Calling all triple negative breast cancer patients in the UK
Comments
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Glad you like it. It was originally written in four line verses, but even when I edit it, it re formats itself into one long verse.
Anne0 -
Hello peterandliz
I was glad to know that
the drug ganetespib is working for your friend, Lulu. Please give her
best wishes from this thread. This is good news for all TNBC
patients. We have something that is working for metastases.Best wishes.
Sylvia
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Hello adagio
I was glad to know that
you are well and putting treatment behind you. I certainly think that
staying away from medication as much as possible is definitely the
healthy option.I have just been
reading through the December edition of What Doctors Don't Tell You
and find it so interesting and informative. I think it is a must read
for all thinking people.Thinking of you.
Sylvia xxxx
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Hello Jackpot (Gill)
I do hope you are
beginning to feel better. I remember that I kept my red blood cell
count normal by taking iron tablets, eating prunes, raisins and dried
figs, as well as red kidney beans, all iron-rich foods. Lentils are
also a good source of iron. Do everything in your power to avoid
transfusions.Look after yourself.
You are nearly through with all this chemotherapy.Thinking of you.
Sylvia xxxx
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Hello apandy (Anne)
I think you look lovely
in your red sleep cap, and I think your poem is absolutely brilliant.I remember how cold it
was on my head, especially at night and I also loved the fitted
turbans I wore to keep me warm at night. I had blue and navy and they
were very similar to the type of headwear that the French writer
Simone de Beauvoir used to wear.Keep counting those
days until January 29th when this chemotherapy journey
comes to an end.Best wishes.
Sylvia xxxx
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Jackpot - I took a tablespoon of blackstrap molasses every day to keep my hemoglobin up . I also drank 1 oz of wheatgrass juice ( freshly made) - not very easy to take at all , but I did not want a blood transfusion, so did all I could to prevent one. I also ate red meat (grass fed) a couple of times a week. Hope you are doing OK.
Apandy - love the poem!! I was quite attached to my sleep hats as well.
Sylvia - I do read WYDDTY - and generally love it - the only problem I have is that it makes me feel guilty for having had chemotherapy.0 -
hi Sylvia
I asked about iron supplements and was told they wouldn't make a difference as I didn't have enough red blood cells to absorb them....does that make any sense to you, I thought it was a strange thing to say but they know best i suppose.
Adagio....I've tried the wheatgrass juice...so gross...not tried the blackstrap molasses before though...might give that a go....deffo don't want to go down the transfusion road
Take care
Jackpot (gill)0 -
Hello adagio
I was glad to know that
you are reading WDDTY. It certainly opens one's eyes to all the
tricks that go on with the drug companies. There is such a lot of
brain washing going on.We cannot feel guilty
about having had chemotherapy. Despite the side effects from this
treatment, we might not have survived without it. I just think we
need treatment that is not so devastating for patients and I am not
sure enough is being done to ensure this. Even the monoclonal
antibodies have very nasty side effects.Sending you my best
wishes.Sylvia xxxx
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Hello Jackpot (Gill)
I am not sure what to
say about what you were told about iron supplements. I am not a
doctor but I thought you needed iron to make red blood cells. I tend
to make up my own mind about these things and I did not ask anyone
whether I should be taking iron supplements and whether they were of
any use. I decided they would help me and I took them and I did not
have any problems with red blood cells. I would eat as much iron rich
food as possible if I were you. I did that as well as taking the
supplements.I tend to think that
the medical establishment knows very little about nutrition, so I do
not ask about it. I remember the nutrition sheet I was given when I
started treatment and I would not have followed it on anybody's
recommendation. It was a diet loaded with sugar and dairy fat!!!
These are the very things we should avoid.As for the blackstrap
molasses, I would be concerned about the sugar, but they do contain
iron.Fond thoughts.
