Calling all triple negative breast cancer patients in the UK
Comments
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Merry Christmas to you all. Keep up the good fight!
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Hello Susan,
I am sure you will have a super Christmas this year. Do you have a traditional American Christmas meal or a traditional German one? Is there much difference?
The weather is atrocious here. It has upset a lot of people's travel plans.
Merry Christmas and a Healthy Happy New Year.
Thinking of you,
Sylvia xxxx
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Hope you all have a very good Christmas and enjoy every minute of the day.
Sylvia
Image courtesy of samarttiw /
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Hello Gill and Anne
I hope you both managed
to get through Christmas Day without too much discomfort and that you
had an enjoyable day.To Michael, I hope you
had a good Christmas Day wherever you spent it.To Peter and Liz, I
hope you are both well and that you had a good Christmas.To Jenn-UK, I was
pleased to read that you were out of the hospital and back home and I
hope the drain will soon be able to be removed. I can understand that
you are feeling low and that are sick of cancer which you have been
dealing with now for three years. I think we all have highs and lows
but somehow we get through it. As hard as it may seem people do
struggle on and most survive and soon put the bad time behind them. I
do hope you will be able to face treatment and do it with support
from the various threads. Take care of yourself.To everyone, I received
the latest e-mail from Chris Woollams at Cancer Active and it makes
very interesting reading. If you want to receive his e-mail try
chris@canceractive.com.I shall point out the
main headlines.1. Essential vitamin D.
Amongst other things it points out that sufficient vitamin D in your
blood prevents a host of illnesses. He quotes Professor Hollick of
Harvard Medical School as saying that if women had adequate levels of
vitamin D in their blood, there would be 25% fewer deaths from breast
cancer. The importance of vitamin D to your immune system is also
pointed out.Of interest to all of
us on the thread it is mentioned that vitamin D has been shown in
research to help normalise cancer cells and it is part of an
effective treatment programme for TNBC. This is an easy way we can
help ourselves by getting some sunshine, about an hour a day or
taking a supplement. Harvard recommend 5,000 iu a day.In sunless Britain it
is essential to supplement.The sub headings to
look at areVitamin D – are you
getting enough?Vitamin D
supplementation.The safe sun campaign.
2. Parasites and
cancer. He quotes Professor Dalgleish as saying at least 20% of all
cancers are caused by parasites. The sub headings areDid a parasite cause
your cancer?Infection as a cause of
cancer.The above are the first
two headings of ten, which I shall try to work through as my time
permits.I do hope you will try
to read all this as we do have to help ourselves.It is important to have
input from you if you want to keep the thread going.We have to look for new
information as I think TNBC is no longer in the dark cupboard it was
for the essentials of standard treatment, surgery, chemotherapy and
radiotherapy and the procedures on diagnosis. We know a lot about
treatment for metastases but we have to try all we can to prevent
this awful disease or keep it at bay once we have had it.There are not many
people going through treatment on this thread now. Let us hope that
is good news and it means fewer people are being diagnosed or at
least as I suspect more and more people are becoming informed and do
not need the thread as much.Best wishes to you all.
Sylvia
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Good info Sylvia. I am here less and project less because I'm determined that life should return to something similar to pre-BC. I'm not an ostrich but I do want a break from it after more than a year of nothing but. Just my 2 cents worth. I do still read the thread via email.
Fun Christmas here in Bavaria with incredible weather, good enough for a nice Christmas hike! My husband had our talented neighbor paint this for me....not a great picture, taken with an iPad but you can get the idea.....my beloved boy!
Merry 2nd Christmas Day (it's a different world here!)!!
