Calling all triple negative breast cancer patients in the UK
Comments
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You might find the following links interesting:
http://www.cancer.gov/cancertopics/factsheet/Risk/oral-contraceptives
http://www.slate.com/articles/double_x/doublex/2010/09/the_pillbreast_cancer_connection.html
http://www.webmd.com/breast-cancer/guide/pill-breast-cancer-risk
http://ww5.komen.org/BreastCancer/CurrentorRecentUseofBirthControlPills.html
http://ww5.komen.org/BreastCancer/CurrentorRecentUseofBirthControlPills.html
http://lifeissues.net/writers/kah/kah_02bkbreastcancer.html
Best wishes.
Love
Sylvia xxxx
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Hello susaninicking.
I was reading your post to Peggy and was a bit confused. In your first post you mentioned clips and in this one you are mentioning chips. So that we can all understand and help. I was wondering whether you could clarify this and tell us what exactly it is you have inside you.
I can understand that you do not want a mammogram because of the large haematoma in your breast. Mammograms squeeze your breast at the best of times and are quite painful. The mammogram I had after my large tumour was discovered was painful and left me badly bruised because my breast was already swollen.
It seems to me that an ultrasound would be better and even, perhaps, a CT scan.
I can understand that you need to get on with your chemotherapy and that you need to put this problem behind you. It is a problem you can do without. I do hope that this is resolved and that if you do need surgery you can get it done without delay.
I do hope you will be able to start your chemotherapy on March 6th.
You are probably right about the German system being as advanced as in the US but it may be more bureaucratic in Germany as it is probably state funded. I do not know much about the German health system but would think it is like the NHS in the UK. It is very bureaucratic and there are lots of complaints at the moment but I must say that I had good treatment here in the UK in 2005/6, but I was very proactive about my IDC TNBC because it was in the dark ages at that time. At least our system is not about making a profit on people's health but it may be struggling from abuse by the public. Tell us about the German system.
I do not think you will get much advice about your diet from the hospitals or GPs. I do not think they know much about nutrition and their belief seems to be in dishing out pills according to symptoms. There is a lot on this thread about nutrition. If you are eating plenty of fruit and vegetables with some fish, you cannot go far wrong. I stay away from meat and poultry but that is not for everyone. I stay away from them, and dairy products even more, because of growth hormones which I think are connected to the development of breast cancer. I think it is prudent to stay away from all processed foods and junk foods.
As for mastectomies, I would ask your oncologist and breast cancer surgeon what they think. My personal choice is with mastectomies, but others may prefer lumpectomies.
I think there may be some controversy about mastectomies as a prophylactic. It is a big decision to remove a healthy breast, but it seems to be happening quite a bit.
You might like to read the website of What Doctors Don't Tell You www.wddnty.com. You can sign up to their free newsletter and also buy their magazine. If you go to their website and click on News, I think you will find answers to everything you possibly want to know, including information about mastectomies. The other website well worth looking at is canceractive.com and Chris Woollams. They also have a magazine entitled icon. There is so much information here.
Never be afraid of seeking a second opinion. Doctors are not gods. You are your own best advocate. It is your body and not theirs that you are dealing with and trying to heal.
Thinking of you and hoping that you will soon be able to start your chemotherapy calmly and with confidence. We are all with you all the way.
Best wishes.
Love.
Sylvia xxxx
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Hello everyone.
I thought you might be interested in the following list of current chemotherapy drugs for breast cancer.
Abraxane (chemical name: paclitaxel)
Adriamycin (chemical name: doxorubicin)
carboplatin (brand name: Paraplatin)
Cytoxan (chemical name: cyclophosphamide)
daunorubicin (brand names: Cerubidine, DaunoXome)
Doxil (chemical name: doxorubicin)
Ellence (chemical name: epirubicin)
fluorouracil (also called 5-fluorouracil or 5-FU; brand name: Adrucil)
Gemzar (chemical name: gemcitabine)
Halaven (chemical name: eribulin)
Ixempra (chemical name: ixabepilone)
methotrexate (brand names: Amethopterin, Mexate, Folex)
Mitomycin (chemical name: mutamycin)
mitoxantrone (brand name: Novantrone)
Navelbine (chemical name: vinorelbine)
Taxol (chemical name: paclitaxel)
Taxotere (chemical name: docetaxel)
thiotepa (brand name: Thioplex)
vincristine (brand names: Oncovin, Vincasar PES, Vincrex)
Xeloda (chemical name: capecitabine)
If any of you are taking any of the less common ones please let us know.
