Calling all triple negative breast cancer patients in the UK
Comments
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Hi everyone,
I just wanted to say thank you and clearly state how thankful I am for this forum as well as some others on this site that helped me along through the last year. So grateful on so many levels. Happy Thanksgiving!
I could not be happier that my treatment is finishing tomorrow, Thanksgiving weekend. I'm an absolute emotional wreck with joy. I cry just about constantly. Anything I think of makes me tear up and sniff. I'm just so thankful for everyone who has helped me, all the fabulous medical professionals here in Germany, my friends, my family, everyone who stepped up. And thank you excellent German health insurance. Everything imaginable is available at no cost. Socialized medicine I love you.
One little story I want to share. I read about radiation centers in the states having bells to ring when you finish your treatment. Having never had cancer before this was news to me but something I thought was brilliant. My whole experience has been one of complete support for each other through chemo, rads, biopsies, everything, so why not have the opportunity to cheer for your colleagues at the end of the journey? About 2 weeks ago I asked my RO where was the bell? No bell of course. I explained it all, she loved it, talked to the clinic director who also loved it, and they were willing to put up a bell. I said I would contribute the bell. It arrived yesterday and I delivered it today when I went for radiation. My favorite tech and the doctor came out to the waiting room to discuss where to hang it. With any luck it will be on the wall tomorrow and I'll be the first to get to ring it. They will have to hang a sign in German, English and Russian as there are quite a few Russians who come here for treatment. I wrote an English suggestion for the sign and it went like this:
"On your last day here you may very well have crossed the finish line on a race that is longer than any marathon. If you would like, ring the bell in celebration of your triumph and accomplishment."
I just hope the Germans will ring! I will be ordering the people to do it on their last days as I leave radiation I hope forever! I will likely be bawling my eyes out and the photos will be bad but what the heck.
And in other lovely news, I just got a 5 minute haircut! I was getting shaggy over and around the ears so now I'm at least sheared for tomorrow's celebration! I think there will be a lot of photos which I'll post on my Caring Bridge site and post a link here if anyone wants to look. The boob cake promises to be fabulous!0 -
hi adagio
Your right taxotere is a harsh drug, infact I was told it was probably the most toxic of all chemo drugs so you can understand the side affects when you hear that,
I'm glad the reduction helped you and hope it does the same for me, I have my pain relief ready and at least I know what to expect this time, the pain came as a shock as they don't tell you what to expect and just wait to see what you get, but I'm on the home straight now and at least I can see the end so here's hoping to a side affect free couple of weeks
Take care
Jackpot0 -
hi Susan
Well done on finishing your treatment tomorrow and I hope the bells up so you can be the first to ring it, and your right about the support these forums bring to people, I can't wait to join you on the finishing line and ring my own bell
Take care
Jackpot (gill)0 -
hi peterandliz
That's a really sad story and makes you put your own problems into perspective, poor little lad only 14 and what a brave mum being able to talk about it like that, I think I would of just fell apart, please let us know what happens and if anything changes, miracles do happen and I hope and pay one happens here,
Oh by the way I think me and liz are on the same Facebook group (lulus triple neg closed group)
Take care
Jackpot (gill)0 -
Hello peterandliz
Raymond and I have just
read the link that you posted and find it impossible to find the
words to express the sadness that we feel on reading such a tragic
story.There can be nothing
more difficult in life than for a parent to have to face the death of
a child. It is not the natural order of things. My own parents lost
their first-born child, a boy of just 10, from rheumatic fever with
complications (endocarditis, inflammation of the lining of the
heart). I do not think they ever recovered from it.It is good that you
have been able to remain strong and detached emotionally to get Liz
through her cancer journey. That must have been very difficult.Thinking of you, Liz
and your son and wishing you well.Fond thoughts.
