Calling all triple negative breast cancer patients in the UK
Comments
-
Hello Sylvia, Were did you read that "we have the highest numbers of deaths per 100,000 of all countries in the world"?
Out of the half a dozen websites I follow not one has us having the highest death rate per 100,000. We have the second lowest death rate per day at the moment in Europe only being beaten by Portugal.
Italy has had more excess deaths than the UK and they have a smaller population than us. Italy only records just over half their excess deaths as covid related. Have they had 50,000 people die in the last year from a mystery disease we know nothing about or have they decided not to count all the covid deaths to make their country look good?
0 -
Italy Feb 26th-Oct 31st 2020
Covid related deaths 38,640
Excess deaths 65,850
Italy claim to have had 104,000 covid deaths If you take the percentage of excess deaths by that figure they have really had 178,000 people die in Italy so far from covid.
We in the UK have had less excess deaths than our 126,000 covid related deaths.
0 -
Sylvia, Gill and all
I was reading this morning in my weekend newspaper that scientists have found the reason the AstraZeneca causes the blood clots in the brain. Apparently all the people who have been affected are women age 35 and below. The injection drug triggers an autoimmune response that causes a blood clot in the brain, the condition is called cerebral venous sinus thrombosis or CVST. The article also stated that there is a way to treat this now, but the article did not say what this treatment was, and truly the article does not explain the mechanism by which the clot is triggered. As with so many articles of news these days, it is poorly written, and the headline promises information that doesn't appear. So the French government has now ordered the injections to resume, but only in those over 55. Germany and Italy have also resumed vaccination. Norway, Sweden and Denmark have not yet resumed the injections.
Now to switch subjects, I got a phone call Friday and was told that my BC Oncologist is gone, and I was placed with a different one. I found this a bit upsetting, being of a somewhat superstitious mind, I thought that things have been going well on the BC front for me, and I don't like the idea of changing anything. But since I don't have much to say about her leaving, I have to accept it. I could look up a doc farther away, but I decided to keep my next appointment in May and see how things go. Hopefully our visits will be uneventful! I was told she is British, so I will tell her about you.
Talk later, love, Mary
0 -
Hi Mary,
That's very interesting. The more I read about these blood clots in connection with AstraZeneca the more confused I am. On Friday I read that Pfizer was causing more blood clots than AstraZeneca. I don't think we have the whole picture yet. One thing is certain, Covid causes blood clots in all age groups and is a common cause of death among those infected. Particularly those with a high viral load such as health workers.
Isn't it frustrating when newspapers only give us half the story? It's good that there's now treatment for those who are unlucky enough to suffer a blood clot, but it would be even better if we knew what the treatment is.
Very disappointed with myself after eating half a chocolate egg that I was saving until Easter Sunday.
Love,
Gill xxx
0 -
I found this chart. We were at the top until just recently, but we are still well above the US.
https://www.statista.com/chart/21170/coronavirus-d...
Best wishes
Sylvia
0 -
Hi Kath,
Good luck with the jabs. Fingers crossed that the flooding subsides so that you're able to get on with the job. Many congratulations on being so close to completing your Masters. All that hard work has paid off. Amazing to achieve this despite having to put so much time into planning the Covid response. Australia's done extremely well.
Love,
Gill x
0 -
Thank you for the chart Sylvia.
Can you tell me why Peru and Russia the 2 countries with the most excess deaths per 100,000 don't even feature on the chart? Excess deaths = true amount of Covid deaths as there is no other pandemic in the world at the moment.
Why is it when it comes to politics and Covid its like lets post anything but not the facts?
As you say the BBC reporting on the government and Covid is very biased. Its all dome and gloom maybe some positive thinking is needed. I have never known the BBC be so anti a government since I have been interested in politics for the past 30 years. Maybe they should try posting the truth.
Did anyone watch the select committee this week? The most interesting one this year. Dominic Cummings explaining what happened in Government in the last year. What decisions were taken and why. He also explained why he took the job and a pay cut. Even though the BBC and the press reported it last year as a pay rise.
