Calling all triple negative breast cancer patients in the UK
Comments
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Hello
Jackpot (Gill),I
was so happy to see you had posted. I was so glad to know that you
had had a lovely two week holiday to Cyprus, but sorry to know that
you have had a few problems since you came back. What a shock for you
to be haemorrhaging the day after you came back from your lovely
holiday.I do
hope everything will go well on October 27th when you have
your fibroid surgery. It will be good to have that behind you.I do
not know the significance of the 229 score on the ca-125 cancer
marker, but I hope you will have phoned your oncologist today and
have had an explanation. I was wondering whether it could have
anything to do with the fibroids. I can understand how worried you
must be and how anxious waiting for an explanation.Let
us hope there is an explanation. If the news is not good, still
remain positive because there is surgery to remove the ovaries
followed by treatment.I am
sure I speak for all the women on the thread, and Michael, when I say
our hearts go out to you and please let us know what happens.Take
care, Gill.Fond
thoughts.Sylvia
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Hello
adagio,How
are things over there in Canada? Have you settled down after the
weddings? I hope you are keeping well. What is the weather like out
in BC?Fond
thoughts.Sylvia
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Hello
Carolben,I
hope you are still viewing and that you are still keeping as stable
as possible.You
might want to look at the link that PontiacPeggy sent in about a
clinical study for metastatic triple negative breast cancer.https://www.celgeneclinicaltrials.com/tnacity
Fond
thoughts.Sylvia
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Hi Sylvia and thanks for taking the time to write such an informative reply. I did ask my onc about my chemo regime and was told that epi-cmf was the 'gold standard' for node negative tnbc and that the tax was very toxic and not necessary. I didn't ask about this until after my treatments though.
When I was first told which chemo I would receive I was not in a place mentally or emotionally to research or argue, now i wish i had but i have also read that the epirubicin is an anthracycline which is very effective for tnbc. Anyway it is done now but i do wonder.
Thanks for the info re diet, what sort of probiotics do you take Sylvia? Also do you have any information regarding taking turmeric tablets which I have read is a good weapon against tnbc? I am taking cod liver oil capsules daily, mainly for joint stiffness following chemo, but also as it had vit D which is beneficial I believe. I am going to make real efforts in getting more exercise too.
I have been reading the other messages and it is good to read all your stories of how you are coping, so thank you and hope to hear from you soon, Sue x
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Hello
Suewirral (Sue),With
reference to your chemotherapy treatment, I am sure that your
oncologist chose the best treatment for you, so do not worry about
not having had Taxotere or Taxol. It is true they are very strong and
have nasty side effects. Just concentrate on looking forward all the
time. All the chemotherapy drugs are very effective in getting us
through this cancer journey. I can understand the turmoil that you
were in at the time. It is bad enough going through the shock of a
cancer diagnosis and you had in addition to having your partner die
before your diagnosis.You
asked about the probiotics that I take. I have plain natural organic
soy yoghurt with live cultures as part of my everyday eating routine.
I buy the brand called Sojade, which are sold mainly in natural food
stores. There is also a Provamel one. Make sure whatever you buy says
organic and bio. I have the soy because I do not touch dairy
products. I also have organic fermented cabbage, otherwise known as
sauerkraut. Another thing I have is organic tempeh, which is Japanese
and fermented soy. There is also miso. I have them in stir-frys. You
can get all you need in the yoghurt.There
has been a lot of news about the anti-cancer benefits of turmeric. I
do not take the tablets but I am sure lots of people do. I buy
powdered turmeric and put it in to stir-frys or whole grain rice when
I have it. We have to do whatever fits into our daily nutrition
routine.I am
sure that cod liver oil capsules can be entirely beneficial and they
are said to be excellent for stiffness. What kind of stiffness do you
have following chemotherapy? There has been a lot of information
about vitamin D and how deficiencies in these have been found in
women with breast cancer. I take vitamin D soft gel capsules every
day. I think we need greater amounts of vitamin D than we can get in
cod liver oil. I buy Solgar vitamin D and take two every day, giving
me 2,000 IUs of vitamin D. I think vitamin D is probably the most
important vitamin that we need to take. Some say that vitamin D in
the body is really a hormone. I did get my vitamin D level measured
through the hospital in the first years following my diagnosis and my
level was excellent. We need these vitamins especially in our sunless
winter months. When we can we need to get out in the sun for short
periods and without sun block.I
hope this helps.We
can all do something with our nutrition and exercise and this can
only be beneficial in our general health.There
is not one cause of cancer. It is multi-causal and there are many
risk factors. We just have to help ourselves and hope for the best
and not worry about risk factors that are beyond our control.Out
of interest, did you have any scans after your diagnosis and before
treatment and after it? I had a CAT scan and bone nuclide scan before
and after treatment. After treatment I started on three-monthly check
ups, alternating between my oncologist and breast cancer consultant
surgeon. After a few years it went to six-monthly alternating check
ups and then on to once a year with the oncologist. I was discharged
from the breast cancer consultant surgeon's clinic two years ago.
These check ups were just physical ones. I have also been having
mammograms every two years since diagnosis. I hope this helps you to
know what the general routine is, though it can vary.Thinking
of you and sending fond thoughts.Sylvia
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Hi Sylvia
I have just updated the research news on the website, nothing really outstanding unfortunately
My trip to Tossa De Mar was really nice, it wasn't a bit like I expected, which was high rise hotels and boozy people all over the place. It is small and quaint in a lovely setting.
