Calling all triple negative breast cancer patients in the UK
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Hello Sam
Thank you for your good wishes. I hope 2013 will be a good one for you, less hectic and with more time for yourself. Have you made any New Year's resolutions?
Love.
Sylvia xxxx
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Hello Liv.
It sounds as though you saw the old year out in style.
I do hope 2013 will be kind to you and everybody on this thread and on the bc.org forum. There are so many women on the forum having a very rough time and I know our hearts go out to all of them. There has to be a less devastating way of treating this disease than the present treatment.
What is happening about your Navelbine treatment? How often do you have to have it? Please let us know how you get on.
Best wishes.
Sylvia xxxx
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hello lovely cyber sisters. (once more)
wishing you all the best for the new year and we all know cancer sucks but lets try and kick the critter to smitheroons..united!recovered very well from last nights celebrations. woke lunch time and had tuna & eggs on toast.
went to the beach and walked for a couple of hours. was delish down the beach, temperature has now dropped to low 30's for the start of 2013. looks like the hot temps of december 2012 in aust have moved on, on the stroke of midnight, it was quite bizzarre.
last night met some english girls that were dancing in a club and we were sitting outside and every 30 minutes they would come outside to cool down a bit. they were so hot and their poor feet were swollen, mind you they both had 10inch heels on. they were on working visas and were heading up north to port hedland which is even hotter than perth. told them they would be much better off to go down south, lots of work vege picking, loads of backpackers down there and im sure they would have a ball, its too hot for aussies in these extreme heats so they wouldnt stand a chance.
chemo meds navelbine for me appears ok.
taking xeloda for three weeks orally and taking navelbine orally also,
1st week 50g, navelbine only the once.. one week later if bloods ok take second dose 50g.
only a wee bit of nausea's with navelbine, usually goes within the hour.
today ive finished the 3 weeks and now have a week off., then see onc and do bloods, if ok to continue.
nothing like my first 6 months of chemo IV when diagnosed, that was awful, never forget the taste in my mouth and the first dose i was bed ridden with exhaustion and quickly learnt to stop and rest when that feeling came and before i knew it apart from the ghastly taste i could get on with normal things after day 9.
overall navelbine xeloda seems to be ok for me, tiny bit of foot hand syndrome, a bit of burning but again that subsides within a few hours, a bit of nausea's and a bit tired but i think if you eat too much junk the side effects will increase 10 fold so i try to eat properly 90% of the time, drinks lots of water, do your exercise and i believe you will come out much better....my downfall is hot chips love them and when i let my guard down thats what i have.
sylvia you mentioned about fats, i often say no fats which is wrong, should be saying no saturated fats, i have lots of good fats in tuna, nuts, avacados..
still have my glass of red every day not because of the healthy aspects but because i like it and its just a bonus that it does have some very beneficial health aspects if drank in moderation and you dont have a liver condition or a drinking or weight problem. so i say titties and bottoms up!~
number 1 goal down said goodbye to 2012 with a blast....next?
my friends, try and be strong - try and be positive
xXXx
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Hi all,
The one thing I found I struggled with over the silly season is the lack of socialising. I loved a good tipple and thoroughly enjoyed going out quite a bit over Christmas and New Years. Granted now that I have a new baby the quantity of nights out would be greatly reduced anyway but I missed not having a drink. I really did. I worry about having a drink though because i don't want my body to be put under any unnecessary difficulties but I wonder is it ok to drink alcohol-free drinks and not have to worry about poisoning my body? Any suggestions would be greatly appreciated.
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hello mumtobe
everybody is different, for me i have changed a lot of things since being diagnosed, alot not by choice, im just not the same as i was before with energy levels and now completely accept that and work around it.
what i have been made very aware of is for many that do everything by the book, never smoked never drank, full blown vegetarians, exercised everyday, sadly, but they too are victims of this horrid disease and many have become angels...you do need to look after your health more than ever but you still have to live today whilst we are alive and dont let the cancer take all the joys you had.
for me i still have my drinks in moderation, i refuse to let this demon take away me completely and ive chosen to do most of what i did before diagnosis in moderation.
so its really your call how you want to tackle your cancer and i believe only you can make the choices of alcohol consumption etc.
i only drink red wine and there are some known proven health aspects in red wine only. for those that dont have a liver problem, a alcohol problem or weigt problem red wine and resveratrol has many health benefits drank in moderation.