In short he took the job because he wants a science department that can have access to money without all the red tape. He wants it to tackle things like Covid Pandemics, Global warming and other big problems in the UK. His advert for " super-talented weirdos", "wild cards" and "unusual mathematicians" to work in Number 10" was trying to attract people like Albert Einstein, Darwin and Tessler who were all considered "Weirdo's" in their lifetime. So why does everyone put him down when he wants to creat something good for this world??
0 -
Hello Peter,
In the excess deaths there will be many people with illnesses that would have normally been treated but could not get treatment due to the pandemic. That might be an explanation. With all the cutbacks there have been, who knows what is going on. I am not saying that I believe one thing or the other. Remember, there are lies, damn lies and statistics. You can prove anything with statistics. It is a shame that the pandemic has become so political. I certainly do not want our TNBC thread becoming unfriendly and focussed on the pandemic.
I am not a great fan of the BBC and have always found it too Establishment. I find Parliament very dreary, too ceremonial and lacking in substance. I am very sceptical about everything these days. I think that politicians, on the whole, seem to be more interested in their own ambitions than serving their country.
I hope that all is well with you and Liz and your son.
Let us keep this thread friendly and a source of hope, encouragement and comfort to those that need us when they are going through a nasty disease in very difficult times. It must be so difficult for them. I have dear friends facing difficult illnesses in these difficult times and my heart goes out to them.
Sending best wishes.
Sylvia
0 -
Hello Mary,
Thank you for your latest post that you addressed to Gill, me and all.
I think with all the vaccines we just have to get them done and hope for the best. The coronavirus will not be eradicated and we shall have to learn to live with it. Raymond and I are due to get our second dose of the AstraZeneca vaccine on Wednesday April 28th. I think we shall all have to get another vaccine in the autumn. The scientists seem to have made it clear that we do not know how long the vaccine gives immunity and they have also said that there is no vaccine that gives 100% immunity.
I think we need to switch off the pandemic and concentrate on building up some newly diagnosed TNBC patients. We all have a lot of knowledge and experience on here and we should make sure that others get the benefit of it. There are Covid threads on bc.org and people can go there.
I can understand your feelings about losing your oncologist. My own oncologist who kept me with her for ten years has now retired and I know I would not feel quite at ease if I had to see someone else. I was quite teary when I said goodbye to her. She was so professional and so gentle. She is still at the RD&E in Exeter but she now heads the charity in the grounds there that she established, which is FORCE.
With your new oncologist give her at least the benefit of the doubt. I shall look forward to what you have to say about her. I noticed that you described her as British. This stuck in my mind because we have just had census forms to fill in and we have to describe our nationality. I always refer to myself as English and think we are made up of four nations, England, Scotland, Wales and Northern Ireland. To me British is an artificial label. The form does allow for the four different nationalities.
Have you read any interesting books lately? Have you read any recent books about breast cancer? I have been very busy trying to look after my cousin, who has been very ill, so I have not been reading so much. I have been keeping up with my usual French magazines and have read the New Scientist from time to time. I have given up on our daily newspapers.
Keep in touch, Mary, and let us hope we shall hear from those who have not posted recently. I still think of Hanieh and Marias.
Sending you lots of love and thanking you for your friendship and support.
Sylvia xxxx
0 -
Hello Sylvia and Gill,
After meeting with the oncologist who suggested Paxus, I asked why no AC in the quotation, and turned out it's a miscommunication between him and the staff. The treatment given will still be AC + Paxus. And I waited for a long time before they finally gave me a correct quotation. I did not feel good about the whole thing and lost confidence on them, so while waiting for the quotation I made appointment with another well-known oncologist from the hospital which I had my mastectomy.
This third oncologist, gave us better impression than the 2nd oncologist who suggested Paxus. He suggested 12 weekly Paclitaxel with Herceptin, followed by 4 AC every two weeks, then a maintenance of one year of Herceptin. I get the quotation on next day, and clarified again today. Although the treatment fee is higher due to more Herceptin, starting with weekly Paclitaxel enables me to fully utilize my medical insurance.
With my existing oncologist unable to provide a quotation and no confidence on the 2nd oncologist, I have decided to go ahead with the 3rd oncologist. So now I have my surgeon and oncologist under the same roof, which is good too for easier communication.