Best wishes.
Sylvia xxxx
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thx sylvia, you a such a beautiful person. xxx
yes since having the results i must admit my thoughts on the other breast being removed doesnt seem as urgernt as prior when i though i was more than likely brca 1 -2 positive.
food for thouht thats for sure.
regards the pill and cancer connection, i thought us being trip negs that it would not have made any significant difference and im sure thats what my onc said also? i do read a lot of conflicting views on this.
xx
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Hello everyone.
Since InspiredbyDolce posted a link about dandelion root I have been doing a bit of research and thought you might find the following link interesting. I found some dandelion leaf tee the other day and tried some today. I liked it a lot, but my husband found it too bitter. I have not yet found some dandelion root in any form.
http://www.livestrong.com/article/157962-dandelion-root-extract-benefits/
I would welcome some input.
Best wishes.
Sylvia xxxx
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Hi Sylvia and everyone
I have been in England so I had some catching up to do on posts.
I am still waiting for the Parades Commission to give the go ahead to the charity Land Rover pull. Those of you who live in "normal" countries will no doubt be astonished that we need to get permission to carry on street activities but that's NI.
On a personal level I am still waiting for an appointment with ENT for a biopsy. I was reading in the paper last week that because of empire building that some people are waiting up to 45 weeks. I remembered Friday that I belong to Benenden health so I called them and explained the situation and they have told me that they will pay up to £1500 for the procedure and pathology. I hope that is enough. As far as I know it is just a fine needle biopsy.
I wonder how carolben got on with her first pacitaxol.
Best wishes everyone
Michael
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Hello PeggySull,
Thank you for your PM which I found most interesting. I am putting my response on the thread as I think it is important that everyone should benefit from any information or help that we can provide.
I do feel it is important that we should not dwell too much on all the doom and gloom that we can read about TNBC. There really is no point in taking it all too literally. As you say, any of us could walk out and get killed in an accident. We need to live each day to the full, not dwell on the past and not think too much about the future. As far as I am concerned, there is only today and tomorrow never comes. As you say, we are not statistics and when all is said and done, these statistics do not help us to live. They just serve to make us more anxious and stressed and we do not need that. I also think it serves no purpose trying to establish what caused our breast cancer. There are so many risk factors that we shall probably never know the answer.
As you said, all we can do is to learn to live with our diagnosis and control the things that might help. We can certainly eat healthily, keep active, and avoid negative stress. As you also say, kindness is what matters, and we can all try to be kind. Life is short, and we only get one shot at it.
Deciding whether to have a healthy breast removed to avoid cancer in that breast is a big decision and it has to be a personal one. I remember reading on the What Doctors Don't Tell You website that a lot of these bilaterals are being done unnecessarily. I can understand why those at high risk with genetic faulty genes might do this, but it just prevents breast cancer in that breast, not recurrence in the affected breast, or in the area of it, or metastases.
I think you are adopting the right attitude to living with all this, which is to get on with your life as normally as possible.
I was sorry to hear that you were having some bone pain because of your Taxol treatment. I do hope this will subside. Chemotherapy is the most challenging part of this cancer treatment, so look after yourself, drink plenty of water, get plenty of rest and try to remain as positive and cheerful as you can.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello everyone,
I am popping in to say hello and to wish all of you a good week. The thread has been very quiet for the past three days, so I hope that means you are all getting on with your lives and not letting brreast cancer take possesion of you.
I do hope all is well with Carolben, as we have not heard from her since she started her Taxol treatment on Friday February 15th. I do hope you are not feeling too unwell.
Too all of you going through chemotherapy, just keep looking forward and remember that you can get through this.
Adagio, susaninicking in Germany, JennUK, what is happening now?