Sylvia xxxx
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hi Sylvia
Your right I think I'm going to take some iron supplements, their certainly not going to do any harm are they,
I remember being given a similar nutrition booklet and thinking the same thing about how unhealthy it was, I think the purpose of the high calorie foods on there is to keep your weight up if your having trouble eating, I certainly didn't follow it, I'm not saying my diet is perfect but its a lot better than their suggestions
I thought you might like to see this pic....I'm a big fan of LFC and during my last chemo liverpool woman's fc came in with their league trophy they've just won, they were really nice and posed for photos and gave me free tickets to any match of my choice
Take care
Jackpot (gill)0 -
Jackpot - how cool is that photo? What a lovely thing for them to visit you during chemo. You look great in that photo, but I remember how everyone used to tell me I looked great - but that wasn't always how I felt. Have a good weekend.0 -
thanks adagio....
it's funny how little things like this really cheer you up when your going through this, just knowing they took time out of their busy day to come and see us and they were lovely as well, not in a rush and took time to talk to people who wanted to chat ........ It made my day
Jackpot0 -
Hello Jackpot (Gill)
Thank you for the
lovely photograph. I think photographs are important on the thread.
They can be a form of therapy and anything that helps with
chemotherapy and show a fun side is good.When it comes to
nutrition, I think we all have to trust our own instincts. I have
looked in a couple of books that I have about the best sources of
iron. One simply says meat, fish and lentils. Another says red meat,
poultry, liver, eggs, fish, cereals and bread (this would have to be
enriched), green vegetables. It made me start thinking again about
heme and non-heme iron and I how I had read that heme iron is
supposed to be more easy to absorb than non-heme iron, and that meat,
such as beef and liver, is the best source of heme iron. Before liver
started to fall out of favour, it was supposed to be the best source
of iron and highly recommended.I remember reading
Chris Woollams' articles about the cancer diet recommended by the NHS
and how bad it was for most cancer patients except those suffering
from the condition known as cachexia. This is severe weight loss and
listlessness produced by serious disease such as cancer or
tuberculosis. I do remember that this often happens in terminal
patients and I know when my brother and uncle were described as
terminal, they were fed Ensure, which is high in sugar and fat and
helps to put on weight.I have recently read
that an adult needs 15 – 20 mg of iron a day and that if taken in
the form of a supplement it should be taken after meals to avoid
irritation of the gastrointestinal tract. Supplements can cause
constipation, so probably it is prudent to drink plenty of water and
eat prunes, not to mention fruit. There is iron in the dark meat of
chicken and turkey.I hope you have a good
weekend and do something enjoyable. Remember you can post on here
about anything you like, especially anything that you do to take your
mind off your cancer treatment.Fond thoughts.
Sylvia xxxx
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Hello everyone
Just popping in to say
hello to all of our regular posters, anyone viewing and anyone just
new to all this.To peterandliz in
Norfolk, UK, I do hope all is well with you and that you have not
suffered from the flooding all along the east coast due to the tidal
surge, the biggest in sixty years. I do remember the flooding in 1953
and in particular in Kings Lynn. I saw pictures on the television of
how bad it was in Boston, Cromer, Yarmouth, and Jaywick in Essex.
Please let us know you are alright.To Michael in Northern
Ireland, I know that the flooding was bad here as well and do hope
you are alright.Has anyone heard from
InspiredbyDolce (Debra) in Phoenix, Arizona, USA? She was such a
regular poster and gave out so much information. I do hope she is
alright.Did anyone read in the
newspapers this week about the trials going on with DCIS (ductal
carcinoma in situ)? They think that in the future there will be a
test to determine whether the DCIS is aggressive and needs to be
treated, or whether it can be left alone as it is not likely to cause
problems. This means that for some women they can avoid surgery,
radiotherapy and chemotherapy. There has always been a debate about
DCIS and what it is exactly.That is all for now.
Have a good weekend and do what you enjoy. Do not let cancer take
over your life, whether physically or mentally.Best wishes to all of
you.Sylvia
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hi Sylvia
Just popping on to say hello
Glad you liked my photo, it was a lovely surprise,
A few girls have even asking after inspiredbydolce on another thread, it seems she just stopped posting in oct without reason, but she did lose two friends to BC just before so it might have something to do with it, I do hope she's ok
Take care
Jackpot (Gil)0 -
jenn - so very sorry to hear about the spreading of the cancer - that must be so discouraging for you. I don't have any experience on a recurrence, but hoping someone else on the forum here can help you. I can offer a hug and a prayer - wishing you well!0 -
Sorry to hear your news, Jenn. I can't offer any advice myself but I think there is a board here, for people with recurrences, that you might ask on. Thinking of you and sending hugs your way,
Anne x0 -
Hello jenn-uk (Jenn)
I was sorry to hear
that your cancer has come back. In all of this try to be positive.I was surprised to read
that when your cancer reappeared after the first diagnosis in June
2011, that your medical team could not tell whether it was a
recurrence or a new primary. I would have thought they could have
done this. Did you originally have a lumpectomy and is all this
happening in the same breast?I do hope all will go
well with your scans for liver etc. and that you will have good news.
