Calling all triple negative breast cancer patients in the UK
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Hello everyone
I just wanted to wish all of you a good weekend.
I know that most of the regular posters are busy working or have other commitments, so I know you must appreciate your weekends.
I hope you will find time just to pop in and support Mumtobe as she goes through another seven weeks of chemotherapy. We have all been there and so we know how important support and encouragement are. Cast your minds back to your own treatment and how much you appreciated support on that journey.
Special hellos to BernieEllen, linali, FernMF, and Kymn, not to forget sam52 and chatterbox2012.
For those of you 50 and up you might be interested in looking at the thread Not a typical triple3 am I alone out there? started by Icudashuda.
You might also want to look at the thread Parathyroid disease and breast cancer in the forum IDC invasive ductal carcinoma. There seem to be women having these two things, either at the same time or one following the other.
You might also want to look at the thread High blood calcium levels in the forum Not diagnosed with recurrence or metastases but concerned.
As I have said before, we all need to check our blood calcium levels and if elevated, even only slightly or erratic, get it checked along with our parathyroid hormone level to see if we have hyperparathyroidism (an over active parathyroid gland).
We also need to keep a check on our bone health (bone density through DEXA scans) to make sure we have not developed osteoporosis through our breast cancer treatment or through hyperparathyroidism.
I hope you are enjoying the pre-Christmas shopping sprees if you are inclined this way.
Thinking of you all.
Sylvia xxxx
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If a shop assistant in Toys R Us or similar tells you a toy is ‘easy to assemble’, that assistant is probably lying scum
Just saying: Women do not an electric toothbrush
Avoid gadgety shops unless you want to get your head spliced off by a remote control helicopter.
- This year’s top-selling gadget gifts, by the way, are expected to be a USB carpet, night-vision socks, cheese-eating slippers, a hat that writes upside down and a toffee that is waterproof to a depth of 100 fathoms.
- I think the waterproof toffee makes the best gift, as what is the point of a toffee if you can’t take it down to the sea bed without it leaking?
Women do not want any of the following as gifts: WD40; an outboard engine; petrol for the car; a fitness DVD; an electric toothbrush; any book with a title such as 1,000 Recipes For The Freezer; Canesten; anything from the Pyrex range.
Keep working on your story. ‘Mummy, how come Father Christmas’s reindeers can fly?’
‘Because each morning he gives them a big cup of Father Christmas’s Most Excellent Flying Juice. It is especially for reindeers who need to fly.’
Goats, bees and donkeys are nice thoughts as gifts, but hell to wrap and to keep secret. Hot-air balloons are also a problem.
Keep the scissors and Sellotape for your sole use. If necessary, hide one in your knickers and the other in your bra.
Plan a Christmas gift budget, then don’t look at what you have spent until April — or ever. Eat your bank statements and teach the children that game called Quick, Quick, Let’s Hide From The Bailiffs!
Why not spare yourself the tiring agony of producing a traditional Christmas dinner and offer something different for a change, such as salad?
This will make small children cry and frighten older people, but, hey, you can’t ever get through Christmas without upsetting someone anyway.
Instead of just watching TV, why not play a traditional family game. The rules for Quick, Quick, Let’s Hide From The Carol Singers! are as follows: turn off lights; hide behind sofa; be very quiet; pretend to be out.
Shallots are the work of Satan. It can take a whole morning to peel one. They are not worth it. They are only tight, nasty little onions with mean and ungiving dispositions.
Try not to get competitive about cards, eyeing up how many others have received. But it’s sensible to send yourself a good number all the same. Plus, you can send yourself charity Christmas cards, thereby proving to yourself that you are a good person, which is nice to know.
Baileys: just because it’s Christmas, it makes it all right to drink a mixture of whiskey and cream, does it? Oh, OK. I get it now. I’ll have a triple with a Tia Maria chaser, thanks.
Should anyone ask if you’ve seen the scissors and Sellotape, it is important to say ‘No’ quite firmly. You may wish to check that the scissors aren’t poking out of your bra, which will only demonstrate to others that you are a liar and the sort of woman who hides sharp implements in her smalls.
Before attacking the shops feverishly in search of the perfect office party dress, check that you work in an office and you’ve been invited to a party. If you don’t work in an office and haven’t been invited to a party, you don’t have to attack the shops feverishly.
Never throw a party yourself. No matter how many chairs you provide, someone will sit on the edge of a low (glass) table and tip it up.
Giving your parents or any older relatives a £5 note and saying ‘Buy yourself something nice’ can offend, so up the amount to £10 (or at least £7.50).
It is important to congratulate all the children in the school Nativity play, even though yours was the best by a mile. Seriously, has there ever been such a brilliant sheep?
Keep working on your story. ‘Mummy, is Father Christmas really Daddy?’
Don’t be silly. When has Daddy ever done anything useful round here?’
A copy of The Times dated the day someone was born makes a thoughtful gift. But, failing that, you could opt for a copy of yesterday’s Times with the date crossed off and ‘September 17, 1932’, for instance, written on it instead. This is not only a far cheaper option, but is also a good gift for an elderly relative in a care home who has no idea who they are or what day it is.
Bread sauce was invented by the Let’s Dream Up Things For Women To Do Society, founded in 1792 to dream up things for women to do. Bread sauce is, therefore, wholly unnecessary, as well as really quite horrible.