To all of you who usually post, even though you have finished treatment, remember others need your support.
Wishing all of you well.
Love.
Sylvia xxxx
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Hello Michael,
Thank you for your post. It does sound very bureaucratic in Northern Ireland, but do not give up.
I do hope you will get your appointment soon at ENT for a biopsy. It is scandalous that people are having to wait up to 45 weeks for an appointment. I do wonder what is happening with the NHS. Recently, I was watching a programme about 1945 when the Atlee government came to power and all the good work his government did in establishing the NHS in 1948. I do wonder what he and his government would make of what is going on now.
It is fortunate for you that you have this health coverage that can help you to get your treatment. I do hope it will all happen for you soon.
How is your work going? How is Janette's Foundation going?
I took a break from the thread for three days, as I was feeling tired and in need of relaxing, so I have been doing some reading, listening to some music and generally chilling out!
I do hope you will have a good week.
Best wishes.
Sylvia
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Hello sam52,
I just wanted to let you know that I went for my full blood test and phoned up the surgery to get the results last week. They were in three days after I had the blood tests. I phoned the surgery and the receptionist read out the results over the phone. Everything was normal and my calcium level was 2.04 (the range is 2.05 to 2.55). Guess what? I asked for the parathyroid hormone level and I was told there was nothing about it. I felt annoyed because I had specifically asked for it and the doctor and the nurse had confirmed my request. The receptionist said it might come later. I phoned this morning and there is nothing.
I shall see my doctor on Friday and try to see what is going on.
I think that perhaps they have not bothered to do it because my calcium was at the low end of the normal range. I think it is about time that PTH was a part of a normal blood test.
I thought we had decided that normal calcium levels did not necessarily mean normal PTH. What do you think?
I do get fed up with having to wait so long to see your own GP. On average you have to wait three weeks so I suppose I am lucky that it will be only twelve days when I actually see her!
I hope things are not too bad with you and that you will have some relaxation this half-term.
Thinking of you.
Love.
Sylvia xxxx
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Things are plodding along slowly here but this week was the continuation of the "2013 Chemo Tour." We can choose where I go for chemo so we are checking out 3 possibilities. The first seemed good. The private doctor/clinic we went to today was far, terrible traffic, tons of messy construction and NO parking! We found something finally and had to hike for 10 minutes. In snow and ice. Wrong boots, no hat! Then the practice was CHAOS! So no. We did not even wait to see the doctor. The big university hospital visit and 2nd opinion on the clip is tomorrow, we'll choose, finish up with the pre-doctor things, get the port done (groan), get the dreaded mammo in the search for the missing clip, and assuming it is not there, chemo starts on March 6th. My first chemo will be FEC so any and all tips, things to prepare for side effect-wise will be greatly appreciated. Thanks Silvia for your post.
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Hello Sylvia - just checking in with your thread. It is wonderful that you continue to give help and support to those in need. Just to fill in others - I am a Brit living in the US (more than 25 years). Look at my stats - they were kind of scary, TN and stage IIIc, and had lumpectomy, chemo and rads. But in June I will be 4 years out from dx and everything is fine. It does get better! I am planning a trip back to England May/June to see friends and family. Looking forward to it.
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Hello susaninicking,
Thank you for your post. I do hope that you will soon be able to settle down and have some calm to go through your chemotherapy. A diagnosis of breast cancer is bad enough without all these upsets in addition. I do wonder sometimes whether our consultants and oncologists have any idea of the stress, fear and anxiety that cancer patients go through. They may be the experts, but I feel that unless you have been through the cancer journey yourself, you have no inkling of what it is like.
I was amazed that you had a choice of where you can go for chemotherapy. I do not think you have a choice here, but I could be wrong.
It sounds as though checking out your three possibilities was quite an ordeal. It looks as though the first one which you described as good was probably the best one. If it were me, I would not want to have to travel far for my chemotherapy treatment as it would be too tiring in addition to the treatment. I would want my treatment at the same centre or hospital as for my surgery and radiotherapy and I would want the same team to be involved. I had all my treatment done at the Royal Devon and Exeter hospital and my oncologist and breast cancer surgeon worked together. They are two wonderful women in whom I have complete trust. They are organised, and sympathetic and go that extra mile. I am very lucky to have them.
