Calling all triple negative breast cancer patients in the UK
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I have a breast full of hematomas from being smashed, cut, and stabbed over and over...aka ALL CLEAR! Relief, sweet relief.
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yay, Susan!!!! That's the way to go, so relieved for you - now you can go on vacation with a happy heart - enjoy!
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hi Norma
Ill have a look for the group on Facebook, I know what you mean about Facebook being very different to this thread and the nice balance between the two
My superstars group is quite down right now, I think it's brought it home to everyone just how serious this disease really is, and how quick It can take you, it's strange how close you can come to people that you've never actually met in "real life"
Just noticed your coming up to your two year since diagnosis milestone, do you think about it less now then when you first finished treatment? Right now I feel like the worry of recurrence will take over my life...
Lovely to meet you too
Take care
Gill x
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hi Susan
Im so relieved for you......now you can go celebrate!!!!
Gill xx
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hi Sylvia
Just to answer your question about Facebook there are many groups on Facebook about breast cancer, some are 'open' meaning anyone can join some closed but my group is secret which means it doesn't show up anywhere on Facebook to anyone looking for it and is invitation only and you have to be added by someone already in the group....all posts photos and information can only be seen by group members so you do tend to put things on there that maybe you wouldn't put on your facebook page or a public thread....the breast cancer care site starts a new thread every month for that months chemo starters and the Facebook group normally develops from the members of that thread....there are no moderators and we can and do talk about anything we like.....
The other lady we lost was called Paula sincock and started chemo the same day as me and finished the same day on dec 18th it was her first breast cancer we counted the days down to finishing chemo and we were both happy we were done for Xmas, the only difference was I had surgery first and Paula's was after chemo, her surgery was 8th jan and she was gone by feb 14th, it was Paula passing that shocked the group I think... at least it did me because Sue had lung mets when she joined then it spread to her brain but Paula was so unexpected it spread to her brain as well and she was gone within three weeks
The 37 of us in the group 8 of us were triple neg...you asked what they had in common Sue and Paula were both triple negs and a similar age around 50 other than that I'm not sure
Sorry my post is so negative but just needed to get it out to people who understand...I was telling a family member and their response was well you didn't really know them did you....they just don't get it
Take care
Gill x
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Hello Susan
Just popping in to say
I am so glad that you are in the clear. I can almost hear your sighs
of relief and shouts of joy. No one except those of us with
experience of this disease knows the anxiety we go through when
something may be wrong. You can now relax and enjoy your planned
holiday.Fond thoughts.
Sylvia xxxx
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Hello Carolben
I just wanted to say
hello and to let you know you are in my thoughts. I am glad to know
that treatment is going well for you.Sincere best wishes.
Sylvia xxxx
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Hello Jackpot (Gill)
Thank you for your
information about Facebook and the breast cancer groups. Thank you
for explaining that there are open and closed groups. Now I
understand what goes on I understand why some women have asked me to
join their particular group and have said that it is secret.Thank you for telling
us about Paula Sincock and I can sincerely understand that you are
feeling low about her. Whatever others say, we do get attached to the
people on the threads and we do care about them.I was interested to
know the slight differences in your treatment, especially the
chemotherapy pre and post surgery. Usually chemotherapy is suggested
if the tumour is large and needs to be shrunk in order to perform
surgery. I was fine with having chemotherapy first because I had a
very large tumour and because chemotherapy is systemic I hoped it
would be seeing off any cancers that had strayed. I honestly think
there must have been something wrong initially for Paula to have died
so quickly after surgery. Most patients seem to do fine with primary
breast cancer and its treatment. Without all the details it is
difficult to know what have gone wrong.It does shake us all up
and it makes us realise we cannot take anything for granted and can
only do our best to try to stay fit and healthy, so that our immune
systems are strong. Even now I still have moments of anxiety about
this disease.With regard to Paula, I
suppose only her consultants would be able to explain why cancer
spread so quickly to her brain. Some cells may have escaped during
surgery. I have read this can happen.I hope you can manage
to have some happy moments today and I hope your sons are around to
cheer you up.Focus on yourself, keep
looking forward to those bike rides.Thinking of you.
Sylvia xxxx
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Hi Gill
Yes I am coming up to my 2 years since diagnosis, but it is actually 2 years and 4 months since I found my tumour in November '11. On my two visits to my GP she assured me the thickening was 'normal breast tissue' - thank goodness I listened to my inner voice!