& surely for you mumtobe alcohol free drinks are fine as long as they are not laden with sugar.
xx
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Hello Mumtobe (Carol).
I agree with Liv that we all have to decide what we are going to do regarding our lifestyle after a diagnosis of breast cancer. Whatever we do we have to make our everyday life liveable and not stressful.
None of us will ever know for sure what caused our breast cancer and it could be that it was just the luck of the draw. We have lists of possible risk factors but because something is a risk factor it does not mean it caused our breast cancer. I think we have discussed a lot of the risk factors in the past on this thread, but we cannot really reach any conclusion.
All I can say is that my breast cancer surgeon told me on diagnosis that I should not have had breast cancer and family and friends told me that I was the last person they would have thought would have breast cancer. It just goes to show.
I was always careful about my food, did not drink much, except for an occasional glass of wine, and was always active. You know from my posts that I do not drink any alcohol and have not done so for about nine years. I do not eat meat and do not touch any dairy products. I think growth hormones in meat and dairy may have a connection with cancer. I eat a little fish, some organic eggs, loads of fruit and vegetables, organic when possible, nuts and seeds, beans and pulses and some grains. I also drink unsweetened soy milk.
If you feel like a little wine when socialising, and you feel it makes you happier, then have some. I would not drink any while going through chemotherapy.
In the western world we have been conditioned to thinking that having a good time means drinking alcohol. That is what Christmas and New Year is about for a lot of people. If you want non-alcoholic, then I agree with Liv that you should get unsweetened. You can get red grape juice, unsweetened and not made from concentrate. I have this from time to time and put a little in a wine glass and top up with fizzy water, such as Perrier. The red grape juice must have resveratrol in it but I regularly get mine by having some red or black grapes every day.
I imagine that you will be restarting Taxol this week, so please let us know how you get on.
Wishing you well.
Sylvia xxxx
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Hello Liv.
Thank you for your post, especially the details about your treatment. It is so useful to have up to date accounts of people's experiences as they go through breast cancer treatment.
I am sure none of us will ever forget our experiences, but nothing beats experiences that are happening or have just happened. I do agree that we cannot let this awful disease control our lives, but we do have to be a bit careful because the treatment has compromised our bodies and I do not know whether we really completely recover.
Best wishes.
Sylvia xxxx
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Hello carlads (Carla).
Just popping in to say we shall be thinking of you when you start chemotherapy on January 7th.
Hello also to Placid44, hoping all goes well with you during your four remaining weeks of Taxol.
Best wishes.
Sylvia xxxx
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Good morning and Happy New Year to you all, excellant advice from Liv and Sylvie for mumtobe.
I do drink, moderatly, but only Red Wine. I discussed this with all my Doctors and they agreed that it was not an issue as long as my health checks (heart, liver, kidneys) continued to be clear.
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hello everone,
think this might be a dumb question but im confused, doesnt take much these days!
im a ibc trip neg, if i have progression/mets, will the mets still be trip neg inflammatory, say i progress to liver or bones is that too trip neg inflammatory?
bernie _ lovely to see your beautiful face around.
xx
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Hi everyone
I hope you all had a good holiday time.
I wanted to post a link to an interesting article. http://www.medscape.com/viewarticle/776894?src=rs
It is on Medscape but it is free to create an account.
Good health to all.
Michael
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hi everone,
chatterbox great video thx.
sounds like common sense to me, we do need more treatment with such high risk of mets.
thats exactly why i demanded more and fortunately at the same time with new onc i had a blood clot and they had to do xrays and found a few nodes on my chest wall were back.
been on new lots of chemo now for 3 months and even if those nodes disappear i will ask to stay on chemo as long as i can handle it.
very encouraging video.
xxx
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1. If you are choking on an ice cube, don't panic. Simply pour a cup of
boiling water down your throat and presto! The blockage will be almost
instantly removed.
