Calling all triple negative breast cancer patients in the UK
Comments
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Hello Hanieh,
I am just popping in to say that I think you are mixing up Peter with Tom. It was Tom who has recently been responding to your posts. Peter signs in as peterandliz. Both Peter and Tom have supported their wives through their breast cancer treatment. They are both fine men and have given lots of information and support to help the women on this thread. We are very lucky to have them.
How is your work going?
I hope you have a good weekend with as much fun and relaxation as possible.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
My friend's mother died this morning. It took less than one and a half months after her diagnosis. Now I am going to see my friend. Please pray for her.
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Hi Tom and Peter
I'm sorry for the mistake. Wish both of you and your family the best.
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Hello Hanieh,
I was truly sorry to read that your friend's mother had died and I wanted to send my sincerest condolences to your friend and her family and to let you know that I am thinking of you all.
With all the research and money that is being spent on breast cancer this should not be happening.
Love,
Sylvia. xxx.
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Hello everyone,
I am posting to say that it is exactly five years ago today, September 12th, that I decided to start this thread, inspired by Titan who started the Calling all TNs a few months before, and where I started posting. I felt that in the UK we were in the dark ages with breast cancer with triple negative receptors. I was five years out from my own diagnosis but still attending the hospital for check ups. There was a great response to the thread and I still remember the first post was from FreddyDLH. I hope she is out there somewhere leading a normal life.
I would like to thank everybody that has come through the thread and we have had some really great women and, of course, I must not forget the men, especially Michael, Tom and Peter.
Wishing you all a good weekend.
Sylvia.
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Hi Sylvia
Thanks for starting this thread and congratulations on its five year anniversary. Also thanks a lot for your symphaty for my friend and her family. She was devastated and the time I saw her I was all in tears. But today I feel somehow better.
Today one of my student's relatives who was born and grew up in the US came to my class. We had a good time together. She could barely speak Persian and was interested in the way I taught English to my students. The thing that interested her the most was the fact that she couldn't believe I had never lived in an English speaking country but could speak English fluently and as she said with a good accent. It was really encouraging.
Tomorrow I 'm going to take the last chance of taking a trip in the summer as the schools will start in less than two weeks. This semester is finished and my students are having the final exam, so the best time to take a vacation and a short break from every thing.
Best wishes
Hanieh
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This is a picture of me and my students today on the last session of this semester.
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Hello Hanieh,
Thank you for your kind words and the photograph of you and your class.
I hope you have a nice time on your trip and make the most of it before your classes start again.
Best wishes.
Sylvia xxxx
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HanTagh, What a lovely photo of you and your students! Thanks for sharing!
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Hi All,
We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.
Photo (best quality possible)
Where you live
Diagnosis
Your Age
Quote about how the community/BCO has helped you.
Thanks Everybody!
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Hi Sylvia
You must be very pleased that Jeremy won. It was a stunning result. My youngest is very left wing, although, apart from choosing to live in squats, he has no experience of hardship. He is a text book Marxist; the sort who in thirty years time will be on the right. Daisy doesn't really do politics and Matthew is, of course, a New Labour supporter. Anyway Jeremy is going to have to convince the south of England to vote labour. I can see that his rebellious past could be a problem for his leadership.
I read the Charlie Cooper piece in the independent. Thinking back, apart from the period of the last Labour government, I don't recall things being any different. Even the last Labour governments health spending was largely smoke and mirrors because of the dreadful Public Private Partnership. I think the Way CT and MRI scans are used could be improved. When I watch programs such as 24 hours in A&E people seem to get scanned for the most trivial of reasons. I remember my Mum having a stroke when she was 89 and she got a scan. Janette and I were bewildered, we couldn’t see what good it would do. It appears to have been no help at all.
It would be interesting to follow the health dialogue in other countries. I can tell you that by and large the Republic of Ireland has the same conversation.
It looks as though summer has given all of us a miss this year. I normally don't need the central heating from mid April to mid October but I think it will be different this year.
Michael
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Hello Michael,
It was nice to hear from you. I was certainly very pleased that Jeremy won, having stood up first at our meeting to promote him.
