Calling all triple negative breast cancer patients in the UK
Comments
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Hello peterandliz
Thank you for your
post. I had been wondering about Deryn and wondered what had
happened, but did not like to bring it up because I did not want to
upset you.It is good news that
Deryn is still alive and that he has now survived thirty days instead
of the predicted 3 days. It is even more wonderful news to read that
he is getting better. It just shows you that doctors cannot always
say with certainty when someone will die. I know of several cases
where a person was facing certain death from cancer but survived. Two
of those could still be living and have no cancer and the other one
died quite a few years later from a heart attack and had no trace of
cancer.In Deryn's case the
doctors cannot say that what is happening to him is impossible
because it is happening!!Thank you for the link
to the family's blog and for copying and pasting their last blog.I have read the whole
of the blog you pasted and it is quite baffling. I just hope he
continues to make progress. I have picked up on the fact that when
Deryn left the hospital he had two nasty infections but was not
taking any antibiotics. I am thinking that somehow his body thought
that it had infections but nothing to treat it and so decided it
better try to fight the infections itself.I remember reading
about two brothers with lung cancer, for whom there seemed no hope.
One of them developed a really nasty infection and became very ill
with it, recovered and then there was no trace of his lung cancer.
The other brother had no infection and died of his lung cancer.I also had a friend
whose husband was going through treatment for non-Hodgkins lymphoma.
He seemed to be getting worse and was in hospital where his wife was
told to go home and make arrangements for his funeral. Instead of
this she took him off all the drugs and removed him from the
hospital. He did not die and lived for many years after all this. He
eventually died of a heart attack and there was no trace of any
cancer in his body.Raymond and I were
neighbours and close friends of that couple.Another story was of a
man with terminal cancer and his story was on the television and in
the newspapers not that many years ago. He heard of a medication
known as CV247 which was initially used to treat cancer in pets. He
took this and he went into remission. Whether this was due to the
medication or was some kind of simultaneous remission, who knows? My
uncle, when diagnosed with throat cancer, knew about this programme
and wanted to try the medication, since he did not want standard
cancer treatment. I managed to acquire it for him through a doctor at
a hospice. Unfortunately my uncle died but it could have been that he
started to take it too late. I remember the CV247 was made up as a
solution of ascorbic acid (vitamin C), salicylic acid (aspirin),
copper and manganese. You can find all about it on the internet.It just goes to show
that with cancer you can never be sure. There does seem to be some
link between having cancer, having a serious infection and going into
remission.I just hope that Deryn
continues to make progress.I cannot imagine what
must be going on in his mind, as well as his parents' minds.I do hope you and Liz
are bearing up and that all is well with your own son.Keep in touch and let
us know what happens.Fond thoughts.
Sylvia.
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Hello Michael
It is nice to have you
back on the thread. I am so glad you enjoyed Chelmsford.I did not know that it
has been rated the tenth best place to live in the UK, but I am not
surprised. For a long time I really liked Exeter and Chelmsford but I
do not like Exeter as much as I used to. I am quite sure that had we
moved to Chelmsford when we first came back from Canada at the end of
1993, we would have stayed there. We spent so much time in Chelmsford
when we lived in Essex and I had such a good relationship with the
librarians there. Do you think you will ever go back to live there?I can imagine the chaos
there will be as they do major roadworks at the Army and Navy. It was
always chaotic there.Thank you for the link
to the Irish radio broadcast. I shall listen to it later on.I am very interested in
inflammation in the body and chronic illnesses. I shall comment later
on.Best wishes.
Sylvia
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I am very new to these discussion boards but now I am getting my life back together after my treatment decided to link up with others who have trod this path too. Would like to offer hope and support to those who are newly diagnosed as I remember the horror I experienced early on in my diagnosis. It's a tough order but I have learnt so much about myself in the process. I have discovered I am stronger than I ever thought I was and I have also learnt to stop sweating the small stuff!
