Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
Had injections yesterday but doc told me they may take 72 hrs to work. My DH had strong words with consult re letter, he didnt seem to think that it was his role never mind the 8 weeks that I spent trying to contact him. Anyhow must have worked by the time I went in for injections completely different attitude. Unfortunately it does seem that the most brilliant docs he a prof dont have particularly good people skills.TG I had hubby with me. As for docs and TBNC it is the junior docs who I mainly see now and other docs not cancer related are the ones that are unfamiliar with it. Think I met new woman at the centre who may be TN, but her diagnosis seems complicated and she was told that she could have 3 types of tumour.She is a fabulous woman and I hope that she finds the centre helpful and supportive.
HI FernFM,
Yes the most important thing is to find a nurse who can insert the needle 1st time. After the second time I insisted on the head nurse. It meant waiting A little longer but worth it. I think that you are marvellous to be going to work and thinking of your walking. I feel it is important to be able to get out into the fresh air and look up at the sky and the world around us. I had become very lazy and very inward thinking but thanks to my DH we walk regularly now.
I wonder could you give me some advice. We should be travelling to the US in September. We are flying into Charlotte and thinking of doing Ashville to Chattanoogoo then nashville then Lexington. We are heading back to my SinLaw in Locust Grove Virginia and need to break the journey approx half way. Would you know of any nice town to stop for 1 night We have to book at the last minute as my husbands brother is very ill and we may not go at all.
I would really appreciate it if you could help me.
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Just had my disability claim refused, again.
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Hi BernieEllen,
That is so crazy, what do they want as proof that we cannot do the same stuff as before. I have been to my TD but perhaps it would have been better to go to an opposition one who would make more noise about it and ask questions.
I have great respect for the people with disabilities who campaigned outside the Dail. Problem is with cancer there is no organisation to take up our fight, should be the cancer societies who lobby the politicians.Another thing too that alot of people are too ill, too worn out after treatment or just thankful to be here that they do not have the energy or where withall to mount a campaign. Publicity is a great weapon and those brave people shamed our government into changing their minds .
We need the consultants to be on our side too and admit to the impact of side effects on our physical and psychological lives. It makes me so angry and it is difficult to find the right place to start to fight the system or get them to admit to these long term effects. May be the blame culture worries them but I would have done the same thing regardless of the side effects , it was my only option and yes I am grateful to be here.
Off to meditation later, I 'm not sure if you believe in the power of healing light but we direct it towards people and situations and I will ask them today to send it to you. You have worked to help so many people and bring humour and laughter into many lives that are saddened and darkened, thank you.
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Hello Michael
I do admire all the effort you are putting in for the website in Janette's memory. It is very easy to make mistakes when typing.It must have been very sad and difficult marking the six months since Janette died. The roses, the candle and the photograph mark a very special moment.
I do remember the Post House, so I know where the Holiday Inn is. Things do change so much as the years go by. I certainly remember the CLEMENT JOSCELYNE store on the corner of a busy junction. I always used to think it looked very old fashioned. I wonder what will replace it? It did not appeal to my very modern taste in furniture. I was wondering whether the little Marks and Spencer is still on the High Street. When we have been back to Essex our main trip through Brentwood has been along the High Street, where there are now many pubs. Like you, I prefer Chelmsford. Raymond and I went there a great deal. What I liked about Essex was the countryside, but I do not think I could live anywhere in the South East now. It is just too busy and congested and the M25 is a nightmare. I think to have a civilised existence you have to live, coming from Devon, no further than Hampshire. With reference to Brentwood, I was surprised that it is once again prosperous.
I hope you are having a good stay in Essex. It must seem strange going from where you are in Northern Ireland to Essex.
Wishing you all the best.
Sylvia0 -
Hello BernieEllen
I was glad to know you enjoyed the photographs.Thank you for your tour of Harpenden, Hertfordshire. It was most interesting and I am sure you have helped to boost even more sales to that place. I was very interested to learn about the highway woman. There is a place in Essex known as Woodham Ferrers. I wonder if there is any connection.