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Hello Susan
Thank you for your
post. I can understand that you want a break from breast cancer after
finishing treatment so recently. I am all in favour of trying to get
back to a normal existence and something similar to life before
breast cancer. I am sure you will do this. The worst thing that
anyone can do is to get through treatment and then keep worrying
about recurrence, spread or a new primary. That would be no life at
all. We need a normal life and just do the things that we can do to
try to stay healthy.I was glad to know you
had a fun Christmas in Bavaria and that the weather was good enough
for a Christmas hike. Thank you so much for the painting of your pet
dog. I must say your neighbour must be very talented.The weather here has
rather spoilt Christmas for a lot of people. We have had such vicious
storms and there is serious flooding in a lot of places. It has been
calm today and the sun has actually been shining. It is officially a
holiday today and we call it Boxing Day. It is a day full of sporting
events, especially horse racing. I bet my two younger brothers and a
close cousin have been glued to the television today. Exmouth
seafront was absolutely packed. Those who were not there were
probably at the sales as all the big stores were open early for
shoppers looking for bargains.Keep in touch and
remember you can talk about anything you like.Fond thoughts.
Sylvia xxxx
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Hello everyone
I am just popping back
in to say that I have been reading all the information on the
subtitles beneath number 1 Essential vitamin D. There is all sorts of
information there about the importance of vitamin D (D3). I have
printed off the six pages involved and read them. The link to all
thishttp://www.canceractive.com/cancer-active-page-link.aspx?n=509
I was interested to
read that some hospitals are using vitamin D with radiotherapy
treatment.I was also interested
to read that vitamin D and cortisol (the stress hormone) have
recently been shown in the USA to be the crucial determinants in
osteoporosis, not oestrogen. Again I read about how dairy is not what
you need for good bone calcium. Dairy gives you low bone calcium but
high blood calcium.The link for the safe
sun campaign ishttp://www.canceractive.com/cancer-active-page-link.aspx?n=2988
Remember, when going
through treatment, it always pays to be well informed.That is all for now.
Best wishes
Sylvia
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Hello everyone
I was listening to
Desert Island Discs this morning and Miranda Hart was the guest. I
hope all you fellow Brits will know Miranda and have watched her
shows. She is a true tonic, very funny and will make you laugh. She
said on the programme that her favourite song was Bring me Sunshine,
sung by Morcambe and Wise. I love it too, and it always makes me feel
happy and philosophical. I think it is a good song to start the year
and a good attitude to have for 2014.Thinking of you all.
Sylvia
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Bring me Sunshine, in
your smile,Bring me Laughter, all
the while,In this world where we
live, there should be more happiness,So much joy you can
give, to each brand new bright tomorrow,Make me happy, through
the years,Never bring me, any
tears,Let your arms be as
warm as the sun from up above,Bring me fun, bring me
sunshine, bring me love.Bring me Sunshine, in
your eyes,Bring me rainbows, from
the skies,Life's too short to be
spent having anything but fun,We can be so content,
if we gather little sunbeams,Be light-hearted, all
day long,Keep me singing, happy
songs,Let your arms be as
warm as the sun from up above,Bring me fun, bring me
sunshine, bring me love.Words - Sylvia Dee,
Music - Arthur Kent0 -
Hello everyone but
especially fellow BritsI was very concerned to
read in the Daily Mail on Friday December 27th the
following headline.Axe routine cancer
follow ups to ease pressure NHS. The article is by Jenny Hope,
Medical Correspondent.The article starts by
saying 'Routine hospital appointments for cancer survivors should be
scrapped to prevent the NHS being overwhelmed by demand, according to
a leading charity.'I was surprised to read
that the leading charity in question was MacMillan Cancer Support.The article went on to
say that this charity considered the six-monthly check ups was
wasteful and did not target those most in need. I felt concerned
about this because after my treatment finished and I started the
three-monthly check ups, then the six-monthly check ups and finally
yearly check ups, I found they were helpful to me physically and
psychologically. I think I would have found it difficult and
stressful if nothing had been on offer after my last day of standard
treatment. I would have felt very much abandoned. Are we to be
shafted because of the rising number of cancer patients?The article states
there are two million people in the UK either living with the disease
or have recovered from it. I picked up on the word 'recovered'
because we all know our cancers can come back. It also states that by
2030 the number of cancer patients is expected to double and the
survival time will increase. Patients are living longer due to
earlier diagnosis and new drugs.The chief executive of
the charity said many survivors are left with long term health and
emotional problems and feel abandoned by the NHS, but the present
system does not address these issues and fails to provide patients
and GPs with information that could lead to recurrent cancers being
detected promptly.I think these physical
examinations are better than nothing and they are also accompanied by
mammograms and ultrasounds if necessary. The MacMillan charity seems
to think these are past their sell by date.You might like to read
the rest of the article and comment.I do hope the thread
will become more lively and interactive after the end of the festive
season.Wishing you all a
happy, healthy New Year 2014.Sylvia
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I'm from Tennessee and California and I hate the cold, long Bavarian winters, but your post Sylvia makes me extra happy to be in Germany.