Request the Christmas Day shift at work. If you are refused, beg. If you are refused again, turn up for work anyhow. This will make you the Christmas martyr, and everyone knows martyrs don’t have to shop, cook or clean up.
Just because you feel you ought to invite your mother-in-law, it doesn’t mean you have to let her in.
If an assistant in PC World or similar says: ‘Yes, it’s easy to set up; it’s just plug-in-and-play,’ they are probably lying scum. You may kick them.
Beware the tombola at the school Christmas fair because there is every chance you will win back that nasty vase you donated, having won it the previous Christmas.
Also, approach the school fair Santa with some apprehension and expect tearful complaints afterwards, along the lines of: ‘But it wasn’t Father Christmas. It was Christopher’s Dad!’
The Argos catalogue is an excellent place to start your shopping because it features more than 30,000 products — except the one you want, which is out of stock. How does that work exactly?
Gift tokens may seem like a cop-out, but after driving around Brent Cross for four days trying to park and six days trailing around the shops trying not to cry, you’ll be amazed at how sexy and on-trend they suddenly seem.
Keep working on that story, even though your energy may be on the wane.
‘Mummy, how does Father Christmas get into houses without chimneys?’
‘Through the hole in my wallet where my money used to be, I expect.’
If you have done nothing yet about Christmas and are in denial, have a triple Baileys with a Tia Maria chaser. You’ll be amazed by how little you care
If your husband’s idea of a gift is to wrap up the kettle at the last minute (‘How thoughtful: our kettle!’) it is only fair that you give him the cheese-grater in return. Alternatively, you could give him the finger, which is cost-effective and extremely satisfying.
You do not have to keep up with the Joneses when it comes to Christmas trees and lights. It is perfectly fine to keep things tatty and half-hearted in the hope you will eventually drag them down to your level.
’Tis the season to be jolly, so, of course, you are going to feel depressed. Accept it and move on.
Stop working on that story. ‘Mummy, how does Father Christmas get round all the houses in one night?’
‘That’s a good question. Though, first, let me ask you this. Isn’t there anything on telly?’
Brandy butter was also invented by the Let’s Dream Up Things For Women To Do Society (see bread sauce, above), as was wrapping bacon around fiddly little sausages. Cranberry sauce is OK, and at least you’ve had that same jar on the go since 1952.
That toffee is still the perfect present.
If you have done nothing yet about Christmas and are in denial, have a triple Baileys with a Tia Maria chaser. You’ll be amazed by how little you care.
Obviously, you want to arrive early so as to bag rooms before your sister arrives. Tell your sister you’re arriving on the 24th. Drive up on the night of the 23rd.
Bring earplugs, holly and manners. A good idea is to wash up immediately after arriving. Everyone will say: “Oh, no, you really shouldn’t.” For the rest of the visit, heed their advice. A good ruse is to be the one who befriends the aged relative. When in doubt, sit on the sofa and nod.
Just accept it: all mums are insane throughout Christmas. There’s little you can do. Peel potatoes. Keep smiling. Ply with drink.
Steel yourself for siblings. You’ve not talked in a year; suddenly, you’re sharing a lilo on the floor.
Go to bed early and don’t make festive innuendos such as “I’ve got to stuff the turkey”, or “I’d better get to bed. Later, I’m coming down the chimney”.
You’ll be under surveillance from mums determined that everyone should have fun. At all times wear a smile, a festive hat and the ugliest and most garish present you’ve been given.
Remember to enjoy yourself. If you don’t, someone will attack. ’Tis the season to be jolly. And if you can’t be jolly, get drunk.
Should a sexual encounter come your way at Christmas time, remove scissors and Sellotape from pants and bra. Or don’t if you want to give them a night they will truly remember.
Lastly, if the going gets tough, just repeat this special Nativity prayer: ‘Forgive us our Christmases just as we forgive those who Christmas against us.’ It makes no sense whatsoever, but it is still strangely soothing.
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such an interesting and informative thread and as you say sylvia not that many posters.
ive just finished rads, didnt mind them and was more worried to stop treatment thinking the (pip)rascal might be around the corner just waiting to pounce.
been on xeloda for 2 months now just starting naveline, so far no side effects with x just a bit on hand and feet, hopefully navelbine will be no hassles too.
x
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Why We Put Angels On Top Of Christmas Trees
Author Unknown
One Christmas, a long time ago, Santa Claus was getting ready for his annual trip; but there were problems …… everywhere. Four of his elves were away sick and the trainee elves did not produce the toys as fast as the regular ones. So, Santa was beginning to feel the pressure of being behind schedule. Then, Mrs. Claus popped in to tell Santa that her mother was coming to stay for Christmas; which stressed him even more. After a while, he went to harness the reindeer, he found that three of them were about to give birth and two had jumped the fence and run away, heaven knows where to.
Then, when he began to load the sleigh one of the boards broke and several large toy- bags fell to the ground, scattering their contents all over the place. Needless to say, Santa was not in the best of moods. Suddenly, the doorbell rang and he went to the door expecting another problem. But when he opened it, there was a little angel with a great big Christmas tree that she had brought especially to cheer him up. The angel greeted him very cheerfully, “Merry Christmas Santa Claus. Isn’t it just a wonderful day? I have a beautiful tree for you. See, isn’t it just the loveliest Christmas tree you’ve ever seen? Where would you like me to put it?” Thus began the tradition of the little angel on top of the Christmas tree..
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Hello BernieEllen
Thank you for your two posts. I am sure you have kept everybody entertained.