I was in Brentwood last week and considering your question about how much it has changed. To be honest I don't think it has changed much, it is the same with Chelmsford. I first went to Chelmsford in 1976 and I think if I hadn't been back until now that I would still broadly recognise everything.
Have a nice weekend, it has been a bit wet here and although ok now I can hear that the wind is building :-(
Michael
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Hi All,
Had chemo number seven yesterday, one more to go! Hopefully surgery will be early December, four weeks after last dose. I am seeing the breast surgeon next week to discuss the surgery, it will definitely be a mastectomy and just reading up on the different types of mast' so I know what he will be talking about. I know that some full mastectomy's go quite deepen(radical I think) so don't allow for reconstruction but I don't suppose he will know what he is up against until he gets in there.
I will also be looking forward to the pathology to see what stage I am, I know that stage 2 is better prognosis then 3, so hoping for 2! However size is still about 7 by 6, and it needs to be 5cms for stage 2 and I know that I already have at least one lymph affected.
Out of interest Sylvia, do you know what stage you were at? How long after the surgery did you have the follow up scans?
I hope Jacqueline is coping well with treatment, I am doing well and like you Sylvia it is mainly fatigue. I have read so much on vitamin d3 and am taking quite a few whilst I have the Larry, It's supposed to be very beneficial for surgery too. I also take cod liver, vitamin C, apricot kernels (yak but so much good research into this) and beast defend, if you google this it does combine a lot of essentials for people like us, especially turmeric, special types of mushrooms, etc, quite expensive though, might be something you would like to read up on. I think I found it from one of the links posted on here. It's quite hard for the beneficial aspects of turmeric to pass through into the blood stream unless it is turmeric extract. You can buy it like this, again, quite expensive but there is a way to make it yourself, I googled it.
I could't watch stand up to cancer yesterday, if it just had the positive stories I would be OK, I did hear about someone like me, young, 4 children, mets to bones......dying .....meh.
Question for you all, do/did you tend to get pain around your shoulder during treatment? Everytime I see onco he says it's nothing as bone scan was clear, but I am paranoid that it may of spread even on chemo. I keep in the back of my head that I am right handed and that's how I carry the baby.
Love to all,
Marymargaret
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Sylvia,
More questions for you. I am really interested in seeing the Doctor you were referred to in Bristol, do you still have the details? I might ask my BS if there is a clinic affiliated to my hospital regarding nutrition. My healthy diet is going to the way side at the moment whilst I am having treatment, I am eating what I enjoy and what I can taste, albeit it is a lot more healthy than before. Also do you have the contact details for the herbalist?
Thanks,
Marymargaret
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Hello
Michael,I
shall have a look at the updated research news on your website later
on.I
was glad to know that you had a good time in Tossa De Mar. It does
sound very nice.I
was interested to know that you did not think Brentwood and
Chelmsford had changed that much. I suppose the basic layout stays
the same but the shops change. Of course the places will be a lot
bigger. I always enjoyed going to Chelmsford at weekends and having
lunch in Bolingbrokes, which of course is no longer there. I really
got to know Chelmsford when we were in Essex from November 1993 to
January 2002. Raymond knew it from when he started to work as an
apprentice for Marconis way back in 1955. He remembers bicycles
clogging up the High Street. We were seriously thinking of moving to
Chelmsford but property was very expensive. We did think once of
buying an apartment overlooking the cricket ground. We probably have
a good quality of life here in Devon but we sometimes get bored and
feel a bit isolated. When we lived in Essex we used to go to Frinton,
Colchester, London and Canterbury. It is a bit restricted here.Summer
has gone now, in Exmouth, but it is still abnormally mild. We have
had an enormous amount of rain.Our
group here is gradually coming back together after the summer and we
all need to support Suewirral, who has had a really bad time, losing
her partner and then being diagnosed with breast cancer, but she is
getting through it and has finished treatment.We
still have Jacqueline1962, Marymargarethope going through
chemotherapy and Carolben going through chemotherapy for mets.You
will be interested in some information about lymphoma that is on page
50 of icon magazine in the section Cancer Watch, the latest cancer
research from around the world. The title is “Scientists find how
to 'shut down' lymphoma”. It says that lymphoma is one of the
fastest growing cancers in the western world and may rank in the top
3 by 2025. A lot of evidence points to a strong causal chemical link.
The scientists studied diffuse large B-cell lymphoma (DLBCL), the
most common sub type of non-Hodgkin lymphoma and their 'drug' was
shown to be able to completely eradicate the human lymphoma in mice
after just five doses.There
are a lot more details about this in the article and something about
Bc16, which makes lymphomas thrive. An inhibitor was developed to
stop Bc16.Bc16
is also known to be a controlling influence in breast cancer as well.I
think you will find all the information on line under canceractive.Sending
you best wishes.Sylvia
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Hello
Marymargarethope (Mary),I
was glad to know that you have now had chemotherapy number seven
because it means you have nearly finished. I hope you will not be
feeling too bad in the days that follow.I
hope all goes well when you see the breast cancer surgeon next week
to discus your surgery. I finished my chemotherapy at the end of
April 2006 and had the mastectomy surgery to my right breast on May
17th. I was in hospital for five days. I was kept there
until all the drains were clear and could be removed. I did not
suffer any pain.Looking
at my little reference book I have been reading up about the
different types of mastectomy. There are different types and they
are, a simple mastectomy, modified radical mastectomy, radical
mastectomy, and sub-cutaneous (nipple sparing) mastectomy and skin
sparing mastectomy. It does say that a radical mastectomy is hardly
ever performed any more and involves removal of the breast, the
axillary nodes and the underlying chest wall muscles. You can find
all the information you need in Understanding Breast Cancer by Prof.