I do hope that all will go well tomorrow when you visit the big university hospital and get a second opinion of the clip. Incidentally the Royal Devon and Exeter hospital is a university one and works closely with an organisation Peninsula at Exeter University, which is just up the road to the hospital.
I do hope you will get everything cleared up and will be able to start your chemotherapy on March 6th. I have noted that you will be getting FEC which is quite common.
Reading through various threads, I understand that dose dense is now the most recommended (every week or every two weeks, as opposed to every three weeks) and is easier to tolerate, so you need to know which one they are proposing for you.
It is hard to know which side effects you will have, as it is all very personal, but, again reading the threads, nausea, perhaps vomiting, and hair loss. I would think hair loss is definite, unless you have a cold cap, but nausea and vomiting is individual. Try not to think too much about side effects. Just look after yourself and remember to drink plenty of fluids, especially in the first few days after treatment. Eat as sensibly as you can, get plenty of rest, avoid raw foods and seafood because of the possibility of infection, avoid crowded places and sick people, get any dental work done before treatment, get flu and pneumonia injections if you have not had them. I am sure others here will be able to offer other information and tips. Patients often get sore mouths and rinsing with a little bicarbonate of soda in warm water can help. Pineapple, especially canned in its own juice, is very refreshing, as is juiced avocado.
There are others on the thread going through treatment, such as JennUK, who come from Scotland, and should be starting chemotherapy for recurrence. Carolben in South Africa has just started Taxol chemotherapy for mets to the lungs. Adagio in Canada and PeggySull in the US are also going through chemotherapy. You can all support one another on this thread and your experiences will help any of the newly diagnosed who may be viewing. Liv, in Australia, is going through oral Navelbine, but has not long been through chemotherapy.
We also have BernieEllen, linali and Mumtobe, all from Ireland, and have all been through chemotherapy. We have others such as Lolalee, InspiredbyDolce and FernMF who can all be of help.
Remember, too, that you can talk about anything you like that you feel is therapeutic and will help you get through this difficult journey.
I have been feeling somewhat tired lately after having problems with my left foot and today went to our local hospital in Exmouth to get it sorted out. It turns out that I have a sprained ankle and tendinitis which will take a long time to clear up. Two years ago I had plantar fasciitis, which is a strained muscle under the heel. I do wonder whether all this has been weakened by my cancer treatment as I also have the peripheral neuropathy of the feet from the chemotherapy treatment. I feel as though I am going to have to cut back on the gardening, as standing for long periods is not advised. In the meantime, I have loads of exercises to do to try to heal everything. I do feel as though I get minor problems since I was diagnosed with breast cancer and had the treatment.
I do think of all of you and hope all will be well and that the chemotherapy will not be too difficult for you.
Wishing you all the best.
Love.
Sylvia xxxx
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Hello Gill,
I was so glad to hear from you. You have become a very special person to me and I always look at all your posts as they are always very informative.
Thank you for your kind words. I do feel so sad about all these young women with young children being diagnosed with TNBC and other breast cancers. I feel there is something seriously wrong somewhere.
You have been in the US for a long time. Twenty-five years is a lifetime. I do not know your age, but would be interested to know whether you have still spent more time in the UK than in the US. Do you still think of the UK as “home”? Even after seventeen years in Canada, I still felt the UK was my home. I also spent six years in France and three years in Morocco, so am somewhat rootless. I spent the first nineteen years of my life in London, but it has changed so much that I cannot identify with it. I also spent three years in Yorkshire. I have been in Exmouth, Devon for eleven years and shall probably stay here now.
You and I can show others that we should not take too much notice of statistics, prognosis etc. Congratulations on nearing four years out from diagnosis and being fine. The newly diagnosed need to hear this. I shall have been eight years out in June this year and yet on diagnosis I was told the prognosis was not good! We are here to inspire and encourage others.
I do hope you will have a good trip back to England in May/June. Your work sounds very interesting I think I shall have a listen to it this week.