Many thanks.
Sylvia xxxx
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Hello liv
Thank you for your post and for your very kind words about how interesting and informative you find this thread. It is encouraging to have such kind words.
I do not know how long you have been viewing this thread, but I started it on September 12th 2010 to try to bring TNBC out of the dark ages in which I thought it was, especially in the UK, and especially when I was diagnosed on June 20th 2005. Although I started it to help women in the UK, I have always said that I welcome women from anywhere in the world. I have dedicated myself to the thread for two years and three months now, and I have spent a lot of time making sure that I kept looking for the latest information and that I kept encouraging women and reassuring them. I did not know where the thread would go but am very pleased that we have now had more than 23,000 views but would like more posts. In one way I hope that the lack of posts, compared to views, is a good sign and that fewer women are being diagnosed or that more and more of them have lots of information so that they can cope better and do not need forums and threads such as this. When I was diagnosed TNBC was not mentioned as such. I was just told that I did not have hormonal receptors, Tamoxifen would be of no use and the prognosis was not good. I am pleased to say that I am still alive and well seven and a half years later!!!
I was very interested to know that you have inflammatory breast cancer with triple negative receptors and I am glad to know that all has gone well so far with your treatment.
We had more or less the same chemotherapy drugs except that I had epirubicin instead of doxorubicin, but they are the same group of drugs. I also had a large tumour and had the chemotherapy for six months and then a mastectomy of the right breast. Only one lymph node was affected and that was the first one, the sentinel node. I then had three weeks of radiotherapy with boosters.
You must be relieved to have finished the standard treatment.
I suppose that you are taking Xeloda as a preventive and that Navelbine is as a preventive as well.
You probably know that a lot of us have had or have invasive ductal carcinoma (IDC) with triple negative receptors and that after treatment we are not given anything else as nothing is available but possible drugs are in the pipeline. If we have local recurrence or metastases they do find other drugs for us.
I would be most interested to know how the experts distinguish lobular breast cancer from invasive ductal carcinoma. Is it through something visible on the breast, such as a rash, or is it something within the tumour?
Please post again and tell us how you get on with Navelbine and Xeloda if you will be taking the two together.
I was interested to know that you have some side effects showing on the hands and feet. I know that the taxanes, Taxotere (docetaxel) and Taxol (paclitaxel) do affect the feet and hands. Sometimes the nails turn brown and they can fall off. I was lucky with docetaxel because I had just some discolourment of a few toe nails. I do have long term peripheral neuropathy, which is a strange sensation in the sole and toes of the feet.
My breast cancer was in the right breast.
I hope to continue being well, but we all know we can take nothing for granted.
I would love to know about Western Australia, what you think of your health system and your breast cancer treatment.
Wishing you all the very best, and hoping to hear from you.
Sylvia xx
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Hello everyone
I can see from the triple negative forum as a whole that things are very quiet. I think this is normal as Christmas day approaches. I know that for most people Christmas is probably the most frantic in the year. Of course the religious aspect is the most important for Christians and for everyone probably the family get together is very important. It is too bad commercialism steps in to spoil things. Christmas has become too materialistic. Judging by the crowds in Exeter and Exmouth, people appear to be in manic present buying, despite austerity. I always thought that Thanksgiving in Canada and the US was much nicer.
The weather is dreadful in Devon. We have never-ending rain and cloud and today we have a weather warning.
Since on the thread we are all from different countries, I was wondering what some of you might do to make your Christmas day different from the Christmas day of other people. Do you stick to traditional meals and rituals? If not what differences do you bring in?
Here in the UK a lot of people are suffering from all the cuts, lack of employment and lack of money. We have people in fuel and nutritional poverty. We have people living in cardboard boxes, food banks, soup kitchens and more than a million children living in poverty.
Thinking of you all.
Best wishes.
Sylvia
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Sylvia, Thanks for your posts. I had one node affected -the sentinel node, which had an 8 mm deposit - with the 3 nodes going out from it negative, so surgeon thinks the cancer was contained. I had those four nodes removed during SNB, but no axillary dissection at the time. I may or may not have more nodes removed during BMX in early February. Docs trying to decide. A ke study showed that it's ok, outcome-wise, to skip axillary dissection when only one node is positive, but the study was of older women whose tumors may not have been as aggressive. I will have radiation to axillary nodes and the thinking is that will suffice. They remain clear after neoadjuvant chemo. Tumor in breast is nearly gone and I still I have 4 taxol left to shrink further. Your experience? Thoughts?
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Hello placid44
Thank you for your post, which I read with great interest. I was interested to know that your sentinel node was the only one affected, so we share that.
I was interested to know also that you mentioned your ki as 67%. This was not mentioned at all to me at my diagnosis and consequent treatment. I would be interested to know exactly what this ki is and what the percentage means. It would probably be of interest to all those viewing, especially in the UK as we do not seem to get all the details that you get in the US.
When you had your SNB and had four lymph nodes removed, how was this done? Did you have to have a general anaesthetic or a local one?
I was also interested to know that you had weekly cycles of chemotherapy treatment. It seems to be that this is the way chemotherapy is now being administered and that the medical experts are moving away from the cycle of every three weeks which is what I had and which was still being used very recently in the UK. There is one lady who posts on the thread from Ireland, Mumtobe, who is going through chemotherapy treatment in weekly cycles like you are. She had some chemotherapy earlier on and surgery, but the chemotherapy was stopped while she had a baby and she resumed chemotherapy about six weeks ago. She is having twelve weeks of it, has got about halfway and has about six weeks to go. After that she will have radiotherapy. She has said that she is not suffering any real side effects with the weekly treatment. It looks like this is the way to go.