Anyway to answer your question about fear of recurrence - yes, I do and especially about now as I appear to have entered that 2 to 3 year from diagnosis window when most recurrences seem to surface. I try so hard to keep things in check, I tell myself most women survive TNBC, that I was labelled early breast cancer as opposed to locally advanced, and that my Oncologist and Breast Surgeon both said they were 'going for cure in early breast cancer'. However it is a natural response to a life threatening disease to worry about every little niggle. We all know of women who have not been lucky (like your 2 ladies) and I am only human - my mortality is something I have considered regularly!
So what do us ladies do about this fear? I guess knowing we all feel the same helps, and the bottom line is we just learn to live with it as best we can. Interestingly Sylvia mentions that even 8 years out she still has occasional fears even though I have read that after 8 years recurrence is pretty much zilch. I think it is just what cancer represents in our world, the one disease we still haven't totally conquered, and I don't find myself worrying about brain haemorrhages or anneurisms which are probably more lethal!
You and I have very similar stats, we appear to be both doing well, let's hang on to that fact and try to face the future with hope, knowing that we did have a nasty disease but we got treatment, it's now gone and we have got a lot of living to do!!!
Best wishes, Norma X
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Hello apandy (Anne)
I am just popping in to
say that I hope all goes well when you start radiotherapy on February
19th. It will be a busy time for you until you finish on
March 11th. Focus on that date. I hope you are well.Fond thoughts.
Sylvia xxxx
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Hello Septemberbird
I hope you and your mum
are doing well.How did your mum get on
when she had a lumpectomy and node removal on February 14th?
I hope she is recovering well.Fond thoughts.
Sylvia xxxx
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Hello lindacama
I hope all is well with
you, that you have found all the information you needed for your
friend with TNBC and metastases to the liver, bone and lung. I hope
she has started some treatment and that she will have some good
results.Fond thoughts.
Sylvia xxxx
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Hello everyone
I just wanted to wish
all of you a good week.Bigleggy (Sandra) I
would love to hear from you to know how you are. I hope you are fine,
that you have finished chemotherapy and are now doing radiotherapy.Thinking of you.
Sylvia xxxx
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Hello Michael
I thought you might be
interested in the information that is in my latest e-mail from Cancer
Active. It is item 8 on the e-mail and is entitled A New way of
tackling lymphoma. I was interested to read that lymphoma is the
fastest growing cancer in the UK and estimates show that, if the
growth rate is maintained, it could be in the top three cancers by
2025. Many experts link its cause to environmental toxins. You need
to click on Team learn how to stop lymphoma and Lymphoma –
overview.http://www.canceractive.com/cancer-active-page-link.aspx?n=3522
http://www.canceractive.com/cancer-active-page-link.aspx?n=164
We had a lovely dry
sunny day here in Exmouth yesterday and the seafront, despite all the
damage, was absolutely packed. Today we are back to mournful Monday
with cloud, rain and wind.Best wishes.
Sylvia
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Hello sam52
I do hope things are
not going too badly with you. I shall be glad to see some better
weather.I have just bumped up
the threads High Calcium and Breast cancer and hyperparathyroidism.
There are still posts going on but I thought they needed bringing up
to date.I hope to hear from
you.Much love.
Sylvia xxxx
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Good afternoon Sylvia
That was interesting information about lymphoma. I know that it is increasingly common and I think environmental factors are a major cause. I think I said before that I used to be a hairdresser in the 70's and could not work wearing gloves so was exposed to lots of colours and perm lotion. I know that the US military automatically give invalidity benefit to any servicemen who served in Vietnam and develop lymphoma because of agent orange.
I am having to rebuild the Janette Collins foundation website as a recent upgrade to Windows 8.1 seems to have destroyed a lot of data. I am also worried about my youngest stepson as he is very depressed at the moment, he never could handle winter well but of course this time of year is the time Janette was so sick. Depression in young people worries me. There is an epidemic of suicide in Ireland; two young people in this village have killed themselves in the last two weeks. I would like to think Alex is aware enough to seek emergency help if need be. He is due to start counseling in a couple of weeks.
Michael
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Interesting new site I came upon yesterday - when you open this link up talks about the role meat has in us potentially developing cancer.
