Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sylvia!
Hope you had a nice Easter, we are having very nice weather so that is a plus. Very changeable this time of year, we just hope for no more hard freezes.
My blood work taken last week seemed to be in order, they were satisfied with it at the infusion center. I of course wanted it to be even better, because I am in a hurry to feel stronger before I have my next chemo! But I am better, yesterday worked on some flower beds and puttered around inside and outside and hope to do more today.
My husband's problems continue; he had to have a surgery on his arm last week. What should be a minor surgery is not minor for him, he ended up being in the hospital for another 4 nights. He is home again and feeling much better, tomorrow he has another doc appt. I am glad I am feeling well enough to take him.
I thought Dolce had a very wise post above, about the number of survivors of TNBC. I would guess most people do give up going to the forums once their lives become busy and "normal" again. What shocks and saddens me also is the number of people I meet and hear of who have all kinds of cancer! All kinds just in my personal experience; esophageal, colon, stomach, liver, thyroid, skin and of course breast is very common. I wonder sometimes if everyone refused the chemo if the drug companies would be more inclined to come up with something better. And I do hope I live long enough to hear a definitive theory of why there is so much of this disease around. Maybe it will never be pinned down to one thing, probably a collection of things.
I see that you are having your annual check-up with oncologist in May. How do they check you, do you have x-rays, pet scans, physical? I do hope and pray that your visit is a good one, with nothing but good news.
Talk to you soon, Mary
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Hello Michael,
I was glad to know that you had a good holiday weekend. I think we all need these days in order to switch off. It sounds as though you are in great company with Alex and your sweet dog.
I have just been looking through the latest link you sent and found so much of that information interesting,
I learnt from one of them that in the lab they have discovered the osteoporosis drug raloxifen killed human breast cells that are triple negative.
I saw also that smoking is being linked to all kinds of breast cancer. That does not surprise me.
I do hope every one will read these links and post some comments. We do need to hear views from other people.
It rained all day yesterday, but is a bit better today.
Warm wishes,
Sylvia.
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Hello Mary
Thank you for your
post. We do not do anything special for Easter, but the four day
holiday weekend is a nice break. I did catch up on some reading and
have been reading a recently published non-fiction book entitled The
People, The Rise and Fall of the Working Class 1910-2010, by Selina
Todd. It is a fascinating account of the lives of ordinary people in
the UK over the past one hundred years. It is so interesting. It
shows what a class-ridden society and an unequal society the UK is.
Despite all the social progress, so much still applies today and all
the power and money rests with a small percentage of the people.I hope you had an
enjoyable time on Easter Sunday. According to my diary, in the USA,
you did not have Friday and Monday off. The diary of my husband,
Raymond, says you did have Friday off!! Which part of the States are
you in?Here, on Good Friday,
it is traditional to have hot cross buns and chocolate Easter eggs on
Easter Sunday.I was glad to know that
all your blood work was in order. It sounds as though you are feeling
better this time around and it probably did you a lot of good to do
some work on your flowerbeds. Just make sure you do not overdo
things.I was so sorry to read
that your husband is having problems. All this must be very difficult
for both of you. What is wrong with his arm? I do hope he will make
good progress. It is fortunate that you are well enough to take him
to his appointments, but please remember to take it easy.It is true that a lot
of people leave the threads once they have got through their
treatment and want to put everything behind them and get on with
their lives. However, we do need people to stay on the threads
post-treatment, otherwise the threads will disappear. There have been
loads of people on this thread and if I look back to the first few
pages I cannot help but wonder who has survived and who has not. It
would be nice if people let us know when they decide to sign off and
get on with their lives. When they just disappear from the thread you
cannot help wondering what has happened. We need people to stay on to
support and motivate the newly-diagnosed, even though there is more
and more information available to them.It is true that there
are so many people being diagnosed with all kinds of cancer and there
is more emphasis on treatment than prevention. The most common
cancers are breast, prostate, lung and colon. We have to be aware
that drug companies are making huge profits out of all these
chemotherapy drugs etc. and so they are motivated to keep on
producing more drugs and more uses for the drugs they have. I get the
impression they come up with a drug and then experiment on how many
uses they can find for it. Of course, all these drugs are highly
toxic, have serious side effects and there is always a magic pill for
the side effects, and more pills for the side effects of these. There
is no profit in prevention. That is why I think you have to try to
take care of yourself and do all you can to keep fit and healthy and
hope for the best. I think the Western lifestyle is a risk factor,
not to mention the poisons in our industrial environment.
Chemotherapy drugs have been around for a long time and I can see no
end in sight. I think that cancer has multi-causes and is complicated
because of all the faulty genes that seem to come into play and are
constantly mutating. I think in the modern age that our immune system
has been so compromised that it is not working to full capacity.For my annual check up
it is just a physical one. I have not had any scans since before and
after diagnosis, when I had CAT scans and bone nucleide scans. I have
had mammograms every two years since diagnosis. The physical
examination is really examining the area of the mastectomy and the
other breast. For the area of the mastectomy the oncologist told me
they are looking for everything to be smooth and of course in the
healthy breast for lumps, swelling and inverted nipple. My oncologist
also examines under the arms and all around the neck area looking for
any swelling of the lymph nodes. I do get very panicky before the
appointment. My oncologist is very calm and sympathetic and she
usually has a talk and asks me how I have been.What is the date of
your next appointment? Please let us know.Sending fond thoughts.