Please post as often as you like. I do read the thread that you have brought back to life about losing weight. Do you find it useful doing this with others on line? I have a cousin who has lost seven pounds in four weeks by going with Weight Watchers. She can eat what she likes but cannot go over 26 points, which must amount to so many calories. I have a friend who has lost 14 pounds in not many weeks by going on a low carbohydrate, high protein diet, akin to the Atkins diet. She has now introduced some more carbohydrates, but has cut out bread altogether. What do you think?
I have been reading recently that in the western diet we have too much salt and sodium and that it is not in ratio with potassium. This is causing weight gain and high blood pressure.
Wishing you all the very best, Gill, and keep well.
What do you miss most about the UK?
Love.
Sylvia xxxx
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I had taxol #3 two days ago and the infusion went smoothly. I had a reaction to taxol #2 which was most unpleasant, so this time they put it in really slowly and watched me continuously. I was there for 7 hours in total. So, one more to go and then I am done with chemotherapy!! I took my neulasta shot last night and no bone pain is evident yet. I also take claritin daily to help with the bone pain from the neulasta shot. SO far neuropathy is negligent - I do ice my hands and feet during the infusion which I believe helps and then I take all the B vitamins and L-glutamine.
So wonderful to read everyone's stories - they are an encouragement. Thanks Sylvia for keeping this thread going. Sorry to hear about your bad ankle - sure hope it gets better soon.
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Hi
I contacted the hospital today about my appointment to see an ENT consultant and I was told that I am on the urgent waiting list. I asked for an indication when I would be seen and I was told that they had people from December who had yet to be seen, so she estimated May. I personally think that is shocking. The urgent list will include patients with throat tumours and a delay of that sort must mean that some will die prematurely. I wrote to the Belfast Telegraph newspaper but I don't know if they will publish.
This has all arisen because local GP's used to carry out procedures but the health board worried about the power that they had passed to GP's and brought it all back to the hospital.
My stepson is putting together a press release for the Janette Collins Foundation and he asked me for a quote to summarize what TNBC is all about. I have come up with this: "Triple Negative Breast Cancer is the least known and researched sub type of breast cancer but strikes the youngest of women with deadly ferocity." How does that sound? Any other ideas?
Michael
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Sylvia - I am always amazed at the care and detail you put into your posts. So, a little about me. I am 58 now, 54 at dx and grew up in Lancashire. I first came to the US in 1979 at the tender age of 25 to visit my boyfriend, who was to become DH. I spent several years commuting back and forth taking temporary teaching assignments in England between trips. We got married in 1986 in the US and have lived in the same college town ever since. DH was a student for a long time, did a masters and then Ph.d over here and has been a college professor for 26 years. We have 2 boys, both in their twenties. When the boys were quite young we went back to England on sabbatical for a year which was wonderful, giving the boys a chance to get to know family. I had a job at Kendal College which was also wonderful, as I felt like my brain would atrophy after 6 years as a stay at home mother! Later I started a business and opened a preschool which kept me very busy for 12 years. Just before dx DH and I went to NZ on sabbatical. After closing my preschool, I began this podcast business which is a lot of fun (and work) and has required me to learn a lot of computer skills to do with recording and editing etc. We are very proud of what we have created, and I would be thrilled if anyone would take the time to listen. Feedback is very welcome.
So, it must be close to 50/50 about where I have spent my time. But I still feel that England is home and always will be. All my family is still there and my 2 sisters live within a few miles of where we all grew up. Although I could, I have not become a US citizen.
My BC dx was a big shock - as it is for most people. I've never felt that my family have really understood what it was like as they never saw me going through tx. For them, it is over. I don't know if it will ever be over for me, but cancer does not consume me like it did in the beginning. As time goes on I feel better physically and mentally.
I mostly miss family, but also the incredible beauty there is in England and the sense of history in poeple and places. Living in the pacific north west, nothing is very old!
I have rambled on ALOT. Sorry.
Have a great week everyone.