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Hello Michael
I was glad to know that
you found the information interesting. I do remember your having said
that you used to be a hairdresser and how you exposed yourself to
lots of chemicals. For the most part it is very difficult for us to
control our environment in an industrialised world and I suspect this
is one of the major reasons why cancers are increasing. We can do our
bit with our food and with exercise but our environment is much more
difficult. It is mind boggling the number of household cleaning
products, gardening products and toiletries on sale and most of it is
probably doing us harm. I try to keep everything to the minimum.In the latest e-mail
from Cancer Active, I was also interested to read about Oestrogen –
The Killer in our Midst, and how oestrogen is one of the main drivers
of cancer in both females and males. We all know about oestrogen and
breast cancer but it is also, apparently, the driver in lung,
colorectal and prostate cancer. I was surprised to read that the
fastest growing form of lung cancer is oestrogen and it has nothing
to do with being a smoker. There are two titles that got my attention
in the e-mail. One was Fastest Growth Area of Lung Cancer, and
Oestrogen – The Killer in Our Midst.http://canceractive.com/cancer-active-page-link.aspx?n=3517
http://canceractive.com/cancer-active-page-link.aspx?n=3518
As always I would be
most interested in your comments.I was sorry to read
that you are having to rebuild the Janette Collins Foundation because
of dat being destroyed. My husband Raymond said that you should use a
server that uses a Linux system instead of one that uses Windows.I was so sorry to read
that you are worried about your youngest stepson Alex and I do hope
he will be alright. I know there are lots of people that get very
depressed during the winter and are suffering from seasonal affected
disorder (SAD). There are special lights that you can buy to sit in
front of that are supposed to help. Apparently it makes it seem like
summer. This autumn and winter have been especially bad and lots of
people are really fed up and run down. It could be that a nice long
holiday in the sun would do Alex a lot of good.Of course, I understand
that this time of year is particularly bad for both of you because it
was the time of year when Janette was so unwell. I have March 12th
in my head as the date she died. Perhaps both of you should do
something very cheerful and happy to do on that date, as that is
probably what she would want. Celebrate her life and the happiness
you had with her. How are her other children coping?I can understand your
concern for depression in young people. I have read about these
suicides in Ireland and two young people in your own village in the
last two weeks is of particular concern. I do hope Alex will benefit
from counselling. Life is very difficult for young people in the
Western world. There is all the uncertainty about their lives and no
stability. I would not like to be a young person today. They have
money worries with their studies, lack of security with jobs,
difficulties with setting up a home, seemingly insecure relationships
and a Western world that seems to be adrift. I would not like to be a
young person today.Take care, Michael.
Fond thoughts.
Sylvia
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Hello InspiredbyDolce
(Debra)Thank you for the link,
which I shall look up later.I hope all is well with
you.Fond thoughts.
Sylvia xxxx
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I do love a good Flash-mob and the end of this one is particularly moving.
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Hello InspiredbyDolce
(Debra)I am just posting to
say how interesting I found the article on the Cancer Tutor site (The
future of cancer research). The article under FAQ – why is meat
forbidden? was of particular interest. As you know, I do not eat any
meat or poultry and the article convinced me that it is the right
thing to do. Of particular importance was the mention that both meat
and sugar feeds cancers. I am sure I shall be reading more on this
website.I was interested to see
that you have posted details of your nutrition in your signature.
That was a good thing to do. I shall probably do that as well very
soon.Of course we have to
remember that people will eat what they want. However, you are what
you eat!I am about to change my
survival since diagnosis to 8t years 8 months. The 20th of
every month always makes me very pensive.Sending you fond
thoughts.Sylvia xxxx
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Hello Susan
I just wanted to thank
you for the link. I enjoyed viewing it.Hope all is well with
you.Fond thoughts.
Sylvia xxxx
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Hi everyone
Sorry I haven't been on for a bit. Yes, Sylvia, I have started my radiation treatment. In fact I started it on Wednesday and have now had three treatments out of 15.
It is now over three weeks since my last chemo and I have really been hit with fatigue. I find that doing anything much, even just a short walk, is very tiring. My nails are horrible, all bumpy and ridged, and my hands are starting to feel stiff. I have found the fatigue is actually worse than when I had the chemo, as though it is just building up. I mustn't moan as I know others have had it a lot worse than me. I am just anxious I might not be well enough to return to work at the end of March. I'm so glad it's Saturday tomorrow and I don't have to do anything or go anywhere!
The October Optimists group is thriving on Facebook and also on the Bc care website. Most of us are in the early stages of radiotherapy now.
I'm so sorry to read the sad news from the September Stars. I hope everyone is coping.
Best wishes to all, especially those mid treatment. Have an enjoyable and dry weekend everyone.