Feel an affinity with all of you in the UK (and elsewhere of course) who have had similar experiences. Finally starting to believe I can enjoy my future - used to dwell on all the negative things I read on the Internet and convinced myself I would die. In many ways although I would of course not choose to have TNBC I am pleased not to have to endure the side effects of Tamoxifen or Herceptin, and I feel that after 5 years our outlook is decidedly better than for those who have a lifetime risk of recurrence. I also hold on to the knowledge that most women survive. These are some positives about this very negative disease. Wishing you all renewed health and well being in 2014 x
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Hello Michael
I am posting to let you
know that Raymond and I listened to the Irish broadcast yesterday and
found it truly interesting.I picked up on various
things that have been much discussed lately in many quarters. The
first was the apparent benefit in many diseases, including cancer, of
low dose aspirin, by which they seem to mean 75mg. I have taken this
from time to time over the past couple of years but do not feel safe
about taking it on a regular basis. I have not taken any for some
time because of concern over the side effects of aspirin, such as
bleeding ulcers in the stomach. I would think there are people on the
threads taking aspirin as a preventive to a recurrence of cancer.I was interested to
hear mentioned the anti-diabetic drug metformin which is also getting
a lot of publicity in relation to breast cancer as a preventive for
the disease or for recurrence if you have already had it. I know
there are people on the threads taking it. I have not taken it. It is
a very cheap drug and I picked up on the fact that it was stated that
drug companies are not interested in cheap drugs as they want to
produce profits for their shareholders. That kind of thing goes
against all my ethical thinking. Drugs should be produced for the
benefit of sick people, not to satisfy the greed of others. In order
for society to work we need everyone to have a social conscience and
to be doing everything for the good of society. I was interested to
know that these drugs all come from plants and herbs and yet if you
mention herbal medicine to orthodox doctors they reject them out of
hand!Of course the main
point in the interview was the idea of producing drugs that wake up
the immune system and get it to kill cancer cells, that is the immune
system going after the cancer and turning the cancer on itself.I was very interested
in the information about inflammation and how it can develop into
serious disease.It was most interesting
about transplants as well.I do hope others will
click on the link you gave and listen to this broadcast. As you know
I think that these threads need to be interactive to be of the
greatest benefit. We all need to keep ears and eyes open for all
information pertaining to cancer in general and breast cancer in
particular. We need to be aware of cheap drugs that may be of benefit
and ready to fight for our rights. Expensive drugs that only the rich
can afford are not much use to society in general.I hope you have a good
weekend. It is dry here in Exmouth and the sun is actually shining!
There are even daffodils in bloom. It lifts the spirits to see these
early-blooming bulbs.Thinking of you.
Sylvia
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Hello Normandee
I was very pleased to
find your post and would like to welcome you to our thread. It is so
important to have people here like you with your words of hope and
support to those starting on this journey. You will be an inspiration
to those going through treatment as you have completed your own
journey and shown it can be done.I hope that your cancer
journey was not too difficult and I do hope that you got plenty of
support. I was pleased to know that you are putting cancer behind you
and looking to the future. The internet can be useful but it can also
be frightening and problematic, and I do not like the negative
picture it paints of TNBC. As I have said before, it does this only
because there are no drugs to throw at us after the standard
treatment of surgery, chemotherapy and radiotherapy. Like you, I am
pleased that I do not have to take tamoxifen, Arimidex or other
hormonals and especially that I do not have to take Herceptin. I
think that to be triple positive is worse than to be triple negative.
A friend of mine now has metastatic breast cancer after primary
triple positive and is going through chemotherapy and more Herceptin.
I like to think that I am taking care of myself as much as I can and
that my immune system will keep strong and keep cancer at bay.It is such a good idea
to hang on to the knowledge that more women survive breast cancer
than die from it. This is a way of keeping strong.Thank you for sending
out such a strong message of hope and opitimism. I do hope you will
stay with us.Best wishes for 2014.