Please post and tell us what happens on Thursday. Let us know what
stage they come up with on December 16th. Have you been
told yet whether it is TNBC again and the grade, or will you be given
this on December 16th? Are you now going to have a
mastectomy on December 23rd?How many nodes were you
told were affected when they took some out in December 2011?I do not have
experience of new primaries, recurrence or spread, but there must be
some drugs out there that can be used to help you.You have said that your
oncologist said that you have already had five different chemotherapy
drugs but she must have chosen these drugs for you. It is quite
common to have different chemotherapy drugs as they act in different
ways and are thus more effective. It is quite common to have so many
months of FEC (fluorouracil, epirubicin and cyclophosphomide)
followed by so many months of a taxane drug, docetaxel (Taxotere) or
paclitaxel (Taxol). If you had these that means you have had four. Another common drug is methotrexate.
What was the other one? I cannot understand what she would mean by
squandering them. If you are not happy with what you are being told
then you must get a second opinion.On this thread we have
Carolben in South Africa who has spread to the lungs and I seem to
remember she had more of one of the taxanes for this and is now
taking oral Xeloda (capecitabine). Other drugs that I have heard of
for breast cancer treatment are carboplatin, Abraxane (paclitaxel
protein-bound particles for injectable suspension), Gemzar
(gemcitabine), Paraplatin (carboplatin, cisplatin).Recently on this thread
Peter posted to tell us about a trial of a drug called ganetespib for
TNBC.I was wondering whether
you had radiotherapy after chemotherapy.It would be very useful
if you could put more information with your details so that anyone
reading the posts knows exactly what has gone on with you.I do not know your age,
so I am wondering whether you are young enough to get genetic testing
or whether you have already had that. It is useful to know your age
because we are told breast cancer can be more aggressive in younger
women and that also because younger women have dense breasts it is
harder to detect signs of cancer.Keep in touch with us
and if you need any help or information we shall be there for you.Fond thoughts.
Sylvia xxxx
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Hello Jackpot (Gill)
It could be that
InspiredbyDolce (Debra) is feeling upset about a lot of the sad news
that has been on the TNS lately. We have to remember all the time
that more people are surviving than dying and we can only do our own
little bit to help us to survive.Take care
Sylvia xxxx
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Hi Sylvia,
We are all fine. We are 40 miles from the coast and live on a bit of a hill so no problems here.
I have been in London for a couple of days with chocolate fountains and I am back down there today just behind the Tower of London for a birthday party.
Liz's friend with terminal ovarian cancer had a scan over a week ago and has been told good news the cancer has not grown in the last couple of months. Its her wedding on the 14th December and we are all dressing up in medieval costume.
Deryn the boy that goes to school with my son is going to die before Christmas. Liz has been crying on and off for the last 2 days over him and it is very hard to get him out of our mind. Reading his and his family's blog on Facebook is hard as its so easy to put our son in his position.
https://www.facebook.com/DoEverYthiNgFoundation?fref=ts
Peter0 -
Hello peterandliz
I was glad to know that all is well with you and
that you are 40 miles from the coast.I hope all went well with your chocolate fountains
at the birthday party just behind the tower of London.I do hope Liz's friend will continue to do well
and that you have a great time at her wedding on December 14th.
I shall think of you next Saturday. Please feel free to post any
photographs.It is so very sad that Deryn is going to die
before Christmas. I can understand how upset Liz must be as well as
your son and it must be heart wrenching for Deryn's family. Children
dying is not the natural order of things.Thank you for the link.
Thinking of you.
Sylvia
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Last nights chocolate fountain in London.
This is what we do. The worst job in the world standing next to flowing chocolate for 6 hours. I would rather be on a farm somewhere than taking these out to venue's.
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Hi all, Well I have had the mammogram and the locum surgeon has had a quick look and says that everything looks ok. They did say that it will be looked at more closely though. My MRI should take place in January. I prefer to go by that result as my breast cancer did not show up on the mammo. So back to the waiting game!!0 -
Hello peterandliz,
Thank you for the photograph. The chocolate fountain looks amazing. It must be a great success every where you go. I am sure it would be a great hit on the Exmouth see front. How do you serve it?
