Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk

Hello Norma,

It was nice to hear
from you.

It is strange about
these coughs that are going around. I was wondering whether it is
some kind of allergy to the environment.

I was glad to know that
you found the DNA gene discovery for ILC very interesting. I was
interested to know about the fellow teacher at your school who was
diagnosed with invasive lobular cancer ten years ago. I was glad to
know she has done well and is in great health. Would you happen to
know what receptor status she had? It was interesting to read that
her brother and her son both had testicular cancer in their twenties.
That makes you think of a genetic link. I was glad to know that both
brother and son recovered from their cancer. I get the impression
that all these cancers seem to be linked and I think it is probably
due to all the hormone disruption and malfunction and genes mutating.
I shall never forget how my oncologist told me that my triple
negative breast cancer receptor status had not necessarily started
off as such but could have mutated. There seems to be some kind of
link with triple negative breast cancer and prostate cancer. Let us
know what your friend thinks about the information.

I think it is important
to post any bits of information we come across in newspapers,
magazines, books etc. It is bound to be of use to someone.

I was glad to know that
your friend's arm is slowly improving. I do hope she will get through
the rest of the FEC without problems and that it could be she will
find Taxol has no problems for her. My oncologist who put me on
docetaxel (Taxotere) told me that Taxotere was not so hard on the
heart as paclitaxel (Taxol).

I must admit that I was
unaware that an antidote was kept in storage if needed with
chemotherapy. I wonder if they have an antidote for each different
chemotherapy drug. If so, that must be hugely expensive, especially
if most of it gets thrown away. I would love to know what these
antidotes are. This is something about which we are definitely not
told before we start chemotherapy! I do remember one of the
registrars to my oncologist telling me on one occasion that they did
have fatalities during chemotherapy! You can imagine that cheered me
up no end!!!

I do hope all goes well
for you during the summer term. Pop in when you can.

Thank you for your good
luck wishes for me tomorrow. I shall be so glad when tomorrow evening
comes. My appointment is at 1:55 pm.

Make the best of the
Bank Holiday on Monday.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Debra,

It was nice to see you
popping in and keeping up with everything.

I hope all is well with
you.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Michael,

I have just had a look
at another link, the one to do with new-medical.net. It was
interesting to discover yet another drug, called bortezomib, a drug
already used in the treatment of inflammation in rheumatoid
arthritis. It is also used in the treatment of the blood cancer
multiple myeloma. Researchers think it may be useful in the treatment
of breast cancer with triple negative receptors. They think it may be
able to stop metastases by shutting off the inflammatory loop, which
reduces cancer stem cells. More lab work is needed before trials can
begin.

Best wishes.

Sylvia

sylviaexmouthuk

Hello Mary

I was just popping in
to say that I hope all went well with your chemotherapy on Wednesday
April 30^th.

Hello Carolben,

I wanted to let you
know that I did have a look for more cancer books this week. I did
find a new one published in 2014 entitled B is for Brest Cancer –
from Anxiety to Recovery and everything in between – a beginners by
Christine Hamill. It is written in a simple style and with words
associated with breast cancer going through the alphabet from A to Z.
I am waiting for my copy to arrive.

The old faithfuls are
still on the shelves and I would recommend them. They are:-

Anti-Cancer – a new
way of life by Dr David Servan-Schreiber

Your life in your hands
by Professor Jane Plant

The Emperor of all
maladies by Siddhartha Mukherjee

They all make
interesting reading.

I think the best book
for reading stage by stage during your breast cancer treatment is

Understanding Breast
Cancer by Professor Mike Dixon, Family Doctor Books in association
with the British Medical Association (BMA). You can go to the
contents page and go through each heading as you embark on your
breast cancer journey. It is easy to understand, has illustrations
and a simple summary at the end of each chapter, not to mention a
very useful glossary of terms at the back of the book.

By the way, this series
of books tackles all kinds of illnesses and problems from ADHD to
Varicose Veins.

That is all for today.

Fond thoughts.

Sylvia xxxx

InspiredbyDolce

Hi Sylvia and Everyone,

Just wanted to share great news with you. I had my annual MRI yesterday and results have come back all normal!  My Radiologist (who knows my psyche quite well) called me directly to tell me.

I have the MRI and U/S annually, with each one alternating at 6 month intervals.

adagio

inspired-that  is fantastic news. Hope you can celebrate with some chocolate or a glass of wine! You must feel wonderful.

adagio

Sylvia - thinking of you tomorrow!