Sylvia xxxx
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Thankyou Sylvia for welcoming me. I always read these boards but only recently decided to join them. As a matter of fact during my early journey I read many of your posts and found them encouraging. I think that my motive for now joining is to also offer hope and encouragement to those starting out. I will certainly keep posting from time to time, best wishes
Normandee xxx
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welcome normandee
Your Dx seems very similar to my own in terms of tumour size positive nodes etc so it's good to see how positive you've come out the other side of this
I've just finished chemo and I'm just about to start rads, and like Sylvia I am glad about not having targeted therapies...I noticed you had neadojuvent chemo I'm just wondering what affect it had on the tumour size....that's the only problem with adjuvant chemo is not knowing how well it is working
Did you have rads?
Take care
Gill
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Hello everyone
Just popping in to wish
you all a good weekend.To Jackpot, I hope you
will have good results on January 15th and also that you
will start your radiotherapy soon and get it all behind you.I was wondering how
things were going with your niece and her lymphoma.To apandy (Anne), and
bigleggy (Sandra), I was wondering how you two are getting on with
your chemotherapy. I do hope you are both coping well. Please let us
know how you are.To peterandliz and
Michael, thank you for your input on the thread this week.To JennUK, I hope
things are going well for you.To adagio, linali
(Lindsay) and susaninicking (Susan), three of you that have finished
treatment, we still like to hear from you about your life after
breast cancer and we need you to encourage others.To Carolben, I
sincerely hope you are alright.To Jackpot, I forgot to
say that the other day I found another John Bishop fan. I was sitting
talking to the receptionist at my dental surgery and we started
talking about the importance of laughter. She told me how much she
liked John Bishop and that she had seen him live in Plymouth. We were
also talking about the awful weather and lack of sunshine. This
enabled me to get on my soapbox about the importance of vitamin D and
all the chronic illnesses possibly associated with a deficiency of
this important vitamin!Have you noticed how
people keep starting new threads on topics they would find on the
main existing threads? They need to read through these threads.
Calling all TNS and this thread, I think, have dealt with everything
over the years connected to TNBC.Look forward to hearing
from you all.Sylvia
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hi Sylvia
I tell everyone about vit d3 as well I've even got one of my sons taking it the other one still needs some convincing
My Neice has just finished chemo and had her stem cells replaced, she is now in isolation for three more weeks and hating every minute of it, they have told her she will get very sick before she gets better as everything will drop to zero, they will give blood and platelets regular to try and bring her back up quicker but I don't know how long before they know how successful this treatment has been.
I think the reason there are so many threads popping up is because its easier to ask a question than go through 150+ pages on another thread to look for an answer that may or may not be there
I've decided to ask about transport to and from clatterbridge hospital just because of the cost, my wages go to half pay in a couple of weeks and I worked out its going to cost £200 with petrol and tunnel fees over the five weeks with it being on the other side of the water, I don't know if I can change my mind but I'm going to ask,
Take care
Gill
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Hi Jackpot
yes our stats look identical don't they? I did have neoadjuvant for my 3 tumours, 2 just over 1cm and the third nearer 2cm. During the FEC part of my chemo I could feel the tumours softening and shrinking however when I went onto Docetaxol they seemed to balloon! I was told however that the chemo was working by my oncologist, and my tumour markers were in the normal ranges. After mastectomy pathology came back showing marked response to chemo (I was classified partial response) with extensive fibrosis and scar tissue. A 3cm tumour bed remained with active cancer cells in it and I was disappointed I did not get a PCR. Apparently with multifocal disease they measure the largest tumour for stats but my 2 largest tumours were actually joined by a narrow string of cancer which meant the whole area was classified as 1 tumour. It would appear my pre-chemo tumour size was therefore nearer 5cm. I wish I had asked details about my tumour cellularity as I didn't feel my shrinkage had been that great but my oncology team and surgeon appeared happy that I had had a good response. They told me there were systemic benefits.