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Hello everyone,
Since we have been discussing chemotherapy treatment so much, I have been wondering whether there was any difference between the two taxanes, paclitaxel (Taxol) and docetaxel (Taxotere), so I decided to look up Wikipedia. I am posting the link to what I found.
http://en.wikipedia.org/wiki/Docetaxel
It used to seem that Taxol was more in use in the US and Taxotere in the UK, but I am not sure that is still the case. The most important thing to remember is that they are very effective in the treatment of TNBC.
You could always ask your oncologist why one is being chosen rather than the other. The experts need to be questioned so that we can keep a pool if information.
Best wishes.
Sylvia xxxx
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Hello adagio,
I was glad to know that your third infusion of Taxol (paclitaxel) went smoothly. I was glad to know they were vigilant this time because of your reaction to the second infusion. I was not surprised to know that you were there for seven hours in total. Chemotherapy is time consuming and I remember being in the chemotherapy ward for hours. We are dealing with dangerous drugs here, so they cannot take any chances. You will soon be out of this.
Have you any idea why Neulasta causes bone pain? This drug was not around, as far as I know, when I had treatment in the UK, but I had no problem with low white blood cell counts. It is good that it is available if it makes the chemotherapy journey smoother, but I am wondering why it causes bone pain.
I am not sure about the time sequence for neuropathy. I first felt that the soles of my feet felt strange as I was nearing the end of radiotherapy, but my oncologist told me it was definitely due to the Taxotere (docetaxel). For years since my treatment it has not bothered me, but it seems to bother me more now.
Do you put an ice pack on your feet and hands during treatment and for how long? How do you feel the B vitamins and L-glutamine help with the prevention of neuropathy?
I was so glad to know that you find all the different stories encouraging. At least those on the thread know what it is like going through breast cancer treatment in a way that non-cancer patients cannot know.
Keep looking forward.
Love.
Sylvia xxxx
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Hello Michael,
Thank you for your post. You are quite right that it is absolutely shocking that you are on an urgent waiting list and are being told that people from December had yet to be seen. This seems to be the name of the game with the NHS nowadays. It is all waiting. It is a false saving, if that is what the game is. Treatment will cost more in the long run. The NHS also refuses to go all out for prevention and waits until people are in dire straights and need urgent treatment. Things seem to have gone the same way with the GPs and appointments at the surgery. Here in Exmouth at my small surgery of four doctors you seem to have to wait on average three weeks to see the GP with whom you are registered. You may be able to see another doctor, but I insist on seeing my own doctor. Our health service is being strangled by bureaucracy and cuts to front line services, that is doctors and nurses. Nye Bevan would have a fit if he could see what goes on today.
My cousin's partner has been in agony and in a wheelchair for thirteen months after a botched operation in his local hospital for back problems. He finally had some surgery two weeks ago in a proper specialist hospital and was told that everything that the other hospital had done was wrong. He is now a lot better but very far from back to normal. This is a young man of forty three.
With reference to your urgent list, I do agree with you that patients with throat tumours will probably die, as it is a merciless cancer. The system probably counts on saving some money by having a percentage of patients dying before they get treatment.
I do hope your letter will get published in the Belfast Telegraph.
For years successive governments have been messing around with the NHS and it is in a right mess now. I do not like the big centralised system that we have now.
I would be interested to know when your stepson's press release gets published. I can see what you are aiming at with the heading for the Janette Collins Foundation, but I do wonder whether perhaps it sounds too much. Let us see what others on the thread think. We have to remember that breast cancer with triple negative receptors is not in the dark cupboard that it appeared to be when I was diagnosed in 2005, when it was not named as such. Since then I tend to think it has been getting quite a lot of attention in medical and research circles. Although it tends to affect a lot of young women, I get the impression that more and more older women are also affected. A lot of the women on this thread are in the fifty plus bracket and we must not forget that black women and Hispanic women are more affected than white women. We also need to be careful not to put the fear of death with young women that are being diagnosed.
I hope some of you reading the thread will come up with ideas to help Michael with this. Those of you new to the thread might want to have a look at the Janette Collins Foundation website, where there is a lot of information. You will see the details of Janette who had TNBC and died in March 2012. Let us try to help Michael any way we can.
I hope you find a way of getting some prompt treatment, Michael.
Best wishes.
Sylvia.