I had seven lymph nodes removed at the same time as I had a mastectomy of the right breast after chemotherapy to shrink the tumour. Only one node was affected and I was told after this surgery that I had a complete pathological response and there was no visible evidence of cancer in my body.
Is there any reason why you are having to wait such a long time to have a bilateral mastectomy? Did you ask for this or were you advised to have it? Why do you think the doctors are trying to decide whether to remove more lymph nodes if only one of four was positive? My information is that the more lymph nodes you have removed the more likely you are to have a condition known as lymphoedema, a swelling of the hands and arms due to a damaged lymph system which prevents lymph circulating properly around the body.
From what I have read, it is true that the younger you are the more aggressive the tumour may be and we are told that TNBC more often affects younger women than older ones. However, from these threads there seem to be a lot of women 50 and up being diagnosed with TNBC. Most women with breast cancer that has TNBC receptors seem to have invasive ductal carcinoma (but by no means not all).
I have re-read your post and understand why your surgery is in February. It is because you have not finished your chemotherapy and it will probably be towards the end of January before you do. It is very good news that the tumour in your breast has nearly gone.
I hope this will help and I wish you all the very best as you go forward to finish your chemotherapy. That will be a very hard part of your breast cancer journey behind you. I hope you will let us know how you get on and I shall certainly help you all I can.
Best wishes.
Sylvia xx
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hi sylvia im surprised that there is not a lot more postings here. you sure are an assett to anyone with triple negative. only found this thread recently & wasnt sure if it was only for UK.
as per most ibc ladies my cancer was not diagnosed for over 3 months which in that time was put on numerous antibiotics.
same here in australia treatment wise for trip neg same as you in UK. .. chemo, mastectomy, radiation and if no mets nothing, just scans and wait for it to rear its nasty head sooner or later.
i wasnt prepared to go that way, my path report was pretty average, ibc 17/24 nodes, 10cm trip neg and when i was having initial standard treatment the cancer became resistant to chemo after 4th treatment it started growing again which i told my onc and she just looked at me like "what are u talking about" yep unbelievable but at that time i was just sorta getting a gist of it all and didnt kick up a stink but inside i was stewing and by the time i had finished 6th treatment i was really scared as i could feel it was growing and wasnt booked in for mastectomy until the following month. the following week i got a referral to change onc because my onc had told me that i would not get any more treatment unless we didnt get clear margins, i didnt consider 0.3 a huge victory and was really peee'd off and found out that my new onc was away for another couple of weeks and as i was still worried that cancer was growing rapidly rang my breast surgeon at the same hospital.. saw him the next week and i demanded that he take my breast off today
true! ..he agreed and within 24 hrs it was gone. met new onc and i asked immediately for more chemo as wasnt happy with path and breast surgeon had told me there was loads of dead cancer cells floating around and as my margin was a measly 0.3 i convinced him to give me xeloda and mind you a node had come back above the collar bone which is a real baddy that i pointed out to new onc and that was a good reason to give me more chemo and for him to justify his reasons to his superiors or whomever ok's budget per patient. was so pleased when he said the magic words, yes you are entitled to more chemo because of that node.i did have a bad cough and was put into hospital & as it turned out to be a blood clot and my new onc got the scan report and rang me and said that the nodes on my chest were enlarged and as i had been reading so much i read a good combination with xeloda was navelbine for trip negs so i had ammunition to ask him for navelbine too. to my surprise he agreed and now ive been on xeloda for 2 months and just first dose of navelbine and so far alls good, just a bit tired but it will sort itself out. tiny bit of nauseas which passed within an hour, little bit of foot hand syndrome, passes too.
you ask about our health system, overall i cant complain im in the public system for all of my treatments which i have not paid one cent for and had scan after scan, test after test, follow up care has been amazing so yep the health system is pretty good and am grateful that australia does offer free medical.
as far as treatment the same as you nothing extra being trip neg, just mainstream treatment and very hard to find onc that will look outside the square....
i was not going to settle with just being treated as standard, having ibc trip neg and a awful path report i knew im in big strife and no one was going to fob me off or give me that, 'this is the standard treatment', standard treatment in my eyes for trip neg ibc meant you have had basic treatment, now go away and wait for it to return and then we will give you some more chemo.
so for now im as happy as a cancer patient can be in regards to treatment, shortly i will start investigating trials because sooner or later it is highly likely that this chemo will stop protecting me and i will have mets. not being paranoid or negative that is the more than likely what will be.
oh and for xmas, less is definitely more here in western australia because its usually very hot. our family doesnt do much in the day. i like to go to the beach and have a glass of wine and just chill. then that night we all meet at my parents home and mother has a great spread. meats all cooked prior and served cold, turkey, ham, pork and a barbecue with snags and steaks and prawns. very casual, we havent got any little ones around so not too big of an event., ideally just chillin
what about you, how do you spend xmas, your weather appears to have changed a bit too, not as cold is that right? a decade ago xmas here was always a scorcher mid 30's low 40's but recent years has been a lot cooler and hopefully it will be this year.
i would love to hear your views on my treatment even if you think that im doing the wrong thing wanting more chemo now as a lot of people say that i shouldnt be getting more because if it mets i will need chemo then. your thoughts?
its such a blessing to find this informative thread and will try to contribute, i dont know much i just read everything i can and go with my gut feelings, lets face it, if the professionals knew it all for sure not so many of us would be dying of cancer.
thanks lovely lady sylvia
x
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Hi Sylvia,
sorry that I haven't posted but still haven't gone through all the information in detail. I have read it but for the moment I find it difficult to retain or evaluate it.