Sylvia
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Hello Jackpot (Gill)
I am so happy for you
that chemotherapy number five is behind you. I do hope everything
will go well for you this time and that you will not have the pain
you experienced last time, now that you have been given a reduced
dose. I do hope you will not need the oral morphine and you are right
to use it sparingly and if only absolutely necessary.The pain you had from
your previous dose sounds horrendous. It just goes to show that when
we start these treatments we have a list in our head of possible side
effects, but we just do not know which ones will affect us. It makes
me realise I got off very lightly through chemotherapy and
radiotherapy, but that does not mean if I had to go through it again
it would not be more difficult. This is a thought that remains with
me eight and a half years since diagnosis.I was glad to know that
the ice packs have been of help and that you have not had and hand
and feet problems so far. I find the uncomfortable feeling in the
soles of my feet and in my toes sometimes bothers me. I would love to
be able to solve the problem.It is good that you
have no mouth problems as a lot of women seem to get these problems,
so perhaps women should be proactive and use a rinse such as
bicarbonate of soda with warm water as a preventive.It is really good that
you have not had to go into hospital with low red or white blood cell
problems.We shall all be
thinking of you on December 18th when you finish
chemotherapy. That is about the best Christmas present you can have.
Are you going to start a bell-ringing tradition at your hospital?Thinking of you and
wishing you well.Sylvia xxxx
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Hello Susan
Happy Thanksgiving.
As an American in
Germany, how do you spend Thanksgiving Day? Do you have a group of
you there and do you get together? I remember Thanksgiving Day in
Canada and how enjoyable it was. Will you be having Black Friday and
hitting the shops for some retail therapy. Why is it called Black
Friday? If you are hitting the plastic like there is no tomorrow,
should it not be Red Friday?We shall all be
thinking of you tomorrow, Friday November 29th when you
finish radiotherapy and this brings your treatment to an end.
Congratulations.Thank you for your kind
words about the forum and I am so glad we have been of help and
comfort to you. I hope you will stay in touch.May I join you in
expressing my love also for socialised medicine. I do not know where
we would be in this country without it. The NHS here is under a lot
of pressure because of government cuts and I think all medical staff
are having a difficult time, but somehow the system keeps going. This
winter could prove very difficult with all the cuts. There are a lot
of elderly people in hospital wards who should be in care, but there
have been cutbacks there too.What a good idea about
having bells ring when you finish treatment. I did not know this was
happening in the US and I cannot remember having read about it on
other threads. Well done for getting a bell installed at your centre.
I hope it rings out in joy tomorrow!It is good to know that
you will be the first to get to ring it.I was surprised to know
that you have quite few Russians coming to the centre for treatment.
Do they live in Germany? We hear quite a lot in the UK about health
tourists. They come here apparently, get treatment under the NHS, to
which they are not entitled, and then leave without paying. I was
brought up with a National Health Card with a number that we used to
have to present, and then it was done away with, which I think was
not right. In fact, I insisted on having a new National Health Card
and one for my husband, even though I was told it was not needed. I
felt I wanted one and can be very stubborn and insistent when I set
my mind to it.I do like the words you
have composed to go with the bell.I bet you feel much
better after that five minute haircut. It does get pretty shaggy.
When mine first started to grow back it was black and so curly and
grew in an Afro style, but then settled down.Please post a link so
that we can all see your photographs.What is the Caring
Bridge site? There is so much happening with social networking on the
internet. Facebook and twitter are massive. I still cannot fathom out
how many private groups there are about TNBC there are on Facebook,
but somehow it would be useful if we could all link up to share our
experiences.Take care and enjoy to
the full Thanksgiving and your end of a journey celebrations.Fond thoughts.
Sylvia xxxx
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Hello Apandy (Anne),
and big_leggy (Sandra)I was just wondering
how you two are getting on with your chemotherapy treatments. How
many have you had now and how many do you have to go? I do hope all
is going well.To Sandra, happy St
Andrew's day on Saturday November 30th. Will you be doing
anything special? Do you have any strong opinions about the
referendum on Scottish Independence?Thinking of you both.
