancer and an over active parathyroid. I felt that I had done everything right and yet I had this horrible thing hanging over me.

I went through the same thing this year with Raymond. I felt angry, disappointed and guilty. I had looked after him for 44 years of our marriage and look what the result was. Raymond had never been ill, either, except for glandular fever a long time ago. I researched this surgery and thought Raymond at his age should not go through it. I wondered whether he would survive it and what his quality of life would be after it. Raymond was determined to have it and he said he did it for me. We have both watched this real life surgery in action in a hospital department on the television.

My friend who works for a cardiac surgeon tells me that these major surgeries, arteries or valves, are done routinely and in high numbers on a daily basis.

Raymond thought he had no option, because stents had been ruled out, and he was convinced he would die without the surgery. He seems to be going along alright now and so does the friend he made, who had both bypass and valve replacement at the same time.

If I were faced with these same problems, arteries/valves, I do not know how I would decide. Since Raymond did it in order not to leave me alone, could I pluck up the courage to face all this in order not to leave him alone?

This is something you need to discuss with your husband and children.

This is what Raymond says to you. You are a woman, and a healthy one, and women live longer than men, and you have age on your side. You are ten years younger than Raymond. He thinks you will be alright with the surgery.

He also, to help boost your spirits, wants to remind you that his medical team told him the surgery would give him several decades of life! This made us chuckle but Raymond does not at all look his age!!

Keep with us adagio. We can all understand how your mind is absorbed with heart stuff and dealing with the anxiety of the unknown. Just remember what we all say to the newly diagnosed when they come on the thread. Waiting is the worst but we feel better as soon as we start treatment and we say to all, you can get through this. We did it and you can do it.

Sending you love, best wishes and great support.

Sylvia xxxx

Nov 12, 2020 03:24AM - edited Nov 12, 2020 03:26AM by maryna8

Nov 12, 2020 03:50AM maryna8 wrote:

Paula

If not for Covid perhaps you and I could meet for lunch, we are about 3 hours apart I think. Let's keep that in mind for later, let's think positive!

Stay well, talk soon

Love, Mary

Nov 12, 2020 04:04AM maryna8 wrote:

hi Adagio

I'm so sorry you are going through this trouble with your heart. I looked back in your posts, it seemed to have started back in July. Or you started finding out about it in July, I think. So you have had a lot of testing, and are waiting on an appt with another, different surgeon. How frustrating that must be, to wait and wait and all along be facing difficult news. And yet it seems to be the path you must take. As Gill said, these types of heart surgeries are done often with much success these days. We will hold Raymond up as a Poster Child! I hope you like the next Surgeon, and have a good appt.

I don't know where these maladies come from either, I felt the same after my Cancer diagnosis. Angry and frightened. But you will get thru it all and you have a loving family to help you, hang in there Adagio!

Much love, Mary

Nov 12, 2020 05:33AM Rosiecat wrote:

Hello Sylvia,

I've just had a letter from the Medical Officer at Norwich Council advising me about the rules for very vulnerable people during lockdown. Apparently I'll also be receiving a letter from the Government soon. It's 20 months since chemotherapy ended and I doubt if I'm any more more vulnerable than anyone else of my age.These letters are being sent indiscriminately to far too many healthy people. I don't really have the time to sort this out. Cancelling the Government food box was frustrating enough.

I do feel that we need to modernise Parliament. The set up in the House of Commons is an embarrassment and actually invites bullying and confrontation. I wouldn't want to see the House of Lord abolished totally as I believe that it does sometimes help to put the brakes on in the case of undemocratic legislation. However, peers should be selected by a cross party process and should be in post for a set number of years only. There should be no hereditary peers in this day and age. Johnson has filled the House of Lords with Tory yes men and cronies/donors, these need to be cleared out.

Despite a health crisis only partly due to the pandemic and a disastrous brexit looming, the Government appears to have split into two factions. One led by Dominic Cummings, the other by Carrie Symonds. Neither are elected. I've never seen the UK in such a poor state and as always, my main concern is for our health service and for those who are languishing on an ever growing waiting list.

I have wandered well away from the topic of breast cancer in my recent posts, but there is so little to report. Whenever there's an article about cancer it's mainly concerned with peoples' inability to access treatment in a timely manner. My strong advice for women waiting for scans, mammograms, appointments, treatment etc is to pester your breast cancer support nurse or ask your GP to write to your consultant and repeat as often as necessary. Most patients prefer not to complain, but cancer just won't wait. Never let the medics put the blame for serious delays in your diagnosis or treatment on staff shortages, hospital funding or the way Covid has been handled by the Government. All are probably quite true, but hardly the fault of sick patients. Our NHS is funded by taxpayers, it isn't free and how it is run is beyond our control, so don't feel guilty about pushing hard when you have a life threatening disease like cancer to deal with.

It seems that we've both been in rant mode this week, hardly surprising though. Britain has a way of muddling through, so fingers crossed that this time around won't be any different.

Happy days!

