Calling all triple negative breast cancer patients in the UK
Comments
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Hello again
Septemberbird (Lettie)I was interested that
you had mentioned soursop in your post. I looked it up because I had
not heard of it and noticed that it is a fruit similar to paw-paw. I
must admit I have not seen it in the supermarket. Is your mum
thinking of eating it or of taking something processed from it? Let
us know what you know about it. The medical profession always come
down hard on anything considered 'alternative' on the grounds that
these products have not been widely trialled. I tend to make up my
own mind.Best wishes.
Sylvia xxxx
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Hello Gill and Jenn-UK
Thank you for coming on
the thread to support Septemberbird (Lettie) posting for her mum. You
have given great support and I am sure it will be greatly
appreciated. I hope you are feeling a bit brighter in spirits, Gill,
and that you, Jenn, are also remaining as upbeat as possible given
all that you are going through.I read one of your
posts on another thread, Jenn, and I did so admire your sense of
humour.Try to have a good week
both of you.Fond thoughts.
Sylvia xxxx
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Hello adagio
It was great to have
your post. I was so sorry to read that you had had a very nasty fall
and that you have been unable to use your left arm and are in a lot
of pain. I do remember what black ice was like from my years in
Canada. I remember one year setting out to deliver some Christmas
cards to neighbours and I slid on the top of my driveway and went
sliding halfway down. You feel so shaken up. I am so glad to know
that you did not break anything. With your osteoporosis you do not
want that! You might want to rub in a lot of arnica cream on your arm
and shoulder. It seems to have a magical effect on bruises. Try not
to worry about 'what if'. I hope you will heal soon but it can be a
long job.Thank you for popping
in to support everyone. We are all wishing you better.Fond thoughts.
Sylvia xxxx
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Hi all, just a quick message, I'm off to pilates now. I get my soursop juice from a company called JUNA, the juices arrive frozen, and they are all gorgeous. Soursop is also called guanabana.xxx
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Thank you Sylvia, I just ordered some BITTER apricot kernels on amazon!
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thank you so much Sylvia, and everybody else who is contributing and wishing mum well. Sylvia, she has her lumpectomy and sentinel node removal on feb 14th. It seems so long to wait...as she was diagnosed nearly 3 weeks ago? I would have wanted it removing within 7 days! She has been told tha she will be having chemo two weeks after the lumpectomy followed by radiotherapy after 6 months. And then nothing else! Bit scary to say the least. All we can see is a life governed by cancer and the fear of cancer returning. But your words and advice is inspiring and fills us with hope. I will now get o to amazon and start ordering the bitter apricot kernels nd the soursop!
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Hi Septemberbird,
I want to add my support to you and your mum.
I was the same age and similar sized tumor at diagnosis.
Naturally it comes as a shock especially when they talk of grade 3 and my first instinct was ...get rid of it and cut it out but after discussion with the breast surgeon and reassurance that if anything else needed to be done it would be, I went with the lumpectomy.That was 3 1/2 years ago.
I did find it difficult to take in all the information and always had someone with me at the initial appointments. Also present at those appointments was one of the breast nurses.Throughout my treatment and usually after a consultants appointment there was always something that I forgot to ask or something happened that I wasn't sure about. The breast nurses were my point of contact and were brilliant, listening and answering my questions and addressing my worries. If necessary they would speak to the doctors or get appointments.
So what I am saying is that there will always questions or times when you feel that you may not have been given answers and it is important that you do have someone that you can contact. Everyone is different and can react differently to treatment and I found it so essential that there was someone that I could contact even if it only was for reassurance.
Looking back I realise that although I wanted to be told everything at once it is a process and I wasn't told whether I definitely needed chemo until after the surgery. It helped me focus on each stage as it came along and for me it worked.
I think it is about developing a trust in your team but also questioning if you have any doubts.
My daughter was pregnant with her first child when I was diagnosed and I was so worried about her and the effect that my cancer would have on her. For me it was something to look forward to because the baby was due about the same time as chemo ended. I now have a fabulous 3yr old grandson.
You will find so much support here and Sylvia and this thread have been a godsend for me.
Good luck to you and your mum.