Yes Christmas is a busy time and for me this year a particularly emotional time. Not one specific reason but I am missing my sisters in England and for the first time Kerry will not be home. It has been a rollercoaster year and I am looking forward to the peace of Christmas morning when I shall be up early wrestling with the ham and starting the sherry trifle with a small one for the cook, but knowing that Leigh is safe at home.
There is a Christmas morning swim at the White Strand as a fund raiser for the centre and I may go there depending on the weather but it is quite a drive away.
On St Stephens day the local Wren boys will be around the country side singing and playing traditional music.
I would like to thank you for all the support and vital information that you have given us all.
BernieEllen love all the posts and looking at the poor angel on top of my tree!
Sending peace and healing especially to those who are in treatment or worried.
I love christmas for the love and childhood memories that it generates.
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Hi Sylvia & everyone,
I'm officially half way there. Finished my 6th bout of taxol today, only six more to go and chemo is over! Very happy about this. The port has healed very well and today was my first infusion with it. I wish I had got this in sooner, it would've saved my poor arm. Made treatment much easier. Feeling good after the 6th infusion. I'm always a bit tired on the day of treatment but no nausea and I'm so looking forward to Christmas.
Emma is thriving thank God and we are so excited about taking her to see Santa
I'm not sure when I'm starting radiotherapy. My surgeon had told me that I'd have a respite of 8 wks before starting but my oncologist said I'd be starting straight away. Is it normal to have a break? I don't know how long I'll be having rads for either but it'll be between 5 and 7 weeks, I'm pretty sure they'll go for as long as I'm able and treat me agressively. Sylvia you went through the wars with ports didn't you.
Met such a lovely woman HER2+ getting her port out the same day i was getting mine in. She was so positive about the future and it was infectious, am praying for us all that this beast stays away once treatment is over.
Tak soon,
C X
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Hello liv-, linali and Mumtobe
It was so good to read all your posts. I shall be answering all of them tomorrow when I have more time. In the meantime I am thinking of you and glad for Mumtobe that she has now done half way with the chemotherapy.
Fond thoughts.
Sylvia xx
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Hello everyone
I am posting some bits of information that I found in a couple of newspapers yesterday, Tuesday December 18th 2012.
As you know, I tend to read the health sections in the Daily Express and the Daily Mail on Health Day on Tuesdays. The following article in the Daily Express caught my attention. It is entitled Put the squeeze on breast tissue to help beat cancer by Jo Willey – Health Editor. It starts off “Putting pressure on malignant breast cells may be all it takes to prevent them triggering cancer.
Applying a squeeze to the cells guides them back to a normal growth pattern, laboratory experiments have revealed.
Researchers hope their work could provide clues that lead to new treatments.”
For more details the link is:
http://www.express.co.uk/posts/view/365606/Put-the-squeeze-on-breast-tissue-to-help-beat-cancer
The findings were presented on Monday at the annual meeting of the American Society for Cell Biology in San Fransisco.
The other article was in the Good Health section of the Daily Mail Tuesday December 18th 2012. “Personalised cancer drug shrank my tumours by half in just eight weeks.” The article is by Caroline Cheetham. This article is all about new genetic treatments and how the drug crizotinib helped one woman with advanced lung cancer. The article says this could be used throughout the UK within months and patients take the tablets twice a day. Please read this article for more details and how genetically targeted treatments are widely considered to be the great new hope in the fight against cancer. Currently, patients tend to be treated with a one size fits all chemotherapy drug that has varying degrees of success.
At the bottom of the article it is written “Cancer Research UK is helping to fund much of the work into personalised cancer treatment; cancerresearchuk.org, royalmarsden.nhs.uk.
The link to the article is:
Please read the article for a lot more details.
You might also be interested in the article in Good Health in the Daily Mail entitled “Are you a secret redhead? By John Naish.”
“Four in ten Britons carry ginger genes without having red hair, a study reveals and, from cancer to Parkinson's, it could have major health implications.”
I found this article fascinating and most interesting. Please take the time to read it. The link is:
To anyone viewing, please remember that you are welcome to post even if you are not from the UK.
Best wishes.
Sylvia
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Sylvia,
Thanks.
To answer your questions, according to what I've read, Ki 67 is a protein (antigen) with a critical role in cell division. The ki67 score indicates a tumor's aggressiveness - specifically, cell proliferation. "High scores - greater than 20 percent - mean the cancer cells are growing and dividing rapidly." Proliferation is only one way to measure aggressiveness. It is one of three measures that go into determining the "grade" of a tumor, with 3 being highest, as you know. My ki67 score was on my baseline MRI report. Not all labs report it.
Here are a couple of links:
breastcancer.about.com/od/tumor markers/f/ki67.htm
community.breastcancer.org/forum/96/topic/777784-specialk
Apparently, a high ki67 score is generally an indication of poor prognosis, BUT it is also correlated with a good response to neoadjuvant chemotherapy, just as grade 3 tumors typically respond better. Those with a high ki67 score are more likely to have a pathological complete response (pcr) after chemo ( ie no residual invasive disease), which indicates a good prognosis. (Presumably, a pcr suggests that if the tumor was killed by chemo, so were any cells that had been circulating in the body...no spread).