Mike Dixon, published in association with the British Medical
Association. It is an invaluable book, costs £6.95 and can be found
in bookshops and pharmacies. I think what I had was a simple
mastectomy and seven lymph nodes were removed and just the first,
sentinel, node was positive. I had no problem with lymphoedema. In
the book there is a good diagram of how a simple mastectomy is done.The
book also explains about removing lymph glands during a mastectomy
and what to expect after the operation. If I can help with more
details let me know.I
should not worry too much about the stage. It is just a number and is
based on several factors. Apparently, to classify as stage 2 the
tumour must measure less than 2 cms across and have spread to the
axillary lymph glands or the tumour must measure between 2 and 5 cms
and the lymph glands may or may not be involved, or the tumour must
measure larger than 5 cms (2 inches) and have no evidence of spread
to the lymph glands under the arm.As
for stage 3, it is split into three groups, stages 3a, 3b and 3c. I
think it is all ill-defined and you should not worry about it. The
mastectomy will solve all this. I was never really told my stage, but
think it must have been 3a. Wait until you have had your mastectomy
and are told the pathology report. After my mastectomy I had an
appointment with the oncologist and the breast cancer surgeon
together and with beaming smiles they told me I had an excellent
pathology report and there was no visible evidence of disease, which
means a complete pathological response. They will not say you have
been cured. After that I went on to have my three weeks of
radiotherapy.Take
one thing at a time and do not jump too far ahead.When
I had finished radiotherapy I had a CAT scan and a bone nuclide scan
and all was clear. I had the same two scans after diagnosis and
before I started treatment.I am
going to have to take a break now but shall continue answering your
post a bit later on.Fond
thoughts.Sylvia
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Hi Sylvia and all the other ladies (and any gentlemen too) and thanks for your support and you including me in your email to one of the other ladies.
Sylvia my joint stiffness is mainly in my knees and shoulders. Marymargarethope my shoulder pain comes and goes particularly if I have walked next doors dog or lifted something. I am like an old lady when I get up from a sitting position and it takes an few minutes to get going, long car journeys are the worst! I have read that CMF can cause this and my BC nurse agrees so keeping active and hoping this will fade.
As for scans, I had a bone scan just before my chemo started, mainly because i told my onc of side and back pain which has since turned out to be kidney related. The bone scan was clear apart from arthritic changes in my right knee and right arm. I had an abdominal CT scan which was clear and was ordered for my kidney pains. These pains have been ongoing since January and I have seen two consultant urologists and had an ultrasound scan and a cystoscopy during chemo and nought found! However, due to this pain I have again been referred to a urologist who now DOES think it is kidney related and hope to get to the bottom of it, it has been really miserable with daily pain and microscopic blood and leucocytes in my wee when tested by my GP. I ave also had recurrent urine infections. My X ray and appointment with the consultant is next Friday... but wouldn't you know the pains seem to be fading fast! Hey ho I feel I still need to get to the bottom of things.
Sorry for wittering on but wanted to get it off my chest!! haha
Hoping you are all doing as well as possible. It is lovely to find people who understand our tnbc journey as we are all so rare ish and therefore very special. Just wish they could find some more targeted therapy for us.
Love and best to you all and it is great to read your helpful posts, Sue x
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Hello
Marymargarethope (Mary),I am
continuing with my post from earlier on. As for turmeric/curcumin, I
do not take any supplements for this but I do buy turmeric as a
simple spice powder and I put it in stirfrys or wholegrain basmati
rice when I have it. We do read a lot about it as a cancer
preventive, so it cannot do you any harm and probably a lot of good.
I find a lot of these supplements are very expensive and they must
have fillers so I try to limit what I take. For me the most important
supplement is the soft gel vitamin D.I
have also read a lot about all different kinds of mushrooms, even the
easily available ones and how beneficial they are. Again, I do not
buy the supplements but do buy shitake mushrooms on a regular basis
and have them in a stirfry or in an omelette made with organic eggs.
A lot of the lesser known mushrooms are not easy to find.I
have also read that it is not easy for the beneficial aspects of
turmeric to pass into the bloodstream unless it is turmeric extract.
I think we all have to make choices and I usually make up my own mind
what I am going to do and hope for the best.I
understand that you could not watch Stand up to Cancer the other day.
I have seen some of the advertisements and I do not like them at all.