My tummy wound is healing, and the oncologist said it's superficial so I can start chemo anytime. My surgeon also keeps pushing me for chemo. It's coming to two months soon since my surgery, my plan is to start on 5/4 instead of 29/3. The onco's clinic is on Monday, Wednesday and Saturday, and my husband prefer Monday.
Now I need to find out the side effects of Paclitaxel and how to cope with them. Few weeks ago I read in this forum that people who's under Paclitaxel use ice packs but now I can't find back that post.
0 -
Hello cocolala,
I'm so pleased that you dropped in to let us know what you'd decided. It's important to be confident that you've done the very best for yourself and made the right choices. I would probably have chosen the 3rd oncologist too. Having your surgeon and oncologist in the same building makes life a lot easier. You need a coordinated team with no obstacles in the way of effective communication.
I had Docetaxel and used large packs of frozen peas to cool my hands and feet in an attempt to ward off peripheral neuropathy. Peas are good as they fit around all areas. I used freezer blocks underneath the peas to keep them frozen. I also cut up some old cotton pillowcases to prevent direct contact between the frozen peas and my skin. Some chemotherapy units will provide ice. The staff in my unit weren't familiar with patients cooling their hands and feet and it raised a few eyebrows. I have no neuropathy in my hands and just a slight numbness in my smallest toes on my left foot. Maybe I was never destined to suffer neuropathy or maybe ice works. I think it's worth a try.
Good luck with your first treatment.
Gill xxx
0 -
Hello Sylvia,
Ensuring that your cousin receives the care he needs is a major undertaking. Not everyone has family living nearby and even when they do they may not be fit and well themselves. Many people (of any age) simply couldn't cope with the paperwork and constant phone calls involved. Do you put aside time just for yourself? We don't, but I think that it's high time we did.
I agree, we do need to share vaccines with the rest of the world. The World Health Organisation doesn't appear to have any real power in this. During this pandemic national greed has really come to the fore and this will come back to bite us in the days and weeks that follow.
It appears that since the pandemic began many people have been holding back on reporting possible cancer symptoms to their GP. When they do finally seek help and their GP requests a referral, patients may well not turn up for an appointment or simply cancel. Covid and fear of infection is often the reason given. Cancer doesn't get better by itself, the quicker a diagnosis is made the greater the chance of survival. In addition, waiting times for surgery are now at the highest level since 2008. We shall soon be experiencing a cancer tsunami and so many lives will be lost unnecessarily. If it were possible to claw back the 37 billion pounds thrown away on Track and Trace we might have a chance to build properly equipped and staffed specialist cancer centres. This will take time so shouldn't we begin now before another pandemic/epidemic hits us?
I'm hoping to find time to read the latest news from Chris Woollams. 'My Vaccine Quandary' looks interesting - if a bit late for us in the UK and America. Few of us have taken the vaccination lightly. We know that there's a possibility that there could be consequences further down the line. The issue for us in the UK was the huge infection/mortality rate. Most of us felt the risk of Covid far outweighed that of the vaccines. I haven't changed my mind and would do the same again. My biggest concern is that vaccines may be mixed due to shortages. I was given Pfizer the first time and that is what I expect to be offered next time.
It was good to hear from cocolala. She sounded much more positive about the way forward.
Please try to put a few hours aside each week to enjoy some quality time with Raymond. Spring is here, don't miss it! 🌷🌱☀️
Love,
Gill xxx
0 -
Hi, Cocalola
I am glad too that you found your third oncologist and feel comfortable with him, and agree that it is also simpler to have him and your surgeon in the same place.
I also wanted to tell you about my experience with Taxotere, which is also called Docetaxol. This is also a taxane drug, from the yew tree, which is the same as the Paclitaxel's origin. Paclitaxel is also called Taxol.
I did get Peripheral Neuropathy after the first dose of Taxotere, I had not iced my feet because I really didn't know about doing that. About the third week into my regimen, my feet swelled and felt like puffy little pads with pinpricks for a couple of days. Before my second dose I did ice my feet, but the damage was already done. All in all, I cannot say that the icing works or doesn't, but probably doesn't hurt. It's not as uncomfortable as it sounds! I used some foam slippers made for that purpose.