Love,

Gill xxx

Nov 12, 2020 09:44PM - edited Nov 13, 2020 01:07PM by Kathseward

Hi Sylvia and everyone

The days remain very busy here as all PHU remain on high alert for Covid now we are easing our restrictions but so far so good! I have been mentoring some Vic nurses in contact tracing, try to get ready for our Covid vaccine clinics and uni so haven't had much time to myself.

I'm currently in Queensland for a week to get away which has been lovely but not looking forward to going back to work! Been up here with my daughter and grandsons. I'll post a couple of pics. Will be interesting whether we use the Pfizer vaccine as there are some cold chain issues and 2 vaccines are required 2 to 4 weeks apart. Australia has purchased quite a considerable amount of them but a vaccine made in Oz also looks very promising but we have to be up and ready to go whatever they use.

I've also been busy with the RFDS NP seeing chronic disease clients in my internship and I have 1 unit to go and NP masters done and dusted! Yayyyyy!

Great to hear you had the influenza vaccine Sylvia. Winter will be a bit grim in the northern hemisphere with Covid and influenza. We used the quadravalent and tetravalentvaccine that they used last year. I've attached the NSW health hyperlink for you to have a look at

https://www.tga.gov.au/alert/2020-seasonal-influenza-vaccines

https://www.health.nsw.gov.au/immunisation/Pages/flu.aspx

Stay well everyone

Much love Kath

Nov 13, 2020 12:07PM Kathseward wrote:

Nov 13, 2020 06:05PM Jags56 wrote:

Hello everyone

Heartful greetings to you and your family on the auspicious occasion of ' DIWALI' the Holy festival of light. I wish Diwali brings happiness prosperity and good health in your life.

Love

Jags

Nov 14, 2020 01:32AM sylviaexmouthuk wrote:

Hello Gill,

I do sympathise with you about that letter and the rules about very vulnerable people that you received from the Medical Officer at Norwich Council. I do wonder how much money is being wasted on all these letters that are being sent out from different sources and it all seems to be disconnected. We are drowning in inane bureaucracy. Raymond and I had the same time wasting letters and phone calls about flu jabs. Even when I phoned our GP surgery (a most frustrating thing to do these days) and explained that we had had it done by the pharmacist at our local pharmacy because we could not do the drive by clinic (not having a car!) and that we did not want to queue up at one of their mass clinics, we still got a letter. It is hopeless. The same happens with the hospital and any letters coming from either source have no signatures and different phone numbers!

I do agree with you that we need to modernise Parliament. Our Parliament is past its sell by date! As for the House of Lords, I do object to the very name. We need different names to get rid of these class distinctions. I think we could have something like the The House of the People's Representatives and The Senate. These should both be elected and the Senate should not be filled with former MPs looking forward to some easy extra money. The Prime Minister should have no role or interference in the people making up the Senate.

It is unbelievable the chaos that appears to be going on behind the scenes with the Government. I am glad to see that Dominic Cummings has gone, because he should have gone when he broke the rules. I would like to see Boris Johnson gone and a new General Election and I would also like to see another referendum about leaving the EU. I also wonder about the ethics of Carrie Symonds being an advisor. To me it reeks of nepotism. I do agree we are in a complete mess in the UK and there do not seem to be any strong and objective people to get it sorted out. The Labour Opposition is very weak. As for the Speaker of the House, I find him completely useless. It looks as though the politicians voted for him so that they could walk all over him. I say bring back John Bercow. He was an excellent Speaker.

I do agree with you about the state of the NHS and the way it is affecting patients' treatment. I cannot see the waiting lists ever going down and I would like to know how many patients have died this year of causes other than Covid. All I can say is that patients, especially cancer patients, are going to have to speak up, complain like hell and demand to be treated. We hear a lot about human rights and surely not getting the treatment you need is one of them.

I do agree that there seems to be little to report on anything new about breast cancer, the main concern of our thread. I do agree as well to keep on and on about you want your treatment. It is definitely true that it is not the fault of sick patients for whatever is lacking in the NHS.

I think it is good to speak up for those things in which we believe and I do not see it as ranting or complaining. I think I probably saved Raymond's life by speaking up and saying I was not happy with the continual delays. As it was, he managed to get his bypass surgery and get himself back home before Covid took possession of this country. With hindsight I was not happy with all the pills he was given throughout these four weeks, especially pills to lower blood pressure when he did not have high blood pressure. This caused him a lot of problems because inevitably the blood pressure went too low and then he was filled up with water to put it back up and then given diuretics to lower the oedema!

It is a really miserable day here today. We have the lights on because it is more like evening than daytime. It is raining and very windy. We shall not be going out for a walk today.

We bought the latest edition of the New Scientist magazine – November 14 2020. The cover says Focus on Covid-19.

New Vaccine Hope – How excited should we be?

Animals with Coronavirus – Why it is dangerous when the virus jumps from humans.

Hardwired to Hug – There is a reason social distancing can be a struggle.

Special Report – The great population debate – Are there simply too many of us on the planet?

All if this looks very interesting.

Those viewing may be interested in the following online information.

Covid-19 daily briefing – the day's coronavirus coverage updated at 6pm GMT with news, features and interviews – newscientist.com/coronavirus-latest.