Sylvia xxxx
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Good Morning to everyone,
Happy St Georges Day to those of you in England.
As usual I have been reading all of the information and whilst I am logging in I see on the news that a drug for breast cancer is to be denied to patients because of costs. I am not sure of the background to this but once again very scary when money influences life maintaining drugs.
I have had a busy Easter and am now trying to catch up in the garden and house.I hope that everyone had a restful and enjoyable Easter with no bad side effects.
We had Oskar for 12 days and Leigh was home for her birthday. Oskar and I baked a chocolate cake. It was a milestone,the first birthday that Leigh presented as female at home and the first on female hormones.We spread it out over 2 days and shopped for shoes and clothes.We met a particularly helpful girl in Evans who chatted and advised Leigh as woman to woman. As Leigh says it is like our own little reality show when we shop as Leigh is 6 feet tall but I think that people are now more accepting of trans gender.We still get stares and comments but it is getting better and I am so proud of how Leigh is managing this and the Aspergers.
Jackpot,
I also am heading to Kusadasi but it will be on 14th June. When I was diagnosed in 2010 a very close friend made me promise that when I was over the treatment ....I would go to Turkey with her and her daughter. Her brother runs a hotel there and they go every year. I had never been able to keep that promise mainly because they usually go in July which is too hot for me. I never was someone who like the sun or heat. Long story short.....I was given money as a retirement gift and they changed their holiday date to June so at last I can keep my promise. The flights to Turkey are quite expensive from Ireland but it will be worth it as I always wanted to see Ephesus.
I haven't been over to the centre as I have been busy and it is the Easter break but I have started an 8 week course in Ennis -women and leadership.It has a diverse mix of people and has stuff that I have done before but I look at it differently now.
Damian was in hospital for his check up. Usually the consultant tells him all is OK but this time he has sent biopsies and swabs off. the results will take 4 weeks and so fingers crossed that all will be well.
Sylvia ,
The book that you are reading sounds interesting. I read a lot but over the past years I tend to read novels as a form of escapism.I do like mysteries and crime books.I think that like everyone I have so many ups and downs in my life that I love to become immersed in a world that is frivolous and exciting.
On side effects of treatments, the worst one for me, apart from the fatigue -was the sore throat . I would recommend that anyone on FEC drink a lot of iced water whilst getting the chemo and gargle with salt if the throat is sore.. Also some glacier fruits are handy to keep your mouth moist.
Thinking of everyone especially those in treatment.
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Hi Sylvia!
My next chemo is April 30. I am one week away so I am feeling good; although I did overdo it the other day working outside. You were right, and it is taking a while to get over that. I always have to learn the hard way!
As an outsider, I have always found the class system in UK interesting. It seems as if it was very hard, if not impossible, to move up and out of the class one was in. I find "Downton Abbey" a lot of fun to watch, but it was probably not as much fun if you really were the footman who wanted to become the butler who knew that was as far as he could go. Or the book by E.M. Forster, "Howard's End" is a good illustration of class difference. Here there is a lot of political blather about the "middle class" but it's very changeable and has to do with economics, not birth. You don't hear much about the "upper class" though, or the "lower class". If you do, it's usually about money.
The Friday before Easter most people around here work half a day. And on Easter Monday it is back to a normal workday. Easter is a family day, people go to church and then have family groups get together to eat and the kids look for hidden Easter eggs that have been dyed. They are usually hidden in the yard. When I was a child they hid them in the house, I assume because if they had put them outside one of the farm animals or dogs would have eaten them! A baked ham is usually the star of the Easter main meal, and all the trimmings. We did not partake of all that this year, since neither of us was feeling up to par.
My husband had a shunt put in his arm. It is so he can have kidney dialysis when the doctor proclaims it is time. It has to be in for 3 months before it can be used, so she wanted it there and ready to go. He has been on the brink of needing dialysis twice that I am aware of. Right now he is holding his own, we are hoping to put it off as long as possible. Although the docs say he will probably feel a lot better when he is having it done.
I'm sorry you are dreading your next check-up. I hope it is non-eventful and quick and all is clear, and you can put it out of your mind for a while. I'm glad you have a kind and sympathetic doctor. I am going to have to change docs, and the one I am thinking of changing to is a woman. She is very blunt and seems very knowledgable, but doesn't seem very empathetic. There is still another doc I am going to find out about before I make up my mind; because I do think the emotional aspect is important too.
All for now, I will talk to you soon!