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Hello Hero1967
It is nice to have you
popping in. Thank you for the information about the soursop juice.
This is a new one on me and I do like to learn about new things.I hope you had a good
session at pilates. What benefits would you say these exercises give
you? I know pilates is very popular now.Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Jianchi
Thank you for your
post. I hope you will post again. How are you doing with your
treatment? Keep looking forward. You have nearly finished your
chemotherapy journey. I hope it was not too difficult for you. Do not
be afraid if you have to have more surgery. You can get through all
of this.Thinking of you and
sending very best wishes.Sylvia xxxx
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Hello Septemberbird
I am glad we have all
been able to help a little and give some comfort. I am sure that you
will both feel better once the treatment begins on February 14th
with a lumpectomy and sentinel node removal. You will find that there
is a lot of waiting on this cancer journey but gradually your mum
will get through treatment and come out the other end. I know that in
this country, if you go to your GP with a lump and she thinks it
might be cancer, you will be referred to the hospital and it usually
takes two weeks. At least that was the procedure when I was referred
by my GP. I was told I would have an appointment in two weeks. Three
weeks since diagnosis is not that bad to have surgery and sentinel
node removal arranged.To begin chemotherapy
two weeks after the surgery is not bad either. Your mum will need
that time to recover from surgery, ready for chemotherapy. The six
months of chemotherapy will be the longest. You will need to know
what chemotherapy drugs your mum will be given and the time regime. I
had chemotherapy every three weeks over six months, but now they
sometimes do it every one or two weeks at lower doses. There have
been women on the thread that have said they found it easier on one
or two weeks, but we all react differently to these drugs. I did not
have any real problems going on the three week routine. Lately, a lot
of women seem to be getting three months of FEC (fluorouracil,
epirubicin, cyclophosphomide) followed by three months of a taxane
(docetaxel (Taxotere) or paclitaxel (Taxol)). As for the
radiotherapy, the number of weeks given varies. I had three weeks
(but remember I had a mastectomy), some women have five weeks or
more.With TNBC that is the
standard treatment. There is no equivalent of tamoxifen or Herceptin
that are given for those with hormonal positive receptors. Many of us
on this thread, including me, are glad we are not having to take
these drugs with all their nasty side effects.After treatment your
mum will get back to a normal life.Keep us up to date with
how you and your mum get on and make sure she gets lots of support.
There is plenty out there. You can get in touch with cancer
charities. I chose to have Hospiscare nurses come to my home
throughout my treatment. They came once a week and I enjoyed all our
chats and they were helpful in every way. I still see some of them
around the town now. There may be a charity in your hospital grounds
or nearby where you can get counselling for your mum and for you, or
you can both have some complementary therapies, such as aroma therapy
to help you relax. Take advantage of anything that may help you. My
husband went regularly to Hospiscare meetings for carers and found
them very helpful.Make sure that your mum
has a breast care nurse with whom she can communicate regularly.I hope you enjoy your
bitter apricot kernels and soursop. A lot of us here drink green tea.
Of course, there is no magic bullet.Thinking of you.
Sylvia xxxx
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Hello jenn-uk
Thank you for your
post. I just wanted to say that I echo everything you have said to
Septemberbird. It is true that loads of people have gone through this
thread since inception and have gone on to live normal lives.Thinking of you.
Sylvia xxxx
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Hello linali (Lindsay)
I just wanted to say
that I am sure Septemberbird will find your words comforting,
reassuring and helpful. It is definitely true that the best way to
get through a cancer journey is to do it in stages and not try to
concentrate on everything at once and fill your head with too much
information. Within each stage sort out anything that comes up.I hope things are going
well for you. The weather has been horrific here in Exmouth and
around Cornwall, Devon, Dorset and Somerset. The grounds here look a
mess and I have been out gathering up all the boughs that have fallen
off a large deodar tree (fir tree). The gardener will have a lot of
tidying up to do. The noise of the wind has been dreadful all night
and is still going on. It is not conducive to peaceful sleep! There
does not seem to be any let up in sight.Take care.