I had general anesthesia for my sentinel node biopsy.
Both my adriamycin cytoxin and my taxol were given "dose dense." For AC, that meant every 2 weeks instead of every three. For taxol, it meant every week instead of every three. For taxol, each dose was lower in taxol content sice it was given more frequently. My onc did dose dense because studies have shown it is more effective/gets better response by the tumor. In the case of taxol, I believe it also means less intense side effects - the lower dose means milder SEs, even though you get it more often. Not sure what studies say about dose dense AC and side effects, but certainly I had a very difficult time with the AC. My onc had to closely monitor and treat the side effects. But I was glad to do it for a better outcome.
My docs are wondering about whether to remove more nodes/ do an axillary dissection during my BMX because the standard of care used to be that even one sentinel node was positive for cancer, that could indicate that the axillary nodes are positive: To prevent spread, they should come out. The downside, as you note, is increased lymphedema risk, but trying to get rid of the cancer typically trumped that.
Then a recent study showed that no, with only one lymph node positive for cancer, there was no compelling reason to do an axillary dissection because survival was the same for having one node and zero nodes. That is, don't do the axillary and increase the lymphedema risk for no clinical benefit. The problem in my case is that that study was done on older women with less aggressive tumors than mine. So my cancer may be more likely to spread, even with only one node affected. We can't be sure that the "no survival benefit" conclusion in the study applies to me, so the thinking is I may need an axillary dissection. My breast surgeon is presenting to tumor board to get their thoughts. I am partly hoping no, but I've been aggressive with everything else in treatment and want to reduce my risk whenever possible.0 -
Hello liv-
Thank you for your post. It looks as though whatever the health system in the western countries the treatment and drugs are basically the same. Here in the UK on the news and in the newspapers we are consistently told that we are not up to standard when it comes to cancer.
It sounds as though you have been through a really rough time during chemotherapy and with your oncologist. I think we all learn on these threads that we have to be our own best advocates and be one step ahead of the experts. There does sometimes appear to be a lack of urgency and a failure to put themselves in the place of the patient with some of the experts. I must admit I have no complaints about my own oncologist and breast cancer surgeon. They always seem prepared to go the extra mile. I can understand why you changed your oncologist and why you rang your breast cancer surgeon. For your own peace of mind you would have needed to get read of that malignant breast.
I do hope that the treatment with Xeloda and Navelbine will be successful for you and that you will be able to put all this behind you.
I do hope you will have a nice Christmas day and that you can forget about cancer and enjoy yourself. It sounds as though Christmas day in Australia is very relaxed and pleasant.
We spend Christmas quietly by ourselves as Christmas is really for children and we do not have any. A lot of our relatives are dead and those family members that are alive have children and grandchildren of their own and go their own ways. Christmas is too commercial here and starts in September when Christmas cards appear in the shops.
The weather here is very changeable but we have had rain for months on end and a lot of flooding in Devon in the south-west of the country where we live. It is fairly mild today, about 12 degrees C.
I think you are right about the professionals, otherwise cures would have been found for cancer. There will never be a magic bullet because there are about 200 different cancers. We just have to keep hoping and keeping ourselves informed.
Wishing you a merry Christmas and a happy healthy New Year.
Sylvia xxxx
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Hello linali (Lindsay)
Thank you for your post. Take your time reading the information and do not worry if you cannot retain or evaluate it. It is on the thread so you can look at it at any time. There is so much information flying around that it is impossible to keep it all in your head. Really, as far as we are concerned, it is still the status quo of chemotherapy, radiotherapy, surgery and check ups. The basic drugs for breast cancer in general, especially for primary breast cancer, do not appear to have changed. What has changed is the cycle of treatment for chemotherapy, going from every three weeks to every week. The result of this seems to be fewer side effects, but it does mean more frequent trips to the hospital and more cannulas etc., though I get the impression that ports are being advised more and more. I get the impression that there appears perhaps to be a move away from epirubicin and doxorubicin (the red devils) with some patients having cyclophosphomide and one of the taxanes (paclitaxel or docetaxel).
I do hope you will have a nice Christmas and I do understand the emotional side of all of it.
I was interested to know that you are having a fund raising Christmas morning swim. It is a tradition in Exmouth for there to be a Christmas morning swim and quite a lot of people take part whatever the weather. I am not sure whether it is for fund raising. On December 26th, Boxing Day here in the UK, there is a fun run along the seafront for charity.
Thank you for your appreciation of the thread and thank you for all your valuable support. It means a lot to me.
Wishing you a pleasant Christmas day and hope that the New Year will be less stressful for you and yours.
Peaceful greetings.
Sylvia xxxx
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Hello Mumtobe (Carol)
Congratulations on finishing your sixth bout of paclitaxel (Taxol). You will soon be over this ordeal.
I was glad to know that you are finding it easier with the port. I think that with weekly treatments patients will probably be advised to have ports, to save all the trouble with cannulas. What kind of port do you have? Is it a Hickman line?
I am sure everybody on this thread will be so glad to know that Emma is thriving.
As far as radiotherapy is concerned, I am sure that you oncologist will know when it is best for you to start. I had my radiotherapy quite a time after surgery for a mastectomy. As far as I remember, I had my surgery on May 17th after six months of chemotherapy, which ended at the end of April. I did not start radiotherapy until late June because I had three weeks of radiotherapy with boosters and finished about July 17th.