Mary
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Hello Sylvia
Just thought I would tell you about a rather strange, very unfortunate thing that has happened to a lady I know who I am supporting through her breast cancer diagnosis. She went for her first chemo quite happily as I had briefed her on what to expect etc. She was just having her first infusion of Epirubicin directly into a vein above her right wrist when almost immediately her arm started to turn very red, started to swell and felt hot. The Chemo Nurse immediately stopped the infusion and called for Doctors. It turns out that the Chemo had seeped into the tissue around the vein into her arm rather than travelling through her circulatory system. Apparently this has never happened before in our local hospitals very busy cancer wing. It is a medical emergency and all hell broke loose - my poor friend was quite distraught as the Doctor's were desperately making phone calls hunting down an antidote! The antidote was eventually tracked down and injected into her right arm and she was told the 1 injection of antidote cost £6000!
I saw my friend this week and she is now under a Plastic Surgeon who may have to do skin grafts. Her arm flesh is rock hard (like a brick), very discoloured all over and extremely uncomfortable. It almost looks burnt. I felt so sorry for her, her very first chemo and that happens. Turns out her veins have all collapsed and broken down in her arm. She has now had a pick line put in and the Oncologist has assured her Chemo will go ahead as it was not an allergy she experienced but a natural reaction of skin tissue to the poison seeping through it. Gosh, just makes you realise what a toxic cocktail they give us - they really do try to almost kill us with the stuff!
I will let you know how she gets on. Apparently she is being treated like royalty up at the hospital and everybody knows her as the lady "with the arm". It is an extremely rare event, don't want to worry anyone approaching treatment, and the Hospital have now stopped infusing through veins above the wrist and now use pick lines across the board. At £6000 a shot of antidote they cannot have that happen again!
I think you have a check up approaching? Do hope all goes well, I know like me you get nervous even though you are so far out from diagnosis, so understandable.
Fond thoughts
Norma xxxx
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Hello linali (Lindsay)
It was nice to hear
from you and to know that you are keeping up with all the posts. I
have also been following the news about this new drug for breast
cancer that it is to be denied on the NHS in England because of cost.
You are dead right that denying drugs because of costs is completely
unfair and immoral and will allow the wealthy to pay for the drugs
and prolong wealthy peoples lives but not others! As the saying goes,
money speaks.I heard news about this
drug on the radio yesterday and then there was a long feature
interview on Channel 4 news with a specific patient who has been
getting the drug on a trial and is doing well. She will not be
allowed to continue on the drug because the trial is over. The name
of the drug is Kadcyla and is by Roche. The oncologist concerned with
this patient and drug took part in the interview, as did the
representative from NICE. NICE stands for the National Institute for
Clinical Excellence in England and Wales. As for Scotland it does not
always come under the same regulations as these two. I am not sure
what goes on in Northern Ireland.I tried to take a few
notes while watching and as I understand it this drug costs £90,000
per patient per year. Apparently 100mg costs £1,600. The drug
prolongs life for up to six months. By the way, the oncologist
interviewed was Professor Paul Ellis but I cannot remember at which
hospital he works. This has better side effects. I am not sure what
this means!This drug is for use on
breast cancer patients who have run out of options. There is a
special cancer drug fund that the government brought in but it is due
to finish in 2016 and the money will soon run out with costly drugs
like this.I cannot see the
justification for this horrendous cost. What is the point of research
spending loads of money to come up with drugs that are too expensive
for general uses? The drug companies are concerned only with making
money. We shall never have a fair and just world until countries
become more equal and wealth and power is no longer in the hands of
the privileged few.It sounds as though you
did have a busy Easter, but it must have been nice to have Oskar and
Leigh at home. I do hope all will continue to go well with Leigh.I was interested to
read that you have started an eight week course on women and
leadership. I shall be interested to know all about it.I do hope that all will
go well with Damien and that he will have good results from his
biopsies and swabs. We all know what it is like waiting for results.The book that I am
reading is called The People – The Rise and Fall of the Working
Class 1910-2010, by Selina Todd. I am completely absorbed in it. I
have just got to the chapter where the Labour Party under Clement
Atlee has been elected in the 1945 general election and are bringing
in huge changes, such as the National Health Service (NHS) in 1948.
This chapter covers the years from 1945 to 1951.I used to read a lot of
fiction and had particular authors whose work I used to follow, such
as Martin Amis, Julian Barnes, Margaret Attwood and Susan Hill, but
for some years now I find I cannot get absorbed in fiction. Recently
I bought Life After Life by Kate Atkinson, but could not get into it.
It is interesting and is about the different pathways we can find
ourselves on in life. It is very much a series of 'what ifs'. Raymond
is reading it at the moment.I have recently read
the autobiography by Alan Johnson. This book entitled This Boy
concentrates on his childhood. I read it from cover to cover and
could not believe the hardship of his childhood and how much his
sister looked out for him after the death of their mother. It was
also full of information about this country and especially London, as
it used to be. I could identify with a lot of it.Thank yo for your tips
on getting through treatment. it is little tips like this that are
useful. Fatigue was the worst side effect for me and I made sure I
got plenty of rest. The long term side effect is the peripheral
neuropathy in the feet from the taxane drug, docetaxel (Taxotere). I
have learned to live with it as there is no cure.Keep posting, keep
viewing.Fond thoughts.