I do hope you will get your disability claim accepted. I know there is a lot of trouble with all of this in this country and that lots of people are being taken off their disability benefits. I have been following this in the media and it is all about how everyone is having their disability benefits reviewed. There is an organisation Atcos (I think) which is calling in everyone for interviews. While they are being interviewed they are being scored and it seems that they all end up with a score of zero. This means they are able to 'work'. Some people have been forced back to work and then died. I feel that those who are genuinely unable to work are being punished because of the minority that are abusing the system. The present government here is making the most disadvantaged pay for the recession. This is such an unequal country. Today on the news, I heard that Save the Children is raising money for impoverished children in England instead of campaigning for children in the third world. It is absolutely disgusting that in England we have children living in poverty, whilst multimillionaires flaunt their wealth and avoid paying taxes.
Keep fighting.
Best wishes
Sylvia0 -
Hello linali
Thank you for your post. I do hope the injections will work.I think that people skills are a gift and that you either have them or you do not. I do not think that they can be taught and that most people do not have them.
I do think that with breast cancer all medical people should have basic information and that knowing about the receptor status of breast cancer is basic. How hard is it to know whether a person has positive or negative receptor status? I would also think that consultants and oncologists would be passing this information on to GPs in a patient's medical records.
I was interested to know that you had met a woman at the centre who may have negative receptor status. Do you know what kind of cancer she has? Does she have DCIS like you do or IDC (invasive ductal carcinoma), like 80% of women and regardless of their receptor status?
We are nearing the end of another week. I do hope it ends on a high for you.
Best wishes
Sylvia0 -
Good evening Sylvia
The M&S is there, although I don't think it is small, maybe they have expanded.
I would be grateful of you would read through the "Breast Cancer" section of my web site, as I do not have a clue what I am talking about and have put it together from reading elsewhere.
Michael
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Hello Michael
I think the M & S store must have expanded as it was very small.I have read through the Breast Cancer section of your website and all the information that you have there is correct as far as I am concerned, but I am wondering whether you are putting in too much information and too many links. Most of what you have said is available all over the internet and many women will probably have already researched it. I know that most of it has been covered on my thread, elsewhere on bc.org, and probably all the breast cancer charities. You may be getting bogged down in too much information. Perhaps you need to make it more simple and more personal. Have a think about what you are trying to achieve on your site. What I think you want to achieve is to raise awareness of breast cancer that has three negative receptors, i.e. non-hormonal and that presents a problem with treatment after radiotherapy, chemotherapy and surgery, because there are no preventive drugs to be taken such as Tamoxifen and Arimidex, which treat breast cancers with positive receptor status, i.e. hormonal status. These drugs help to keep hormonal positive breast cancer at bay but with negative receptor status there is nothing to help.
I think what we need is to raise money for research to find a way to prevent TNBC from developing in the first place and then to develop drugs that will keep it at bay, if this is possible. If not, we need less harmful drugs than we have at present to treat primary TNBC and hopefully drugs that will prevent metastases, because metastatic breast cancer is very difficult to treat.
To make it personal, tell your story about Janette from her diagnosis to her death.
I hope this will help.
I have been thinking about Janette and possibilities about why she developed metastases. The one thing I do not think you have mentioned, and possibly this is because you do not know, is what kind of breast cancer Janette had that had triple negative receptors. Were you not told this? She could have had IDC or she could have had metaplastic or something else. How many nodes were affected? I understand this can affect outcome, as do the BRCA1 or BRCA2 status. These things must be in her medical records.
I am just putting through some of my own thoughts and I do hope they will help.
Best wishes
Sylvia0 -
Hello everyone
I do hope that the past week has not been too bad for you and that you have had more highs than lows. My week has been very busy and I have not managed to open two books that I bought two weeks ago. I hope I may get to do this at the weekend.I hope that Dulcie has had a better week and that she and her OH have made some progress with their problems.
I do hope that FernMF is also not feeling too below par and trying to take things easy.
I hope all of you posting on the thread will have a good weekend.