Anne x
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Hello Anne
I was glad to know that
you had finished your chemotherapy and had started radiotherapy.I am not surprised that
you are suffering from fatigue three weeks after chemotherapy.
Fatigue can go on for a very long time so three weeks is nothing at
all. You must take it easy and give your immune system time to
strengthen and start working again. Do not forget that your body has
been filled with toxic drugs and it takes a long, long time to
recover. Let time take its course and go gently with everything. Your
nails will take time to recover. Docetaxel or paclitaxel is very hard
on the nails but they do recover. They are also hard on the hands and
feet. I have peripheral neuropathy of the feet from docetaxel and my
oncologist, GP and a podiatrist have told me there is no cure for
this. It is always worth discussing these things with the oncologist.Take it easy while you
are going through radiotherapy. Most women find it fairly easy after
chemotherapy but it is also toxic treatment to your body and it does
cause fatigue, so you have to continue to rest and relax and take
good care of yourself.Try not to worry too
much about going back to work at the end of March. That is five weeks
away and you have to see how you are at that time. It will be soon
after the end of your radiotherapy treatment and you may need time to
recover, especially with being a teacher. Take it one day at a time
and see how you are. It may be that you need to take the last term
off and go back fit and well in September.I was glad to know that
your group is thriving on Facebook and also on the Bc care website.
Is that a charity support website? I was glad to know you are all now
going through radiotherapy. If you have any unusual side effects or
any tips on how to cope, please let us know. It would be so useful to
integrate all the information and problems so that we can all sort
everything out.Wishing you all the
very best.Sylvia xxxx
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Hello everyone
We do not seem to have
many people going through treatment now and most have finished
successfully, which is good news. We do need to support apandy (Anne)
as she goes through radiotherapy and we must not forget Carolben who
is still having treatment for mets. She needs our support.I do not know what has
happened to Bigleggy (Sandra) in Scotland. She was going through
chemotherapy and I hope all is well with her.I do hope all is going
well with JennUK who was having problems.We have not heard any
more from Septemberbird who was posting for her mum, 57, who was
having a lumpectomy and node removal.As for Jianchi I hope
you managed to make a decision about a mastectomy.Lindacama I hope all
has gone well for your friend with TNBC metastases to liver, bone and
lung. I hope she will get some successful treatment.Best wishes to all of
you.Sylvia xxxx
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hi Sylvia
I hope your well....I've been doing a lot of reading on the Internet and seem to be coming across more and more information about bicarbonate of soda, iodine and magnesium chloride as being effective in the treatment of cancer, have you ever read anything about any of these, I've also bought a book about how iodine can treat breast cancer
http://www.amazon.co.uk/gp/product/1552128849/ref=...
Have you heard of it or read it? I thought it sounded quite interesting? Do you think something as simple as bicarbonate of soda could treat cancer? It said if you take a teaspoon in water twice day till your ph levels go up to 8.5 cancer cells can't survive in a alkalised environment, another said of someone who had prostrate cancer that had spread to his bones and mixed black molasses with bicarbonate of soda and had a teaspoon twice a day of 16 days and a scan showed massive improvement, the idea being the cancer cells absorb the sugar but also takes the bicarbonate as well like a Trojan horse which then either caused apoptosis or reverted them back to normal cells I can't remember which....it was very interesting anyway, just wondered what your opinion was on this,
I have a really horrible rash from the radiotherapy that seems to be getting worse instead of better I'm going to speak to someone about it tomorrow....does that usually happen?
Hi Anne
I hope the radiotherapy is still going well, I'm a few weeks ahead of you and the fatigue does start to get better but going back to work at the end of march might be asking a bit much of you and I would definitely take Sylvia's advice and wait till the new term in September....I hope the nails stay put some of the girls have lost a few on their hands and feet, they never really said it was painful more of a nuisance, I was quite lucky there it was one of the few side effects I didn't get
Take care
Gill
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Good morning Sylvia
I have been away in England. hence no reply.
Alex went to the Samaritans drop in centre in Belfast and felt much better after. He, as will I, will find next Tuesday difficult. Janette died 4/3 (her birthday is 12/3) so we will spend the afternoon at the Ulster museum and then he is taking me to dinner as part of my Christmas present. On Janette's birthday we are all going for dinner on the Southbank London.
As far as the website is concerned; I am not having a problem with the hosting site, which I believe is Apache server. It is Windows 8.1. I beta tested windows 8.1 but when installing the actual 8.1 upgrade it destroyed the registry links and that means that the data between my PC and the server is lost. Please pass on to Raymond that I have used Windows since 3.1 and that I find Windows 8 the worst experience I have ever had. Personally I find it shockingly bad.