They are too sad and negative. We have to concentrate on all those
who survive and they are more numerous than those who do not. We have
to remain positive, optimistic and do everything we can to prevent
this disease. We do not want to frighten people.I
did not have any pain at all during treatment but I hope that if
anyone had pain around the shoulder during treatment that they will
post in. All our cancers are individual and we all react differently
to treatment. My main side effect during treatment was fatigue and
the long term side effect has been the neuropathy in my feet. If you
are concerned about the pain, you must keep on about it to your
doctors. The pain could well be from carrying the baby I think.To
answer your other post, the doctor I saw in Bristol was Dr Nicola
Hembry and I saw her to get her advice and opinion about my breast
cancer when I was first diagnosed and before I had started any
orthodox treatment. She is an expert on nutrition and I had a long
consultation with her and came back with lots of advice on nutrition.
She did tell me that I would need the orthodox treatment. It was
through her that I started taking bitter apricot kernels and took
about 30 a day all through my treatment. She does have a website and
it is as follows:I am
not sure about hospitals and nutrition. Doctors do not study much
about nutrition and I think they are more at ease giving out pills! I
think you can get referred to a dietician but I have seen what they
tell you to eat during treatment and I would not touch it with a
barge poll with all its emphasis on dairy and sugar. I consider these
two things to be my enemies.Just
do what you can to get through your chemotherapy treatment.It
is strange that you should have asked for the herbalist with whom I
was in contact as well when first diagnosed. I did not see him but we
corresponded through letters and phone and it was through him that I
took wormwood and astragalus. He was a very nice gentleman but
unfortunately he is now deceased. He lived to a very good age, but
his practice still continues. I have recently bought one of his books
which I have yet to read. It is entitled “Breaking through the
untouchable diseases – Using applied immunology and herbal
remedies” by Gerald Green. You can find the details on line at:http://geraldgreenherbaltreatments.wordpress.com/
I
first found out about him from icon magazine to which he used to
contribute. That was back in 2005, when I was first diagnosed. He was
also in the first book I read when diagnosed called “The Cancer
Directory” by Dr Rosy Daniel. She also had a practice in Bristol.You
might be interested in the following that I found in icon magazine.
“12 foods that help fight cancer”. They are oily fish, carrots,
red and yellow peppers, mushrooms, egg yolk, broccoli, sunflower
seeds (and pumpkin seeds), tomatoes, pulses, Brazil nuts, beetroot,
garlic, plus three extras, sunshine, green tea and extra virgin olive
oil. All of these happen to be a very regular part of my everyday
diet, except garlic, which I am trying to add by way of garlic
stuffed olives. I cannot eat raw garlic cloves. If you look on line
at canceractive you will find detailed accounts of all of these.That
is about all for now.Have
a good weekend.Sylvia
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Hello marymargaret hope,
I should have said that Dr Hembry had a keen interest in cancer prevention and that after my visit she did correspond with my breast cancer surgeon who was the first person with whom I had contact on diagnosis with breast cancer by my GP.
Best wishes
Sylvia xx
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hi Sylvia
I went to see my oncologist on Friday and she has ordered a ct scan but I might have to wait two weeks because my unit is a scanner down and NHS staff are working to rule right now, I'm not sure how concerned I should be about the elevated ca-125 result but the plan so far is fibroid op on the 27th and then repeat the ca-125 test four weeks later to see if the op has made any difference to the result....
I'm a bit nervous about the ct scan this time as I have quite a bit of pain in the bottom of my stomach but of course it might be due to the fibroids and cyst so still playing the waiting game which you would think I'd be used to by now....but I'm not
I'm Just so done with hospitals and cancer and everything related to it, I feel like I'm just not being allowed to move on right now....sorry for being on a bit of a downer but it's hard to explain this to family and friends as they just don't get it
Take care
Gill
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Hello
Gill,I
was glad to know that you have been to see your oncologist but do not
think it acceptable that you might have to wait two weeks because
your unit is a scanner down and NHS staff are working to rule. It is
not right to put a patient through two weeks of anxiety about what is
happening to them. They have obviously not been through cancer
themselves otherwise they would understand the absolute nightmare of
having to wait. It seems that having to wait is getting worse and
worse in the NHS. I was talking to one of my neighbours here and he
has made two trips to Exeter to the hospital, only to find each time
that the pharmacy keeps forgetting to order medication. He is elderly
and frail and has had leukaemia off and on for twenty years. He is
once again waiting to be called back!!! It costs him £20 each time
for taxi fares.If I
were you I would phone back each day to see if there has been a
cancellation.I
would think that your oncologist should know whether the elevated
ca-125 result is of concern or whether it is related to the fibroids.At
least you have a date for the fibroid operation. We shall be thinking
of you on the 27th which is a week tomorrow. Will you be
in a different department for the operation? I do hope the number
will go down after the fibroids are removed.I
can understand how fed up you must be with all this cancer business.
I think we all get to feeling like that.Just
try to be positive and get this fibroid business and the ca-125 level
behind you. We do get set backs. I remember how I felt back in 2005
when I was told I had breast cancer and an over-active parathyroid
gland, both of which would require surgery. I had to get through the
breast cancer journey first and then in 2009 had to go back into
hospital to have one of the parathyroid glands removed because it had
a benign adenoma on it and was causing the gland to malfunction,
resulting in calcium going from the bones into the blood. I was
frightened I might not have a voice afterwards or a different voice.