Sylvia xxxx
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Hello everyone
I just thought I would
post the basics from the recent e-mail from Cancer Active. I hope all
of you are getting the e-mail to keep informed.The last headline I
gave was Stress, the fourth pillar of cancer. The other important one
was Stopping metastases. You need to click on A step change on
stopping metastases. “A lot of people with cancer have 'stopping
metastases' as their prime concern. Here is new research from a group
who are about to go to clinical trials with their new drug. Their
recent research on a double protein drug has been described as a
'step change'. Read why.”“Michael King,
professor of Biomedical Engineering and his team at Cornell
University in the US, have found a way of killing 90% of circulating
cancer cells by attaching proteins to the white cells of the blood.
This finding could mark a major step change in cancer treatment
(Proceedings of the National Academy of Sciences).”To read more click on:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3520
I was interested in
number 9 of the 10 subjects included in this e-mail. The title is How
complementary therapy helped in breast cancer. Under this heading I
clicked on Homoeopathy helped me get through breast cancer treatment.As you know, I used
homoeopathy throughout my treatment. I was in fact referred to the
hospital in Bristol by my breast cancer surgeon in Exeter. She seemed
to do this, but I requested it. Reading the article I saw mentioned
the very consultant who had treated me in Bristol. The article makes
interesting reading.I should make it clear
that I used these treatments as adjuncts to the conventional
treatment and I did it on the advice of the homoeopathic consultant
and the nutritionist consultant I saw before I began orthodox
treatment. Both of these said they could help but that I needed to
have the orthodox treatment, which I did. I do not think I could have
survived without it.Thinking of you all and
hoping that we shall soon hear from bigleggy (Sandra) in Scotland so
that we know that she is alright as she goes through chemotherapy.I would also like to
say that we are missing the two men on our thread, so hello Michael,
I do hope all is OK with you, that you are well and have not had any
floods where you are. Did you happen to see the headlines on the
Guardian on Tuesday Feb 4th? Alcohol and obesity fuel
cancer surge – experts issue time-bomb warning and say key is
prevention not treatment by Sarah Boseley, Health Editor. I would
welcome your comments.Hello peterandliz, I
hope you have not deserted us and that all is well with Liz. What
happened about Deren? What news is there from Facebook?Best wishes to
everyone.Sylvia.
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Hello everyone
I thought you might be
interested in having a look at the article in yesterday's Guardian
that I mentioned to Michael. The link is:http://www.theguardian.com/society/2014/feb/03/alcohol-sugar-smoking-fuel-cancer-surge
The article begins as
follows:A concerted global
effort to tackle causes of cancer linked to lifestyle such as alcohol
abuse, sugar and obesity, was urged yesterday by the World Health
Organisation as it is predicted that the number of new cases is set
to soar by 70% to nearly 25 million a year over the next two decades.
It goes on to say that half of these cases are preventable because
they are linked to lifestyle. A lot of these cancers are associated
with the lifestyles of more affluent countries with increasing use of
tobacco, consumption of alcohol, highly processed foods and lack of
physical activity.The theme is preventing
the disease more than curing it.One idea was to tax
sugared drinks.Have a look at the
article for more details.What concerns me is
that half of Britons apparently do not recognise the importance of
diet in protecting them against cancer, according to a poll carried
out by the World Cancer Research Fund. Also of concern is the fact
that 59% of people did not know that putting on weight increased
cancer risk.Breast cancer is the
most common diagnosis in women, 25.2%, and caused 14.7% of deaths,
which is a drop and now just exceeds lung cancer deaths in women,
13.8%.I hope you find all
this interesting.That is all for now.
Sylvia
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Oh Sylvia! I am so touched. I don't often post here but you know i am almost done with Chemo and I am so afraid of having more surgery. I feel I am not doing the best I can if I do not have BMX...so sad. I have small breasts, but still it is hard.
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Hi Sylvia, I find it incredible how you manage to answer everyone and be so informative, please don't ever stop, we need people like you. I have been reading this forum since I was diagnosed back in November 2011 and it has been a fantastic source of encouragement and information to me and many, many others.I wish I had started to contribute earlier. I often wonder whether the experts such as oncologists or breast surgeons ever look at these sites to see how a cancer diagnosis, chemotherapy and radiation affects their patients. I think it could be a valuable source of information for them into how their patients cope with everything thrown at them, their fears of recurrance and how they are medicating themselves with alternative therapies.