Per your post, what is meant by "information that could lead to recurrent cancers being detected promptly?" What other than self-exams, ultrasounds and mammograms could this be referring to?
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Hello Susan
Nice to hear from you
and I was interested to know that you are from Tennessee and
California. I have a friend who is in LA for a month or so visiting
her son and his family. I can imagine how you must hate the long cold
Bavarian winters but you are getting good treatment in Germany.I, too, wondered what
is meant about 'information that could lead to recurrent cancers
being detected promptly'. What information is out there that patients
and doctors do not know about? We are all told that we should have
regular mammograms to detect tumours in their early stages, but there
is a lot of controversy about mammograms and how they are not always
reliable. Here in the UK we hear about false positives and also about
tumours that are there not being picked up. We are also told about
the negative effects of these because of exposure to radiation. We
also read that mammograms do not necessarily save lives. We all know
about self-examinations and get an ultrasound if we think we need
one. There are blood tests to look for cancer markers, but they do
not want to do these tests in this country and say they are not
reliable, yet they do them in the US. There are, of course, scans,
but they are not done routinely after treatment in this country and
are only done if there appears to be a problem. There is also the
downside of side effects from scans.I still think the whole
emphasis should be on prevention and that can come from ourselves
through healthy lifestyles. There is no guarantee, but we can at
least say we are trying.It is cold here but
probably not as cold as in Bavaria. The trouble with the UK is that
it is damp. I always say that after the cold of Montreal Quebec,
Ottawa and London Ontario, in Canada, nothing can be cold. I can
remember unbelievable cold in Ottawa and yet I used to be out
shovelling snow from the driveway.Wishing you a happy,
healthy New Year.Sylvia xxxx
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Hi ladiesApologies for the silence but I have been dealing with a bereavement alongside side work and home. On the plus side had an amazing Christmas and was feeling well enough to enjoy it fully as I was third week of cycle. I was however gutted to have missed my daughters sixth birthday party a few days before as I was second week of cycle. 24 snotty bug ridden kids and one chemo patient does not make for a good combination!!! I hope you all managed to enjoy Christmas and for those of you due treatment soon, good luck! I have totally lost track of how everyone is doing so I would just like to wish each and every one of you the best of health... ♡♥
Just been for bloods this morning and due chemo No.4 tomorrow. I'm officially half way through today... :-D I hope the last three go in as quickly as the first three.
Thinking of you all... xxx
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Congrats on the half-way point bigleggy! Hooray!
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Hello everyone
Here we go again with a
new week beginning and one that will take us into a New Year. Let us
all hope it will be one that treats us well.I just wanted to finish
posting the information that I received in my latest e-mail from
Chris Woollams of Cancer Active. I covered number 1 which was
Essential Vitamin D.I found number 2 most
interesting which was entitled Parasites and Cancer and the sub
headings Did a Parasite cause your cancer, and Infection as a cause
of cancer.I found that reading
this there was a heading The Four Pillars of Cancer and sub headings:Understanding the
Causes and Drivers of Cancer.Why Worry About the
Causes?Understanding Cause is
Crucial to Treatment.There are other sub
headings about how you can help yourself.The links are
www.canceractive.com/cancer-active-page-link.aspx?n=644
Pillar 1 – a Diet to
beat CancerPillar 2 –
Environmental Toxins as causes of CancerPillar 3 – Infection
as a cause of Cancer – viruses, bacteria, yeasts, microbes and
fungi, parasitesPillar 4 – Stress,
mental state and cancer. I was very interested to read all the
information under the heading Your Mind Can Make You Ill, Your Mind
Can Heal You.In my actual e-mail
Heading 3 was Medicinal Mushrooms and Prostate Cancer.Heading 4 Brain Tumours
Cured in Mice by Radiotherapy and a Ketogenic Diet.Heading 5 Brave
Macmillan talks of need to help people with side effects.Heading 6 Book –
Everything you need to know to beat cancer.Heading 7 More Warnings
on the Chemicals in Your Life.Heading 8 Good Diet and
cancer research.Heading 9 Surely It is
all Over for Burzynski?Heading 10 UK MPs
Finally Ban GM Foods – But only in their own restaurant!Please remember that
you can sign up for free for the e-mail and once you have the
headings they will lead you to sub headings that have links.I am still reading my
way through all this.That is all for now.