InspiredbyDolce

Sylvia, is your annual checkup tomorrow?  I read your post recently about it, but didn't realize it was already here!  Thinking of you tomorrow as well, and as your past experience has been a great indicator, I am not expecting you to post anything but excellent news!  

Adagio, I can't celebrate with anything yummy today, because yesterday after the test, we went to our favorite restaurant and I was so stressed and sure the sky was falling that I not only had enchiladas with eggs, but also split a margarita pie dessert with hubby.    I sure enjoyed every morsel though.

adagio

inspired - your favourite restaurant sounds delicious - I love enchiladas, but very rarely have them. Never heard of margarita pie, but it sounds interesting!!! You must be so relieved - now yu can relax and really live for the next months - yes?

linali

Great news inspired.

Sylvia good luck today.

I know that all the people who you have supported are with you today too.

Jackpot

Wonderful news inspired and sounds like a lovely meal to follow 

Hope everything was ok today Sylvia, expecting nothing but good news 

Gill

InspiredbyDolce

The margarita pie is very similar to a key lime pie. I think it is key lime pie with a touch of margarita mix in it actually.  Yes, back to living forever!  I wasn't stressed last year at MRI time because I didn't really know much about them, but since then I've learned how deep it looks, what it can see, etc and I scared myself, by over thinking things.  I was also worried that my previous mountain fall in March was going to show a false positive from the injury, so I had pushed it back to give me time to heal.  I was injured pretty bad, but healed really fast! 

Sending best wishes your way today Sylvia!

sylviaexmouthuk

Hello Inspired by Dolce (Debra),

I was so glad to know that you had good news from your MRI scan. You must be very relieved and it is no wonder you felt like celebrating a little. You try so very hard with everything in your daily life so you certainly deserve good news. Congratulations!

Everything went well at my check up, although we have only a physical one, but I think my oncologist knows at a touch if something is wrong. She said she was glad to see me doing so well and that she would see me next year.

I am breathing calmly this evening. I shall have a mammogram in October.

Thank you for your kind words and for all you do on this thread. It looks as though we had all better get eating Rich Lady peaches!

Fond thoughts,

Sylvia xxx

sylviaexmouthuk

Hello adagio,

Thank you for your kind words of support. They mean so much to  me and it seems to make all the difference, when you go for a check up, knowing that lovely people out there are thinking of you. You all mean so much to me and you have all enriched my life.

I am now counting the days until June 20th when I shall be 9 years since diagnosis. I can hardly believe it.

Take care,

Fond thoughts,

Sylvia xxxx.

sylviaexmouthuk

Hello linali (Lindsay),

It was nice to hear
from you and thank you for popping in to wish me good luck. It was
much appreciated. I was so relieved when I heard the words 'all seems
fine'. It is a relief because I know that we cannot take anything for
granted.

I am also glad of the
good news because I want it to inspire and motivate everyone who
posts and views. If I can do it I am sure everyone can do it. I
cannot believe almost nine years have gone by since that day in June
when I was first diagnosed. My life definitely changed that day and
even now I often talk about before I was diagnosed and after I was
diagnosed.

I am so glad that I
started this thread. I have met so many interesting people and I hope
that those who no longer post or view are alive and well and getting
on with their lives. If you hear from BernieEllen give her my best
wishes.

I hope all is well with
you and your family and that you will keep in touch because we need
your information and words of wisdom.

Have a good long
weekend.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Jackpot (Gill),

Thank you for popping
in and I am glad to say that I can give you the good news that you
were expecting. I was so glad to have that check up behind me.

What I could do with
this evening is a few hours of Karl Pilkington, but unfortunately I
think I have seen all that is available on the television, until I
can find on the television somewhere The Moaning of Life.

I hope all is well with
you and that you have a good long weekend and a good holiday.

Fond thoughts.

Sylvia xxxx

Jackpot

hi Sylvia 

That's great news, even when you feel fine it's always reassuring to be told everything is good...I'm all packed now and ready to go, can't tell you how much I'm looking forward to this holiday, 

Speak soon 

Gill 

InspiredbyDolce

Sylvia, congrats on your wonderful checkup!!  Delighted you got it done and now you can enjoy the weekend without any of this being on your mind!  

adagio

great news Sylvia - now you can breathe more easily for another few months!  Congratulations and again many thanks for all your support and information.