Somehow I got through it all. Even now after nine years and four
months I do have anxiety about the cancer coming back and I am fed up
with all this time going for check ups. I just tell myself that at
least I am alive. I think we all just get fed up with all of it.Even
though you may not think so, you are moving on and you have got
through the cancer journey. Try to hang in there and get through
this. Keep pushing to try to get a scan earlier.Thinking
of you.Sylvia
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Hello
everyone,Just
posting in to say that I hope everyone is alright. There certainly
seems to be very little activity on the thread.I
went for my mammogram and ultrasound yesterday and I am glad to
report that all is OK. The consultant was very thorough with the
ultrasound and said everything was clear. I am now hoping that when I
go for my regular check up with my oncologist on May 1st
2015 that all will be clear as I shall have reached ten years since
diagnosis on June 20th. I have been told that if all is
clear on May 1st I shall be discharged. It has been a long
ten years. I shall carry on being just as strict with my diet and
making sure I stay active, as I know there are no guarantees.I
have been reading a book, recently published, that may be of interest
to many of you. It is entitled “The Cancer Chronicles – Unlocking
Medicine's Deepest Mystery” by George Johnson. It is a most
interesting book that covers all aspects of cancer.Wishing
you all a good weekend.Sylvia
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Hi Sylvia and congratulations on your fab news and thanks for your information. I went to see my urology surgeon yesterday ( you may recall I said i have had kidney problems since just after being diagnosed with breast cancer last December). The upshot is he is going to perform an exploratory surgery looking into my ureter to see if there is any obvious blockage. This has all been very depressing on top of my breast cancer as i have loin and side pain every day. ANYWAY, I do hope to get some resolution, just scared it is cancer again as I had thyroid cancer 19 years ago!
How are all you other ladies? I must admit to having probs maintaining a healthy diet. I think I am so fed up I just indulge every now and then. I did wean myself off sugar completely for about 2 months but have slipped back. Any words of encouragement gratefully received!! x
I am taking my daughter off to a posh hotel tonight where we can have some pampering, they even have a hot tub!! never been in one so that will be fun, now where's that swimming cossie...
Hope to hear from any of you ladies in the UK to get some thoughts and to share support, Sue x
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Hello
Sue,It
was nice of you to think of me and offer congratulations on my being
clear, and I do appreciate that so much, given all that you are going
through.I do
hope that all will go well when your urologist does some exploratory
surgery to find out what is going on. It must be very worrying to
you. Do you think that there is some connection with breast cancer
and kidney problems. We all know that chemotherapy is lethal and that
it causes untold problems in the body, so I would thing that
chemotherapy could cause almost anything to go wrong. When oh when
will there be a different treatment? I know we have these monoclonal
antibodies that are useful for some receptors, and that they are more
targeted but they are also just as lethal.I
can understand how depressing this must be when you have only
recently finished your breast cancer treatment and want to move on.
You must keep looking forward, telling yourself you will get through
it and get on with your life.I
was interested to know that you had thyroid cancer nineteen years
ago, so you have really been through it. What kind of treatment did
you have for the thyroid?I do
hope some of the other ladies on the thread will pop in to support
you as everyone has been rather quiet lately and it could be that
they have got fed up with cancer and have had to take a break. I do
hope they will all come back.I
think we can all understand that some of the ladies have ups and
downs with their diet. We can only try to do our best. I think we can
all understand that when you are feeling fed up you just want to
indulge in food that comforts you. I can certainly understand that
you need to find comfort in sweet food with all that is going on and
without your partner to support you. You did very well to wean
yourself off sugar for two months and do not worry too much about
having slipped back. I am sure you will get off sugar when you have
more peace of mind about what is going on with you. Do not be too
harsh on yourself. What are the sugary foods that you feel the need
to eat? You might try a few dates, figs or raisins to fill your need
for sugar. Grapes are very good as well if you feel like something
sweet.I do
hope you and your daughter enjoy yourselves at the posh hotel
tonight. I am sure a bit of pampering will help you tremendously.
Please let us know how you get on.I
hated going back to the hospital on Thursday. My husband, Raymond,
could not find anywhere to park, so he dropped me off and I went for
my appointment without him. That was the first time. I did not feel
secure and I just wondered how women get through these things on
their own. I think that was probably the last mammogram etc. to which
I am entitled, unless something goes wrong and I shall probably have
to go to the mass screening mobile unit. I think I have decided not
to have any more mammograms because of the radiation and because I do
wonder about how effective they are. I think the future should be in
thermography which is much safer. I doubt if this is being used in
the NHS.It
is a dull old day here in Exmouth and messy with leaves.Thinking
of you and sending loving thoughts your way.Sylvia
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Hello
everyone,I
was just wondering how all of you who post are getting on. I have
been reading some of the other threads and feel concerned that there
seem to be so many diagnoses, not to mention recurrences etc. I do
hope all of you are doing well.To
maryna8, how is everything going with you?To
Marymargarethope and Jacquline1963, have you now finished
chemotherapy and are you recovering?To
linali, are you back from your holiday in the US and how did it go?To
Jackpot (Gill), how are things going at the moment? I was wondering
if you had had your fibroid surgery.Special
hellos to Normandee, Chatterbox (Michael), adagio, Carolben,
Susaninicking and Sarahlou.Thinking
of you all and sending best wishes from a very sunless, dull Exmouth.I
would like to hear from anyone who has had thermography instead of
mammograms and proton radiotherapy which is said to be safer than the
usual radiotherapy.I
have just bought the book “Surviving Triple Negative Breast Cancer”
by Patricia Prijatel. I have also bought a French book which in
English is “The Defeat of Cancer” by Dr Laurent Alexandre and
have just finished reading “The Cancer Chronicles – unlocking
medicine's deepest mystery” by George Johnson. It is a really
interesting book. It has really good reviews.Keep
well all of you.Best
wishes.Sylvia
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I'm still here, just on the road again. Congrats on your clean bill of health Sylvia! I have exams coming up in December. Hold your breath time.