I love pilates, I started 6 weeks after my final radiotherapy on june 21 2012 and have never looked back. I was in terrible pain with my lower back, in fact I had an xray on it as I was so concerned that the cancer had travelled there, but thankfully the xray only showed "wear and tear". Pilates has strengthened my back and core muscles and I now stand taller and have a lovely flat tummy and no more back pain!!!! I have made lots of friends there and we all go for a cuppa together after our friday morning session. I highly recommend it to everybody. I also started yoga but found it a little too hard on my knee joints so I stopped it.Bye for now, Hero.xx
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Hi Sylvia and all,
So sorry Jenn to here what you are going through. Do you know LuLu from Edinburgh also?
Thank you for thinking of us and we are both fine. Have been busy the last few weeks and have not thought to much about cancer or read the threads. Its nice not to think about it but reality does hit home now and again. Especially reading what Jenn is going through at the moment knowing Liz's first diagnosis was very similar.
Liz is still in a lot of pain in her joints after having her ovaries removed and is considering a low dose of HRT to see if that helps.
Steve Evans the man from Wolverhampton with cancer died a couple of weeks ago.
Deryn has become a bit of a celebrity appearing on the local news in Norfolk. He was also on the local ITV news last night in the Bristol area and has been interviewed by national newspapers. Many of them has got his situation completely wrong claiming he is getting better from cancer after being told he has 3 days to live. This is completely untrue the cancer went into remission about 2 years ago. He was then given a bone marrow transplant to remove any cancer cells left in his body. The transplant failed. The doctors tried 3 times to put Deryns bone marrow back which failed on all 3 occasions, so they thought and was sent to die as he had no immune system.
He had terrible infections in his fingers which were being eaten away as he could not fight the infection. After a few days of being out of the hospital he started to feel better and his fingers began to heal. This was thought to be impossible. Deryn is going from strength to strength. No one in the world has ever had their bone marrow transplant graft back after 30 days. Deryns grafted back after about 60 to 70 days which the doctors are claiming to be a miracle and something they thought was impossible hence all the interviews.
Liz's friend who is dying from ovarian cancer has had good news that it has shrunk a bit. She has her last dose of chemo soon then has a 3 month gap before she can have any more. she has been a lot more tired these last few weeks.
Lulu who runs some of the cancer groups on Facebook has had a bad reaction to the trial she was on so has been taken off the trial and goes back onto tax today. Despite initial good results on the trial her cancer has started to grow again.
For the first time I have not read all the messages posted in the last 4 weeks on here. After nearly 3 years from when Liz was first diagnosed I do not feel the hunger to read messages to see what other people are going through or to collect information. Not sure why! It may be because Liz has other problems with aching joints or life is just returning back to normal or something resembling normal.
Have been watching the news about the bad weather in your area Sylvia. Knowing Dawlish very well its terrible to see peoples lives in some cases ruined but at the same time seeing the amazing power of the sea against solid brick and concrete paths that have stood for 10s of years. something it would take men weeks to destroy, destroyed in a few hours by nothing more than water.
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Hello Jianchi
Just concentrate on
getting through chemotherapy and then have a good think and talk with
your medical team and then come to some decision.Wishing you well and
thinking of you. This cancer journey is very difficult but it can be
done. It is especially frightening and difficult for young women with
young children to bring up.Fond thoughts.
Sylvia xxxx
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Hello Hero1967
Thank you for your kind
words. It is all the women on the thread that make it useful and keep
everyone up to date about what is going on with treatment. I think
the oncologists and breast cancer consultant surgeons have to
concentrate on the physical side of the treatment and have to remain
unemotional in order to do their work. They have to work with the
tools and information they are given and offer treatment accordingly.