I also voted for Tom and promoted him as well. These two men have honesty and sincerity. I was amazed at the overwhelming vote. My brother had arranged a get together in a hall so that we could all watch the results as they came in. We had a buffet etc. and there was a very nice bunch of people. I do hope all will go well now and that Tony Blair and his band of nasties will disappear.
I do think we have to get rid of this idea of left and right within the Party. It is supposed to be a broad based party but all is fine except if you are on what is called the left. Jeremy's beliefs are decent and sincere and are most likely to help ordinary people. I do believe that the Party should be run by the members and not by the MPs. I just fear there is a lot of ignorance out there and big business and the media brainwash ordinary working people so that they vote against their own interests. I just fear that the people of this country in the main may be too conservative to vote in the interests of the common good. Rich people do not seem to have the moral conscience to serve their country.
I was interested in what you said about your three step-children. Perhaps the ups and downs of life will show them that greed and self-interest is bad and that nothing beats social democracy and justice.
I think we are about to witness some difficult times in the Labour Party. This leadership debate has really sorted out all the nasties who should not be in the party. I have been listening as the names come up for the new front bench. Only time will tell what happens and whether the Party will rediscover its purpose which is to look after the people of this country from the cradle to the grave or continue on in the wilderness.
I do agree that the PPP was a total disaster. You could well be right about the overuse of CT and MRI scans etc. It seems they are used at the drop of a hat without any regard to cost or health risks. I suppose they are much like children playing with new toys and perhaps the medical profession is afraid of being sued if they do not use them and then something goes wrong. We have to remember when the NHS was formed we had a relatively small population and none of these expensive toys. I think all scans should be used with caution and only when necessary.
I was interested to know that you think that by and large the Republic of Ireland has the same conversation. It could be that it is more or less the same in the Western world. I certainly think too many people are being unnecessarily medicated and probably their health suffers.
I would like to see more emphasis on prevention and less devastating treatment. I have felt disappointed this week about what I have been reading about Cancer Research UK and the association with Big Pharma.
Did your mum survive her stroke?
It is a dreadful day here in Exmouth. It has been raining and there is a strong cold wind.
Keep in touch.
Best wishes.
Sylvia
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Hi Sylvia
I m back from my vacation to north. It was terrific.You see my brother's wife- my sister in law - in the picture. Her sister is a five year survivor of stage 3hormonal bc.Tomorrow I will have my blood test.
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Hi Sylvia
You have not been here lately. Is everything okay with you?
Yesterday I had my blood test. All was good except my LDH.
CEA :2.1
CA 15-3 :13.1
LDH :323
Alkaline Phosphate :184
I'm a bit worried about that. I'm going to see my oncologist today and surgeon tomorrow. I hope everything goes well.
Wish me luck
Hanieh
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Hello Hanieh,
Thank you for posting the lovely photographs of your family.
Thank you for posting the results of your blood test. Since I am not a doctor, I am not sure what these results mean. When a blood test is taken all different kinds of things can be looked for. I am only familiar with the general blood test that is routinely taken here for general health, such as levels of cholesterol, thyroid, liver function, kidney function, haemoglobin etc.
What was your doctor looking for? I assume he is trying to detect the results of the injection you had. Can you explain what these results are for us and why the level of LDH is of concern.
Let us know how you get on with your oncologist and surgeon and of course I wish you good luck.
I have not posted much lately because there are no recent posts except yours. It is very unusual for a new group of patients not to form but this has happened this time. Of course, this could be good news if people are not being diagnosed but it could also mean they are now equipped with so much information that they do not need the thread. On this particular thread there is so much information that any new patient could start reading from the first post through to the last and find everything they need to know.
Our usual group of post-treatment friends seem very quiet, so they could be busy with other things, have decided to move on or having last minute holidays.
To this group I would just like to say hello and hope to hear from you - adagio, linali, maryna8, Amanda10, Tom, Michael, Peterandliz, Suewirral, Jackpot, and others I may have missed.
I have just heard on the news that the writer Jackie Collins, has just died of breast cancer at age 77. There were no details. It is just not right that people are still dying of this disease.