Fond thoughts,
Sylvia.
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Hello Hero1967,
It was nice to hear from you and I am so glad that the mammogram was clear. I can understand that you have more confidence in a scan. I know that this waiting game is a difficult one to play, but this is the way the system works. It is not good for the patient. January will soon be here, so ban all thoughts to the dark cupboard for a few weeks and enjoy the festive time of year.
Fond thoughts'
Sylvia.xxx
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Hello everyone,
I was just wondering whether any of you have heard from big leggy Sandra. I do hope she is alright.
Thinking of you all. I suspect a lot of you are playing the waiting game of counting the days for treatment and are busy with the run up to Christmas and the New Year. What are your wishes for Christmas and the New Year? What kind of presents are you buying for Christmas? What are you hoping for yourselves?
Best wishes, Sylvia xxx
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Sylvia - we have simplified our Christmas to picking one name from a hat - which means that each adult in the family gets only one gift. Everyone seems to like this since they are all short of money - we set a limit of $50. The little kids ( 2 yr old and 8 month old) receive gifts from everyone. We still each have stockings filled on Christmas morning - this tradition will never end because everyone loves their stocking!! My husband and I have not given gifts to each other for many years - we choose to put the money to a few of our favourite charities. We find this very fulfilling.0 -
Hello adagio
I was interested in what you do with regard to
presents at Christmas. I do agree wholeheartedly with how you have
simplified the giving of Christmas presents. Christmas is becoming
more and more materialistic. Here we have non-stop advertising about
presents, food and drink. It is truly sickening. My husband and I do
not give presents either and also prefer to give to charity.We are not religious so in that respect Christmas
does not have that meaning. We used to enjoy a simple family get
together but with a lot of our close family now dead, that has come
to an end. We tend not to mark Christmas much at all now.Thinking of you and wishing you well.
Fond thoughts.
Sylvia xxxx
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Hi jenn-uk,
I am sorry to hear that your cancer has returned. Have you had biopsy results? For some reason, that I do not fully understand, Janette's results took about eight weeks and that delayed the start of treatment. She started with xeolda which she was told could be used indefinitely as long as it works but was then moved onto pacitaxol.
As far as the previous chemo that you have had, as far as I know, only the chemo's such as epirubicin carry a life time limit of 8 doses.
Hopefully you have good results, I know of people going from treatment to treatment for years.
Best wishes
Michael0 -
Hello everyone
I found an article in
the Your Health section of the Daily Express on Tuesday December
10th. The article was entitled New Look at Cancer Care, an
alternative approach has been devised for patients referred for
palliative treatment, says Adrian Lee.The article states that
every year a 150,000 cancer patients in the UK are told that they
have reached the end of the conventional treatment line and that
chemotherapy and radiotherapy drugs are not longer viable.It goes on to say that
a clinic opening this month in London will offer another option.The clinic is called
the Care Oncology Clinic and it is taking a new approach to treatment
to all late stage cancers by offering everyday drugs that were
originally used for other conditions.They are using
cholesterol-lowering statins and anti-diabetic drugs.Studies have shown that
these drugs can have an impact on cancer cells which need blood
sugars and fat to grow (I think we all know that cancer cells love
sugar and that we should keep to a low sugar diet. We also know that
fat is not good for us, especially saturated fat from animal products
and that we should try to keep to a healthy weight and avoid excess
fat on our bodies.).It is thought that
patients taking these drugs could have the growth of their cancer
cells slowed down or halted.It is not claimed to be
a cure. It is stated that it will be offered when there are no
alternatives and patients have been referred to palliative care.Apparently this
treatment will be available only privately but the drugs being used
are low cost and already licensed. The course of treatment will cost
about £800 and that includes consultant fees.There is more
information about all this in the article and if you want more
information on the Care Oncology Clinic the link ishttp://careoncologyclinic.com/
and the link to the
article is:In the same newspaper
there is an interesting article about how to prevent dementia by
doing five things.Do not smoke.
Exercise.
Low alcohol intake.
Healthy eating.
Keep a healthy weight.
I think we all know
this is a good life-style to adopt in an attempt to prevent cancer.
It is also a heart-healthy life-style and probably one we all need to
adopt to try to keep at bay degenerative diseases. There is no
guarantee but at least we can try.I hope everyone is
having a good week.Sylvia
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