2. Clumsy? Avoid cutting yourself while slicing vegetables by getting
someone else to hold them while you chop away.
3. Avoid arguments with the Mrs. about lifting the toilet seat by simply
using the sink.
4. High blood pressure sufferers: simply cut yourself and bleed for a while,
thus reducing the pressure in your veins.
5. A mouse trap, placed on top of your alarm clock, will prevent you from
rolling over and going back to sleep when you hit the snooze button.
6. If you have a bad cough, take a large dose of laxatives, then you will be
afraid to cough.
7. Have a bad toothache? Hit your thumb with a hammer, then you will forget about the toothache.
8. Everyone seems normal until you get to know them.
9. AND..... Sometimes we just need to remember what The Rules of Life really are: You need only two tools: WD-40 and duct tape. If it doesn't move and it should, use WD-40. If it moves and shouldn't, use the duct tape.
10. If you woke up breathing, congratulations! You have another chance!
11. And finally... Be really good to your family and friends. You never know
when you are going to need them to empty your bedpan.0 -
Hello Bernie
Thank you for your posts. I did have a good laugh at all the jokes. It sets us up for a good week ahead and let us all be as optimistic as we can and see the glass as half full rather than half empty.
The weather is very dull here in Exmouth and no sign of any sunshine, but I have to be optimistic that the sun will soon set its sights on little old Exmouth.
What are your plans for the coming week?
Wishing you well.
Sylvia xxxx
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Hello Liv.
Thank you for your posts.
Your question is certainly not dumb. The trouble is none of us really knows which way cancers will go. I remember talking with my oncologist, whom I admire and respect, about my triple negative breast cancer and she told me that my breast cancer had not necessarily started off with negative receptors as cancers are mutating all the time.
I do know from the various threads that all kinds of things are happening. Some women have a primary tumour that is TNBC and then may have a new primary in the same breast or the other breast and it may be a hormonal positive one. Some breast cancers are a mixture of positive and negative and some may have some ductal carcinoma in situ (DCIS) mixed in. It looks as though all combinations might be possible.
If there is a local recurrence of the original breast tumour, I am not sure whether it would be the same receptor status as the original one. I get the impression that, again, anything is probably possible. I know from my oncologist that in my own case, because I had a mastectomy, that she told me the most likely site for local recurrence would be along the scar of the mastectomy surgery and that a rash in that area is a likely sign of recurrence.
As for spread, metastases, from the original site of the primary to a distant site such as brain, lungs, liver or bones, again I am not sure, but tend to think it is probably the same as the primary. You have to remember that we are not doctors on the thread, so can really only speak from our own experiences and reliable information that we have researched thoroughly.
Obviously there must be a way that oncologists know whether tumours, in other parts of the body after breast cancer, are secondary ones (metastases) from the original site or a new primary. I know that the mother of a friend of mine had some kind of breast cancer, and then had kidney cancer. I remember her telling me that the kidney tumour was a new primary.
We have to remember that, according to what I have read, cancer is a systemic disease of the whole body and the way we are diagnosed with a certain type of cancer is all to do with where the cancer cells have chosen to lodge themselves. I have even read that it is possible that in the future we shall not be diagnosed with cancer according to the site where it has lodged. Who knows what will happen with cancer diagnosis and treatment in the future.
If anyone can answer Liv's question with certainty, please come on board and let us know, especially if you have been diagnosed with triple negative inflammatory breast cancer.
Concentrate on telling yourself that you are going to be alright.
I really liked your thumbs up smiley!
I was really impressed to get a PM from your Dad. I shall be answering it later on today. You are lucky to have such a caring dad.
Fond thoughts are coming your way.
Sylvia xxxx
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Hello Michael.
It is nice to see you back on the thread and I hope that Christmas and New Year was good for you. I hope that 2013 will be a good one for you.
