Calling all triple negative breast cancer patients in the UK
Comments
-
Carolben, sounds like you had a wonderful visit with family, and sounds like you have a large famly! So nice to know that support and love is there, even if at a distance!
I know a lady here who has mets on her lungs...she is doing very well with Avastin pills. I don't know if that is similar to the Zeloda. She is prepared to take it or something like it for the rest of her life, and it works well for her.
Sounds like you had a nasty 24-hour bug, the only good thing is these bugs are quickly gone, with only the after-effects to deal with. But not nice when you are already having trouble eating!
I will know more Wednesday about my situation, but one source has told me they are thinking of leaving off the Taxol completely. Another thought they might stick it onto the end in weekly treatments. I do know I would not want another go-around like my first one.
Hoping you are feeling stronger! Mary
0 -
Hi Sylvia
I am staying up to date with the messages. I am in Ibiza for a few days, I was here a few weeks after Janette died, I felt I needed a holiday then but it is nice to see it in a less distressed light. Ibiza town is lovely and the weather is good. It has been misty on the coast until evening but move two streets away from the sea and it is bright sunshine.
Best wishes to everyone.
Michael
0 -
Wednesday is my exchange surgery and I am so ready. Will check in with everybody when I can0 -
Shorfi, best of luck for today.....it must be nice to have something like that to look forward to after all that you have been through!
Let us know how it goes; best wishes, Mary
0 -
Hello Michael,
It was nice to hear from you and I hope you have a nice break in Ibiza. At least you will get some sun.
I was glad to know that you are keeping up to date with the posts.
Things are quiet at the moment and we could do with some more posts.
Do you have any new information about TNBC?
Fond thoughts,
Sylvia.
0 -
Hello shorfi,
I am just popping in to say that I hope all went well today. Let us know how you are.
Thinking of you,
Sylvia.xxx
0 -
Hello Mary,
I was wondering how you got on with your oncologist today. I do hope all went well.
I am thinking of you and wishing you all the very best.
Fond thoughts,
Sylvia.xxxx
0 -
Hello Peter & LIz,
I do miss your posts and would love to know how both of you are doing. Remember you can say anything you like.
I am thinking of you both.
Fond thoughts,
Sylvia.
0 -
Hello Gill,
How did your check up go today?
You are in my thoughts,
Sylvia.xxxx
0 -
hi Sylvia
I went for my three month check up today, I didn't get to see my usual oncologist and the doctor I saw didn't have a clue why I was there and I had to tell him it was just a check up...finally he examined me and asked me what the scars where on the right side were I had the reduction..Seriously how could he not know that? it's in my files, then he told me he'd see me in six months even though I was told id be seen every three months for the first year.....he didn't know I was triple negative....needless to say I didn't have much confidence in him by this point
I got a GP referral to the gym last week and started on Tuesday it's only £1 for all the classes and swimming is free and that's for three months and when it runs out I can renew it...I can only go when the doctor is on site which is three days a week but still a great deal
Fast shampoo is a shampoo and conditioner I got from boots that makes your hair grow quicker, I read the reviews and there was lots of good things said about it so I got some, I can't believe how fast my hair has grew and would recommend it to anyone, I've actually got it spiked up right now in a bit of a punk look while some of the other girls who finished chemo at the same time as me are still wearing their wigs
I'm glad your still enjoying an idiot abroad I think it only went to three series but he brought out a similar programme called "the moaning of life" I think there was five episodes which were really good as well if you see them on anywhere there well worth a watch
I've bought a new book called the natural cancer handbook have you ever read it? Theres everything in it and explains it all in detail...I can't put it down, it was a bit expensive at £20 but well worth it
I hope everyone going through treatment is doing ok
Take care
Gill
0 -
Hello Jackpot (Gill)
Thank you for popping
in. It does not look to me as though things were handled properly at
your first check up and that is not good. For the check ups I have
always seen my own oncologist over nearly nine years and she always
has my records with her. When I first started with the check ups
every three months, I alternated with my oncologist and my breast
cancer consultant surgeon. I saw my breast cancer consultant for the
first couple of years and then her clinical assistant. They always
had my records in front of them.Please do not be put
off over this first check up. Write to your oncologist and find out
about your next appointment. I know there may be differences with
different hospitals, but I thought the routine was every three months