We are heading home tomorrow for the Freezy Munich winter. I have no room to complain this year...I've had a very long, warm, stand up paddling kind of summer! I had pretty much just finished chemo and was in the middle of rads this time last year. Waaaay better 2014 and my color has greatly improved!
Hang in there ladies. I do not forget any of you even when crazy busy.
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Hello everyone,
Just tried to catch up on all the posts from everyone - welcome to those who are new to the thread. This is a great source of information and encouragement, and I have missed it greatly. I have been having computer issues, but hopefully they are solved now.
First, congratulations, Sylvia on your ultrasound and mammogram results - that is simply fantastic - you must feel so relieved. You deserve to be healthy with all the effort you put in to your lifestyle choices and how you are always reading up and being informed. I was curious that you mentioned thermography as an alternative to a mammogram, because I was just starting to consider that myself instead of having mammos. I have not researched it yet, though. I just had my annual mammogram and it was all good, and I saw my oncologist just a few days ago and she has now switched me to 6 month appointments instead of 3 month appointments - so this is very encouraging - she said that it is reason to celebrate. It has been just over 2 years since the surgery to remove the tumour. I am grateful and very relieved.
I am still in recovery mode from the daughters' weddings - still somewhat tired, and trying to get out of the post-wedding mess - but it is getting better every day, and I am slowly starting to feel that my life is my own again. For several months during wedding preparations, I felt like my life was not my own - but it all seems like a dream now. I have started back into my exercise regime, having massage therapy and getting acupuncture for my shoulder injury which is still lingering.
Jackpot - your surgery is just coming up in a couple of days - wishing you well and do let us know how it goes.
Have a good week everyone, and I look forward to reading the posts on a more regular basis now.
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Hi Sylvia,
Great news re ultrasound and mammo always good to have them behind you.
We are back a week now and just about over the jet lag and change of temperature. It has been wet windy and grey since we got home!
Lots of our flowers have been blown down whilst we were away and I have a big job to do in the garden.
Our trip was busy, traffic wise , interesting, seeing all the historic southern architecture and we met so many welcoming people that made our trip special.We stayed with a couple, the husband is a vietnam veteran and a double cancer survivor. I think that his exposure to Agent Orange was considered a contributing factor in his cancer.I loved Savannah and the spooky, atmospheric feel of the place. It was very hot and humid and all the tree covered squares were a perfect place to sit and watch people go by. I loved experiencing the history and saw the church where Martin Luther King first made one of his landmark speeches.
We spent the last week with Damians sister and we hated to leave her but hope that she will in time come to visit us. It is difficult for her and we were the first people to visit since her husband died. So, so sad when two people were as close and happy as they were. Whilst there we did grocery shopping as she is vegetarian and her daughter vegan and I am so envious of the selection and quality of food. I think if I lived in Virginia food shopping could replace the buzz I get from shoe shopping!
Halloween is nearly here and we will be going to collect Oskar on Friday to bring him down for a week and I cannot wait to see him. He will be 4 soon and we will go shopping to choose his present .
I have been to the centre twice last week and on both occassions it was packed with at least 45 people. The first was a beauty day with natural products and make up and there were new people there. On Thursday we had a morning of Light facilitated by an Hindu nun. It was Diwhali and so appropriate. It was a lovely day theraputic and uplifting. Looking around there were many of the people who had reoccurance or spread but they were getting through it with the support of everyone at the centre. Both scary but comforting too.
Leigh is home and managed quite well bar a couple of crises whilst we were away. She is returning to Cork this evening to audition for a Xmas concert at his singing class. She is still involved helping out with the children at the Refugee centre.
Jackpot, I hope that the surgery goes well, will be thinking of you.
Welcome to new posters, it is a great source of support and release.
To everyone in treatment wishing that all will be as good as it can be and that you take all the help that you are offered.
Happy Halloween , I always want to be a child again .x
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Hello susaninicking
(Susan),I was glad to see
you back on the thread and thank you so much for your kind words
about a clear mammogram and ultrasound. Even after all this time it
is high anxiety time. I felt so vulnerable as I had the mammogram and
especially the ultrasound. I could feel my breathing going haywire.It was great to know
that you have had a good summer and that this past summer was so much
better than in 2013. how do you feel about heading home for Munich?I do hope that you
get the all clear in December. Please give us the dates so that we
can send you support.Thinking of you and
sending fond thoughts your way.Sylvia xxxx
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Hello adagio,
It is nice to have
you back on the thread. I am so fond of our little group. Thank you
for your kind words about the thread. It makes it all worthwhile.
Computer issues seem to be part and parcel of having a computer.