Best wishes.
Sylvia xxxx
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Hello linali (Lindsay)
I do hope all is well
with you and your family. I did answer your last PM on the thread. I
hope you saw it.Hoping to hear from
you.Fond thoughts.
Sylvia xxxx
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Hello Gill,
I forgot to say that I was interested to know that you had been for genetic testing, but what a long wait you have before you get the results.
I was wondering why you have been told you are high risk. Is it because of the TNBC status or because of your age? The BRCA genes are often more common in younger women. What is your age?
Thinking of you,
Sylvia xxxx
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hi Sylvia
They did send for genetic testing because of my tnbc status combined with my age ( I'm 45) and I was told I was high risk because my maternal aunty got breast cancer at 37 but it was 17 years ago so we don't know her receptor status but her son got prostrate cancer at 40 a couple of years ago suggesting a brca link because breast ovarian and prostrate cancers are all brca linked, also my mum had breast cancer as a secondary illness when she passed last year,
I'm still hopeful of it being negative though, the decision ill be given to make apparently if positive is a double mastectomy and ovaries removed to reduce the risk of recurrence and the boys would have to be tested for the faulty gene to see if they are high risk for prostrate cancer which is what upset me most as they would have to be monitored regular as there would be no preventive surgery for them, the guilt I've gone through the last couple of weeks feeling I've could of passed this rubbish on to them has been terribly upsetting, but even if I'm positive there's still a 50-50 chance they will be negative so fingers crossed
Take care
Gill0 -
jackpot - I totally understand about the pain from taxol. I felt like a human target being hit by rocks from a sling shot - and it ricocheted all over the body, but some of the worse pains were in my in my legs, shoulders, arms and hips. I shudder to think of that pain now and wonder how I got through it, but I did. Take as much pain meds as you need if that is what helps - I was always reluctant to take further drugs on top of the chemo, but I did just to survive. Here's hoping this treatment will not be so bad for you - the end is in sight! Yeah!!0 -
hi adagio
The end is in sight and I've got both eyes fixed firmly on it
I'm not normally one for taking meds, I've still got bags of drugs and steroids here from when I was on FEC opting for ginger and more natural remedies to help me through but I most definitely will be taking as much pain meds as needed there's no way I could go through that pain again
Love your sling shot description by the way much better than my hit by a car ill be using that in future lol
Take care
Jackpot (gill)0 -
Hi Gill,
Yes it's Liz on the Triple negative group. She only posts on Facebook groups, and then not very often.
Peter0 -
Another clip of Steve Evans when he was invited back to BBC Breakfast a few days ago. He talks about the power of Twitter and the comfort he gets from people on it.
http://www.youtube.com/watch?v=-PHuR4NW3ps
Peter0 -
Hi Sylvia,
Yes thanks for the reply to my PM. I must apologise for not acknowledging it.
It has been a busy couple of weeks and just to give a short post now, the breast nurse got back to me and I will be seeing the breast surgeon over the next few weeks and then possibly the oncologist.
Getting ready for Oskar coming and lots to do.
Good luck to all of those in treatment and congrats to those who are coming to the end of theirs.0 -
Hi Sylvia
I have been visiting a friend in Ferndown, Dorset most of this week and have had a lovely time. His wife died of breast cancer 10 years ago. He doesn't know what type but I suspect it was triple negative as I remember him saying that hormone based drugs would not help. Pearl also had a Portuguese father so the southern European connection fits.
I notice some postings about the pain of Taco are. Janette used to say it was like being hit by a truck and I don't recall anything giving relief.
Michael0 -
Hi All
I had my third FEC on Wednesday and am feeling better than after no 2, primarily because I am not having problems with indigestion like I had last time, due to having appropriate meds. I am tired, and have the usual side effects, like less appetite, food and drink tasting odd, and some nausea if I haven't eaten, but otherwise coping. I am also finding that the neutrophil injections make my legs ache a bit.