Sylvia xxxx
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Hello Mary
Thank you for your
post. We shall be thinking of you on April 30th. Make sure
you drink plenty of fluids after treatment and throughout your
chemotherapy. Do not overdo things and keep telling yourself you are
going to get through this.I was interested in
your comments about the class system in the UK. It is still very much
with us. As you say, the lifestyle of those in control in Downton
Abbey was fine but it must have been horrendous for those in service,
especially the humble maids. We still have a system run by the
privileged few for the privileged few. This country is run, on the
whole, by those who went to expensive private schools and Oxford and
Cambridge. We call ourselves a 'democracy' and yet we have an
outdated feudal monarchy based on heredity. At least you get to vote
for your president!Your Easter Sunday
sounds very much like ours. It is essentially a family day. Here, in
England, most of the shops have close down by law on Easter Sunday.
The family meal seems to be roast lamb, but not with me, though. I do
not eat any meat, poultry or dairy products. The only animal products
I have are fish and some prawns. The thing about all these festive
days is that the shops have wall to wall products with sugar in them.
People need to get sugar out of their diet.I was sorry to know
that you and your husband were not feeling up to par during Easter.
I do hope that all will go well with your husband when and if he has
to go on kidney dialysis. Is there anything he can do to prevent this
happening? I can imagine that kidney dialysis is no picnic and can
understand why you want to put it off for as long as possible. What a
bad time both of you are having.My next check up is on
Friday May 2nd and I am just hoping all will be normal.
With this disease you never know what can happen.I do hope you will find
a doctor who suits you. I suppose a lot of doctors may seem cold
because it is difficult for them to become emotionally involved
because they see so many patients. I have been very glad to have an
all-woman team with a female oncologist and a female breast cancer
consultant who is also an endocrinologist. Those two women are
dedicated to their work. I also have a female GP but I do not see her
a great deal. I prefer to keep away from GPs on the whole! They are
pill-generating machines!Take care, Mary.
Fond thoughts.
Sylvia xxxx
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Hello Norma
Thank you for your
post. I can hardly believe what happened to the woman whom you are
supporting through he breast cancer diagnosis. What a frightening
experience for her. It looks to me as though they did not do the IV
correctly and did not get the epirubicin (Ellence) into the vein
properly, otherwise there would not have been any seeping. I am not
surprised they are treating that lady like royalty. They are probably
worried about being sued. I can just imagine the panic that must have
set in in your clinic. I can imagine how frightened your friend must
have been. I wonder what the antidote was? It makes you wonder how
one injection of antidote can cost £6,000. It means someone is
making a lot of profit. What with this and the cost of this new drug,
Kadcyla, at £90,000 per year per patient, something is very wrong.I do hope your friend
will be able to get her arm back to normal. That arm is probably
burnt on the inside. It does bring it home to you how lethal these
chemotherapy drugs are and we must not forget that the first drugs
were made from the mustard gas used in the First World War! They are
toxic, but what choice do we have? The other worry is that they are
not a cure and often cause more cancers in the future.Please let us know how
she gets on. These pic lines are not without problems either and have
to be carefully monitored to guard against infection. Can they really
not give people a choice and ban cannulas?Thank you for your
words of comfort about my approaching check up. The anxiety never
gets any better.Take care.
Fond thoughts.
Sylvia xxxx
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Sylvia - as the saying goes "I will be in your pocket"on May 2nd for your check up - with all the preventive things you do, I am certain that all will be well. I also know the natural tendency for anxiety when it comes close to check up time.
That book about the rise and fall of the working class sounds intriguing - something that I would most definitely be interested in.
My sister lives in Brewood in Shropshire (I think)! I have never been there, but I think it's supposed to be quite nice. She married an English man from Wolverhampton, and has lived in the Midlands since she was 17 years old.
I am going to see a different physio tomorrow to see if I can get better results with my arm and shoulder - it is starting to get me down.
Thanks for well your great responses to people - it is a sure comfort to come to this thread - always something new to learn and think about.
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Hello Adagio,
Thank you for your kind words. They are most welcome.
The book about the rise and fall of the working classes is indeed most interesting and is holding my attention It is finding the time to read it. I certainly think that the creation of the National Health Service (NHS) in 1948 was our finest moment in the UK for the 20th century and that the years 1945 to 1951 were years of great achievement for ordinary people but even those did not go far enough. Unfortunately the NHS now seems to be in dire straits and unravelling for lack of funds. It needs a 4% increase in real terms just to keep it ticking over, but more to get it on an even keel. It is not only lack of funds but widespread abuse and over use. I cannot believe the number of prescriptions being issued. This morning I discovered that 57 million prescriptions a year are being written out for Prozac! Not bad for a population of 60 million! The doctors will not be satisfied until everyone is on statins and antibiotics are overprescribed and becoming ineffective. The politicians do not seem to have any common sense answers. If you want services you have to pay taxes and paying taxes has become a dirty word in this country. I think we need something like the OHIP contributions that we used to pay when we lived in Ontario. We need an NHS tax. There was something similar when we lived in Quebec.
I was interested to know about your sister. I do not know Shropshire but understand it is a lovely part of the country. Do you think you will ever come and visit her?
I do hope you will be able to get better help with the pain in your arm. There is nothing more wearing than persistent pain.
Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am sure fellow Brits
will be interested in an article in the Daily Mail on Friday April
18th. The article is by Sophie Borland, Health Reporter. I
was concerned to read that the number of patients on NHS waiting
lists is at its highest for nearly six years. Apparently there are
now 2.89 million waiting for surgery or other hospital procedures,
including nearly 550 who have been waiting for more than a year. For
the first time since March 2011 the NHS has missed a crucial target
that patients should be treated within 18 weeks.
I was concerned to read
that several experts have warned that it will have to make
controversial changes, such as charging patients for routine
treatment, to avoid bankruptcy.According to the NHS
Constitution, a patient has the right to be treated within 18 weeks
and if they are made to wait longer they can demand to go privately,
paid for by the NHS, although very few patients are aware of their
rights.Apparently the present
government wasted £3 billion on a damaging reorganisation and
patients are paying the price.If you want more
details, please look on line.Have you any ideas on
how to save the NHS? I would love to hear from you.Wishing you all a good
weekend and remember make every day a happy day.
Thinking of you all.
Sylvia
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Hello everyone,
I have been looking to
find the latest information about breast cancer and in particular
TNBC. I found the following link, which I thought might be of
interest to you. The article is right up to date, April 2014.Best wishes to
everyone.Sylvia
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Hello everyone,
I hope this will be a
good week for all of you. Please remember that Mary will be having
her third infusion of chemotherapy this week and she needs our
support. To Mary, I shall be thinking of you on Wednesday April 30th
and hope that all goes well.To Jackpot (Gill), I
hope all goes well on May 14th when you have your check up
with your breast cancer surgeon.I thought you might be
interested in a short article I found in one of the newspapers
recently. The title was 'New breast cancer gene is identified by
scientists'. It was by Fiona MacRae, Science Correspondent.It was about uncovering
the secrets of a hard-to-spot form of breast cancer, raising hopes of
earlier diagnosis and better treatment. Apparently, for the first
time, scientists have identified a gene behind invasive lobular
carcinoma – cancer of the milk producing glands.You will remember how I
have said in the past that you need to know what kind of cancer you
have and not just your receptor status. You will remember, too, that
I said the most common form of cancer is invasive ductal carcinoma,
IDC.Invasive lobular cancer
accounts for about 15% of the 50,000 breast cancer cases diagnosed
each year in the UK. It is most common in women between the ages of
45 and 55 and can occur in both breasts at the same time.There is not always a
lump and the cancer is difficult to diagnose.Scientists have now
linked one particular gene with invasive lobular cancer.According to the
journal PloS Genetics, women with the rogue stretch of DNA have a 13%
higher chance of the cancer. It is hoped that improving the knowledge
of the genes involved in lobular carcinoma could improve our ability
to prevent and treat it.I hope this will be of
interest to some.If you want more information about types of cancer, there is a good chapter in the little book I have mentioned before, Understanding Breast Cancer By Professor Mike Dixon, Family Doctor Books in Association with the BMA, Stages and Types of Breast Cancer.
Wishing you all a good
week.Sylvia
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Hi Everyone,
Liz is still Cancer free and I should have posted this a couple of weeks ago and am sorry I did not.
Thank you to everyone that has been concerned.
At the time Liz and I really could see no other outcome, even the nurse practitioner thought it was cancer she has told us since.
I feel so so sorry for anyone with secondary cancer, Liz and I really did think this was the end. We have been so practical all the way through Liz's cancer journey up to a few weeks ago, it did hit me harder than I thought it would. It really was the worst feeling ever far worse than when Liz first found out she had breast cancer. Yet again it has made us look at our lives and what we want to do.
Liz has been told there is no explanation for her cough, Her x-rays came back clear, Liz has had it for 3 months now. Liz has Gall stones which is giving her pain in her stomach. When Liz had her ultrasound she was crying as she was in that much pain caused by the lady pressing hard with the scanner. She also has a fatty liver.
Liz has been told she cannot have HRT for her aching joints until she looses 2.5 stone and I think the doctor will have another excuse when she looses the required amount but loosing weight will help her joints.
I feel no great need to look on the internet any more or read about cancer and I can now fully understand why people that have had cancer do not post or look on the internet.
As Gill posted a couple of weeks ago LuLu has been diagnosed with brain mets. The trial she was on "Ganetespib" only worked for a few weeks so she has been taken off it. LuLu had an MRI scan last week and will get results today, she really has had a bad time over the last few months.
Another local lady who is friends with Liz on Facebook and went through treatment at the same time has been complaining of headaches over the past 3 months. The doctors first dismissed it but she found out 3 weeks ago she has brain mets. Also another lady off of "Calendar girls" on Facebook died 2 weeks ago suddenly.
Liz's friend with stage 4 ovarian cancer has a lot of back pain but can still drive and shop etc. She will be starting her last course of chemo end of May-June time.
Again I am sorry for only now posting.
Peter
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Hi Peter
I am glad Liz didn't have mets, I was convinced that Liz's cancer had spread, it reminded me so much of when Janette became sick again.