for the first few years and then every six months. Often, I think a
patient is discharged after five years, that is what has happened
with some friends with hormonal breast cancer, but with TNBC it may
be longer. I have been seeing just the oncologist for the past two
years and was discharged from the breast cancer consultant. My
oncologist told me that I shall be discharged after ten years if all
continues to go well. That means I have just two more check ups.It is important that
you have confidence in the person conducting these check ups, so do
not leave anything to chance.I hope you enjoy your
time at the gym.I was intrigued about
Fast shampoo and I shall certainly check it out. It could be so
useful for patients after chemotherapy. I wonder what is in it.I was interested in
what you said about An Idiot Abroad. I do have a great laugh and was
in tears when I saw the one about Route 66 in the US. I had seen
Billy Connolly doing Route 66 on a three wheel motorcycle. I shall
certainly look out for The Moaning of Life. I love that title! I do
like Karl Pilkington and find there is a lot of depth in what he
says.I was most interested
to know about the book The Natural Cancer Handbook. I have not read
it but have looked it up on Amazon, found it most interesting and
have ordered a copy. It is a book that is right up my street. I know
I shall read it cover to cover. On one of the pages I looked at I was
concerned to read that misdiagnosis with breast cancer is 44%. That
is huge. It is important to get second opinions and check for blood
markers in the blood. There was a woman in the neighbourhood who
apparently went through cancer treatment, only to be told she had
never had it!!Keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
hi Sylvia
I thought you might like the book I suggested and thought of you when I started reading it that it was a book you would take a great deal of interest in, I have already found a lot of information from it and think it is a book that I will be dipping in and out of for a long time for information
I'm really enjoying the going to the gym right now, I go in for around an hour then go into the pool for an hour to an hour and a half I've managed to get my diet back on track this past couple of weeks and have already lost about 5 pounds,
I bought a nutribullet...have you heard of them it's like a juicer and blender combined turning fruit and veg into a drink with no waste, it liquidizes the whole fruit including the skin pips everything that a normal juicer wastes and apparently the most nutritious part of most fruits and best of all there's no mess to clean like a normal juicer....a really easy way to get a lot of fruit and veg into your diet you just add water or other liquid before you blend to make it drinkable
Regarding fast shampoo I think it's biotin that's the secret ingredient in it but I'm only guessing really, all I know is that it works and would recommend to anyone who has just finished chemo who wants their hair back just that little bit quicker
I've got a follow up with my surgeon on May 14th so I will wait till then to share any concerns I have about my first check up and hopefully I can be reassured then, I'm not too worried because I'm feeling pretty good right now
I hope everyone has a lovely day
Take care
Gill
0 -
jackpot - glad you are feeling so well and a getting the exercise in. I think that excuse helps considerably and it makes me feel so much better when I do it. Those bullets are amazing little machines - yeah for healthy eating!!
0 -
hi adagio
Thanx, it's quite amazing just how good exercise makes you feel isn't it....combined with my little bullet I'll have my waistline back to where it should be in no time
How's the arm now since your fall? Hope it's getting better
Take care
Gill
0 -
Hello Jackpot (Gill)
It was nice to hear from you. I am
eagerly awaiting delivery of this book and I am looking forward to
talking about it with you. I am sure it is going to be a very good
reference book. I do read a lot but I usually donate finished books
to Cancer Research, but I do keep some reference books. You might be
interested in a couple of books that I discovered in The Discount
Book Shop at bargain prices, even though they are right up to date.
One is The World's Best Kept Health Secrets by Readers Digest. The
other one is Disease Free, Proven Ways to Prevent more than 90 common
health conditions, also by Readers Digest. I keep reading bits of
them and picked up on one thing about breast cancer in the Disease
Free book. It says that you can reduce by 60% your risk of breast
cancer if you exercise regularly.I was so glad to know that you are
enjoying your time at the gym and I want to say congratulations on
already losing five pounds. I can see that you are very determined to
do your bit to keep well.I was very interested to know about the
Nutribullet. I did have a juicer before I was diagnosed with breast
cancer, but I had stopped using it because I got fed up with all the
cleaning up that was needed and the fact that it took out all the
fibre. If there is no waste with the Nutribullet it can only be good.