I did not have Rads. I was due to, as a 'belt and braces' approach as my surgeon put it. However the Chief Radio/Oncologist looked at all my scans after chemo and said it was not necessary in my case. My Surgeon said this was good news as he is an expert in his field but I have had a little worry lately as I have read so much to support radiotherapy for local control.
Good luck with the Rads, hope they go well. You have had thorough treatment and I am sure you will emerge as positive as me when it is all over. I notice you had the same chemo cocktail as me too! I will just finish by saying though that if I did this all again I would have surgery first - I found living with my tumours too stressful during chemo but that is just a personal view.
Best wishes, xxxx
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Hello Jackpot (Gill)
It is good that we are
trying to get the message out about vitamin D3 and how important it
is, especially in the UK during most of the seasons. I prefer the
Solgar softgel ones.Thank you for the news
about your niece. It must be very hard on her being in isolation for
three weeks. At the chemotherapy is behind her. I do hope the
treatment will be successful.I do understand about
the newly-diagnosed or others starting threads, but they do not
necessarily have to go back to the beginning of threads. They can
post their questions on the existing ones. With so many people on the
larger threads someone is bound to have information. I do get
concerned about some people using the word 'advice' as one of the
rules on bc.org is about not giving advice. We are not doctors. We
can only post information that we have or our own personal experience
and what we would do in any given situation. We do have to be
careful.I do hope you will get
somewhere with your transport problem because of the cost involved in
getting to and from Clatterbridge hospital. I do not know what the
situation is now, but I found accepting visits from Hospiscare, when
offered to me by my oncologist, helped me a great deal with getting
through my treatment. The nurses that came took care of so many
things and I really enjoyed all my talks with them. The first visit
that I had from them they came with papers for me to fill in that
enabled me to have a disabled badge for parking during my treatment
and some financial help with needs arising from the diagnosis of
cancer. I found this all very helpful. I gave it all up when I
finished treatment. I did not need transport because Raymond drove me
but the badge was very helpful with all the parking expenses at the
hospital. This is why I told my friend in our apartment complex about
all this and she does get a car to take her to the hospital. You
could try any of the charities but I can recommend Hospiscare. They
are local and I see the nurses in my local supermarket eight and a
half years after my diagnosis. I have also become a Friend of
Hospiscare and receive their newsletter. They took a lot of weight
off my shoulders. They also look after carers. Raymond used to go to
their monthly meetings for carers, found it very useful and got to
see other carers.By the way, I should
mention that I was told that financial help available was not related
to income. As I said, I do not know what happens now.I do hope you will have
good results from your scan on Wednesday.Finally, Peter, who is
a great poster on here, must hold a record because before he started
to post he did read all of our UK thread.Thinking of you this
week.Sylvia xxxx
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Hello Normandee,
I am just popping in to say how interesting I found all the details of your treatment that you posted to Gill. I also had pre-adjuvant chemotherapy for six months, just EC and then docetaxel. I have noticed of late that most women seem to be getting FEC (F=fluorouracil). I do not know why I did not get it. I had one large tumour, 6+cms that did shrink during chemo, but not completely. After a mastectomy of the right breast, I was told I had a complete pathological response. My tumour seemed to come from nowhere and grow quickly. I still had radiotherapy for three weeks with boosters.
I think if I had to go through it again I would still have chemotherapy first because it is a systemic treatment so would be killing off any stray cells floating around elsewhere. I have read that with surgery there is always the risk of causing spread. I suppose we all have to make up our own mind.
Have you had any genetic testing for BRCA1 or 2? It is not easy to get in the UK. The younger you are the easier it is probably, especially if there is a family history of breast cancer.
I hope you have a good week.
Fond thoughts.
Sylvia xxxx
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Hello sam52,
I am concerned that I have not heard from you and am posting to say that I hope all is alright with you and yours. Please post to let me know all is well. You are welcome to send a P M.