Best wishes.
Sylvia
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Hello big_leggy
(Sandra)It was so nice to hear
from you.I was so sorry to read
that you have been dealing with a bereavement as well as coping with
work and home. That is not to mention chemotherapy!I was glad to know that
you had a good Christmas and that you were well enough to enjoy it
fully. It was a pity that you had to miss your daughter's sixth
birthday but there will be more to come when all this is behind you.I do hope all will go
well tomorrow for your fourth chemotherapy session and that you will
make a rapid recovery. Keep looking forward and concentrate on the
fact that you will be half way there tomorrow. In case you have not
had time to catch up with all the posts, jackpot (Gill) has finished
chemotherapy and apandy (Anne) is due to finish on January 29th.Wishing you a very
happy and healthy New Year.Fond thoughts.
Sylvia xxxx
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Hello everyone
Just popping in to wish everyone a happy and healthy New Year.
Thank you to all of you who have been posting to describe your experiences on this breast cancer journey and to all of you who have offered support. Without you this thread would not exist. When I look back to the first pages and go through more I realise how many women have come through the thread since its inception. I hope that all of you who no longer post are out there somewhere having a fulfilled and happy life.
I hope you will all see the New Year in style doing whatever makes you happy in the company of your friends and loved ones.
Let us look forward to 2014 with optimism and hope.
Love to you all.
Sylvia
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From Sylvia
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Happy New Year to everyone - wishing for a healthier and less stressful one for all of us. May 2014 be full of hope.
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Wishing a Happy New Year to everyone and hoping that in 2014 we all will find some peace and joy,
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Happy and healthy New Year to everyone.
Its been a busy Christmas this year for us. We had 3 of Liz's Dutch Nephews stay for 3 days over Christmas as they do not celebrate Christmas the same as we do in the UK. We also had Liz's friend who is dying of cancer and her family for Christmas day. Liz had to cook for 10 people which I was not happy with but it was what she wanted to do once in case the cancer comes back. It will also be Liz's friends last Christmas so wanted to make it special for her.
Liz is still in a lot of joint pain after having her ovaries removed and she hates feeling hot and cold all the time.
Me and Liz at her friends wedding last month.
Happy New Year
Peter
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hi Sylvia
Happy new year...I hope you had a lovely time over Xmas and new year.....I had a lovely day with my sons and my ex other half ( I don't know if I've ever explained my situation) anyway he lives in my spare room...I suppose he's my lodger now, but it works and he does help me a lot,
He does all the cooking and I was spoilt rotten by my sons then in he evening I went to visit friends,the only downside to the day is my taste buds never returned in time and the only thing I could taste was sprouts it really is a horrible side affect,
New Year's Eve I went to a comedy night that my sons run, they moved it too a posh hotel this year because their venue was too small for the demand and they put on a three course meal for us all, we had a really lovely night full of laughs and good company, a lot of the comedians are good friends of ours now, so who better to spend an evening with than family and comedians if you need cheering up
I got a phone call on New Year's Eve from the hospital that they had a cancellation for my brain scan for the 7th jan so I accepted it not realising till later it clashed with my radiotherapy mapping and tattooing but a phone call to the lovely clatterbridge hospital my tattoos were rearranged for the 6th jan, the results of the brain scan is on the 15th jan so at least it'll be all done fairly quickly thankfully
I speak to a lovely lady on another thread on here and she lives not too far from clatterbridge hospital, she's another TN lady and she's going to meet me there and have a cuppa and a chat afterwards, she's finished all her treatment now about a year ago so I'm looking forward to that...it's funny how people you've never met can be more supportive than some family members isn't it
Big leggy...I hope chemo #4 went ok for you and I'm sorry to hear about you had a bereavement on top of all of this, hope your ok and I'm sure the rest of your treatment will fly by I know mine did x
Susan, adagio, linali and peterandliz....happy new year too you all and I hope 2014 is a better year for us everyone
Take are
Jackpot (gill)
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Hi Gill
It was interesting to read about your taste changes as I have had the same problem. Whereas on FEC I found my taste returned after about a week or so, since I had the Docetaxel (two weeks ago now) my food still tastes different and I don't enjoy it as much. I still dislike the taste of water too. It is really frustrating as I normally enjoy my food. Did you find your taste didn't return throughout your Tax treatments. I understand you have finished your last one now.