I did not actually have a port for my chemotherapy treatment. I was not offered one and went through the six months of chemotherapy without one and did not have a problem with cannulas except for a bit of bruising sometimes. There was no real problem with finding a vein except towards the very end. It was when I was preparing for a mastectomy that the oncologist suggested I had a port inserted inside of me above the good breast on the left, in case I should need more chemotherapy after the surgery. I was very reluctant about this port, which I saw as a foreign object in my body that I could do without. Anyway, I accepted having the port and it was installed during my mastectomy. It was only afterwards that I was told it had to be flushed out every three months with Heparin. Previously I had been told that the port could stay in for life if it turned out I did not need more chemotherapy. At the second visit for flushing out, the system did not work and I was told it was blocked. I had to have an x-ray to prove this and on December 6th 2006 I had to go in to hospital for the day and have it removed under general anaesthetic. I was told it was rare for these ports to kink and block. I made it clear I did not want another one installed, and was told that patients were only offered one!!! I did not like the port inside me very much and was very well aware that it was there and could feel it.
There are different kinds of ports and if it were me I would make sure what kind of port is being offered.
I was interested to know that you had met a nice woman HER2+. It is good to meet with people that have a positive attitude. Was she triple positive, ER+, PR+, HER2+? To be HER2+ was considered to be more aggressive that HER2- when I was diagnosed, but the drug Herceptin is now standard treatment for HER2+. It is a monoclonal antibody. I remember a few years back when women were having to go to court to get Herceptin.
Enjoy your Christmas with baby Emma and I hope the New Year will be a good one for you.
Thank you for your great contribution to the thread this year.
Fond thoughts
Sylvia xxxx
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Hello placid44
Thank you for your post.
Thank you for your explanation about Ki67. I am sure everyone reading the thread will find this useful. I have no idea what my Ki67 might have been when I was diagnosed. I do know that most of us that were diagnosed with TNBC were grade 3. I also seem to remember that with TNBC cells are termed as poorly differentiated. Thank you for the links.
I was told by the breast cancer surgeon that the prognosis was poor but I think she was saying that in comparison to hormonal breast cancer and the fact Tamoxifen was no good for me. That was seven and a half years ago! After treatment I was told I had an excellent pathology report and that there was no visible sign of cancer in my body. It looks as though I probably had a high Ki67 score, but I shall never know.
Thank you for letting us know that you had general anaesthetic for sentinel node biopsy.
I was interested to know that you had chemotherapy treatment every two weeks. I had it every three weeks and Mumtobe is having it every week. I was also interested to know that for AC (doxorubicin and cyclophosphomide) you had every two weeks but for Taxol (paclitaxel) you had it weekly, which is what Mumtobe is having with Taxol.
Do let us know how you get on with the weekly Taxol.
Keep us informed about what is decided about lymph nodes when you have your surgery. If it were me I would have the axillary dissection if there was any doubt as there is treatment for lymphoedema and not everyone gets it. I had axillary dissection and have had no long term problems with lymphoedema. I had a little bit of swelling in my right hand straight after surgery and as a precaution I did go to the lymphoedema clinic at the hospital. The nurse in charge measured the circumference of the arm all the way along and said it was only minor so I did not need to go regularly. You are told you can wear a compression sleeve if you want. I tried one on, it felt and looked awful, so I declined and have had no problems. My GP told me I had made the right decision and that compression sleeves were more trouble than they were worth.
That is about all for now.
Have a good Christmas and all the best for the New Year.
Sylvia xxxx
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Hello BernieEllen, chatterbox2012 (Michael), FernMF, Kymn and sam52.
I just wanted to say thank you for your efforts on our thread during this past year. It is greatly appreciated and there is so much information for reference in the nearly 80 pages of this thread.
I do hope you will have a pleasant Christmas day and wish you all the very best for the New Year.
Fond thoughts to all of you.
Sylvia
To Maria_Malta, Merry Christmas and a Happy New Year. I hope we shall hear from you during your break from school.
To Dulcie, you are in my thoughts and I sincerely hope you are responding to treatment.
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Good afternoon everyone
The good news is that The Janette Collins Foundation has had its charitable status confirmed now the hard part begins, how to raise money. If anyone has any ideas please let me know.
I hope you all have a peaceful and loving Christmas and a healthy New Year!
Michael
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Hello Michael
It was nice to hear from you and it is good news that the Janette Collins Foundation has now had its charitable status confirmed. You must feel relieved after all this time. As you say, now the hard part begins and you have the challenge to raise money. I hope some ideas come from this thread to help you.
I was having a think about how to raise money and it is quite a challenge, especially with all the charities that are around, especially the big name ones. I suppose one idea might be to organise coffee mornings with volunteers donating coffee, biscuits, time, etc. I remember someone once telling me it was amazing how much money could be raised on cups of coffee! I also remember your saying you had a lot of shoes from Janette's shoe shop. If you have, you could auction them at coffee mornings, if the thought is not too painful. I have never been involved with organising anything like this, so I may be barking up the wrong tree.
I have been involved in helping with political fund raising, but have not done that in a while. I used to man the kitchen at a fête in which coffee, tea, cakes and pasties were served up. Some of the stuff was donated and some we bought. We used to hire a hall and get stallholders involved, as well as providing a raffle stall and a lucky dip stall. It was very hard work. We used to make a good profit and the kitchen made a lot of money. It was good as long as the weather was good.