I am sending special hellos to linali, BernieEllen, youngmommy, Lint_Roller_Derby (Betty). I was wondering whether you had your BRCA results from the tests you were having in August. I hope that sam52 is well and back in the routine at school.
Special hellos also to IzandLysandMum, BuddhaWolf and christina1961.
If you have any ideas for Michael, please post. Setting up his web for Janette is no easy task.
If any of you have any new information about TNBC please post and let us know. If any of you that are newly diagnosed are in need of help or information, do not be shy about posting so that we can help.
Thinking of you all.
Best wishes
Sylvia0 -
Linali,
I am in Chattanooga, so if you come this way, please message me and I will meet you and also recommend sites to see based on your interests.
Bernie,
Those are wonderful photos of a beautiful place. I am sorry to hear about your claim. I have a friend here in the US who went through similar struggles. She finally prevailed.
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Hello again everyone
I am posting to say that I have just received my latest e-mail from CANCERactive. You will remember that the last one was entitled What Makes a Cancer Come Back? Part 1 and the latest one is Part 2.You will remember that the first part was all about the fact that chemotherapy caused cancer to return by attacking healthy cells which produced a protein that the cancer cell went on to use to re-grow and protect itself from further drug attack.
The e-mail says that Chris Woollams believes it is essential to be fully informed about the risks of chemotherapy before you have it and asks the question "If you do not know all the facts how are you going to make better-informed personal choices and decisions about your own life?"
I would welcome your comments on this. I agree with Chris Woollams that we should have all the facts about the risks of chemotherapy before making our decision about the treatment.
In Part 2, he covers a different reason why cancer returns, namely cancer stem cells. Apparently according to the expert scientists carrying out the research, current drugs do not kill off the most important cells - cancer stem cells. He mentions a certain Dr Nicholas Gonzales who has always argued that cancer stem cells have to be tackled and he does this with some success using ENZYME THERAPY.
Stem cells are your natural repair cells in the body and some experts seem to think they do not exist. New research seems to prove they do exist and how they drive tumours.
This second article covers research on which foods help them and which ones hinder.
The links to this second article, Cancer stem cells in charge?, are:
Enzyme Therapy and cancer stem cells:
http://www.canceractive.com/cancer-active-page-link.aspx?n=469
You might like to read what happened to Dr Gonzales and his clinical trial. The title for the link is The scandal of the clinical trial on enzyme therapy.
In this latest e-mail Chris Woollams points out that CANCERactive is an information charity that believes you have a right to know what is going on and that the issue is not to sweep information under the carpet, but it is to develop excellent drugs that deliver an effective result without side-effects like possibly causing a cancer to re-grow.
It is mentioned that similar information was given about surgery and the possibility that it spread cancer.
Another interesting link is Complementary Therapies keep you cancer free?
Other interesting links are:
http://www.ournaturalselection.com/Shop.aspx?category=Health Information&subcategory=Books
http://blog.canceractive.com/2012/08/junk-science-number-27-brain-cancer-clusters-exist/
I do hope that all of you who wish to be fully informed about what is happening with all aspects of breast cancer and cancer in general will take the time to read these links at your leisure. Remember that we have always said that knowledge is power.
Wishing everyone an enjoyable weekend. Make the most of the last days of summer. To our North American friends, have a happy Labour Day on Monday.
Best wishes
Sylvia0 -
Thank you Christina
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Hi Christina ,
Thanks for that. Our trip is looking like a far away dream at the moment and it is very possible that we will have to postpone. My B in Law is getting worse.
I appreciate your reply and it is always great to have local knowledge.
Hope your weekend is good
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Hello everyone,
I was so glad to know that so many of you appreciated all the photographs that I have posted over the past few weeks.Reading some other threads I picked up on one post that was expressing concern about people mistaking opinions for facts. When you read any of the threads, read them carefully and do not mix up facts about TNBC, and anything connected with it, with facts from research etc. Remember that the threads are there for information, comfort, support, relating experiences, giving tips from these but not advice, except in the form of saying what you might do, or have done, in a certain situation.