The only other symptoms I am experiencing now are some constipation, tiredness and my nails are going slightly darker at the tops and one of my toe nails has gone grey. Other than that I feel well.
I have an appointment with the radiographer next week, on the same day as my # 5 chemo, so I hope I will get some dates and schedule of appointments soon.
I hope you are well and the side effects tolerable.
Anne x
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hi Anne
I found fec a doddle compared to tax...the taste changes were probably the most annoying side affect and I used to get them back just before my next one was due...I'm two weeks out now from my last tax and I'm just starting to taste food again but my mouth still feels yucky when's I'm not eating
Fatigue has been a big problem for me and still is...ive been told it can last for months and radiotherapy can also add to fatigue so I'm expecting it to last for some time yet...the constipation I didn't get thankfully but I know a few of the girls did and got scripts from theire ONCS to sort it out
I used ice packs round my ankles and wrists to protect my nails and nerves from the tax and it seems to have done the trick as I havnt had any nail problems or neuropathy so far....also vitamin b complex will help to prevent neuropathy as well
Good luck with #5 next week I'm sure the SEs will be much better with this one....except the taste bud thing that seems to be unavoidable I'm afraid....and I hope ur radio appt goes well, getting dates for the next stage seems to make it go quicker doesn't it
Good luck
Jackpot (gill)
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Hello adagio,
Happy New Year. I hope 2014 will be a good one for you.
Fond thoughts,
Sylvia.xxx
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Hello linali (Lindsay),
I hope 2014 will be a happy,healthy,and problem free year for you and all your family.
Fond thoughts,
Sylvia.xxx
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Hello PeterandLiz,
It was nice to see you back on the thread. It sounds as though you had a very busy Christmas, but I am sure you will cherish the memories, and that will make it all worth while.
Thank you for the photographs. They are really lovely and bring the thread to life. It is nice to know what people look like.
I was sorry to know that Liz is still having pain after her surgery. For peace of mind it might be worth getting it checked out.
Fond thought,
Sylvia.xxx
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Hello Jackpot (Gill),
I hope you have a healthy happy new year and that you will be able to put cancer behind you. I was glad to know that you have three men in your life and that they help you so much.
We had a quiet Christmas with just the two of us but my brother Ray came for New Year's Eve.
Did you see all the different fire work displays on the television?
Fond thoughts,
Sylvia.xxx
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Hello Gill again,
It sounds as though you had a lovely time on New Year's Eve. There is nothing quite like a good laugh to lift the spirits. I like some of the stand up comedians such as John Bishop. What do you think of him?
I do hope all will go well for you on January 6th and January 15th.With those dates behind you it will be on to radiotherapy. Have you read about the trials now going on where radiotherapy is carried out as the same time as surgery. It is used only on patients with small tumours and having lumpectomies. It takes 30 minutes and does away with weeks of radiotherapy.
That is all for now,
Thinking of you,
Sylvia.xxx
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Hello apandy (Anne),
I am just popping in to say I hope 2014 will be a good one for you and that you will be able to put cancer behind you.
I hope you will be able to enjoy some food despite the awful metallic taste. It does seem to go on and I remember that I just stuck to plain food. Water might taste better with just a squeeze of lemon.
Hang in there,
Fond thoughts,
Sylvia.
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Hello Susan in Germany,
I hope you have a very happy and healthy new year.
Fond thoughts,
Sylvia.xxx
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