It is a tough journey with surgery, chemotherapy and radiotherapy,
but we can get through it and we can alleviate or cure some of the
side effects. I do not believe that I would be alive today if I had
not had all the conventional treatment.As for the emotional
and psychological effects of a breast cancer diagnosis, there are
charities and support groups out there that can help. It is up to us
whether we want to be involved with them. I know that accepting my
oncologist's offer of visits from Hospiscare was beneficial to me. I
really enjoyed chatting with the nurses. I also went to see what
FORCE charity was about. It was set up in the grounds of the Royal
Devon & Exeter Hospital in a beautiful modern house and it was
good to go for a cup of tea and a chat. I did not want aromatherapy
or anything like that, but some women find it relaxing.I was interested to
know about your pilates and I am glad that you enjoy it so much and
that it has been beneficial in helping your lower back pain. You
sound as though you are very fit and it is always good to sit and
chat with people. I can imagine that yoga can be quite challenging.
We all have to find our own way of staying fit.On this thread we have
over the years discussed nutrition a lot and I think it is common
sense to eat a healthy, balanced diet. After all, our car would not
function without the proper fuel and our bodies cannot function
without it either. We are what we eat (and drink)!As for anything to do
with the so-called alternative treatments, that is an individual
choice. Certain things may or may not help, but I firmly believe that
only the standard treatment available today will get us into
remission but we have to help ourselves along the way by eating
properly and keeping physically active.Keep well.
Sylvia xxxx
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Hello peterandliz
It was so nice to see
your post. I was glad to know that you and Liz are well. I am glad
that you are getting on with your lives and not thinking too much
about cancer. I can perfectly understand that.We are all keeping our
fingers crossed for Jenn-UK as she goes through this difficult time.I was sorry to read
that Liz is still in a lot of pain in her joints after having her
ovaries removed. I would think that having such surgery must hit your
body hard and that it takes a lot of time to recover. I do not know
what to say about HRT as it has had a lot of bad publicity over the
years. Has her doctor suggested it?I was saddened to read
that Steve Evans the man from Wolverhampton with cancer died a couple
of weeks ago. I remember watching him on the links you gave and he
was a character and inspirational.I was glad to read that
Deryn is still going from strength to strength. It just goes to show
that we can never tell what will happen with cancer.I was also glad to know
that Liz's friend had good news and that the cancer has shrunk a bit.
I do hope the last chemotherapy dose will not be too hard on her and
that she will be OK during the three month gap.I was wondering how
Lulu was doing and was sorry to read that she had had a bad reaction
to the trial she was on and has gone back to a taxane. I think it
often happens that on the trials you sometimes get initial good
results and then the drug fails to work. They do say that the
taxanes, either Taxol or Taxotere are very effective chemotherapy
drugs.The weather here is
certainly awful. It is beginning to be like a bad dream. It just will
not stop raining. I could not believe the pictures of Dawlish that I
saw on the news yesterday. It is going to take a long time to repair
that wall and it will cause chaos without the railway working between
Exeter and Penzance. It was built too near the sea. I have been on
that train in calm weather and did not feel very reassured. The town
of Topsham is really taking a beating as well and I am glad I am not
planning to go to Exeter. There is a point where the river can come
over the road. Exmouth has taken a beating as well. The seafront has
been closed quite a few times and the surrounding streets flooded.
The ice cream kiosk on the seafront is now lying on the beach and
there is sand everywhere from the rapidly disappearing dunes. I am so
glad I live uphill from the seafront!I hope you will keep in
touch and remember that you do not have to post about cancer. Say
hello to Liz and to Lulu and to all the people in your group on
Facebook.Best wishes.
Sylvia
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Hello Jenn-UK
I was sorry to read
that you feel upset about Cancer Active. It is just a charity
offering information and it does not claim to have any cures. It just
offers information based on research. You read it and take it or
leave it.I have never bought
anything from the Cancer Active site in the way of products. I have
read one book, given to me by a friend, and that is all. I do believe
that eating the so-called Rainbow Diet, a diet of fresh fruit and
vegetables, especially the deep coloured ones, is a healthy way to
live, but I do not believe any of them are magic bullets. I do not
believe there is a cure to cancer, especially not a magic bullet.