Sylvia, here are some more research articles:
http://www.sciencewa.net.au/topics/health-a-medici...
http://www.news-medical.net/news/20140217/New-rese...
http://www.marketwatch.com/story/generex-provides-...
Michael
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Hello Peter,
I was so glad to know
that Liz has had good news and that she is cancer free. Both of you
must be very relieved.Not knowing what is
going on when you have aches and pains or are generally feeling below
par is a time of great anxiety and worry and you make all kinds of
assumptions and diagnoses in your head. The best thing is to get to
your oncologist, get yourself checked, get the result and then deal
with whatever is thrown at you. It is not necessarily the end even if
you get bad news. There is a lot of treatment out there that can keep
you alive for a long time. Only those that have had recurrence or
spread can explain to us how they felt and how they feel. Look at
Carolben and how well she is doing with mets. I know people close to
home with mets who are doing well and one of them has had mets for
some years.I can understand how
all this anxiety has made you look at your lives again and how you
want to spend them. Everybody, even those who have not been through a
cancer journey, may find it very therapeutic to review their lives
and sort out their priorities. We can only live in the present. The
past is gone and none of us can count on a future. We just have to
live the day. For me, that is living as simple a life as I can.Do you intend to get
second opinions about Liz's cough? There must be an explanation I
would think. I have a neighbour who has had a cough for some time and
she has also been told they do not have an explanation. Are the
experts going to do anything about the gall stones and the fatty
liver? I think gall stones can sometimes be dissolved. Have you been
told what can be done about a fatty liver?At least losing weight
is something that is within a person's control through nutrition and
exercise. I know people that have had great success through Weight
Watchers groups and they seem to enjoy losing weight along with
others and often making friends.I can understand the
problems with looking on the internet. There is a lot of doom and
gloom, especially about breast cancer with triple negative receptors,
but I think doctors are lost if they cannot equate something with
popping a pill. I was wondering whether Liz is taking statins,
because they can cause people to have a lot of aches and pains. This
has happened with some relatives and they have been fine as soon as
they stopped the statins.I can understand that
people who have had cancer want to put it all behind them, but we do
need people to post if we want to have support groups on line. Of
course there are plenty of local support groups but these do not suit
everyone.I was so sorry to read
about Lulu and that she had brain mets. I was also sorry to read that
she had to be taken off the trial and that the ganetespib did not
work for her. Do they have anything else to help? Let us know what
the results are for her MRI scan.You certainly have had
a lot of bad news with women that you know. Do you know what
treatment they are giving to the friend who was diagnosed with brain
mets three weeks ago?Do you know what
happened with the woman on Calendar Girls who died suddenly two weeks
ago?I do hope all will go
well with Liz's friend who has stage 4 ovarian cancer. I hope all
will go well with her last course of chemotherapy.I can understand what a
difficult time you and Liz have been going through and I do hope
things will improve for you. At least we are heading into summer and
hopefully can look forward to some decent weather. Do you have any
holiday plans? How is your son? What is going on with Daryn?Thinking of you and
sending best wishes.Sylvia
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Hello Michael,
Thank you for posting
some more research articles. This is much appreciated and I shall
look at them later.Cancer was in the news
on the radio (Radio 4) this morning and it was all about how survival
rates have improved since the seventies. This news was based on
survival rates in general and it now seems to be 50% survive at least
ten years. Apparently this is a huge improvement on survival rates in
the seventies. We have to remember these are statistics for all types
of cancer and I think survival rates are much better for breast
cancer. Rates are not improving for lung, brain and pancreatic
cancer. Nevertheless, with a figure of 160,000 people a year dying of
cancer in the UK, that is still a huge number. Apparently eight
million people a year die worldwide and cancer is the biggest killer
of people in all age groups.I was wondering what
you think about all this?Keep well.
Fond thoughts.
Sylvia
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hi Sylvia
Been super busy this last couple of weeks, I've been helping my disabled uncle do his garden including potting up around 500 of the 2000 plants he's bought, god knows why he bought so many there everywhere indoor and out they were even in his bathroom, he used to own a nursery and sell thousands of plants and do the flower shows and I don't think he realises he lives in a little house now
Lulu got her scan results yesterday and it wasn't good they found a second lesion. There's one in the front and now one in the back of her brain so surgery is no longer an option, their starting full brain rads on Thursday for five sessions then she's going on chemo tablets for as long as they keep her stable, I can't even imagine what she's going through right now
We had our birmingham superstars meet up last weekend, it was lovely to finally meet everyone who had gone through this with me it was weird hearing accents and putting faces to names, we went for a lovely meal together and had a few drinks and a good laugh, we are going to meet up again in September because it will be a year since starting chemo so I'm looking forward to that
I've also been shopping for my holiday on Saturday, I'm really looking forward to it, I can't wait to get away for a bit...I was having a bit of trouble getting travel insurance they were either silly amounts of money some more than the holiday cost or just wouldn't cover me at all....but McMillan gave me a couple of numbers and I eventually got cover for £14...anyone going away this year and needs travel insurance try these www. Insurewith.com it was created by a cancer patient for cancer patients...
I really hope your onc appt on the 2nd May goes well...