Raymond thinks that everybody should switch to Linux. He looks
forward to every new monthly issue of Linux Format magazine and reads
it like others would read a page turning thriller or perhaps long for
a cream cake. I have no idea what it is all about.Thank you very much
for offering your congratulations on my clear ultrasound and
mammogram. I mentioned it on the thread as an inspiration to others,
that they can get through all this. Yes, it is high anxiety time, but
it is a wonderful feeling to be told that all is clear.I think we all have
to do our best to try to stay healthy without it making us miserable
and restricting our everyday lives. I like simple food so it is not a
great effort as I am not tempted by lots of food that tempts others.
Today Raymond and I went out for lunch, as we had a very busy weekend
with work here running our apartment complex, so we decided we needed
a bit of relaxation. We had three large fresh sardines, pan fried in
olive oil and garlic, with some new potatoes and a mixture of
vegetables (broccoli, courgettes, peas, carrots and cabbage). With
that we had a big pot of green tea and a small fruit scone. I joked
to Raymond that our body would be filling up with omega 3s and the
telemeres would be lengthening. The sardines would be good for my
osteoporosis. Apparently long telemeres are a sign of good health.I have been reading
quite a bit about thermography and how it is very effective and safe.
I doubt that it is being used in this country under the NHS in state
hospitals. It is probably obtainable privately. I got to thinking
about it because Chris Woollams has often written about it. I was
also looking up a Doctor Nicola Hembry, whom I saw when I was first
diagnosed in 2005. she deals with cancer patients and believes in
integrative medicine, nutrition etc. One of the ladies was asking
about the doctor I saw, so I went to her website and was amazed at
all she is doing in the clinic of which she is a part in Bristol. I
saw that she does thermography testing. I wonder whether mammograms
do harm in the long run from radiation and how effective they are.
You read so much about women being diagnosed with breast cancer not
long after having clear mammograms. You also read about mammograms
picking up tiny lumps that may not cause problems, but women are
given drastic treatment anyway. Some authorities believe that DCIS is
a case in point and that it is a pre-cancerous condition. However, if
you are diagnosed with this and told you are going to be in a panic
and want treatment. A friend of mine has had DCIS over the years but
it has never developed into anything serious and she has not had
treatment. She is also a retired nurse who has been involved with
cancer. I suppose you just have to do what you feel is best for you.I would be most
interested to know whether thermography is obtainable in Canada where
there is a state run health service, which is provincially run. I
remember how efficient OHIP was when I lived in Ontario and we had
something similar in Quebec when we lived there. We were so impressed
with the health system in Canada. What is it like now in British
Columbia?In England the NHS
is going through a really bad time. We are over populated for such a
small island, especially in England, where the population is about 55
million. It is being abused I think by both patients and doctors. In
Scotland the health system seems much better with a population of
just 5 million. Wales has a population of about 3 million and
Northern Ireland about 1 million. I think the NHS is under funded and
there is a lot of waste. We are told that the NHS will be £30
billion in debt by 2020. We need to find a way to raise that money.
The trouble is the different political parties use the NHS as a
political football. I think the creation of the NHS in 1948 was our
proudest moment and all political parties have done it down. In
England they are slowly privatising it.I have had good care
and treatment over the past nearly ten years but I am glad it is
behind me.I was so glad to
know that you have had a good report from your annual mammogram and
that things went well with your oncologist. It is good to know that
you have progressed from appointments every three months to every six
months. That is about standard here. Keep up the good work. It is
indeed a reason to celebrate.I am not surprised
that you are still in recovery from your daughters' weddings but you
will slowly get back to normal. It is good that you ae getting your
life back and getting back into your own normal routine.Sending fond
thoughts to you in Vancouver and wishing you nothing but the best.Sylvia xxxx
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Hello linali
(Lindsay),It was nice to read
your post and welcome back. I shall reply in detail tomorrow as I
have run out of time for today.Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot
(Gill),I am just popping in
to say I am thinking of you. I think you had your fibroid surgery
today. I do hope everything went well.Fond thoughts.
Sylvia xxxx
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Hi everyone and hope all is going OK? Thanks for asking about me Sylvia.. Yes I had pappiliary thyroid cancer in 1995. I had to take a radioactive iodine capsule and be in a lead lined room for 5 days and couldn't have contact with my kids which was hard. i have been fine since and have an annual thyroglobulin test which tests for a protein which could tell if the cancer has come back. So far all well and my latest test a few weeks ago shows the level to be undetectable. I have to take a high dose of thyroxine though which has taken some tinkering with to get the right dose.
Yes my daughter and I had a fab weekend at a lovely country house where we enjoyed the hot tub under a rather cloudy sky and then on sunday we went out with a falconer and handled 2 falcons and had them swooping from the sky to land on our gauntlet covered hands. it was absolutely wonderful!! I want one! (not really but you know what I mean)
Sylvia I am back on track today with my diet so thanks for the encouragement. I am going to knock off the sugar and enjoy the other lovely stuff that is good for me. Bought some broccoli and I am going to make soup tomorrow and also bought some pumpkin seeds for snacking.