I hope you are all enjoying the autumn weather. Here in Exmouth it is a beautiful day and in fact September has been very kind to us. It was my birthday last Saturday, September 1st, and I had a lovely day with a drive from Exmouth to near Tiverton along the scenic road. Mid-Devon has beautiful countryside and I think is more beautiful than East Devon where Exmouth is.
Wishing you all the very best and sending comfort and support to all of you in dealing with the stressful situations created by a diagnosis of breast cancer. Remember this is a thread where you can rant as much as you like.
By the way, I have managed to start one of the novels I bought come time ago. It is entitled 'A Death in the Family' by Karl Ove Knausgaard. He is a Norwegian writer. This is an English translation published in 2012. I knew from reading the first page that it was a novel with great depth and it is superbly written. I have read 30 pages!!!
Whatever you do, do not let breast cancer get you down.
Thinking of you all.
Sylvia0 -
Thanks Sylvia . . . ready for round 3 on tuesday . . . well, not "ready" . . .fearful . . . between the bad sticks IV wise last time and this leg pain, if it continues to escalate through the next two rounds, I will definitely NOT be doing much . . . this week, the leg pain has been as if I had run a very long road race EVERY day . . . . uuugghhhh
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Hello everyone again,
I just felt I had to post again with some thoughts of my own about chemotherapy treatment causing cancer to come back and the information about stem cells.From the CANCERactive news I know that a lot of e-mails went to Chris Woollams saying that they welcomed this information but one said it should not have been given. I suppose what you think depends on how much you want to know about the disease with which you are coping.
Information is not given out to frighten people and it is not given out as advice. It is simply information and not advice or recommendation. I would be interested to know whether this has frightened you and made you think twice about chemotherapy. All I can say is that had I known about all this information seven years, two months and twenty days ago, when I was diagnosed, I would still have had the treatment. If I had not had six months of chemotherapy, followed by surgery and radiotherapy, I am pretty sure that I would not be alive today, in fact I do not think I would have survived many months. As it is, I have gained more than seven years of life that I did not think I was going to have. If my breast cancer comes back, if I develop metastases, or if I have a new primary, any time in the future, I would still have gained all those years of life. Refusing treatment now, to keep you alive, because of what may happen some time down the line, does not appeal to my own common sense. We all have to make our own decisions.
We urgently need better and less lethal treatment, but, for the moment, we have to deal with what we have got. A friend of mine used to say 'when you have lemons, make lemonade'!
On another subject, I think we should all be vigilant about what we say on these threads. After all, anyone can join breastcancer.org and we all hope that everyone is doing it with the best intentions, but, like anything on the internet, we cannot be sure what lies behind a given user name. We do not want to have some of the problems that facebook appears to have, where the social networking may be being used to pry and spy. breastcancer.org is a very useful charity site to help those diagnosed with breast cancer and give them information. I hope it does not get misused. We all know there have been trolls on the site but it is best to ignore them.
Thinking of you all.
Sylvia0 -
Hello FernMF
It was nice to hear from you. We shall all be thinking of you on Tuesday when you have your third round of chemotherapy. We shall all be hoping that everything goes smoothly.Have you mentioned your leg pain to your oncologist? Have you stopped your long walks for the time being?
You are nearly through this, so the end is in sight. Keep looking forwards.
Best wishes.
Sylvia xxx0 -
Hello everyone,
I have been reading through the next few pages of the thread when I first started it and found this posting on page 6. Since I thought some of you may not have the time or energy to look back at all the pages, I have brought this one forward in the hope that it will be of help to the newly diagnosed."I have been reading through some of the threads, books etc. and wondering whether some women, especially newly diagnosed ones, are finding all the different drugs mentioned a bit overwhelming and confusing. I thought it would be useful if we could get them sorted out on this thread to help patients.
With TNBC, when you are newly diagnosed, you will be told of the three basic tools for treatment. They are a combination of surgery, chemo and radiotherapy. It is with the chemo treatment that the list of drugs start to grow. Unless there have been big changes since my own diagnosis, I think, especially in the UK, that the treatment remains much the same. The drugs are as follows. Others are now being added to this.