Love, Sylvia xxxx.
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Hi Sylvia........telepathy!!
I have just got back from quite a stressful two days with my father, and was thinking of writing you a PM, but I am really too tired just now.
I PROMISE I will get in touch with you as soon as I have the time and the energy. Sorry that sounds a bit pathetic, but I have had a lot on my plate recently.
Thak you for your concern.
With love,
Sam xx
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Hello Sam52
I think, indeed, that
there was some telepathy going on! I was so glad to read your post
this morning.I do understand how
busy you must be between travelling to look after your father and
holding down your teaching job. I do hope all is well with your son
as well.Get in touch when you
have more time and make sure that you look after yourself.Love.
Sylvia xxxx
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Hello Normandee
Thank you for your PM.
I thought I would answer on the thread as it is always good for
everyone to have information.In the past there have
been lots of posts on the forum about genetic testing and I know that
we are told that genetic testing is for younger women because it is
more likely that there will be faulty genes like BRCA 1 & 2, if
women develop breast cancer at a younger age. I am not really sure
where the cut off point is but it seems to be that pre-menopausal
women are more likely to get the testing. I did see a genetic nurse
and had a long interview with her, but she said that because of my
age at diagnosis she would not refer me to a consultant for genetic
testing. They use the term 'yours was probably a rogue cancer', which
means it was just the luck of the draw. My maternal grandmother died
of breast cancer with metastases after a mastectomy and radiotherapy.
That was in 1955, so I have no idea what type of cancer she had or
the receptor status. Cancer really was in the dark ages then.There was an active
thread here once entitled Not a typical TNBC and lots of older women
posted to say they had TNBC even though we are told that affects
mainly younger women. There are always exceptions.There have also been
many discussions about the problems of low white blood cells and the
condition known as neutropenia. I know from the posts that it is very
unpleasant and often requires a stay in hospital. I think we have to
remember that our breast cancers are very individual and our response
to chemotherapy drugs is also very individual, so when we read a list
of possible side effects, we have to remember that we may not
necessarily suffer from them. What happens to others may not
necessarily affect us. I had a relatively easy time during my
chemotherapy compared to the experiences of many others. I just had
fatigue and that strange metallic taste during docetaxel. Of course,
I had hair loss and I do not think anyone can escape that with the
drugs that are used for breast cancer.I do not know anything
about prognostic benefits and neutropenia, but I am sure that if you
have information we would all love to have that information. One
thing I have learned about this forum is that everything is
discussed.I was interested to
know that you are a teacher. We have had quite a lot of them on this
thread. I do hope your work is not too stressful. I have seen some
programmes on the television which show some schools out of order.
They have been mainly in the secondary schools. I can understand that
you are looking forward to your retirement.Take good care of
yourself and live each day to the full and do not worry too much
about anything.Sending you fond
thoughts.Sylvia xxxx
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Happy new year everyone. Sorry it's a bit late but I have just returned from a lovely holiday in the sun. I just wanted to let you know that I had my MRI just before christmas and I got the result on Monday and it was fine, no change. So a great start to the new year, long may it continue.XXX
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Hello Hero1967
It was good to hear from you and to know that you have had good results.
That is definitely the way to start 2014.
This will motivate and encourage others. Please try to stay with us on the thread to help others with support, comfort, tips and information.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was just wondering whether anyone read the article in the Guardian on January 8th about a young woman with three children who has breast cancer that has spread to the bones, and is thus terminal. She has been tweeting and running a blog, and apparently it has all caused quite a stir. I missed the article in the paper and it has now been removed from the Guardian website. Does any one know anything about this?
I hope you are all progressing.
Fond thoughts,
Sylvia.
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Hi Sylvia
I had heard a little about this blog but understand the lady in question was bullied by two journalists who accused her of seeking fame because of her terminal illness. All rather sad. If you google 'guardian cancer blog' you will find quite a bit comes up about this lady called Lisa.