Love and best wishes, Sue x
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Hello
linali (Lindsay),It
is good to have you back on the thread. There is always a lot to do
when you get back from a holiday, especially in the garden, but you
will soon get back to normal. Getting over jet-lag can take some
time. I do remember how I used to feel going backwards and forwards
between Canada and the UK for seventeen years!!It
sounds as though you had a really interesting holiday and that you
took in a lot of history and culture. I do not know that part of the
US at all, but when living in Canada Raymond and I visited New York
state and New York, Connecticut, Vermont and Maine. We always found
the people very friendly and outgoing.I
can imagine that it must be very difficult for Damian's sister
getting used to life without her husband. Does she have many family
members over there?I
was interested to know that your sister-in-law is a vegetarian and
her daughter a vegan. I think we would all probably be a lot
healthier on a vegan diet. What is her daily food regime like? What
does your sister-in-law eat that her daughter does not eat? I think
it is probably difficult for a lot of people to change from a western
diet to a vegan one. Some people here call themselves vegetarians
when they eat fish. I find that a bit odd. We also have groups of
vegetarians who eat eggs and have dairy products, but I think that is
odd too. I have fish, prawns and organic eggs but try to limit them.
I would like to be vegan but I find that too many beans and grains do
not agree with me. My favourite way to eat is plain wild poached fish
with lots of vegetables.I do
hope you have a good time with Oskar. I was glad to know that all is
well with Leigh.I
was glad to know that your centre is so successful and that people
are coming to it. I know that helping women to look as nice as
possible during their cancer treatment is very important. You do tend
to feel unglamorous when you lose your hair and then you can also
lose your eyebrows and eyelashes. Somehow you have to find a way to
buck yourself up.It
is such a pity that the great experts have not found a way to stop
recurrence or metastases, as they are such a challenge to treat. I
seem to remember reading that this is due to circulating stem cells
that the chemotherapy or radiotherapy does not kill. The good thing
is that you can still live a very long life. I do feel strongly that
metastases should not be called terminal cancer and that it should
just be called stage 4. I am wondering what stage they call
recurrence.I do
hope you are feeling well after your holiday and look forward to
hearing from you again soon.Fond
thoughts.Sylvia
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Hello
Suewirral (Sue),I
was very interested to read what you said about papillary thyroid
cancer. That must have been a really tough time back in 1995. Did you
have to have the thyroid gland removed completely or did the
treatment kill off the tumour? Does the high dose of thyroxine have
bad effects on you? I know quite a few people who are on it for an
under-active thyroid gland and it tends to make them put on weight. I
am amazed at what can go wrong with the thyroid and parathyroid
glands. I was walking around with an over-active parathyroid gland
and had no symptoms. It was discovered by accident when I was
diagnosed with breast cancer. There is research that connects the two
but they do not seem to know which one causes the other. My breast
cancer consultant told me that I had the parathyroid problem before
the breast cancer and I am convinced it was one of the causes.It
was good to know that you had a lovely weekend with your daughter and
enjoyed the hot tub. I was intrigued by your adventures with falcons.
It is not something I could do.I
was glad to know that you are back on track with your diet. I think
we all have ups and downs and setbacks but we just have to pick
ourselves up and get back on track. You are doing well.Thinking
of you and sending fond thoughts your way.Sylvia
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Hello
Nisa,I
was interested to read your post and to know that you are researching
osteoporosis. I was wondering which thread you have been reading.
There are two threads where there is a lot of information about
osteoporosis. The forums are Invasive Ductal Carcinoma IDC in the
Parathyroid disease and breast cancer, and the forum Not diagnosed
with mets but concerned and the thread is High calcium. I have posted
a lot, especially in the High calcium thread and have corresponded
with sam52.If
you look at the thread I started in the forum Triple negative breast
cancer, Calling all triple negative breast cancer patients in the UK,
you will find a lot about nutrition and healthy eating. All the women
going through this thread have taken a great interest in eating
healthily. You are welcome to post here.I
tend to eat a very simple diet of mainly poached wild fish and lots
of vegetables and fruit, mainly organic. I also eat plenty of raw
vegetables, raw nuts and seeds, a little whole-wheat bread and soy
milk, almond milk and soy yoghurt. All this is plain, unsweetened,
fresh and organic where possible. I steer clear of meat, dairy
products and processed foods.Thank
you for your congratulations on my nearly ten years. You too can do
this.As
for your osteoporosis, try to get as much calcium from your food as
possible. I get this from the soy and almond milks, the soy yoghurt
and nuts and seeds. The soy and almond products are enriched with
calcium.In
addition, I take a Solgar calcium supplement everyday, along with
2000 IU of softgel vitaminD, also Solgar, and a magnesium citrate
supplement.I
have read really nasty things about bisphosphonates and would never
take them. With my supplements I also take a strontium citrate
supplement that I get on line.Orthodox
medicine usually prescribes bisphosphonates for osteoporosis. For
those who cannot take it they also prescribe strontium ranelate,
which I would also never take as it is unnatural.I
have a friend with osteoporosis who was prescribed bisphosphonates
for seven years and ended up with serious bone problems of the jaw.It
is well known that Arimidex, which is prescribed for post menopausal
women having gone through treatment for hormonal breast cancer, does
cause osteoporosis. Why not ask for an alternative? I am presuming
that you have had a DEXA scan to diagnose your osteoporosis.I do
hope this helps and that you will read the thread and find this
information.Thinking
of you and wishing you well. Let me know if I can help.Fond
thoughts.Sylvia
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