Cancer is very complicated, multi causal I would think, and it has to
be treated in the best way that the medical establishment can today.I firmly believe that I
am alive today because of the standard orthodox treatment that I
received in 2005 and 2006.The homoeopathic
treatment that I received from an NHS consultant, to whom I was
referred by NHS breast cancer surgeon, may have helped with the side
effects of chemotherapy, surgery and radiotherapy. The oral Iscador I
was prescribed throughout is an immune booster and is used in Germany
to treat cancer.The long lasting side
effect that I have from chemotherapy is peripheral neuropathy in the
feet. My oncologist told me that was definitely caused by the
Taxotere and that it will not go away.I am certainly not
offering any advice to anyone on the thread. We are not supposed to
offer advice and we just describe our own treatments, how we dealt
with side effects, and we try to comfort and reassure. As I say, the
only thing of which I am sure is that I would not be alive today
without the orthodox treatment I received.There are threads on
bc.org that are for those believing in alternative treatments, but
this thread is not one of those. I started it in 2010 because I
wanted to bring TNBC out of the dark cupboard in which it seemed to
be. It is not in that dark cupboard now. There is much more
information about it but when I was diagnosed in 2005 there was not
much mention of it. I was merely told that I was negative and the
prognosis was poor because tamoxifen was no good. I went through my
treatment without any support from threads and just discovered bc.org
when looking up information about an over active parathyroid gland
with which I was diagnosed at the same time as my breast cancer. I
met sam52 on the threads and we went through our parathyroid surgery
together.I do hope that the
chemotherapy will work for you and that you will come through all of
this.I do hope that you will
let us know how you get on.Wishing you all the
very best.Sylvia xxxx
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HI ladies,
As I’m sure some of you know, for Facebook’s 10th
anniversary they made little 1 minute movies (from the pictures and posts on
your facebook page) for whoever wants to do a couple of extra clicks to make
and then post them to your FB page. I do not know how they chose the pictures that they chose or if
there was some kind of random algorithm. In any case, this movie of mine appeared
a couple of days ago.There was an option to share this link even with people who
do not have FB accounts, so I hope this works if you would like to see it. It
turned out to be mostly from 2013 and my battle with BC so this is why I
thought I would share it.The end section of the movie where the pictures start to
move faster I would narrate as follows:Chocolate cake for my birthday, yay!
Party at my house just before the trouble
started, my younger group of friends from language school…I’m in the back with
a haircut I really liked (and was about to lose, sniff)The day I shaved my head, newly bald
My mom who I know watched over me through it all
My book club friends….I’m in the middle on the
sofa, head covered.One week after the end of my year of breast
cancer.On behalf of us all, Suck it cancer.
https://www.facebook.com/photo.php?v=10152584506124638&l=5843751275832046027
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Thank you Sylvia!
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Hi Susaninicki
Enjoyed your film! The overriding feel was of joy and happiness - so I do agree that cancer can go suck!
Normandee x
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Hello Susan,
Thank you for the film. It was most enjoyable and, I agree with Norma that it is full of happiness. I hope you are enjoying normal life. Keep posting in. It does not have to be about cancer. It is therapeutic to switch of and post about our life and what we are like independent of a cancer diagnosis. We must not let cancer define us.
Thinking of you,
Sylviaxxxx.
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Top 5 Advances in TNBC Research in 2013:
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Hello InspiredbyDolce (Debra)
Thank you for posting the link. I have
printed off the information and shall have a look at it sometime
today.Thank you for all the effort you put in
on our thread.Thank you to all of you who post
regularly and make such a strong contribution to the thread.I hope you all have a good weekend. It
looks as though more storms are coming our way.A sentence that has stuck in my mind
this past week is “happiness is the freedom from fear” and
another one was “we should all aspire to a tireless variety of
thinking and creativity”.Thinking of you all.
Sylvia xxxx
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Hi Sylvia,
I have been reading through the posts and there is some interesting stuff especially the link that Debra posted.
I hope that you survived the latest storm it seemed to be building here throughout the night and is not quite as bad this morning.
It is still wild and windy and I am hoping that it will calm down because there is a healing mass at 2pm in the local church. Also a local sculptor made a statue of St Peregrine and that will be dedicated today. It is always a beautiful mass and although I am not catholic I love the sense of unity that it brings to everyone that attends. Last year I sat with Sharon and her daughter. Sadly Sharon passed away in September but I will always remember her serenity and smile.