I'm glad to hear your last Tax is on 18th Dec, jackpot. Interestingly, that is the day I start mine. Having seen the comments on here, and elsewhere, I am not looking forward to it. I've only read bad stuff about it on forums, whereas at the Hospital they say most people do better on it than FEC. It's hard to know what to expect.
Best wishes everyone,
Anne x0 -
hi Anne
Glad to hear your half way through and fec hasn't been too bad for you, I hope I havnt scared you with my experience with tax, they did say I got the high end of side affects and most don't suffer this badly,
But even for me they have taken care of me....re side affects....I'm tax 2 day 2 and so far so good,
They have sent me home with excellent pain meds including morphine and I think this time is going to be a lot more manageable than the last time.....I hope so anyway.....one massive plus when you go onto tax is no nausea at all
Good luck with the rest of your treatment and would be interested to know how you get on with tax when you start it on the 18th dec
Take care
Jackpot (gill)0 -
Even though I'm not posting much, I'm reading and pulling for all of you who are doing chemo. Keep up the fight ladies!
Today was my last day of treatment. I have never cried so much in one day in my life. So emotional!
Once I get my Caring Bridge site up to date with the photos and such I'll post the link. It has been one of the best days of my life. To cap it off we went to hear an Austrian Orchestra perform The Messiah. A great ending to the day. We did get super seriously stuck in Munich, missed the last train to where our car was parked and we were absolute losers about finding a cab, and my husband is German! Finally finally figured it out, laughing all the way. When the choir sang that last Amen we fist bumped and said our own Amen as well.
There needs to be a thread on this site to tell the last day of treatment stories! Someone even gave me some holy water from Lourdes!0 -
susanicking - big congratulations on completing treatment - it is indeed an emotional day! Now to move onward and put treatments behind you - now your body can truly start to heal and recover. Good luck to you. Handel's Messiah sounds like a perfect ending to your day - Amen!!0 -
Hello Jackpot (Gill)
I can understand why
you were sent for genetic testing. You are young and family members
have also had cancer at a young age and your mum had breast cancer. I
hope you will get good results from the genetic testing. I cannot
understand why it takes so long to get the results.Remember that breast
cancer can go through the male line as well. Has your father or any
on his side had cancer?I do hope you will be
negative for these genes. As we know, it does not always affect every
member. A friend of mine is BRCA positive, her sister was and
actually died of breast cancer. She has two brothers who are but
another one who is not. Strangely the brother who is not has a
different blood group to the rest of them. My friend had a preventive
double mastectomy when her sister died, but it is only this year that
the family got tested genetically and my friend is now going to have
a preventive removal of the ovaries.If your boys have to be
tested, look at it as a positive thing, as they will be able to be
monitored. You must not feel guilty about anything.Keep looking forward
and focus on your chemotherapy joutney coming to an end on December
18th.Thinking of you.
Sylvia xxxx
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Hello Jackpot (Gill)
againI was just popping in
to say that remember with the taxane group of drugs, two different
drugs are used. Remember you are having docetaxel (Taxotere) and some
others are having paclitaxel (Taxol). I think the Taxol may be used
more often in North America. They come from two different kinds of
yew trees, one is native to North America, and one to Europe. My
oncologist told me she had chosen Taxotere for me because it was less
harmful on the heart.Like you, I took
natural remedies during my treatment whenever possible. I did not
take most of the drugs given out as preventives. I took only the few
drugs given for the first two or three days after chemotherapy.Thinking of you.
Sylvia xxxx
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Hello peterandliz
Thank you for the link
to Steve Evans. I shall look at it a bit later on.I hope you have a good
weekend.Sylvia.
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Hello linali (Lindsay)
It was nice to hear
from you. I know you are very busy, so I appreciate your short post
all the more.I was so glad to know
that you will be seeing the breast surgeon over the next few weeks.
Make sure they keep their word, especially with Christmas coming up.