Chemical name Brand name
doxorubicin Adriamicin
epirubicin Ellencecyclophosphomide Cytoxan
docetaxel (Taxanes) Taxotere
paclitaxel (Taxanes) Taxolcisplatin Platinol
carboplatin ParaplatinThere are other names of drugs that keep appearing, but I am not sure when they are used for TNBC or indeed for other breast cancers.
We all know that the real challenge in the treatment of breast cancer is often not with primary cancers, which often respond well to chemotherapy treatment, but with metastases (spread to other organs), or recurrence.
These are names of some of the drugs that keep appearing.
capecitabine Xeloda
This is an anti-metabolite drug. It stops cells making and repairing DNA, which stops cancer cells reproducing. Xeloda changes capecitabine to fluorouracil in the body, if I have understood correctly.zolendronic acid Zometa
This is a bone targetted therapy for patients with bone metastases.
It is being used for breast, lung, renal and prostate cancer.
It belongs to the group of drugs known as bisphosphonates.bevacizumab Avastin
This is a drug that is used for various cancers, including breast cancers. It is a drug that is used to stop angiogenesis, that is the formation of new blood vessels, that cancer cells need to reproduce themselves. I think it is used for lung metastases.ixabepilone Ixempra
This drug is used for advanced breast cancer. It acts in a similar way to the taxanes, but is said to be more effective and to have fewer side effects.I hope this list will be of some help.
Two drugs often mentioned to deal with the side effects of chemotherapy are Neulasta and Neupogena. These are used to fight infection and build up white blood cells.
If you are wondering, from one of the postings, what a muga scan is, it is used to monitor heart problems.
EPO is a blood boosting drug. EPO = erythropoietien = a hormone that boosts red blood cell production.
If there are other drug names or terms that you do not understand, please ask as we can all sort them out together.
We all know that we have to be vigilant when looking things up on the internet. Apparently, the best sources seem to be breastcancer.org or cancer.org. There are good research papers on the internet, if we have the patience to look for them.
That is about all for now. We are all thinking of those going through all the various stages of treatment, dealing with recurrence and metastases, or living healthily, but with the ever present thought of something happening to change the clear pathway.
Sylvia"
Reading through these pages I saw that christina1964 posted on page 5 as she was starting her cancer journey. It was also on that page that Britchick posted, a Brit who had been living in the US for a long time.
On page 6 bak94 started posting as she began he breast cancer journey for the second time. ElaineD from the UK also posted, along with suelynn (posting for her mum) as well as the incredible suze35
who died. I felt sad as I read her posts.On those pages I also mentioned the books by Xandria Williams. Have a look at page 6 and the information in these books about possible cancer causes and preventions.
It was wonderful to re-read all the dialogues on those pages from TEK2009, josephine, gillyone and I. There was so much information.
I hope your weekend is going well and that all will go well with those facing chemotherapy treatment or other treatments in the coming week.
Best wishes.
Sylvia0 -
Hi Sylvia, and all friends here,
I feel exactly like you , Sylvia, when it comes to chemotherapy...although the info regarding the possibility that chemo, while destroying cancer cells might be actually stimulating others down the line (on the Canceractive site) is not what we'd want to hear, I can't say I found it frightening...I think my diagnosis was frightening, when I let myself think about the possibilty of mets, that's frightening, but reading the info posted by Chris Woolams is just another piece of info which might or might not be true, or just partially true, and hopefully will never apply to me... and I would also have chosen the treatment I did have, the works, wanting to deal with the situation THEN, and not think too much about a future which might never happen...
Sylvia, I know Devon very well and you are lucky to live in such a beautiful part of the world. I spent a year studying at Exeter University and rented a small cottage with friends just north of Dartmoor, a tiny picture postcard village called Sampford Courtenay, about 5 miles out of Okehampton. Brilliant walking, great pubs, and if I remember correctly we paid 15 pounds a month rent for a furnished 3 bedroomed house...could it be, or maybe it was 15 pounds a week??? hard to believe, but then that was in 1978!