Normandee

Hello Sylvia

Just popped in to find the outcome of your check up - so glad it went well, just like I expected. Although we may feel like all is well there's nothing like the words of confirmation from those we trust in Surgery/Oncology to give us peace of mind.  Great news.

Love Norma xxx

sylviaexmouthuk

Hello Norma,

Thank you for popping
in to find out how I got on. Your support is much appreciated. It
feels good today that another check up is behind me.

I have been busy today
catching up on some household chores and doing some reading.

I thought you might be
interested to know that the book B is For Breast Cancer by Christine
Hamill arrived today and I have just been leafing through it. I am
sure that all of you posting and viewing would find this book very
interesting.

I am writing one of the
reviews at the front of the book. It is as follows.

“We know at Maggie's
that when you are first diagnosed with cancer, it can be a confusing
and overwhelming time. There is so much information to take in, on
everything from differing types of treatment and benefits to what is
best to eat. That is why B for Breast Cancer is such an important
book. It breaks down all the questions you may have into clear and
concise answers that are easy to read and not in the least bit
intimidating. We will certainly make sure there are copies of the
book in all our centres.” Laura Lee, Chief Executive, Maggie's
Cancer Caring Centres.

Under A, we have A is
for anxiety, A is for axilla, A is also for axillary node clearance
(ANC), A is for anger, A is for affairs (setting them in order), A is
for admission (to hospital), A is for age.

The book goes on like
this with comments under each heading from A to Z.

Christine Hamill was
diagnosed with breast cancer and wrote this book whilst having
treatment.

I like the comment at
the beginning of the book. It is as follows.

“If you were not a
worrier before being diagnosed with cancer, you will be afterwards.

Stay sane. Read this.
It helps to know you are not alone.

This is not a medical
guide.”

The introduction states
“Whose boob is it anyway?”

The book is serious but
there is a lot of humour in it as well.

I hope you have a good
weekend.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello everyone,

I just wanted to wish
everyone in the UK a relaxing Bank Holiday weekend. I am not sure
what goes on elsewhere this weekend.

I hope all is well with
apandy (Anne), big_leggy (Sandra), susaninicking, and Hero1967. We
have not heard from you in a while but hope you are just getting on
with your lives.

Carolben, I hope you
are still stable and that you will read the book I have just
mentioned.

Sam52, I hope all is
well and that you will be relaxing this weekend.

Maryna8 (Mary) I hope
you are recovering well from your last chemotherapy.

Take is easy everyone.

Fond thoughts.

Sylvia xxxx

susaninicking

Hi all, 

I'm here and reading along. Phew for you on the check-up Sylvia! Everyone still in the fight, keep it up!

At the risk of sounding hideously obnoxious, we are kind of on vacation again. Lucky for me the Seychelles were just the kick off! We have a couple of holiday houses in France and have been here several weeks getting things organized for the summer rentals. We squeeze in as much fun as possible while we are at it. It was such a lousy year last year being so stuck at home by blood tests, a poopy immune system, and then the chemo, that we are making up for it this year. I'm going home here and there between now and August but mostly I'll be hanging out here. One of my biggest friend supporters from last year is coming soon for a month in Europe so all I know to say is my poor poor husband! 

Here is a picture of us the other day after an hour of uphill climbing. I was happy to have been able to do it! A year ago I had just had my 2nd EC infusion and had just lost my hair. I am actually a fan of this new pixie haircut and am leaving it just like this, at least through the summer months. The dog is so cute but this is a bad shot of him! 

I have my first post-everything mammogram on the 19th. Already nervous. I have a couple of really creepy lumps in my "bad" breast....they have been checked, one has been checked twice, and radiology said hematomas or scar tissue. I surely hope this was accurate. The last radiologist was the no sense of humor guy who pinpointed my two original tumors so at least in 2012 he was right on the money! 

Take care ladies. I think of you all daily and everyone is in my prayers. 

Carolben

hi all, Adagio, thanks for the positive spin & I'm so glad to hear your clean bill of health! I'm really sorry to hear of your friends & your sister, that's really tough. I would be devastated if 1 of my sisters got cancer. I kinda feel like I'm willing to take it on the chin, let me do the cancer so they won't ever have to. Does that make sense. Big hugs.

There were 3 of us in town here, all diagnosed within a year of each other, all 3neg. One is clear after 2.5 years, I'm stage IV and the other woman died. So who can tell, each person is different.