Those very interested in the virus may like to read anything by Professor Jonathan Van Tam.

That is about all for now. Take care and make sure you have some time to yourself.

Love.

Sylvia xxxx

Nov 14, 2020 04:54AM - edited Nov 14, 2020 05:40AM by sylviaexmouthuk

Hello Kath,

Thank you for your latest post and the photographs.

It was good to have news of what is going on where you live. I was glad to know that everything seems to be going alright now that your restrictions have been eased. If only we had the same competence here in the UK. We are in such a mess. I think it is a combination of government incompetence and some of the population doing as they like and spoiling it for everyone else.

I do hope you have better luck with contact tracing than we seem to have here. It is another thing that seems a mess.

Do you think that you will have these Covid vaccine clinics any time soon? I have serious doubts about having any such clinics here in the near future. I shall be interested to know whether you use the Pfizer vaccine or another. We should remember that Pfizer is doing this in combination with its German partner BioNTech which rarely gets a mention. I remember reading about the cold chain issues and the two vaccines that are required to 2 to 4 weeks apart. I do hope the Australian vaccine proves successful.

I do understand that you have to be up and ready to go whatever vaccine is used. However, given the government's handling of everything so far in this coronavirus pandemic, I have serious doubts that everything will go smoothly here. We also have a vaccine in trials in Oxford, Astrazeneca but I am not sure how well that is going. Apparently it does not need the cold chain. I do not take much notice of what our Prime Minister or the Health Secretary says because they are very much given to boasting.

What is going on with the flu jab etc. in Australia? I always like to read the pamphlet with the flu jab but I did not get a chance to ask for one this time.

I am always puzzled that when we have questions and answers about flu jabs, or indeed the vaccines in trial and preparation, that no one asks what is in them. Why is this? I would love to know what is going into these vaccines that are gong to be injected into people's bodies.

I have had no side effects from the influenza vaccine that I had. Thank you for the links and I shall have a look at them sometime today. People last year had very nasty bouts of flu and I know some are asking whether they did in fact have Covid. I think the virus was around last year and I have read something to that effect. What do you think? I think now there will be mix-ups with the flu and the virus, especially if there are chest infections and pneumonia. When all is said and done, is the difference between the two viruses bacterial pneumonia (solution antibiotics) and viral pneumonia (no solution). It seems with Covid steroids are being used a lot to deal with those ill with it in hospital and two or three other drugs.

I do hope you have benefited from your break in Queensland with your family.

That is all for today.

Love and best wishes.

Sylvia xxxx

Nov 14, 2020 06:03AM sylviaexmouthuk wrote:

Hello adagio,

I am assuming that you will be reading our posts following your latest post updating us on what is going on with you and your valve problem. I am posting a couple of diagrams from my large volume BMA Health book that might be of interest to you/

Thinking of you and sending love and best wishes.

Sylvia xxxx

Nov 15, 2020 02:53AM sylviaexmouthuk wrote:

Hello Kath,

I am writing to say thank you for the two links that you posted about the flu vaccines in Australia. I have printed them off and read them and was very impressed with the efficiency of the Australian Government Department of Health and the New South Wales Government Health Information. I am going to look to see whether our government has issued anything like this. I note that you have a Federal government and that is something I would like to see in our country.

I was particularly interested in the different groups that are eligible for free influenza vaccine and the different vaccines that are given to the different groups. I noticed that for all people aged sixty-five and over they get the Fluad Quad. I also noted that the NSW health paper also said that people aged sixty-five years and over are getting a vaccine that is specifically designed to produce a higher immune response. I was interested to read what the four viral strains of the quadrivalent are and that it is egg based. Do you think that what we are having over here is the same?

I have just read on the news on the internet that we are being hit by avian flu and Devon is apparently a hotspot for it!

I did discover on the internet on gov.uk a document about how to get a free NHS test to check if you have coronavirus. It was quite straightforward and was divided into "Who can get a free test. Who cannot get a free test. When to get a test. Get help applying. Stay at home if you have symptoms. What the test involves. Getting a test for someone else. If you need medical advice about your symptoms."

It all seemed very useful.

I do feel very concerned about what is happening about cancer patients in general and breast cancer patients in particular. There seem to be longer and longer queues for treatment.

I saw a programme last night on Sky News which was mainly about patients with Covid. We were actually taken into the wards. The treatment looked horrible. On another part of the programme we were taken into a chemotherapy ward which was empty except for a very elderly man, sitting alone and going through a chemotherapy infusion session. He was interviewed and we learnt he was the only patient that had decided to come and have his chemotherapy treatment and take the risk of getting Covid. My heart went out to him. His wife was not allowed to be with him in the ward and he was saying how he had not seen his children and grandchildren for ages. It seemed so cruel. Watching the man having the cannula inserted on the back of his hand and being hooked up for infusion brought back vivid memories to me. I always had Raymond with me.

That is about all for today. Keep in touch. We all need news about Covid and flu!

Keep safe and keep well.

Love.

Sylvia xxxx