I have just received the latest e-mail from Chris Woollams of Cancer Active. It seems to be about metastases and I have to read it later on.
The important thing about this thread is that it needs to be interactive.
Good luck, Hanieh.
Sylvia xxxx
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Hi Sylvia
I'm back from my oncologist's. Thankfully everything was OK. He said I should have dipherline injections to avoid second primary. He believes as I am young the production of hormones can be troublesome. I think I have no choice but to accept his prescription.
Lots of love
Hanieh
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Hello Hanieh,
I was glad to read that all was fine at your appointment with the oncologist and that you feel more reassured about the injections. Just monitor everything and get in touch with the oncologist if you feel there is a problem.
It is true that the younger you are the more time there is for the cancer to return or for there to be a new primary.
In the newsletter I mentioned Chris says that research shows that information improves survival.
Love,
Sylvia.
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Hello everyone
I was just wondering if any of you had read the latest email newsletter from Chris Woollams of Cancer Active, dated September 29th. It is a very interesting email. It is divided into the following headings and subheadings.
1. The natural compound that fights cancer – one really important natural compound you have probably never heard of. It seems to help with all sorts of things, including, apparently, reducing metastases and research shows it might help TNBC. If you click on the subheading you will be able to read all about modified citrus pectin, MCP, or fractionated pectin. Please read and let me know what you think and also whether you are already taking it as a supplement.
2. Research shows information improves survival and the subtitle to click on Information Improves Survival.
You know that I have always felt that knowledge is power.
3. Meta-study shows foods that kill off cancer and subtitles Best Foods to Kill off Cancer – Meta study.
There are 12 natural compounds listed here and I am sure you will recognise most of these from 1 to 12. I was not surprised to read that number 1 is sulforaphanes – found in greens and sprouting seeds. Number 2 is the catchetin in green tea.
Please read this section carefully and try to include all these 12 in your diet.
You will be interested to read about the Rainbow Diet versus the paleo diet.
4. Beating metastasised breast cancer – subtitle Living Proof, Nina Joy, cancer maverick. This is an intriguing case that I read with the utmost interest.
5. Leukaemia? Subtitle – Leukaemia and glitazones.
6. The Rainbow Diet – suntitle The Rainbow Diet Website, and the Paleo Diet is nonsense say scientists.
7. Personal prescriptions – subtitle Personal Prescriptions. Have any of you had one of these?
8. Everything you need to know to beat cancer. Book available again after being sold out for the umpteenth time!
I hope that this thread will have some posts to keep it going.
Wishing everyone all the best and if you are going through treatment keep telling yourself you are going to get through it.
Sylvia
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Hi Sylvia
I just wanted to say hello to you and appreciate your kindness to introduce me to canceractive. Right now I'm busy translating The Rainbow Diet and I have found lots of precious information in it.
Love
Hanieh
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Hello Hanieh,
It was so nice to hear from you. I am so glad to know that you are finding Cancer Active useful and especially the book. It must keep you very busy translating it.
I can see that you are a dedicated person and keen to help other people. It is something of which to be very proud.
I have just received in the post the latest Icon magazine from this charity. It just arrived and it is the first one I have received in a long time, but now I have an address to find out how many issues they are publishing, and the cost.
I have also just received the latest issue of the magazine What Doctors Don't Tell You, so I have not got to find the time to read them, as well as some French magazines which I have been too busy to read.
In addition, the free magazine, Vita, also arrived, which is a very interesting magazine from Breast Cancer Care, and the articles and letters are written by cancer patients and survivors.
Have you had your second injection now and if so how are you feeling?
It is a sunny day here in Exmouth but there is the feel and colour of autumn. It is dark by 8 in the evening.
Sending you my best wishes.
Love.
Sylvia xxxx
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Hi Sylvia/everyone
Hope everyone is keeping ok and enjoying the sunny weather.
Hanieh your pictures are lovely you have a lovely family.