I was also given the Adriamycin and the Cytoxan. Since you are Her+ you will also have the Herceptin added to your regimen, but it is a targeted and quite successful drug from everything I hear, I know several people who have done that regimen.
Best wishes, Cocalola! Love, Mary
0 -
Hi, Sylvia, Gill and all,
I read Chris Woollams' article on "My Vaccine Quandary" and Gill is right, too late for me too! I had my 2 doses of the Pfizer. But, who on earth does one trust, the opinions on all these vaccines are so many and varied it is just dizzying, there is just no way to make a decision using opinions of "experts". So I, like millions of others, took a leap of faith.
Is anything in this world straightforward and true anymore? And back when I was a child taking my Polio vaccine were my parents frightened by the possiblities of dreadful side effects? I don't know, I suppose if I took the time and knew where to look I might be able to find something out, but it was just a different world then, all the differing opinions were not jumping off a screen in your face every day.
I wonder what Chris W will do or not do about taking a vaccine, hopefully he will let us know.
Mary
0 -
Hello Mary,
I am just popping in to ask whether, when you were reading My Vaccine Dilemma, you clicked on the end line - go to How politics have bred vaccine mistrust. If you have not, it makes very interesting reading and the title that comes up is "Junk science? Number 120: Covid-19 vaccines get a rough ride."
I shall write more tomorrow. I have had a very busy day again. As you say, our world today is quite mad!!
Love.
Sylvia xxxx
0 -
Hello cocolala,
Thank you for your latest post.
I was glad to read that you have been able to sort out your chemotherapy treatment. The one you have chosen is one of the standard treatments. A friend of mine had that and I remember that she had a year of Herceptin after she had finished the standard chemotherapy.
I am sure you will feel much more settled once you start your treatment. Try to be relaxed. Do not get fixated on possible side effects. You may not suffer them. We are all individuals and we do not know how we shall react to the treatment.
Sending you love and best wishes.
Sylvia xxxx
0 -
Hello Gill,
Thank you for your latest post. I do try to have some time to myself in the evening.
I agree with you about the vaccines but I am not at all surprised at the selfishness that has shown itself in the distribution. We live in a very selfish society and I cannot see it changing.
What I would like to see on my television screen, when the daily statistics appear, in addition to the number of cases and the deaths from Covid would be the number of deaths from other illnesses and the age of the people that have died. I would also like to see the age of the people who have died from Covid. There is too much emphasis on the number of vaccinations and too much boasting.
I have read the latest email from Chris Woollams and have found it all very interesting. I do think he knows what he is talking about. I think, from the reading about vaccinations, that, if he has anything it will probably be the AstraZeneca.
I certainly do not want mixed vaccines and I shall ask, at the end of April, when Raymond and I are due for our second dose of AstraZeneca, that we get exactly that, otherwise I shall walk away. Chris Woollams says we should definitely not be mixing vaccines.
I do wonder what exactly is being put in these vaccines.
It is Friday again and it is cloudy and wet in Exmouth.
I do hope you and Michael have a good weekend and let us see what next week brings.
Love and best wishes.
Sylvia xxxx
0 -
Hello Mary,
Thank you for your latest post.
I think, as in all things, you have to make up your own mind. I certainly do not believe a lot of what we are told by the Prime Minister, or his Scientists. I think everything is manipulated to make them good and make the situation look good. There are so many unknowns that nothing can be guaranteed.
As you say, the world has changed beyond recognition since our childhoods. The England that I grew up in was nothing like the England of today. There are many changes that have been made without consultation with the ordinary people. Change has been forced on them and they are the ones that have to live with the consequences.
I do not think there was much information or consultation when we had to have polio injections. They were just done.
I do hope you have a peaceful weekend and get some enjoyment. At the present time, all we can do is live the day. We are going into local elections here soon and I am so disillusioned with all politicians who are concerned with their own ambitions and not with dedicating themselves to the public.
Take care, keep safe, keep well.
Love.