I have just had a look at the Medscape link that you were kind enough to post and I did find it interesting. Medscape is a good site that I often look at and can recommend to others. I did listen to the video and found it informative. I think it confirms what I have just posted to Liv that cancers can change. For this kind of research to work in this country, I think we would need much more careful check ups and more screening. Without a more careful watch on what is going on in a patient's body after they have finished treatment for primary breast cancer, we do not really know what is going on within us until we have symptoms that alert us to the fact that something is not normal. In my own case it is more than seven and a half years since my diagnosis and after tests immediately after treatment and being told there were no visible signs of cancer in my body, I have had only basic physical checks and regular mammograms. Who knows what could be going on in silence in my body. I do think a possible way forward is very regular blood tests to check out the level of cancer markers. When I have asked about this I have been told that a blood test is only good for that day! I must admit I do not really understand this. You could say this about any blood test. I seem to remember reading that 38 is the normal level for blood cancer markers, so it seems common sense that, if this level is elevated, something might be going wrong. Not even during treatment were cancer markers mentioned to me. I know that in the US patients get cancer marker readings, at least those that are covered by insurance. If you do not have insurance I do not know what happens. I just feel that in the UK checks should be more stringent to keep a look out for possible signs of metastases before this state becomes difficult to treat and impossible to cure.
I shall be thinking of you on January 8th and hope all goes well.
Best wishes.
Sylvia
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Hello everyone.
I hope you are all getting back to normal after Christmas and the New Year. I hope the UK will get back to normal tomorrow as people get back to work and most schools start a new term.
The following short article caught my eye in the Daily Express this past week. It is written by Jo Willey, Health Editor. The title is New jab 'to hunt down cancer cells'. It starts off with the following:
“A cancer-busting jab which triggers the body's immune system to seek and destroy tumour is a step closer.
Scientists have created potent cancer-fighting cells in the laboratory, which could be injected into patients to allow the body to fight the disease for itself.
The breakthrough could lead to treatment that would avoid the need for devastating surgery and chemotherapy.
The body contains immune cells programmed to fight cancer and viral infections, but these cells often have a short life span and are not numerous enough to overcome attacks by particularly aggressive cancers.”
Apparently there are developments in stem cell technology that can create immune cells with long lifespans that can recognise specified target cancer cells.
What has to be tested is whether these T-cells can kill tumour cells but not other cells in the body.
If they do this opens up the way for these cells to be directly injected into patients for therapy and it is hoped that this will be in the not too distant future.
If you want more details you might want to look at the journal Cell Stem Cell.
I hope you find this useful.
I have just bought the January edition of the magazine What Doctors Don't Tell You. It is full of useful information that I shall be posting over the coming weeks. One article of particular interest is how high fever kills cancer. It is entitled “Some like it hot - the extraordinary link between cancer remission and high fever”. For those in the UK who might want to buy the magazine it is on page 26. The price is £3.95 and it is worth every penny in my opinion. On line try www.wddty.com.
I hope all is well with linali (Lindsay), Mumtobe (Carol), FernMF, sam52 and Kymn (I have not heard from you in a while. I hope all is OK with you in Alberta).
I hope that any of you that are unlucky enough to be diagnosed with triple negative breast cancer receptor status with any kind of breast cancer will make use of this thread to help you through treatment. The thread has to be interactive to be of real use.
Best wishes to everyone.
Sylvia.
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Who is Silvia? What is she,
That all our swains commend her?
Holy, fair, and wise is she;
The heaven such grace did lend her,
That she might admirèd be.Is she kind as she is fair?
For beauty lives with kindness.