I am just home from my trip to Dubai. It was everything that I hoped for and more..I went with my daughter Chantel we spent lots of time looking around the Malls ...I say looking because the shops were too expensive to buy anything lol. We also did some sightseeing to the tallest building in the world, the dancing fountains also a trip to Abu Dhabi to see the grand mosque which was fabulous. The highlight of the trip for me was swimming in the sea it was so clear and warm just like stepping into a warm bath
Since I returned I've had a nagging pain in my groin and just above . I visited the doctor today who poked around a little and said he didn't know what it was ( great ) ! My water sample showed a little protein so he thinks it may be a water infection so I left with antibiotics. If it doesn't improve I will ring my oncologist to get a further check.
On 12th October I will go to lanzarote for one week so I'm looking forward to that, I start back to work at the beginning of November , not looking forward to that but need to save .... For more holidays lol
Wishing you all a great weekend
Amanda xx
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Hello Amanda
It is nice to have you back on the thread and I do hope that our group will gradually reconnect and that some new people will contribute to the posts.
I was so glad to know that you enjoyed your trip to Dubai and that your daughter, Chantel, sis as well. One of my cousins went to Dubai this year and I remember him telling me that it was all very expensive. It looks as though you managed to see quite few of the famous attractions.
I do hope you will manage to find out why you have a nagging pain in your groin. From talking to various friends and acquaintances the GPs appear to be good at telling you what you have not got but not giving you a diagnosis.
Even though there has been huge publicity about misuse and abuse of antibiotics by patients and doctors, it seems to fall on deaf ears, and when in doubt the doctor dishes out a prescription for antibiotics and the patient sometimes demands them. Because of this, we are running into trouble with antibiotics being ineffective when they are needed. I think doctors should have a definite diagnosis of an bacterial infection before giving a patient antibiotics.
These antibiotics upset the natural flora in the gut and apparently this causes all kinds of problems, so it is important to eat natural plain yoghurt with live culture to replace them. You do not have to have yoghurt from cows' milk to do this. There are alternatives, such as Tescos, Free From, Soy yoghurt or Sojade organic plain soy yoghurt. Both of these have live cultures. You can take supplements of these probiotics, but I try to avoid all pills if I can.
I think you are right to get the nagging pain checked out through your oncologist. Please let us know what you decide.
I can imagine you must be looking forward to your next holiday in Lanzarote on October 12th. At least you should be in good shape for returning to work.
It is another nice sunny day here in Exmouth and fairly mild. The seafront is very busy and still plenty of people buying ice creams.
Wishing you all the very best and please keep in touch.
Sylvia xxxx
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Hi Sylvia
Last week I had my injection and I think right now I have no choice but to trust my oncologist.
You are really lucky to have access to so much up to date information. Would you please share some here?
These days I have been trying to make myself as busy as I can with sports, books , teaching, translating and household chores. I think it's the best way to keep myself from negative thoughts.
Love you and wish you the best
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Hi Amanda
I'm happy you enjoyed your trip to Dubai. For me no pleasure equels the pleasure of travelling to new places with loved ones. Would you please share some pictures of your trip? I hope you enjoy every minute of your life to the fullest without any pains or anxieties.
Lots of love
Hanieh
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Hi Sylvia again
I'm really eager to see a picture of your kind face. Why don't you let us see you on the thread?
Lots of love
Hanieh
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Hi Sylvia
I was watching Jeremy Corbyn at the Labour conference today and I was very impressed. I wonder if Matthew was there, mind you I think he would take some convincing. What did you think?
I am still waiting to hear from the charity commissioners. I discovered that it takes 4 months. Goodness knows what they have to do that it takes that long. Things are incredibly inefficient here. I asked the water service to investigate water contamination on 24th August and apart from an acknowledgement I have heard nothing.
Summer has arrived this week.
Hope everyone is doing well.
Michael
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Hello Hanieh,
It was nice to hear from you and to know that you had had your second injection. I agree that you did not have any choice but to trust your oncologist. All you can do is to keep an eye on your body and how you feel and discuss anything that does not seem to be right with your oncologist.
Of course I am happy to share any up-to-date information with you and all the people on the thread. It is very important that we all keep our eyes and ears open to any information about cancer and breast cancer in particular.
Like you, I also keep myself very busy and try to take care of my body and my mind. As you say, it is a good way of keeping negative thoughts at bay.