It is true that the skin and pips are very important. I am always for
grapes with the seeds in them like we used to have years ago, but
without success. The Nutribullet sounds like a good way of getting a
lot of nutrients. We are now told that we need more than our five a
day, and should aim for at least seven. In Japan I think they have
thirteen a day! I think I shall be looking into this machine.I was interested to know that the
secret ingredient in that Fast shampoo is biotin. The B vitamins are
very important. As you say, this shampoo sounds very useful to help
hair growth for those wanting to get their hair growth back more
quickly. Talking about hair, I was wondering how many breast cancer
patients now opt for the ice cap to avoid hair loss. Since losing
your hair during cancer treatment is so traumatic I would think a lot
of women might be opting for this ice cap.I do hope all will go well on May 14th
when you see your breast cancer surgeon. I hope you have a better
experience. I would think during the period of check ups that
alternate the oncologist and the breast cancer surgeon liaise in what
is going on.You do seem to be doing everything
right to get your life back on track.I seem to remember you have a holiday
planned in Turkey. When is that?I watched the summarising final episode
of series 2 of An Idiot Abroad. It was very interesting and funny,
especially the part with Karl Pilkington demonstrating his invention,
a kind of seat attached to his trousers. What do you think of his two
colleagues? Ricky has a hearty laugh, which is contagious.I do hope all is well with your family.
Have you kept in touch with any other
patients that you met during your treatment?Have a good weekend and keep in touch.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone
I hope you are all well and enjoying
the lighter, longer days and especially the mild weather. The gardens
here have really sprung to life and are a joy to look at.I hope all is well, adagio, over there
in Canada and that your arm is slowly healing.Have a good weekend everyone.
Thinking of you all.
Sylvia
0 -
Hello maryna8
I am just popping in to say that I hope
everything went well with your second chemotherapy on April 8th.
I do hope you are not feeling too unwell.Hello shorfi, I do hope everything went
well with your reconstruction on April 9th.I hope the two of you will let us know
how you are getting on.Fond thoughts.
Sylvia xxxx
0 -
Hello everyone
I have just found a
very good website about parathyroid disease. Those who have read my
thread for a long time will know that I was diagnosed with
hyperparathyroidism (an over active parathyroid gland) at the same
time that I was diagnosed with breast cancer. My oncologist
discovered this through doing a test for PTH because I had high
calcium levels and she was concerned that my cancer may have spread
to the bones. It turned out I had hyperparathyroidism which leaches
calcium out of the bones into the blood and causes osteoporosis. I
was told that by the size of the adenoma on one of my parathyroids
that this had preceded the breast cancer and that I had probably had
it for a long time. In 2009 I had a parathyroidectomy to remove the
adenoma, the calcium level normalised and I was told I was cured.I had read research
that believes that there is a connection between hyperparathyroidism
and breast cancer. Now on other threads I am reading posts about a
connection between thyroid problems and breast cancer.The website that I have
found is as follows.http://www.parathyroid-gland.com/
I would welcome any
comments. There are two other forums in which this disease comes
under discussion.IDC (Invasive ductal
carcinoma)Thread: Parathyroid
disease and breast cancer.Not diagnosed with a
recurrence or metastases but concernedThread : High blood
calcium levels.Thinking of you all.
Sylvia
0 -
Hello Sylvia
Thank you for your post.Term finally finished last week... a 15 week term -unheard of!
It is such a coincidence that you just posted about parathyroid disease as I saw my rheumatologist last week and he has suggested I have another DEXA scan. I am sure the osteoporosis will not have improved, so I am ambivalent about it.
The website you mention in your post above is interesting - and was written by one of Dr Norman's patients.He is the author of the very informative website www.parathyroid.com and was the basis of my quest for minimally invasive surgery when I had hyperparathyroid disease .Like you, I am convinced there is a correlation between hyperparthyroidism and breast cancer.