Thank you for your earlier post to me Sylvia and guiding me through this site - I shall share all my details whenever I feel it will help as I do agree that all information is useful.
Best wishes
Normandee xxx
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Just something on the neutropenia prognosis implications I meant to detail. After my very first 2 chemo infusions of FEC I suffered severe neutropenia and was hospitalised in isolation. Although I found this scary as I had zero neutrophils my Oncologist was rather upbeat and threw me completely when he said "a little bit of neutropenia is a very good thing".
Since that time I did some research to discover what he meant by this and discovered some very interesting articles on the impact of neutropenia on prognosis in early breast cancer and the benefits it has to survival. These can be found if you google "prognostic signifigance of neutropenia in early BC". Only mention this in case anyone is worried about their low counts - they appear to be a benefit.
Normandee xxx
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Hello Normandee
Thank you for your
posts. I did find an article in the Independent on Wednesday about
the article in the Guardian on January 8th. Reading the
article in the Independent by Charlie Cooper, Health Reporter, the
woman under attack by two journalists is Lisa Boncheck Adams and she
is a forty-year old mother of three children. She has breast cancer
and it has spread to her bones. Apparently she has been writing about
all this, her condition, treatment and feelings, for what is now a
terminal illness. She has been writing on a blog and Twitter where
she has several thousand followers and has tweeted more than 160,000
times.Because of what she has
been doing, she has found herself the focus of critical articles in
national newspapers in two countries and has become the centre of a
debate about how we treat and talk about cancer.The first article about
this appeared in the Guardian and was questioning 'the ethics of
tweeting a terminal illness'. This first article was by Emma Gilbey
Keller and asked 'Should there be boundaries in this kind of
experience? Is there such a thing as TMI (too much information)?'. It
has been removed from the website of the paper, amid an internal
investigation.I would love to get
hold of this article if anybody has it.The article in the
Independent goes on to say that the second article was written by
Emma Gilbey Keller's husband, Bill Keller, who used to be the
executive editor of the New York Times.I do not know where he
wrote this article and whether it was in the Guardian.In his article he
contrasted Lisa Boncheck Adams and the way she has tried therapies,
enrolled on trials of new drugs in an attempt to slow down her
disease, to his father-in-law, who died from cancer in a British
hospital in 2012 after being 'offered the option of being unplugged
from everything except pain killers and allowed to slip peacefully
from life'. Bill Keller seems to be saying that Lisa's approach
honours those who fight and class as failures people like his
father-in-law who choose to stop all treatment and die.The article in the
Independent goes on to say that Lisa Adams was outraged at this.
Other commentators jumped to her defence. Writing in the New Yorker
Meghan O'Rourke criticised Mr Keller for treating Lisa Adams'
'personal choices as an occasion for moral legislation'.Ismena Clout, who has
incurable secondary breast cancer and blogs for the Independent, said
that while she disliked the 'fighting' cancer metaphor, patients had
a right to talk about and act on their condition in their own way.
She said 'When you have got someone going through such an horrific
time..... finding the energy to write about it, to help educate and
raise awareness, then that should be commended, not derided'.Dr Emma Pennery,
Clinical Director at UK charity Breast Cancer Care, agreed with what
Ismena Clout said. 'We tend not to use the 'battle' terminology. It
implies you have control of the battle – that is not a realistic
expectation', she said. 'There is no way you can say one way of
speaking about cancer is right and one way is wrong'.If you want to read
this article, which also includes come of Lisa Adams' tweets, please
try to find the article on line. Remember I am talking about the
article in the Independent.Needless to say, I was
really astonished when I read this article in the Independent this
week, because I really could not understand that two journalists
could be attacking a terminally ill breast cancer patient for
expressing her feelings on a blog and on Twitter. She will not be the
first cancer patient to have a blog or to use Twitter. We do have
freedom of expression in this country. I noticed in the article in
the Independent that it mentions that Lisa is American. I wonder why
this had to be mentioned? Is it because in this country we do not get
a lot of praise for our cancer treatment and we often seem behind
other countries in getting new drugs etc.?I cannot understand the
comparison made by the journalist about one patient choosing to try
to stay alive and the other one having everything switched off and
dying? As far as I am concerned, when we are diagnosed with breast
cancer or any other cancer, we do make our own choices. We choose
whether we are going to go through treatment or not and we choose how
much treatment. We choose whether we are going to have surgery,
chemotherapy or radiotherapy. The medical establishment does not
force us to have it.I also do not like the
'battle' terminology but that is my own view.I would welcome your
comments on this. As far as I am concerned, all these threads
provided by charities, are about being able to post and express our
feelings and offer comfort and support as we all go through our
cancer journey.Fond thoughts.