I looked up 50 Shades of Earl Grey, and apparently it's a parody of the original and sounds hysterically funny...I wish I'd thought of doing that, then I could give up teaching...going back to work in a week and getting that 'school fever' feeling...but managing to ignore it as my daughter is still here, and sil coming tomorrow, so lots of outings, cooking laughing and fun...long live holidays.... best wishes to all
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Hello Maria_Malta
It was so great to hear from you. Your posts are so important on this thread. I am glad that you did not find the information from the CANCERactive site frightening. I agree with you that the diagnosis is frightening. It is something that I shall never forget, even though I knew before I was told that I had breast cancer. I was also frightened when I was told that I was oestrogen and progesterone negative and that therefore, because Tamoxifen was of no use, the prognosis was not good. Like you, I am also frightened when I let myself think about recurrence, metastases or a new primary. That is why life is never quite the same for me, although most of the time I carry on as normal. I was also frightened because there were four other women in my neighbourhood diagnosed with breast cancer at roughly the same time, but all were on Tamoxifen. I think, that after diagnosis, if we want to live, we have to accept the available treatment. I remember my breast cancer consultant surgeon telling me that not everyone was accepting treatment, but I have no idea what has happened to those women. I do think I was silly to delay my treatment for so long, while I got a lot of information. I would not do this if I had my time over again and I certainly tell others not to delay.I am so glad that you know Devon. It is one of the best parts of England in which to live. I am so glad that my husband and I moved here ten and a half years ago when he retired. I could not go back to the south east where we lived for nine years after returning from Canada, where we were for seventeen years.
Exeter University is a really beautiful establishment in which to study. It has wonderful grounds and has grown by leaps and bounds. So much has been added to it since more and more students started to attend university. There are lots and lots of very plush apartment blocks that have been built for students to rent. It very different to how it was in 1971 when my younger brother started lecturing there in the French Department.
It is strange to know that you were in Devon in 1978, because I was teaching French in Devon in 1976 for a year before going to Canada. £15 a week sounds about right for 1978. You were quite a way from Exeter. I have been to Okehampton a few times and shall have to pay a visit to Sampford Courtenay. I think I have been there but I have to refresh my memory. I first started coming to Devon in 1971 when my brother started working at the university. Exeter has changed a lot since then and is now very much the big city.
I was interested to know that you had looked up 50 Shades of Earl Grey. I understand that it is very funny. I have not read any of these books, but do not think they would be my cup of tea!!!
I was in Smiths in Exeter this week and these kind of books are growing like mushrooms. There are two huge displays in that shop and I cannot believe all the different titles and writers that have sprung up since 50 Shades of Grey appeared. This book has made the writer a multimillionaire. It is alright for some. I think her sales have surpassed those of J K Rowling. By the way, did you know that she went to Exeter University and I think my brother taught her.
There has been so much talk about 50 Shades of Grey. The author was interviewed on television but I found her boring and turned the programme off. A couple of weeks ago there was a whole page in the Observer about this book and it was written by the person who wrote ' I am a Submissive'. This book is now up there with 50 Shades of Grey. I do wonder what these books say about women.
This morning I listened to A Point of View on Radio 4 at 8:50 am and that was all about 50 Shades of Grey and what it means. On A Point of View, the woman was stating that if a man had written such a book, he would have been accused of writing pornography. Fred West, the mass murderer was even mentioned. What do you think is happening to women who are writing and reading all these books? I feel concerned by it and for a long time I have been concerned about the behaviour of young women with their binge drinking and way of dressing. They seem to be flaunting themselves as sex objects and lacking in self respect and modesty.
When you think of what is happening now and the books that are selling faster than hot cakes, it makes you wonder what all that fuss was about over Lady Chatterly's Lover by D H Lawrence. I enjoyed reading his novels ages ago and he is of course considered a classic. Even Lolita by Nabokov seems tame if what they say about 50 Shades of Grey and the rest is true.