Mary, happy to hear you're doing Taxotere after. Hope it'll be much easier.  I was told to think of the chemo as my friend, helping to fight the cancer, I didn't get it the first time round, but understand now. So, much as I dislike being on chemo, it is keeping my mets stable, & I'm so grateful for that, so I feel it's all worth it.  I'm serious about the yoga, the teacher has to keep putting me straight!! Lol

Sylvia, thanks for keeping me in mind re books. I've been reading Terry Pratchett (lovely escapism) & other fiction, and still reading The Emperor slowly in between. We do the Fri & Mon Easter, yes, Monday is now Family Day. A few of our public holidays have been renamed & half the population can't remember the new names! Re the Nutri Bullet, my nephew says he blends everything instead of juicing. He gave me some of his mixtures & says he adds water, where I'd put orange juice for taste. I haven't tried that yet, have been having a lot of nausea this cycle of Xeloda, and can't face the thought of blended veggies! I like to juice when I'm not getting veggies in, makes me feel virtuous! Like Debra, my blender does take strain with stuff like carrots and starts dancing!

Susan, here's hoping your first check up, post everything, will show all is clear, it is nerve wracking, I think it'll always be so, as Sylvia says, she still gets anxious for check ups, 8+ years later!  (Thinking of you for that, Sylvia)

I'm thin with & 1 miserable, empty, droopy 60 year old boob, & 1 flat side. When I wear a sports bra I look pretty much flat on both sides. Mostly I wear a sports bra with cups inside. I don't even bother with a little fillet, unless I feel like it. My best is to go bra-less & now that winter's coming I'll mostly do that. I wear about 6 layers in winter, I freeze!  It would be cool to have both sides flat, am not really interested in reconstruction. Let us know how you do in that area, Susan & Norma?

susaninicking

Hi Carolben!

I had 2 lumpectomies, no mastectomy tho there was early consideration.  I wanted both removed if they were going to remove one and the German doctor thought I was nuts. I would still be first in line to volunteer but that's just me. My boobs are dramatically different and if I was younger I would feel a repair would be necessary but at 58 it's not a huge deal. My cancer boob was smaller to begin with and after 2 biopsies and 2 lumpectomies the poor girl is just not the same. My husband said that it was cruel to think of a mastectomy after all the poor boob has been through! Maybe he has a point! 

Normandee

Hi Sylvia

Thank you for the information about the book, it sounds like a good read. I shall look out for it. In the blurb you quoted it states it 's not a medical book and I would like to read it as it seems it will be a familiar story of how we all feel after a cancer diagnosis from a person who has actually experienced it as opposed to a biased  account from someone who has all the medical knowledge but no experience. I laughed at the quote about being a worrier after cancer - I was a huge worrier before it all can you imagine the strain I endure on a daily basis!

Today has been hot, sunny and wonderful. Spring is everywhere - the starling chicks in the roof above my bedroom window are very noisy, and robins and bluetits are nesting in the back garden. I felt very emotional in my garden today when all I saw around me was beauty and I felt how lucky I am to still be here enjoying it all. Cancer has heightened my appreciation of the little, simple things and for that I am so grateful.

Fond regards

Norma

Normandee

Hello Carolben

I thought I would send you a quick reply to your question about mastectomy/reconstruction.  I have not heard any more from my Surgeon about my desire to have my other, healthy boob off. I think I may have a bit of a battle to achieve it, however I have accepted a request to be a case-study on why women want healthy boobs removed when not BCRA 1/2 carriers.  I have never wavered in my desire to have them both off. I have large boobs which I have always disliked. Just having one and nothing the other side looks ridiculous, and the awful plastic thing I put in my bra is horrid. The weight is considerable and I get shoulder pain from lugging it all around all day. I will let you know how I get on. I know Susan feels the same about reconstruction. (Susan - good luck with mammo!).

I am sorry you are feeling nauseous with the Xeloda, but glad that it is keeping everything stable for you. You have a wonderful, upbeat approach and when I read your stats at the end of your post and read 'love, courage and grace' I feel it really sums you up. Love and hugs to you Carolben,

Norma

sylviaexmouthuk

Hello Susan,

It was nice to hear
from you. Yes, I am glad my check up is behind me.