Sylvia xxxx
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Hello Normandee again
Thank you for your
second post. I shall answer it a bit later on.Sylvia xxxx
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Hello Normandee
Thank you for your post
about the neutropenia prognosis implications. I can understand how
frightening it must have been for you after your first two
chemotherapy infusions of FEC (fluorouracil, epirubicin and
cyclophosphamide) to have suffered sever neutropenia and to have been
hospitalised in isolation. It must have been very severe to have had
zero neutrophils. Can you describe what was happening to you before
you get taken of to hospital? How were you feeling? What were the
symptoms? It must have been very reassuring to have your oncologist
being upbeat about it and saying it was a good thing to have a bit of
neutropenia.I did Google, as you
instructed, and was surprised at all the information there was about
this. I skimmed through some of them to find one of the most recent
and read that. There was a lot of technical stuff about all the
research but I got the gist of it. This is the link to what I read:or
www.sciedu.ca/journal/index.php/jhm/article/download/1019/837
It is difficult for me
to comment because I am not a doctor. I suppose neutropenia must
prove that the drugs are working. I did pick up on the fact that they
had found quite a lot of women on the FEC regime were getting
neutropenia. I had EC so I do not know whether the F plays a part in
getting it. There was also mention of some women perhaps being
under-dosed with their drugs. All I know is that before I started
chemotherapy I had to give my weight and height and was told that the
dose of chemotherapy drugs a person gets is worked out according to
this. Nobody ever mentioned that I had low white blood cells and my
red blood cells were always normal.There is medication
available to deal with and prevent low white blood cells. They are
filgrastim (Neupogen and Zarzio) and pegfilgrastim (Neulasta) that
patients have through injection, after the chemotherapy session. I
think you can do this yourself the day after. This has all been
discussed on the thread, so other more recent patients than I will be
able to comment. I understand that this drug keeps your low white
blood cells up to par. If I remember correctly some patients have no
problem with these drugs and others have pain.They were never
mentioned to me during treatment but in 2005 in June when I was
diagnosed, I think a lot of things were not mentioned, including the
term TNBC.Thanking you for all
your input. Have a good weekend and look forward to the future with
optimism.Sylvia xxxx
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Hello everyone
I am just popping in to
wish you all a good weekend wherever you are and whatever you are
doing.Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
I did enjoy reading your message about the Guardian blog and the Independant articles. You have put the situation in perspective for me as I did not read these articles myself.
Like you I feel sorry that a terminally ill woman should receive such a backlash when I am sure her motive was more for informing others than self-advancement. That was how she wanted to deal with her diagnosis, it was obviously accepted as valuable reading material by an Editor, and then it is a matter of choice as to whether we read it or not. I for one would have enjoyed reading the blog and would not consider it voyeuristic, merely a useful insight into how one deals with a terminal diagnosis of a disease I also suffer from. It would also appear that it was somehow cathartic for the writer herself. I value free-speech and self-expression especially when it is informative and does not set out to offend. Those who found it offensive in any way should have turned the page. As readers this is our decision and choice.