It was a beautiful day in London today and I was able to get on with seed-sowing for my allotment. I think this is my favourite time of the year in the garden, as all the trees start coming into leaf , although there is always a lot of work with hedges and lawns to be cut.
Will you be having a restful Easter? I will be visiting my father and there will be six of us there on Easter Monday.
With love,
Sam x
0 -
Hello sam52
I was so pleased to
hear from you as I have been wondering how things are going with you.I can imagine how hard
that fifteen week term must have been for you and I do hope you will
have a good break.It is indeed a
coincidence that I should have posted about parathyroid disease when
you have just seen your rheumatologist. I do not know what to say
about your having another DEXA scan, but let me know what you decide.
I tend to agree that osteoporosis will not show much improvement. I
also have doubts about the way the state of our bones is measured by
a DEXA scan. I do not know whether you saw my post when I said that I
had just read the April edition of the magazine What Doctors Don't
Tell You and it had on the cover Reversing Osteoporosis. There was a
long and detailed article inside all about osteoporosis and I am sure
you would find it interesting. The second part of the article will be
in the May edition, it will be out on April 27th. The
article does not have much confidence in these DEXA scans, nor in the
numbers used to diagnose osteoporosis. Apparently the DEXA scans are
not very accurate. It points out that bone mass does not necessarily
have anything to do with bone strength. It also says some drugs can
increase bone mass by 5% but because the actual bone structure has
been damaged it is not made stronger by the drugs.You can get copies of
this magazine in WH Smith and I would be interested to exchange views
with you on the article. The April edition is still in store.The article examines
six myths about osteoporosis. There is also a section How I Beat
Osteoporosis.What concerned me
reading this article is that the numbers for a diagnosis of
osteoporosis are being changed in order to put more and more people
on drugs such as bisphosphonates and another lethal drug, strontium
ranelate, which has nothing to do with the natural strontium that I
am taking..I also found the
website that I posted very interesting and very easy to understand. I
think that Dr Norman knows what he is doing and saying and I think it
is very useful to have input from one of his patients. I was very
concerned reading about all the risks of having full surgery for a
parathyroidectomy. I am so glad that my breast cancer consultant and
endocrinologist knew what she was doing and that I was alright. I do
hope that now, five years on, only minimal invasive surgery is being
done.I do think that
everyone who goes for a normal full blood test and is told they have
high calcium blood serum should get that checked out by having a
parathyroid hormone blood test to see if they have high PTH. A person
does not want to be walking around with hyperparathyroidism with no
symptoms and running all kinds of risks with their health, such as
pancreatitis, kidney problems and of course osteoporosis.As far as the DEXA scan
is concerned, I think it is useful to have one before and after
cancer treatment, to find out if you have developed osteoporosis or
osteopenia due to your treatment. I still think my treatment may have
played a part, because I had no height loss until after my breast
cancer treatment.What do you think about
thyroid problems and development of breast cancer? I can see there
could be a problem. I think we do not know enough about what
malfunctioning hormones do to our body and the role they play in
chronic disease. I often wonder how long I had had
hyperparathyroidism before my oncologist diagnosed it in 2005. All I
know is the endocrinologist told me it definitely preceded the breast
cancer.It is good that we are
having some nice weather and I am glad that you were able to get on
with some work on your allotment. It is a lovely time of year as
nature comes back to life. I did three hours of gardening work in the
grounds yesterday.We shall be at home for
Easter and trying to take things quietly. The seafront in Exmouth is
going mad at the moment with the sunshine.I do hope you have a
good time with your family. It sounds as though you are going to have
a nice family gathering.Please keep in touch.
Love.
Sylvia xxxx
0 -
Hello sam52 again,
I forgot to say that a friend of mine had trouble with a wisdom tooth and had to have it removed at the hospital. It transpires that she has that necrosis of the jaw caused by bisphosophonates, namely Fosamax. Her GP left her on them for seven years. She has been on very strong antibiotics. When she returns to the hospital she may have to have bone removed from the jaw.