Here in Exmouth we have a cool wind blowing and the town and seafront seem very quiet today. There were a few hardy souls as I call them doing their kite surfing way out on the sea. I do admire them but I think they must be quite strong to keep that kind of exercise up. I do not remember seeing any women doing it. There are still plenty of people eating ice creams, but there is an end of season feeling here.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello Michael,
It was nice to hear from you and I was interested to know that you have been watching the Labour conference and that you have been impressed by Jeremy Corbyn. I also watched it and was impressed. He is a truly decent man and I cannot understand how anyone could be against his beliefs and policies. I thought he brought the house down with the applause from all the delegates. It remains to be seen whether he can appeal to the public at large, a large section of whom seem to be politically ignorant.
I think the population of England is very conservative and very antiquated in its ways and thinking. It is also very "I'm alright, Jack"! It seems to be very different from the population of Scotland and Wales. I do not know quite what to make of Northern Ireland. Recently I listened to a speech in the Westminster parliament by a DUP MP and did not like him one bit. I really believe that Northern Ireland should be part of the Republic.
If Jeremy Corbyn gets rejected, I really think there is no such thing as a Labour Party. He wants to do good for the country and try to keep peace. I cannot understand why some people think it is OK to spend £100 billion on Trident to renew nuclear weapons, when we are told we are in debt and austerity is a must. How can this be when we have people living in poverty in this rich country, people at soup kitchens, people living on the streets with no homes to go to and people working for peanuts.
I was also very impressed with John McDonnell when he made his speech as shadow Chancellor.
Of course, the shameful press we have here is all negative about Labour.
If as you say your stepson Matthew would take some convincing about the new leader, it seems to me that he does not have Labour values. These are the same Labour values that have been there since the inception of the Labour Party by Keir Hardy way back when, and reiterated by Attlee. I watched a brief feature about Keir Hardy on the Parliament channel yesterday. It is well worth watching.
I can hardly believe that you are still waiting to hear from the charity commissioners. How can it take four months? What is the latest news from the Janette Collins Foundation? I have not looked at it for a while but I shall always remember your story when you first came to post. How are you doing these days?
I was astonished about what you said about the water service and how you have heard nothing other than an acknowledgement to your request to investigate water contamination on August 24th. This is very negligent, given all the recent trouble with water contamination in a part of the north of England.
Did you hear about all the junior doctors in England asking for their certificates so that they can go abroad to work, because of the new contracts being forced on them.
I gather there are a lot of nurses leaving the profession as well.
I do wonder where the NHS is going. The special cancer fund has been closed and I also read that one of the latest drugs for breast cancer is £92,000 for a year's treatment. Where are we going?
I have been reading the latest edition of icon magazine. I think it is the first one I have received this year. It has a lot of interesting articles, a lot of them have appeared on the Cancer Active site on line. One of the most interesting was Proton Beam Therapy – nine years on. They appear to be opening up three centres in the UK. It is about time!!
That is about all for today.
Fond thoughts.
Sylvia
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Hello Hanieh,
Thank you for your second post. I am not really into posting photographs of myself on the thread. This is something we have not done on here. Most of the posters do not do this and do not have an avatar. Looking back through September and August the two of us are the only two that have avatars of ourselves and I did not have one at first. It is probably a question of privacy. People come here to share all their thoughts and fears of their breast cancer and may not wish to be identified. I hope you understand this and of course we do welcome your photographs.
Wishing you all the best.
Sylvia xxxx
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Hello everyone,
I have been looking back at the posts for September and saw that it has mainly been Hanieh, Michael, Tom, PeterandLiz, Amanda and I that have kept the posts coming and thus the thread going, so I do hope some of our group will come back to us.
I saw that we have not heard from Maryna8, Adagio, and linali (Lindsay) since late August. I do hope all three of you are fine and that we shall soon hear from you. I remember that Adagio and Lindsay were going off on holiday so I do hope we can all read about your trips.
There have been no newbies for a while, so I would just like to say do not be shy about coming to join us.
Sending my best wishes to everyone.
Sylvia
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