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Hello Gill,
Thank you for your very interesting post. It is always nice to know a bit about the people with whom we are mixing on the thread. On this thread I do feel that I get to know a lot of you.
What does your DH lecture in at college? Are your two boys very Americanised? You and your husband have certainly been very busy in your lives. It was good that you could come back to England on a sabbatical so that your two boys could get to know the family. What did you think of New Zealand? A friend of mine has just come back from a six week holiday there as his daughter is married to a New Zealander. He thought it was marvellous.
I can understand that you feel England will always be your home. That is how I have always felt when living abroad and I was often very homesick in Canada, even though I thought it was a great country. My husband and I did take out Canadian citizenship and went through the tests and ceremony for all of that. I thought it was a good thing to learn about the country and be tested on it. We also wanted to be able to vote in elections.
It is very true that breast cancer diagnosis comes as a big shock and it is a very lonely feeling because others just cannot understand what is happening to you. The worst thing is that it is always with you, even if most of the time, as the years go by, you put it away in a corner most of the time.
I do understand how you must miss your family as well as the beauty of the countryside in England, especially up in the Lake District. I also understand what you mean about the sense of history in people and places, even though sometimes I think here in England we live too much in the past and we have a lot that is archaic. I think you know my views on the monarchy!! Our system of government is also very antiquated.
Have you heard about the discovery of a human skeleton under a car park in Leicester? It turns out it is that of Richard III, the one famous for being a hunchback and supposedly the murderer of the two little princes shut away in the Tower of London. This discovery has been creating a lot of discussion, especially about where to bury the remains.
That is about all for today. Please keep in touch and I shall let you know as soon as I have listened to the podcast.
Love.
Sylvia xxxx
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Hello Gill,
I have just listened to your podcast about winter and thoroughly enjoyed it. It is excellent work that you and Linda have done and I am sure that all young children will delight in listening to it and doing all the movements through their imagination. Hearty congratulations.
It was so interesting as well to hear your gentle voice. What a good experience to hear the voice of someone I have only known through text and a photograph.
All best wishes.
Sylvia xxxx
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Hello everyone again,
I have finally been able to listen to a podcast from a BBC Radio 4 programme on February 5th. It was a programme entitled The Life Scientific and was an interview with a woman named Valerie Beral. The link is as follows and the interview is truly fascinating. It is about the association between the birth control pill and the development of breast cancer and also the association between hormone replacement therapy and breast cancer. Please try to listen to it.
http://downloads.bbc.co.uk/podcasts/radio4/tls/tls_20130205-0930a.mp3
What comes out of this as far as I could tell is that the number of breast cancer cases in the western world could be significantly reduced.
These are some useful links to this truly remarkable woman and Liv, you will be interested to know she was born in Australia and Professor Valerie Beral directs the Cancer Epidemiology Unit (CEU) in Oxford.
http://en.wikipedia.org/wiki/Valerie_Beral
http://www.ceu.ox.ac.uk/staff/21/valerie-beral
She is Principal Investigator for the Million Women Study and leads the international collaborative studies of breast, ovarian and endometrial cancer.
This is important information so I hope you find it interesting.
Best wishes.
Sylvia.
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Hello again,
I am having a day of doing research to keep up to date. It also takes my mind off my swollen ankle.
I have looked up L-glutamine, which adagio mentioned in her post and thought you might like to look at the following link. It is good to know that L-glutamine, which is one of the twenty amino acids, is readily available in every-day foods, such as beef, chicken, fish, eggs, milk, dairy products, wheat, cabbage, beets, beans, spinach, and parsley. The link is:
http://en.wikipedia.org/wiki/Glutamine
Best wishes.
Sylvia.
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hello lovelies.