Sylvia xxxx
0 -
Hello Sylvia,
According to Public Health England, there is no evidence supporting the interchangeability of vaccines but studies are underway. Worrying that PHE state that on extremely rare occasions mixing vaccines could occur - If people were in immediate danger of infection for example. How is that safe? According to Johnson, those in the top four priority groups will be offered a booster in September. The more vaccines we give, the more likely we are to run out of a particular vaccine. Even so, Michael and I won't be taking anything other than Pfizer.
The moderators have added some information to the Complementary and Holistic Medicine and Treatment forum. Apparently, taking certain supplements before and during chemotherapy may put patients at risk of their cancer recurring. This information comes from a very small study and I find it a little confusing. Despite this, It's worth a look. The following advice regarding supplements is useful -
* Just because it's natural doesn't mean it's safe
* Get nutrients from food rather than supplements (I would add that this isn't always possible, perhaps seek medical advice if you have a problem).
* If you're living in the US remember that dietary supplements aren't regulated as they're not classed as medicines. This means that they may contain other ingredients that aren't on the label. In the UK, supplements were regulated for safety by the EU. Now that the UK has left the EU I'm not sure what the regulations are.
My oncologist told me to stop all supplements for the duration of my chemotherapy. I was taking vitamin C, vitamin D and turmeric at the time.
I recently read that 4.46 million people are waiting for non-emergency surgery. I would certainly consider cancer and heart surgery to be an emergency, but it probably depends on where patients live. Tens of thousands of cancers have gone undiagnosed according to data. The most recent data only goes up to November 2020. What a mess we're in.
Weather in South Norfolk is warm and sunny and very Springlike. Michael and his friend have gone on their regular Monday morning ramble and litter pick. The amount of rubbish just thrown out of car windows onto the road has been appalling during lockdown. The penalties are nowhere near high enough.
Wishing you and Raymond a happy and healthy week.
Love,
Gill xxx
0 -
Hi all,
Last Tuesday was my 8th week post surgery so I thought I would start chemo today (Monday) before entering the 9th weekwhich is today (Monday). I told doctor's assistant about it but she called next day telling me I have to do a covid test first so Monday won't be in time. I guessed she forgot about it as she didn't mention during our meeting on Wednesday nor during my call on Friday. So tomorrow I'll go in for covid test, have PICC line placed tomorrow and chemo right after that.
I'm thinking holding ice bottle is a good idea but what about the toes? And is it just need to do this during infusion time, no need to ice when back home?
I saw many people wrote that they wear socks or gloves while icing, is this to prevent skin feeling too cold? Because then the socks and gloves would get wet.
0 -
CocoLala, the idea is to make the fingers and toes cold to slow circulation to the extremities and prevent the drugs impacting the cells there. I did it once but too much of an issue supplying and keeping ice up for hours on end. I have mild neuropathy. My cancer centre does not support icing because people have sued when the icing has caused issues. Good luck.
0 -
early morning RFDS flights to Tibooburra Ivanhoe and Wilcannia for Covid vaccination clinics
0 -
0 -
0 -
HiSylvia
Just saw ur post re interchangeability of vaccines and u are correct the same vaccine must be given for two doses. That is the cornerstone of our Covid vaccination train. We are seeing some localised reactions with the Astra Zeneca but nothing panadol and fluid does not rectify. When I get back from Tibooburra today I will post the Australian TGA guidelines for Astra Zeneca hyperlink for u to read
Cheers
Kath
0 -
Hello Kath,
Thank you for the photographs. You do lead an exciting life, albeit a very busy one.
I am just waiting for this government of ours to start mixing the vaccines because they are running short of the existing ones. They should not have gone against the manufacturing instructions of giving one dose and then a second dose in three weeks. Raymond and I had the AstraZeneca done at a local pharmacy and we are waiting out the twelve weeks and are due to go back on April 28th. I shall be asking what I shall be getting both before the date and at the appointment. We do not hear good news about the AstraZeneca anyway.
Raymond and I do not feel protected.
I look forward to the Australian guidelines for the AstraZeneca hyperlink.
Keep safe and keep up the good work.
Love and best wishes.
Sylvia xxxx
0 -
Hello cocolala,
I was glad to read that you now know when you are starting chemotherapy. I hope all goes well.