Please make sure you see the oncologist as well, as the oncologist is
the real cancer expert.Have a good weekend.
Enjoy your time with Oskar.Fond thoughts.
Sylvia xxxx
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Hello Michael
It was nice to hear
from you and good to know that you have been having a lovely time in
Ferndown in Dorset.I was interested to
know that your friend's wife died of breast cancer ten years ago and
that it was probably triple negative. I work things out on the same
basis by asking whether people are having hormonal treatment after
standard treatment finishes. Age is also a good indicator, as TNBC
does affect a lot of younger women.I was interested to
know that Pearl had a Portuguese father, so, as you say, this fits
the southern European connection. It may well be that her cancer went
through the paternal line.It looks as though pain
is quite common with the two taxane group of drugs, paclitaxel and
docetaxel, Taxol and Taxotere.I suppose it is the
price to be paid for bringing the disease into remission.I saw in the Daily
Express this week that there was a short article promoting statins to
prevent breast cancer. It was somehow connecting cholesterol level to
the development of breast cancer. I do not know what research has
been going on, but I would never take statins. It seems to be being
promoted as another cure-all pill, despite all its nasty side
effects. I sometimes get the impression that doctors will not be
satisfied until they have everybody on pills!!!I was reading the
latest edition of the Radio Times and saw that on the back page (170)
there was a question and answer feature with Ian McShane. I used to
love watching him in Lovejoy. I noticed there a mention about his
wife, the American actress Gwen Humble, and picked up on the fact
that she had had breast cancer twenty years ago. I do not know if she
is still alive.I was wondering what is
happening with you and your treatment. are you still receiving some
or are you in a rest period.I now have a family
member settled in Holywood near Belfast. He sent a photograph of the
beach and it looked lovely.Fond thoughts.
Sylvia
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Hello apandy (Anne)
I was glad to know that
you are feeling better after your third FEC on Wednesday than you
felt on the two other occasions. From other posts, I think that
aching legs from neutrophil injections may be fairly common.We shall all be
thinking of you on December 18th as you start your
docetaxel (Taxotere) chemotherapy. Do not be put off by how other
people are affected with this drug. It may not affect you in the same
way. Everyone is different and it is true that some may find FEC more
difficult, especially the E epirubicin. Try not to expect anything.
Tell yourself you are going to be fine and that if you do have side
effects you will deal with them. We shall all support you.It looks as though
December 18th is building an important day.Thinking of you.
Sylvia xxxx
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Hello Susan
I was glad to know that
you finished your treatment. You did not say whether you rang the
bell!We look forward to the
link and remember we are all quite happy to have you post your
photographs here. It is a long time since anyone posted any
photographs, so please feel free.I was glad to know that
you have had a really great day. I can imagine how emotional you must
have felt at listening to such great music as the Messiah on such an
emotional day for you. I was glad you got back home safely.Everyone is free to
post the details of how they felt on the last day of treatment. there
are so many threads that I feel it gets confusing and I am trying to
make this thread as compact but detailed as possible, so that we can
cover diagnosis, treatment and tests, surgery, chemotherapy,
radiotherapy, post-treatment check ups, new tumours, recurrence,
metastases, alternative and complementary therapies, tips, ups and
downs. We are interested in every aspect of the cancer journey. I
know that when I finished my radiotherapy, which was in hot July
2006, I felt strange and empty. I then settled into a routine of
check ups with all the anxiety they bring. Even now I feel nervous
when I think my oncology appointment in May 2014. I can never take
anything for granted.Well done, Susan, but
keep in touch. Others on the thread will need you to motivate,
inspire, encourage and comfort.Fond thoughts.
Sylvia xxxx
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Hello everyone
Thank you for all your
effort during the past week. I hope all of you have a good weekend
and make a good start to December.Best wishes.
Sylvia xxxx
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Oh ya, I rang that bell! I did not realize you could upload pictures here, a mistake for having told me!
The moment I stepped out of radiation for the last time!0