Perhaps linali (Lindsay) and BernieEllen may come up with some good ideas. They seem to be involved with fund raising and they are very enterprising.
I suppose you will be going to London for the Christmas period soon. I know it will be a difficult time, but I hope you will be alright. I am sending sincere best wishes for the New Year and hope it will be a good one for you.
Fond thoughts.
Sylvia
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Hello again Michael
I forgot to ask whether you read the information I posted this week about ginger haired people. There was a snippet at the end in the actual article, to which I gave a link, which stated the following:
Brunettes are more at risk of nicotine addiction, according to a study by Pennsylvania State University.
The melanin that gives brunette hair its colour also slows the liver’s ability to metabolise nicotine, making it stay in the system longer. This makes it more likely to increase dependence on cigarettes.
The darker your hair, the greater your chances of developing non-Hodgkin’s lymphoma, according to the National Cancer Institute’s Division of Cancer Epidemiology and Genetics.
It is always a good idea to go back to read posts you may have missed if you are not checking the thread daily, so that you keep up to date with what is going on.
Best wishes
Sylvia
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Sylvia
That was an interesting piece about hair colour, I can see I didn't have a chance, my hair was black.
I am off to my sister in law in Hackney on Monday and I am back Thursday. I will get the kids to come up with some ideas for the charity, I can even get the two youngest to do some work on it, Matthew doesn't get any time to himself because of his work.
I got a card today addressed to Janette and I, it made me really upset, I was. Surprised.
Michael
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Thinking of you all and Wishing you a safe and joyful Christmas.
Bernie
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Hello Michael
I was glad to know that you found the piece about hair colour interesting. Can we really believe all this stuff we read, even when it says it is scientific and researched. I have brown hair and deep green eyes, so I am not sure where that puts me. I have read in the past that tall people are more prone to cancer and I am five foot ten inches. I have also read that tall people do not live as long as short people. What makes you think we are suffering from information overload?
I shall be thinking of you on Monday as you make your way to Hackney and I do hope you will be able to enjoy Christmas. Let us know if the children come up with any ideas for the charity.
I can understand that you felt upset when a card arrived addressed to Janette and you. How can people be so out of touch. The day before yesterday I went to see one of my neighbours who is 88 and going through more chemotherapy for leukaemia which he has had for twenty years. It is taking its toll on him. His wife died in September, after more than sixty years of marriage, and he is very lonely. We chatted for quite a while and he told me that he had been upset because a Christmas card arrived addressed to him and his deceased wife. I cannot understand how people can be so out of touch. I went to the funeral and the reception and there were loads of people. It made me think of an anti-Christmas card article I saw in the newspaper last week, which began with “Dear Once a Year Friend” and went on to explain how he would not be sending any more Christmas cards and what a ridiculous ritual it was. I am not surprised that you were upset because it is early days yet since Janette died. My elder brother died in October 1995, at age 56, of cancer, disseminated adeno carcinoma, and I still feel teary when I think about him. He died within six weeks of being diagnosed.
I do hope everything will be fine for you in 2013.
Best wishes.
Sylvia
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Hello BernieEllen,
I hope you have a lovely Christmas and that the New Year will be good for you.Thank you for all you do on this thread.
Fond thoughts,
Sylvia.xxx
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Hello placid44 and InspiredbyDolce
I just wanted to say thank you for your contribution to this thread and to wish you a merry Christmas and a Happy, Healthy New Year.
To placid44, keep looking forward as you got through your remaining four weeks of Taxol. Wishing you all the very best from all of us on this thread.
Hello also to liv- in Perth, Western Australia. Thinking of you and wishing you all the best for Christmas and the New Year. Remember to let us know how you are.
Sylvia xxxx
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Hello carlads,
I do hope that my PM to you will be of help. Do not hesitate to post here as we can support you and get you through your treatment.
Thinking of you.
Sylvia
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MISS FOGARTY'S CHRISTMAS CAKE
As I sat in my window last evening,
The letterman brought it to me
A little gilt-edged invitation sayin'
"Gilhooley come over to tea"
I knew that the Fogarties sent it.
So I went just for old friendships sake.
The first think they gave me to tackle
Was a slice of Miss Fogarty's cake.cho: There were plums and prunes and cherries,
There were citrons and raisins and cinnamon, too
There was nutmeg, cloves and berries
And a crust that was nailed on with glue
There were caraway seeds in abundance
Such that work up a fine stomach ache
That could kill a man twice after eating a slice
Of Miss Fogarty's Christmas cake.Miss Mulligan wanted to try it,
But really it wasn't no use
For we worked in it over an hour
And we couldn't get none of it loose
Till Murphy came in with a hatchet
And Kelly came in with a saw
That cake was enough be the powers above
For to paralyze any man's jawsMiss Fogarty proud as a peacock,
Kept smiling and blinking away
Till she flipped over Flanagans brogans
And she spilt the homebrew in her tay
Aye Gilhooley she says you're not eatin,
Try a little bit more for me sake
And no Miss Fogarty says I,
For I've had quite enough of your cake.Maloney was took with the colic,
O'Donald's a pain in his head
Mc'Naughton lay down on the sofa,
And he swore that he wished he was dead
Miss Bailey went into hysterics
And there she did wriggle and shake
And everyone swore they were poisoned
Just from eating Miss Fogarty's cake!0