I am so glad that I have repeatedly refused to have anything to do with bisphosphonates.
I see that in October you will have reached thirteen years since your breast cancer diagnosis. Do you still worry about it coming back. It still lurks in the back of my mind.
Happy Easter,
Love, Sylvia xxxx.
0 -
Hi Sylvia
I had a lovely time in Ibiza, the weather was perfect.
I have been trying to upload the new website I have constructed but for some reason it just will not display. I have lots of news and research stories about TNBC that I was keeping for the website but I guess I could just post the links here; Do you think that would be useful?
I was reading about "Fast Shampoo" and wanted to stick my oar in from a former hairdresser perspective. Hair is dead. There is nothing you can put on your hair that will make it grow faster. You can make it appear nicer for a short while by applying products such as conditioner which coat he hair. The condition of ones hair comes from ones general internal health. the only things that will stimulate hair growth are heat and massage of the scalp so as to increase blood flow.
Michael
0 -
Hello Michael
Thank you for your post
and I was glad to know that you had a lovely time in Ibiza and that
the weather was perfect.You are most welcome to
pass on news and research stories about TNBC on this thread, as we
are all trying to keep up to date. Please post the links here and I
do hope that you will find a way of displaying them on your website
as well. It definitely would be most useful. We do need to know
whether there have been any big discoveries about TNBC and whether
there any different drugs in the near future that will be available
to patients.Thank you for your
professional advice about hair. I have also been reading about FAST
Shampoo. It was not available in Boots in Exmouth, but there was
information about it online. The comments from people who had used it
were most interesting. Some loved it but others thought it damaged
their hair. I could not believe the price at £30 for a bottle of the
shampoo and separate conditioner. The magic ingredient seems to be
biotin, which I believe belongs to the B group of vitamins.I do agree with you
that the condition of your hair comes from general internal health
and I think the way to that is through good nutrition. I think that
applies to skin and nails as well.What you say about
stimulating hair growth through heat and massage of the scalp to
increase blood flow makes sense. I suppose that means that the Indian
head massage must be good. I know they do offer that as one of the
complementary treatments at some of the cancer charities. I am not
into things like that but when I was going through treatment,
Raymond, as my carer, had an Indian head massage (he has never been
quite the same since LOL). What kind of heat treatment would you do?I do hope you are well
and in good spirits.Fond thoughts.
Sylvia
0 -
Hi
I will look through the articles I have been saving and post any that I think are important.
When I mentioned heat in relation to hair growth I was thinking of the sun and warm weather. Hair grows faster in the summer. I can certainly recommend one thing that will make hair, skin and nails fantastic and that is brewers yeast tablets. Don't buy anything with a fancy name, just straight brewers yeast, they are dirt cheap and you can take as many as you like.
I am afraid there is a lot of psychology involved in hair. If any famous hairdresser cut your hair and charged £10 most people would think it a pretty average haircut but if you paid £110 people would think it a work of art. The same applies to hair products. I doubt if the addition of biotin (whatever that may be) adds more than a few pence to the cost of making a shampoo but no company is going to convince people that their hair is growing faster if they charge £1.99 for the shampoo.
Michael
0 -
Hello sam52
I just wanted to say
that since we have got back on the subject of hyperparathyroidism,
and a connection with breast cancer, and since I read a post in which
someone said that her oncologist had told her there was a connection
between thyroidism and breast cancer, I have been doing a bit of
research (as is my nature)! I found out a few interesting things. I
have read that women with hypothyroidism should be at a lower risk of
breast cancer, but that women with hyperthyroidism are at a higher
risk. I felt concern about this as one of my nieces was diagnosed
with hyperthyroidism when she was in her teens. The strange thing is
that although women with hypothyroidism should be at a lower risk,
they have discovered that women with breast cancer are more likely to
have hypothyroidism than other women. This appears to be perhaps
connected to their cancer treatment. Some of the articles I have read
get a bit complicated and one says there is no evidence that this
association between breast cancer and thyroid disease is cause and
effect and it makes better sense to think that the thyroid disorders
associated with breast cancer and the cancer itself are related to a
common predisposing factor. Does this sound familiar? I am sure you
will remember from the first article we read about
hyperparathyroidism that it said that one may not be causing the
other and there might be a predisposing factor for both, such as
x-rays in childhood.What amazes me in all
of this is all the problems caused by malfunctioning hormones.So far I have not read
anything about thyroid problems etc. and a connection between
receptor status in breast cancer.Hoping to hear from
you.Love.