Peterandliz....I'm so glad liz has no spread and I hope you get to the bottom of what's causing the cough, it must be so frustrating to be told there's no explanation, I hope they sort her gall stones out soon as well I've heard they can be very painful
Norma....that's awful what happened to your friends arm, is it permanently damaged now or will it heal and to happen on her first one as well, as if it's not scary enough going through chemo without that happening
Mary....I hope your next chemo goes ok tomorrow and the side effects are not too bad, remember to drink loads
Adagio....how did you get on with the new physio ?
Take care everyone
Gill
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Hi Sylvia,
Liz's cough is not as bad as what it was 5 weeks ago. All they gave her was an inhaler and that's only because I pressed them to do something. As the X-rays were clear Liz is not to worried for now and it is gradually getting better.
Doctors do not do anything about gall stones in our area unless they have too. Liz has a friend that has had bad gall stones for 2 years and nothing has been done they just tell her to stop eating fatty foods, even though she has been in a great deal of pain at times. Liz is on a diet and has cut out all fat but we have never eaten fatty foods as I am diabetic. It is fat that kills diabetics early not sugar.
Its not the dome and gloom on the internet, I only look at the facts and knowing in July it will be 3 years since diagnosis for Liz will be a good place to be as long as she stays cancer free as so many that get a recurrence get it in the first 3 years. I like to look at peoples personal experiences, see how quick the cancer returns etc so I know what to look out for and what to expect. That's why after looking at Liz's symptom's and comparing them to everything I have read about other peoples actual experience's I could not see any other outcome apart from the cancer had spread. As Michael wrote " I was convinced that Liz's cancer had spread, it reminded me so much of when Janette became sick again."
I watched the London marathon when it was on and nearly everyone they spoke to who was fund raising was doing it for a cancer charity.
Cancer does seem to be everywhere at the moment but it may be that we notice it more now we have been affected by it.
Deryn is doing fine and is getting back to a normal life now his bone marrow has grafted. He has been on many TV and radio programmes due to his recovery.
We have no plans for a holiday yet. last year we took our son out of school when ever we wanted to but they have stopped it this year so it has made it harder for us to go away in school time. there are ways around it though which I will test when the weather gets a bit warmer.
Peter
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hi Sylvia
Thought you might find this interesting
http://www.uniklinik-freiburg.de/chirurgie/forschung/molecular-oncology-ag-maurer/projects.html
Gill
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Hello Jackpot (Gill),
Thank you for your
post. I had to laugh at what you said about helping your uncle with
all that potting up. How on earth is he going to cope with all of
that? I can sympathise because I have a younger brother who has gone
pot mad. He just keeps buying pots and plants and cannot seem to
stop.It is so sad about Lulu
and I am sorry to read that they have found a second lesion. I do
hope that radiotherapy will be successful but this kind of treatment
to the brain must be awful and frightening. Do you know what kind of
oral chemotherapy she will be on?It must have been quite
an exciting and emotional experience to meet up with your Birmingham
Superstars group.I do hope you will have
a good holiday in Turkey and that you can put cancer out of your
mind.Thank you for posting
the information about travel insurance. I am sure people will find
that very useful.I look forward to
hearing from you when you get back.Fond thoughts.
Sylvia xxxx
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Hello Peter,
I was glad to know that
Liz is getting better. I must admit I was surprised to learn that
nothing is done about gallstones in your area, especially if people
are in pain. I thought they had to be removed. It is a good idea to
watch your fat intake and that can only be for the good.How do you cope with
your diabetes? I have a cousin who has type 2 diabetes and does not
really look after himself. Where he is he has regular checks at the
foot clinic and Moorfields Eye hospital and visits to the dietician
from time to time. He started off on medication alone but now also
has insulin. It is a nasty disease.It is true that lots of
people seem to be involved with raising money for cancer charities.
So many people are being diagnosed with the disease. My dentist is
cycling from John O'Groats to Lands End to raise money for cancer. He
is doing this in May with his colleague.I was so glad to know
that Deryn is doing fine and getting back to a normal life now his
bone marrow has grafted. It just proves that no one can really
predict what will happen with cancer.I do hope you manage to
get away for a holiday.Best wishes.
Sylvia
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Hello Gill,
Thank you for posting
the link and I have had a look at it. It is very interesting about
the role of stem cancer cells, but what I wonder is what will be the
result of this research and when? Will it mean more drugs and shall
we ever move away from surgery, chemotherapy and radiotherapy?Best wishes.
Sylvia xxxx
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Hello Michael,
I have just been
looking at the first of your links, the one published in Health and
Medicine. It is very interesting to read about the possible use of
synthetic peptides to prevent out of control tumour growth. They are
called interfering peptides (iPeps). It is encouraging to know that
they are particularly successful in TNBC and are designed to target
EN1. I found the article got a bit technical at this point and
started mentioning EN1 as a brain specific factor not normally
expressed in breast tissue. What do you make of this?I would be glad of any
input.Best wishes.
Sylvia
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Hi Sylvia,
I have read that EN1 is important in brain development in the foetus but beyond that it is too technical for me.