Would you believe that there is even a sppof on 50 Shades of Grey in my husband's professional engineering magazine. It goes as follows.
Book of the Month
Fifty Shades of ClayBest-selling adult novel set in the erotically-charged world of geotechnical engineering. Student soil scientist Kay Olin finds herself attracted to the enigmatic environmental engineer Clay Modelin and an earthy relationship ensues. Touches heavily on BDSM practices (Basalt, Deposits, Sediments, and Montmorillonite-smectite). Also contains a huge amount of graphically-described fracking.
'Has so many layers.....' - The Times Literary Sediment.
It would be nice if we could all write such best selling books and then, as you say, you could retire from teaching and I would have the money to do what I want and to help some pretty needy people.
I understand how you feel about going back for the school term. I think teachers get the same nervous feelings as students.
I hope you enjoy all the time that you have with your daughter. Make the most of it.
I have read a bit more of the book today I mentioned earlier on. I am so impressed with it. I also want to read two books by Christopher Hitchens. They are Arguably and Mortality. I would not mind reading some of his books of quotes.
That is all for now. Try to keep posting.
Fond thoughts.
Sylvia xxx0 -
As always Sylvia, you are right on the mark with your research, comments and thoughts.
This site has and continues to be, for me, the best i have found.
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Hello BernieEllen
It was nice to hear from you and thank you so much for all the kind things you said about the thread. It makes it all so worth while. I do need to know that people find the thread beneficial. I do so want to help people who are diagnosed with breast cancer. The thread is also for their carers and loved ones. They can be as shocked by one of their loved ones being diagnosed with cancer.I hope all is well with you and your husband. Are you still very busy with all the useful things that you do? You are welcome to post about anything you like that is of interest to you and makes you who you are.
Keep well and happy. Best wishes.
Sylvia xxx0 -
Hello sam52
I hope all is well with you and that you have settled back to the school routine. There are only 113 days to the end of 2012, so let us start counting. This has been a strange year in which despite all the problems this country is facing, you get the impression that it has been one long LET'S PARTY GB!I have a question for you. What do you know about Genostics? I know only that it is about blood tests and matching chemotherapy drugs to what is found in the blood. I have found one link, which is as follows:
https://www.genostics.com.au/about/introduction/
You know that I value your opinion and I would appreciate it if you could find the time to post and tell us what you think.
If anybody else knows anything or if there is anyone who has gone through this, please post and let us know.
Best wishes.
Sylvia xx0 -
Hello everyone,
Another update from page 6 to save you going through everything.
"Hello everybody.
I hope you are all managing your different stages of treatment and that here in the UK you are enjoying some of the fine weather. Please let us know how you are all getting on and also when you have anniversaries of your diagnosis. I would like to say a special hello to Josephine as I think she may be having treatment or results today.
I thought I would start posting some bits of information that I have picked up from my reading of the Xandria Williams's books. This is about early warning signs, the predisposing factors that could be leading you in the direction of degenerative diseases in general and of cancer in particular. She divides her books into preventing cancer and preventing recurrence or spread if you have already had cancer. She believes in getting a test done called the CA profile. She then recommends the following steps.
1. Improve your diet.
2. Correct any nutrient deficiencies.
3. Improve your digestion.
4. Support your liver.
5. Get rid of toxins.
6. Correct your energy production and your sugar metabolism.
7. Balance your neurotransmitters. Reduce your stress levels and give your adrenal glands a chance.
8. Correct any other predisposing factors.
9. Reduce your risk factors.
These are just the basic steps and she goes on to expand them in the various chapters of her first book, Vital Signs for Cancer.
What I have picked up from the above steps is that stress appears to be a big factor in the development of cancer. It is stated that it is generally recognised that cancer becomes apparent two to three years after periods of extreme stress. It is important to learn to relax, to laugh and have fun, and try not to worry. I know this is difficult with a diagnosis of BC, but we somehow have to learn to do it or deal with stress that is unavoidable as best we can. It also states that exhausted adrenal glands are a prime cause of several problems that generate triggers which convert healthy cells into cancer cells.