Sylvia xxxx
0 -
Hello Michael
I shall look forward to
reading some of the articles.I was very interested
in what you had to say about hair growth and how sun and warm weather
is good for hair growth.It is strange that you
mentioned brewers yeast tablets and how good they are for hair, skin
and nails. Raymond and I used to have either the tablets or the
de-bittered brewers yeast powder for many years. I think we may go
back on them, either powder or tablets. They are, of course, B
vitamins.I do agree with you
about the hairdresser and charges. For example, I do not think much
of David Cameron's hair cut for which he pays a fortune and yet the
haircut is very average. In fact, one of my brothers who has a lovely
crop of curly hair, got himself photographed in the local paper and
criticised the cost of David Cameron's hair cut. He said he went to
one of our local hairdressers and got his cut and blow dried for
about £10 and that included a cup of coffee.I do agree that women
in particular are being exploited over the cost of hair products and
that they are paying for the brand.The latest fad in
shampoos seems to be the benefit of caffeine in the shampoo. I was
reading one such shampoo which was saying that the caffeine was
beneficial for post-menopausal women because it balanced out the
oestrogen and progesterone and counter-acted the progesterone
dominance that took place in women after the menopause. Any
comments??That is about all for
now.Best wishes.
Sylvia
0 -
Hi Sylvia
I am not sure if caffine would b of benefit but I doubt if it does any good applying it to the hair or scalp.
Here are a few articles for today:
http://www.wearecentralpa.com/story/d/story/new-op...
http://medicalxpress.com/news/2014-04-highlights-d...
http://medicalxpress.com/news/2014-04-tumor-suppre...
Michael
0 -
-
Hello Michael
Thank you for all your work with posting the links. I shall try to get through them in the next few days.
I hope others on the thread will appreciate your efforts, read the links and post their comments.
I was concerned to see the following headline in the Good Health section of the Daily Mail on Tuesday April 15th. The heading of the article was "Scandal of life-saving NHS cancer machines lying idle" by Rachel Ellis. Above the title was "New high-tech radiotherapy can kill cancer more effectively, so why are patients being denied it?" I shall post more about this latter.
I also recently read that medical induced illness was the third leading cause of death in the US, after heart disease and cancer. I would not be at all surprised that it is the same in the UK.
This thread is not very active at the moment and there are no newly diagnosed patients posting and I would like to think that is good news, but I wonder whether there is so much information around now that people are not posting.
Best wishes.
Sylvia
0 -
Hi Sylvia
It has been a long while since I posted but thought I would just let you know I had my 6 month check up this week and my Breast Surgeon was very pleased with me and said everything was fine and I had healed exceptionally well. Very thorough physical examination of remaining breast and also rigorous searching for any enlarged lymph glands both sides, collarbone, neck. No blood tests but I have had these in the past. Just thought I would post!
Don't know if it's just me, probably not, but I get really worked up and nervous before these checkups and I am quite irritable to live with (poor Bernie!).
Something may be of interest - My BS (who is Clinical Director of Breast Surgery at the hospital) has asked if I would be willing to be a case study for a Thesis she is writing. I have asked for the removal of my healthy breast, and have never changed in this desire having asked for this outcome at my very first appointment with her. As I am not BRAC carrier this is not an easy thing for her to perform and needs justification to Health Authority, with reasons why. To this end her Thesis is on why a substantial minority of women seek bi- lateral MX (who do not carry the BC gene) over breast conservation and reconstruction. It would appear she is happy to go ahead with my prophylactic MX at the end of this case study. Will let you know if I discover anything interesting in the months ahead.
Good luck to everyone going through treatment - I am keeping up to date with all the posts. Happy Easter Sylvia and to everyone else,
Love Norma
0