The survival statistics for cancer are very heartening but of course they don't highlight the cancers where very little progress is being made. Radio 4, you and yours, have been talking about delayed diagnosis, chiefly the fault of GP's. It is quite shocking that people presenting with troubling symptoms were being treated for things such as IBS where a simple and cheap test would have revealed bowel cancer.
There was a piece on Irish TV news this evening about a visiting professor from Cambridge talking at a medical conference in Dublin. He says that the developments of the last 15 years are exciting and that all cancers will be containable in the next 30-40 years.
Here are some more links:
http://7thspace.com/headlines/459049/phospho_kinas...
http://www.stemcellsfreak.com/2014/02/triple-negat...
http://7thspace.com/headlines/452880/fenofibrate_i...
Michael
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Hello Everyone
Was so pleased to hear the good news about Liz and now just the cough to resolve and hopefully she will soon feel much better. It is a strange thing these coughs that are hanging around - I work in a school in Surrey and so many Teachers , Parents and Children had stubborn, ongoing coughs that lasted for ages, started to clear up only to return with a vengeance for a few more weeks.
Sylvia I found the DNA gene discovery for ILC very interesting. A fellow Teacher at my school was diagnosed with Invasive lobular 10 years ago. She has done very well and is in great health now. She always wondered if there was a genetic link as her brother had testicular cancer in his 20s as did her own son in his 20s too. All recovered and now fit and well. This discovery of a gene link will add substance to her hunch - previously the hospital did not confirm a genetic link. I will pass this info to her.
Gill my friends arm is slowly improving. She is being monitored carefully but it seems may avoid the plastic surgery first felt necessary. She is very scared about having Taxol when the FEC part of her chemo is finished as she has heard about allergies to it and this experience has really shaken her. The good news is the tumour has shrunk already when measured in oncology so she is now getting a much nicer response to Epirubicin! Apparently the antidote I mentioned is kept in storage to be shared by 3 hospitals if needed. It is extremely expensive and if the batch expiry date has passed has to be destroyed and a fresh batch supplied even if none of the hospitals needed to use it. It has to be available at all times. I have never heard of this before.
Have a very busy few months ahead so may be even quieter than usual but good luck Sylvia on May 2, Gill on the 14th, and also to everybody else with their ongoing treatments/concerns. I am so sad about Lulu and the others who are not faring so well.
Bye for now, Norma xxxx
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PeterandLiz - Congrats on the great news for Liz and glad her cough is getting better day by day! I can only imagine how hard it must be for you to have to watch your wife get dx with breast cancer, go through treatments and then on to survivorship. But in doing so, please try to remember that nobody else's story or numbers can dictate Liz's future and health. When you think "as long as she remains cancer free", try removing the words cancer from your daily dialogue, and it might help give you more confidence and ease your worries. Instead try saying "she is healthy and we plan on celebrating her 3 years" or something similar. Also try to focus on the variables that are favorable in her case, which is that she had 0 nodes involved, etc. And then of course any changes you have made to lifestyle since diagnosis may help as well. Please let Liz know that we are all so happy for her great news!
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Hello Michael,
It was nice to hear
from you and thank you for some more links. I shall gradually work my
way through them. Let us see if anyone else posts with information
about EN1 and the connection to TNBC. These cells all seem to be a
bit mixed up. I remember reading about a fairly rare breast cancer
known as metaplastic breast cancer, and how the tumour had cells that
did not belong in the breast, at least that is how I understood it.Yes, the survival
statistics for cancer are heartening, but for cancer overall it is
still only 50% after all these years. As you say, other cancers are
not doing so well, especially lung, brain and pancreatic. These will
pull the overall figure down. I read this past week that the survival
rate for breast cancer is 78%, which is good, but I would love to
know how the 22% who do not survive are made up. How many of this 22%
are for rarer cancers and for triple negative breast cancer and
triple positive breast cancer. It is good to know that the powers
that be now talk about ten year survival rate and not five year
survival rate. I still not take any of this for granted. I shall not
reach the ten year mark until June 20th 2015, by which
time we might have a new government and try to build a new country in
which we do not have oligarchs at one end and people dependent on
soup kitchens at the other!I was interested to
know that you had been listening to You and Yours on Radio 4. I
missed that programme. I think it is shocking that GPs often miss
cancer in patients and do not refer them to consultants at the
hospital. GPs do not seem to want to refer patients to hospitals and
I sometimes wonder if they are getting points for not doing this. We
have to remember that doctors are holding the funds now. My brother
has had a big hassle with one of the GPs at our surgery here, because
he would not refer him to the hospital when he had been in pain for
months with a knee problem. I gave him information from my BMA
Medical Book which gave the procedure for such problems, and my
brother confronted the GP about the information and reminded him that
he was a member of that BMA! That seemed to set treatment in
progress. You cannot sit back and let doctors play God. Does Northern
Ireland come under the same GP funding?It would be nice to
believe that developments in the past fifteen years have been
exciting to the point that all cancers will be containable in the
next 30 to 40 years. How will they contain them?I hope you have an
enjoyable long weekend.Fond thoughts.
Sylvia
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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
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