Sylvia, valerie reminded me of you, research research and even though valerie had staff that could do that part of the research she couldnt stop herself until she was satisfied.
in relation to HRT and breast cancer i dont think too many would disagree with the link to breast cancer. still does not clear the question for me being a triple negative, not hormone receptive, how does the hrt relate to us trip negs.
was talking to my oncologist today and id taken in a trial that i was interested in for trip negs called sorbet. if you have a beta hormone positive, the drug tamoxifen could be used. being a beta positive i could see how then hrt could be a influencing factor to breast cancer.
take away the beta hormone im still not convinced that hrt would cause bc in a triple negative without beta.
carol & ben ((hugs)) how are you going? hoepfully things are working out and before you know it this will be all behind you.
everyone else, loves and best wishes.
xx
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gilly (hugs) you were not rambling, i enjoyed the read.
x
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chatterbox (hugs)
cant believe 45 weeks waiting>> disgusting.
as if having cancer is not stressful enough, do they realise "these powers of above" having wait times and financial stress could do us in before the cancer does.
keep strong!
xx
I wonder how carolben got on with her first pacitaxol.
Best wishes everyone
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adagio (hugs) one to go, well done. the worst is nearly over.
xx
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Hello yet again,
Because we have been talking so much about chemotherapy, I thought I would post the following link about steroids. I was wondering how many of them patients are taking during chemotherapy as I took very few and only for the first couple of days after treatment.
http://www.livestrong.com/article/119473-side-effects-prescription-steroids/
Thank you for your posts, Liv. I am taking a break now but shall respond later. Remember that cancer cells are mutating all the time and that although we were diagnosed with triple negative receptors, it does not mean the cancer started off as such.
I hope you are well and talk to you later.
Best wishes.
Sylvia xxxx
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Hello Liv,
Thank you for your interesting post. I think there can be no doubt that there is a link between HRT and the development of breast cancer and I do not know whether when they make the links they are distinguishing between the different receptor statuses that there can be in breast cancer. I think it would probably be that they study those women on HRT and those that are not, and it has been found that women on HRT have more cases of breast cancer. We have to remember that it is quite recent that receptor status was noted with breast cancer. I think before a person developed breast cancer and was just given what was available. This means that women now known as having negative receptors would have been treated in the past like anyone else. When Tamoxifen became available it would have been given to everybody. As I keep repeating, my oncologist told me that my TNBC did not necessarily start as such, because cancer cells are forever mutating.
A new factor now seems to be that they are dividing oestrogen into two parts and are talking about oestrogen alpha and oestrogen beta and saying that with triple negative women can be oestrogen beta but not oestrogen alpha. It gets complicated but that is how I understand it.
Can anyone shed light on this?
I have read about the Australian trial called SORBET which seems to be about treating triple negative breast cancer with beta positive oestrogen with Tamoxifen. My common sense says that if you have a bit of beta positive oestrogen then you are not triple negative. I remember some of the women on this thread in the past saying they were a small percent positive and were being put on Tamoxifen. I do not know whether this meant they had this oestrogen beta positive hormone.
I do know I read with some concern sometime ago about the idea of trying to turn triple negative BC into oestrogen positive so that they could use Tamoxifen. This sounds a bit like Frankenstein medicine to me!!! Tamoxifen does have nasty side effects and I have also read that if you take it long enough you can develop TNBC!!! Tamoxifen can cause blood clots, not to mention the risk of ovarian cancer.
What did your oncologist say about the SORBET trial and your interest in it? If you wanted to take part, would she test oestrogen beta positive and can you take part in this trial if you have had treatment?
For those interested in reading about this trial, the link is:
http://www.breastcancer.org.nz/AboutBC/Clinical-Trials/SORBET
I think there is probably a risk factor with the pill in the development of breast cancer. Valerie Beral seemed to be saying that the risk is in the small number of pregnancies that women in the western world go through that is not seen in the developing world. I remember her saying that a pregnancy at age twenty already lowers your risk of breast cancer by 10%, and another early pregnancy by another 10%. Obviously in an overpopulated world we cannot have untold numbers of pregnancies. She seemed to say that a type of vaccine in your teens was the answer and that it would greatly diminish the development of breast cancer. That is how I interpreted it but I am not a doctor. I have read that early pregnancies are better and that having a first child late or not having any children increases your risk. Please remember that risk factors are exactly that and they do not mean necessarily that they caused your cancer.
Like you, Liv, I am concerned we have not heard from Carolben. It could be she is just feeling too tired at the moment to post, but we must keep telling her we are thinking of her.
Love.
Sylvia xxxx
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