I got the message loud and clear from my reading that in dealing with cancer, whatever stage you are at, you should eliminate all sugars from your diet. It appears that sugar feeds cancer cells.
Among predisposing factors are stated an under-active thyroid gland, an under-functioning immune system and faulty oestrogen metabolism.
I must point out that I am just giving a basic idea about some of the things that I have been reading. They are there for you to read and to form your own opinions. We can discuss anything you like about this information. This thread is all about exchanging ideas, experiences and supporting one another.
Best wishes to all of you.
Sylvia."
Hope your week gets off to a good start.
Best wishes
Sylvia0 -
Thanks Sylvia. Will mention my leg pain/aches and general weakness at the appt tomorrow. Yes my weakness has severely ended my walks. I end up exhausted after a day at work. I walked 2 miles Saturday. Just a bit yesterday and nothing today. So tired. I was convinced that my life would not change, that I could be strong. Alas, I am human and average in every way. Uuuggghhh.
Thanks too for your continued posts. Educational and informational. Also, inspirational. At least to me.0 -
Hello FernMF
Thank you for your post and for your very kind words about the thread. As long as I know our thread is helping people I shall keep it going. A breast cancer journey is not one that you should embark on alone. I do hope that all will go well with your chemotherapy today. Have a good rest when you get back home and rest as much as you can during the worst weeks following treatment. I hope you will have got help and advice about the leg pain.Thinking of you.
Sylvia0 -
Hello Michael
I was wondering how you are and whether you are back home from Brentwood.I do hope all is as well as can be expected. I hope you are making progress with your website Foundation for Janette.
Remember if you need any help I am quite willing to help and encourage you in any way I can. Do not be too shy to ask. I like to think that we are all a team on this thread.
Wishing you a good week.
Sylvia0 -
Hello everyone,
I just wanted to wish those of you going through treatment a good week. Just remember that, especially with chemotherapy, it can be bad just after treatment and the first week, but it should gradually get better. Just keep an eye on yourself and drink plenty of water. I was told to keep an eye on my temperature, which I did. I also kept an eye on my blood pressure. These are little things that we can do ourselves to make sure nothing dire is happening.Thinking of you all.
Best wishes
Sylvia0 -
FernMF, please, please take it easy. I thought I was superwoman and worked right through six rounds of A/C chemo. Driving 30 miles a day. Ended up having a mini breakdown. WBC so low, nearly had to have a transfusion, delayed the end of treatment and the start of radiotherapy by a month. Haven't been able to return to work.
I know it is so different for everyone, however, we need to listen to our bodies during this difficult time. Sylvia's advice is the best I have taken, good diet, rest, more rest and pampering time for ourselves. Eventhough I do sneak the odd glass of red wine - purely medicinal of course.
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Hello Sylvia Sam52 BernieEllen and Marie_ Malta..
I decided to come back in this name and stuff the person possibly reading me!
I saw the surgeon yesterday and he and the 'head' breast care decided that my 'wound' looked fine ..even though i thought the 'redness' area was getting larger..in fact it was/is..and they would not need to see me again!
Today i saw the Onc and she looked at the redness and i said...i think it has spread! She says oh yes i think it's a spread too...cancer spread..that wasn't what i was saying ..so that was a bit of a shock to say the least..and i asked if i would see Xmas..and she said she didn't know..with this 'type' of cancer.....
Also i am not starting chemo today..as i still feel unwell..she appears to think there is no hurry?
We had our wills done today..that's a relief!
If my doctor cannot give me a YES tomorrow for PCT funding ..my OH has said he will pay for it all....and i have a dear cancer friend who will travel to London with me!
I have not read any of your recent posts sorry....I hope you are all feeling well?. I am on a 'rollercoaster' of emotions again..the team were more pleasant today..but i am still shocked at the 'casualness' and no real explanation as too ..IS it really a cancer spread... it took 20mins to get any blood out of me too!
Dulcie xxxx
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