I did not do any icing of any kind. I did ask my oncologist about the ice cap in 2005/6 and she told me that she did not recommend it because of the fear of infection. My hair started to come out not long after the first dose of chemotherapy. It was a shock when it happened, but I soon got used to my wig.
I did not do any icing with my hands or feet. I developed neuropathy in my feet after the three months of taxane and my oncologist said that it was definitely caused by the taxane drugs. There is no cure for it, but mine does not bother me much at all.
I have mild lymphoedema in my right arm due to surgery and chemotherapy and probably radiotherapy. It is hardly noticeable and I just make sure I do exercises.
Take care.
Love and best wishes.
Sylvia xxxx
0 -
Hello Gill,
I do agree with what you said about vaccines. Raymond and I shall not be mixing ours either.
Thank you for your information about the latest news about what has been added to the Complementary and Holistic Medicine and Treatment forum. I do not take much notice of what orthodox medicine has to say about alternatives. I think it is up to patients to decide what they will and will not take. That is what I did during my treatment. Orthodox drugs are not harmless and they do kill people. Just because it is not natural does not mean it is safe! I still prefer to get all my nourishment and medicine from food. Remember "Let food be your medicine and medicine be your food – Hippocrates".
Like you I share your concern for all the cancer and heart surgery patients that are waiting for treatment. I think it will take years to get through the list.
I do understand what you said about litter. It is the same here in Exmouth. People seem to have no pride or self respect. We now have masks added to the piles being thrown around.
As predicted, Exmouth seafront was crowded yesterday. We can look forward to an increase in infections.
That is about all for today.
Love and best wishes.
Sylvia xxxx
0 -
Hello Sylvia,
The weather over Easter in most areas of England will be dry and sunny but too cool for sitting on the beach. However, that's no guarantee that people will stay away from the coast. Bank holidays must be a nightmare for those who (like you and Raymond) live by the sea.
There isn't much news regarding breast cancer in the press other than from those celebrities who've recently been diagnosed. They rarely if ever mention which type of breast cancer they have, but do emphasise the importance of reporting any changes in breast tissue as soon as they occur. This might be useful information for those women consumed by celebrity rather than reality. After all, the 'Jade Goody effect' worked wonders for cervical cancer screening and probably saved a few lives.
A friend who has had to cope with triple negative breast cancer twice within two years recently discovered a hard lump under her arm where a lymph node had been removed. She was seen quickly and following a needle biopsy found that fatty tissue had grown around the scar tissue. My underarm remains hard and numb two and a half years after a partial clearance. It would be reassuring if an ultrasound of the area was offered during our annual checkup. A mammogram on the non cancer side seems wholly inadequate. Apparently, NICE disagree.
That's all for now.
Wishing you and Raymond a happy Easter.
Love,
Gill xxx
0 -
Hello Gill,
I do agree that we do not get much news about breast cancer these days but I do not really know what can be said. We are unlikely to get any major breakthroughs, but only incremental improvements. The main motivation is making money on drugs. It is easier for the individual person to try to prevent breast cancer than going through treatment when diagnosed. Big Pharma is not interested in prevention as there is no money in that. No doubt it will be the same journey for a long time and that is surgery, chemotherapy and radiotherapy with years of awful drugs thrown in if you are hormonal.
I was sorry to read about your friend who has had to cope with triple negative tumour status breast cancer. What kind of cancer does she have? How old is she? There is nothing to stop a patient asking for and even insisting on an ultrasound if she has doubts or is anxious. I think patients always have to be assertive and do what they think is right for them. I think there is too much bullying goes on in the NHS.
I was reading through the Active Topics the other day and I was very concerned about what I read some women were going through with jaw problems as a result of being on bisphosphonates. It was unbelievable! I am glad I have always refused them. You might want to have a look. I shall look back to find the forum and thread and post it.
It is a cold day today but it does not seem to stop people gathering on Exmouth seafront. As long as it is dry, they do not seem to care. Apparently the crowds have been out over the past few days.
I hope you and Michael have a nice Easter weekend.
Love and best wishes.
Sylvia xxxx
0