I also don't like the 'battle' terminology. I feel, rightly or wrongly, that we who are diagnosed have to accept a difficult path through sometimes unpleasant treatments in order to regain health. Unfortunately we do not have a lot of control over outcomes, we hope and pray for the best and generally outcomes are successful. I agree we do have a choice and can of course decline treatment. Personally I just went with whatever my medical team suggested as I accepted they were experts who had devised the right plan for me. At that time I was quite a jibbery wreck and would have been useless in any 'battle' situation. We all have to deal with a cancer diagnosis in whatever way works for us and if some set out to win a battle, or write a blog, and that helps them through, then great. My comments are purely personal and I have tried to express how I dealt with it all but of course 'Each To Their Own'.
Have a great (wet?) weekend!
Normandee xxxx
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Hello Normandee
Thank you for your
post. I was so glad to know that you enjoyed reading what I said
about the articles in the Independent etc. I do try to keep up with
everything that is being published about breast cancer or cancer in
general and I do make every effort to keep our thread interesting,
stimulating and thought provoking, besides being informative,
comforting and supportive. I have met some fantastic women (and men)
on this thread and they mean a lot to me. I have always emphasised
that anyone anywhere in the world is welcome to join us.I agree with you that
the backlash against Lisa was very mean-spirited and uncalled for. We
all need to think about how we might feel if we had terminal breast
cancer and give all our support to this courageous woman. I remember
when I was first diagnosed that there were quite a few books being
published about women telling their personal stories of going through
breast cancer and their feelings on being diagnosed. I read all of
the books and found them so interesting. There were also quite a few
interviews on the television news. At that time a lot of the cases
were to do with the drug Herceptin, which was for patients with HER2+
receptors. Women were being denied the drug on the NHS and were going
to court to obtain it. I think they always won their case. To be
HER2+ at that time, or so I was told by one of my medical team, was
really bad as it was very aggressive. In fact I was told I was very
lucky to be HER2-.We have to do
everything we can to help ourselves with our breast cancer and if we
hear of anything where we have to fight for our rights, we have to do
just that.If you want to read an
inspirational book, Google Jane Tomlinson and read her first book,
telling of her breast cancer journey. When I was going through
chemotherapy, I chose to have a district nurse come to me every three
weeks the day before my session to take blood. That nurse, called
Norma, was also an inspiration to me. She was always cheerful and
always made me laugh. She told me about Jane Tomlinson and to read
her book. I did this. Jane was only 26 when diagnosed with hormonal
breast cancer. She was in remission for a long time, did degrees, got
a stressful job, even had another baby. She also was a great runner
and raised millions for cancer research. The cancer came back and she
was told she would not live long but she did. She eventually died at
age 43, so she had many years of survival. She cycled across the US
to raise money, even though she was ill. I think there were drugs
that could have prolonged her life, but she could not get them
because of bureaucracy with the primary care trust and she would not
push her high profile to get them, even though she had raised all
this money. I felt so angry when I heard that she had died. If you
want to read her first book it is The Luxury of Time.I definitely agree that
it is cathartic for Lisa to write about what she is going through.As you say, if you do
not want to read it, you do not have to.I think blogs are a
very good idea. There is so much to think about in this world and
other peoples' thoughts and views can help to keep our little grey
cells working. I do like my brain to be challenged.Keep up your good work.
It is a pleasure to communicate with you.It has been raining all
day here.Fond thoughts.
Sylvia xxxx
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Hello peterandliz
I was just wondering
how things are going. What is the latest news on Deren? I hope the
two of you are coping.Look forward to hearing
from you.Sylvia.
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Hi Sylvia
This is just a quick one as it's a frantic weekend but just to say that Jane Tomlinson's book you refer to was my reading during chemo also - how strange! Lots of similarities going on Sylvia!
Bye for now, Norma xxx
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Hello Norma,
I was pleased to know that you had read this book. Everyone should read it.
This thread is very quiet, so I hope that is good news.
Fond thoughts, Sylvia xxx.
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