I was very interested
to know that you are in France and that you are getting ready for
your summer rentals. I do not blame you at all for having some fun
while getting your rental places ready and making up for the lousy
time you had last year. It sounds as though you are doing really well
and the photograph you posted is lovely.

I am very interested in
France and all things French and I was wondering which part of France
you are in at the moment. I am a French Honours graduate and a former
teacher of French as a second language. I spent a year in France
teaching as part of my four year course and then taught in France,
Morocco and England. The year I spent was in Corrèze
in the Massif Centrale and then I spent
three years teaching there. I also lived in Toulouse for a couple of
years. Are you in the part of France that borders on Germany? Have a
good time while you are there.

I do hope all goes well
on May 19^th when you have your mammogram. I shall have to
go for one in October and I do hate going.

Keep in touch.

Fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Carolben,

I was interested in
what you said about the three women diagnosed with breast cancer with
negative receptors and that one was 2.5 years past diagnosis, one had
died, and you were stage IV. We can say that you all had the negative
receptors in common, but I was wondering what differences you have or
had that may be making a difference to what is happening. Did you all
have the same kind of breast cancer or were they different? What
about general state of health on diagnosis, age etc.?

I was interested to
know that you were reading a book by Terry Pratchett. He has been a
lot in the news recently because of his Alzheimer's disease.

I have decided to
re-read The Emperor of all Maladies because it is some time ago that
I read it. To give myself a challenge and refresh my French, I am
going to read it in French. I hope to start it sometime soon, but the
days just seem to disappear.

Be sure to read B is
for Breast Cancer. I am sure you will enjoy it and it is always
useful to read books by people who have been through breast cancer
treatment. I find I have not enough hours in the day to read all that
I want to read.

I have been picking up
on the public holidays in South Africa. They are always printed on my
diary along with holidays in the UK, USA, Canada, etc. I saw that
Monday April 21^st was Family day in South Africa, whereas
in the UK it is still called Easter Monday, and then I saw that April
28^th was a public holiday in South Africa but it had no
special name. May 1^st was Workers' Day in South Africa and
a public holiday and rightly so. For some reason, in this country,
May 1^st is no longer a holiday, but we do have a public
holiday today, the first Monday of the month, May 5^th, and
it is called May Day in England, Wales, Northern Ireland and the
Republic of Ireland, but it is called Spring Bank Holiday in Scotland
and Cinco de Mayo in the USA.

I do not blend or juice
anything. I have thought about it and decided it is best just to eat
a great variety of fruit and vegetables. Both blending and juicing is
a form of processing and even with water to dilute everything, I
think it is too concentrated a mixture and could end up giving you
too high a dose of sugar. That is why I never drink fruit juices.

I think how we react to
life after mastectomies and lumpectomies is very personal. I am not
bothered that much about my missing right breast. I wear the same bra
that I wore before, and just sew a flap on the right side (I get them
from Amoena) and pop my lightweight prosthesis in it. Removing my
left breast in order to prevent breast cancer would not be for me.
That is purely personal. It was the same for reconstruction, that was
not for me and would never be for me. As little surgery as possible
is my motto. You never know what you are stirring up. My biggest fear
in all of my treatment was going into hospital. I dreaded the thought
of five days away from home, but I somehow got through it by reading
a good book.

I have just looked at
the first entry in the B is for Breast Cancer book and have found A
is for Anxiety. “Cancer and anxiety go together like New Year's Eve
and Auld Lang Syne, but without the drunken snogging. They are best
friends, so you better get used to it!”

The anxiety section
goes on for three and a half pages, so you can see what an important
part anxiety plays during the cancer journey. All of us are only too
aware of that. The last line of this section says “If you are not
feeling anxiety, go straight to D for Denial”.

I do hope the nausea
will subside and that all will continue to go well for you. Do you
have strong ginger tea with grated ginger root in it? I found it very
useful. Ginger capsules are very good too.

Sending fond thoughts.

Sylvia xxxx

sylviaexmouthuk

Hello Norma,

I hope you manage to find a copy of B is for Breast Cancer as I am sure it is a book that will give all of us endless discussions. I also think it is important to read books written by patients. There is definitely a lot of humour in  this book. Like you I was a worrier before cancer and I am still a worrier, but can switch off.

I think we shall all feel better as summer approaches and we can be out and about a lot more. I also can identify with appreciating all the little things a lot more.

I hope you have a good day today and let us hope May will bring good weather.

Fond thoughts,

Sylvia xxx