Love doth to her eyes repair,
To help him of his blindness,
And, being helped, inhabits there.Then to Silvia let us sing,
That Silvia is excelling;
She excels each mortal thing
Upon the dull earth dwelling:
To her let us garlands bring.this is what my father was implying in his PM to you, he replaced the what with where~~~
xx
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hello lovelies..
bernie thx for the laughs, that was a good one.
sylvia thx for post regarding what type of cancer, its just so complicated but im sure they could easily tell us with a few tests but its probably the $$factor comes into play.
just had ct scan on chest abdomen pelvis and appointment with bloods on tuesday for results.
be interesting to see how the nodes are going on the chest since new chemo's or perhaps my bicarb soda - maple syrup concoction.
how fantastic this would be "A cancer-busting jab which triggers the body's immune system to seek and destroy tumour is a step closer"
well that would definitely make for a 'HAPPY NEW YEAR' so basically it targets our own immune system making it stronger to be able to fight the cancer cells? nice thought to finish the day off.
ate healthy today loads of vegs, double broccoli and power walked and light weights at the gym..
good day!
sylvia love your "little you, sitting there researching away"
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Hello again Liv.
Thank you for posting that verse from Shakespeare's play the Two Gentlemen of Verona. I think it was his first play and is a comedy about love and friendship. It brought back memories of when I was a child in London and went to see my father in hospital. That was in the days of small hospitals, strict matrons in starched uniforms and the whole place smelling of carbolic. The matron asked me my name and when I gave it to her she came out with those lines about Who is Silvia, what is she...?
I do hope you will have good news from your CAT scan and that your blood test will be good news on Tuesday.
I was interested to read about your bicarb soda-maple syrup concoction. What else is in it? I take a teaspoon of bicarbonate of soda in a little water from time to time. I have been doing this since reading about it in one of the CANCERactive e-mails.
Are you doing any other things to help you with the cancer and trying to prevent it from coming back? Last year there was a lot of news about taking metformin (the most common medication for type 2 diabetes) to prevent breast cancer from coming back, as well as low dose aspirin. I think for these two you need to get medical advice and not just take it.
I was glad to know you ate healthily today and broccoli is supposed to be the number one vegetable. I read that to make it even more powerful we should eat it with some purple sprouting broccoli.
I really like your emoticon and I am imagining good day said with an Australian accent!!
From what your dad said, you must have British roots. Were you born in Australia?
Somewhere in Australia I probably have a long lost cousin on my father's side through his father and stepmother. I know virtually nothing about that side of the family, except that the cousin went to Australia.
Congratulations on all the exercise that you do.
Best wishes.
Sylvia xxxx
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hi sylvia & everyone ((hugs))
the lovely verse reminded you of your childhood days in that hospital and when you said about the collars it reminded me of my beautiful mother, mum is a 20 year breast cancer survivor & was raised by 3 aunties, spinsters till the day they died. my mothers mother had died of breast cancer when she was only 3..mum tells me stories of how strict those aunties were, she never had much love by them or her father but was very well taken care of. you just reminded me of mum's father who mum says always had his shirts and collars starched and the shiniest shoes you could imagine.
as far as eating healthy i do 90% of the time. i bake up a huge batch of vegetables and tiny bit of heart foundation lean meat, not a big eater of meat.
this keeps me on the straight and narrow and not go off the rails and pig out on junk. usually cook up about 40 servings.
im still eating this batch, got about 2 weeks left, lucky for me i can eat the same thing as long as it tastes nice and is healthy, it does me, like a car that has to have fuel and oiled.
carrots, peas, cauliflower, broccoli, Brussels sprouts, beans
the sauce is mixed with chillies, onions, garlic sanitarium peanut paste no salt or sugar.
the meat this time was pork, no fat heart foundation approved.
the rice is basmati, its a low carb/gi rice from india.
as far as vitamins
cats claw
curcumin
vit d
b6
b12
iodine/selenium
complex b
potas vit k
vit e
vit c
iron
calcium
and my latest venture bicarb and maple syrup
heres the link to the thread. http://community.breastcancer.org/forum/121/topic/798280?page=1#idx_15
yes i was born in australia in kalgoorlie a gold mining town.
think we australians are all a bit bitzy, convicts, have welsh, scottish and french ancestors.
take care
xx
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here is my cook up!
still have my glass of red
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dont know whats going on but im about to punch that little munchkin if this duplicates again.
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