We will collect Oskar tomorrow and I cannot wait to see his cheeky little smile. He has a really naughty sense of fun....... just like his daddy.
I have spoken about my issues at the centre and whilst not totally resolved in my head it was as many things are a lack of communication and misunderstanding. After my appointment with the psychologist I have thought about my reasons for going to the centre . She felt that as I am retired and was always involved in some kind of negotiating or campaigning that perhaps I was looking for those needs to be fulfilled at the centre. She may be right. I am at the stage where I want to do something to make things for cancer patients and survivors better.
On a personal level I have a question which is not just based on vanity but a niggling worry that it may have medical reasons.
I would appreciate any feedback if anyone has heard of a similar problem.
One benefit of chemo for me was the loss of body hair. I always had quite strong dark hair on my legs and arms.
I usually shaved and had them waxed if it was a special occasion. I always had sensitive skin that is even more so since the chemo and only had my legs waxed once in August for a wedding. Over the past couple of months the growth is excessive and as my husband so kindly comments, I have legs like a rugby player. I did mention it to my doctor at the appointment to check out the cysts but he didnt say anything.
I'm sure at this stage he thinks that I am a worry wort but just wondered if anyone else has encountered this.
Thank you
I will say special prayers at the mass for everyone on this thread . It is an inclusive eccumunical service and encompasses everyone.
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Hello InspiredbyDolce
(Debra)Thank you for taking
the trouble to post that useful link. I think the blog by Patricia
Prijatel sums up very well what is happening in the treatment of TNBC
at present and what new drugs may become available in the future. The
other aspects such as genetic research, technological advances and
lifestyle changes were all very interesting.I do did know of
Patricia Prijatel and remember reading her story some years ago, but
I have not read her book Surviving Triple Negative Breast Cancer.Have you read this
book? If so, what do you think of it? Do you follow her blog?I noticed that the link
you sent comes from curetoday.com. Do you read the magazine to which
you can subscribe? If so what do you think of it?I would not take
bisphosphonates, but that is my personal opinion.Thank you for your
effort. I am always amazed that there are few comments on links that
various people post. You just hope they are being read.Thinking of you.
Sylvia xxxx
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Hello linali (Lindsay)
Thank you for your
post. Like you I found the link that Debra posted very interesting.I was wondering how
many people on the thread or on the forum in general are taking
bisphosphonates (Zometa and Reclast) as a preventive for bone
metastases. Perhaps someone will post in to let us know. I was
offered bisphosphonates for treating osteoporosis but having read
about them declined the offer!It is very useful to
know that adding the chemotherapy drug Carboplatin to standard
treatment improved outcomes for women with triple negative breast
cancer. Knowing this, if I were newly diagnosed, I would be asking
for this drug to be added.I saw from this blog
that bevacizumab (Avastin) also improved outcomes.Another useful drug
seems to be bortezomib (Velcade) which is also used in multiple
myeloma. Apparently researchers selectively turned off genes in
triple negative tumour cells and when turned off the cells die. It
would be useful to hear from anyone taking this drug.It was also useful to
know that 75% of tumours with the highest levels of lymphocytes
(LPBC) which means lymphocyte predominant breast cancer, had a
pathological complete response to doxorubicin (Adriamycin) and
taxanes plus carboplatin when compared to non-LPBC tumours. I just
shows how carefully and intricately cancer cells have to be studied
to get the best treatment and outcome.Metformin was also
mentioned as a drug that can effectively reduce breast cancer risk
that is associated with insulin resistance and was directly
correlated with Ki67 status. Many TNBC tumours are positive for Ki67.It just shows you how
much you have to be informed about your pathology report.We are surviving the
wild weather here but are fed up with the cloud and rain.I do hope you enjoyed
the mass.I hope you are enjoying
having Oskar.I do understand that
you want to do something to make things better for cancer patients
and survivors. That is the reason why I started this thread.I am not a doctor but I
would think that your problem could be due to an hormonal imbalance.
Hormones can do very strange things. I know that post-menopausal
women in whom lack of oestrogen can be a problem may grow facial hair
for example and I know men who have grown breasts from treatment for
prostate cancer.Fond thoughts.
Sylvia xxxx
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