I sound like a tabloid journalist ;-)
Apandy: I have been having a lot of joint pain since R-CHOP six months ago and last week it became intolerable but I thought I would give Iboprofen a try and so far 3 tablets a day have really helped.
Michael
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hi Sylvia and everyone else - I haven't been around much because for some odd reason this thread was taken off my favorites list so it has not been popping up with new posts. At least I have discovered that and have just caught up on everyone's progress.
Jackpot - ask your radiologist for something for your rash - mine prescribed a cortisone cream for me, but I didn't have to use it. You will have it all behind you before you realize.
Sylvia - I am so thankful that I didn't break a bone, although the doctor said that a bruised periosteum is much more painful than a break, and I can certainly vouch for that. I can now dress and undress myself without help, so that is a step forward. I have started physio which I am hoping will speed up the mobility for me. Pain is still quite bad, but I don't need painkillers any more - I just use ice now. It has been over 4 weeks, and I haven't attempted driving yet. This has really slowed me down,!!!
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Hello Jackpot (Gill)
It was nice to hear
from you. I have not read the book you mentioned but I have read
before about iodine deficiency and breast cancer.It seems to me that
with the western diet people are deficient in many vitamins and
minerals and that this is probably undermining the immune system and
somehow leading to degenerative diseases like cancer. We need a
balanced diet and proper basic food, but unfortunately we no longer
know how fresh our food is and if there are any nutrients left in it.I think with iodine you
have to be careful as we need it in small doses and I would certainly
not take anything in supplement form without medical guidance and
without testing for iodine deficiency and a possible under-active
thyroid gland. I try to get iodine in my diet through eating a couple
of servings of North Atlantic fresh prawns in a week. I also buy
powdered kelp which I sprinkle on my vegetables and fish when I have
my main meal. The best source is seaweed and I sometimes buy Nori
green sprinkles to put on my food. The trouble is it has a pungent
smell and you can smell it outside of the cupboard.As for bicarbonate of
soda, I have read quite a lot about it as a preventive to breast
cancer, but again I do not believe in magic bullets. I cannot see the
harm in taking a teaspoon of it in a little water. We have had
information on the thread about bicarbonate of soda that I have found
from Cancer Active. I have read about turning your body from acidic
to slightly alkaline. Who knows whether there is any truth in it? I
do take some bicarbonate from time to time. What puts me off the
bicarbonate is that I also read it is the equivalent of having a
teaspoon of salt and we are told that salt is a baddie. It all gets
very confusing, because if you do not have sufficient you get cramps.
However, I do not put any salt on my food.The thing I do know
about bicarbonate of soda is that it is very good in warm water for
alleviating a sore mouth or mouth ulcers. It is also very good for
cleaning teeth and is in some toothpastes.What you said about
mixing black molasses with bicarbonate of soda sounds interesting.
All we can say from that is that it appeared to work for that man and
that a scan showed massive improvement, but would it work for
everybody and was there some other reason for the scan showing
massive improvement? It would have to be tried out on a large scale
to come to any real conclusion. We have all read that cancer cells go
after sugar and create angiogenesis (new blood vessels). With the
amount of sugar being consumed you would think everyone would have
cancer.I think that we can
only do what we think is right for us. We are all individuals. I know
that for me I am strict about what I eat and drink, which is no meat
or poultry, no dairy products, no alcohol or any kind of bottled
drinks, no fruit juice, no processed or ready foods, a little fish
and seafood, calcium enriched fresh soy milk, calcium enriched fresh
soy yoghurt, both unsweetened, and that my mainstay is fresh fruit
and vegetables, nuts and seeds, some beans and pulses and wholemeal
bread. From time to time I have some bicarbonate of soda. I keep
supplements to a minimum and take no medication at all.I try to keep active
but am not into manic exercise and I keep my weight stable.You mentioned
magnesium. I tend to try to get this in food, especially nuts like
raw almonds, but I do take a supplement for osteoporosis. What have
you read about magnesium in relation to breast cancer?Keep well, Gill, and do
not go overboard on the internet. I hope your rash disappears, but if
not get it checked out.Fond thoughts.
Sylvia xxxx
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Hello Michael and
adagioIt was nice to hear
from you and I shall reply later on today when I have got through
various chores.Best wishes.
Sylvia
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