Calling all triple negative breast cancer patients in the UK
Comments
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Hello i-sha
I was just wondering how you are getting on. I do hope that you have started your radiotherapy that you said would begin in January 2012. I hope all is going well if you have started it. In general, we all found it easier than chemotherapy.Good luck. We are all thinking of you.
Best wishes
Sylvia0 -
Hi Slvia, i'm with you on the well trained hubby. All his family were military, so was he so deeply ingrained - neat and tidy. If i'm not careful he starts to prune my garden into straight lines.
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Hello Bernie Ellen,
I had to laugh at your post. We are lucky women to have such well trained husbands. I hear so many complaints about untidy husbands. I could not bare that. I have to have everything lined up neatly in the food cupboards,etc. I saw one of my cousins after a long time and I discovered that he was exactly the same. He has to have everything lined up in cupboards. I am a fanatically neat gardener but I do not know about straight lines!
Best wishes
Sylvia
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Bernie,
I love your puppy! He looks as if he has a coat of velvet!!
Sylvia, I am plodding along through this trial, getting a little housebound due to having to lay low due to my low white counts but managing to work full time. I am going out next Wednesday with friends to dinner so that will be fun. Basically though, I am at the point where I am counting down the days until I'm finished with this chemo!
Bak, I may be joining you in the classroom! Like Sylvia said, it has to help us with the effects of chemo! Philosophy was difficult when I wasn't doing chemo, however! I enjoyed it, though. I majored in sociology so I took classes from many disciplines.
I am going to take an online nutrition or psychology course this summer to prepare to go back to school. I could take anatomy but I've heard it is extremely difficult to take online, so I think I will save that for the classroom. I have had psychology courses before, but this is a different one that is required for nursing. I am going to get as many classes out of the way online first. I finally decided I needed to live as if I am going to live - I know that may sound silly, but I found myself in a holding pattern of sorts, waiting for the next shoe to drop. Emotionally I'm still there in a holding pattern, but it may be like other times in my life when I found that if I go through the motions, the emotions follow afterward. I am tired of my career after 20 plus years and it has changed so much and become more unstable, so I am going to go in a different direction. I would love to have a job that ends when I walk out the door. I want to have more free time.
Best wishes for everyone's weekend! I am going to do some walking tomorrow. The weather here has warmed up a bit so I am ready to get outside!
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Hello christina1961
It was nice to hear from you. I was glad to know that you are still hanging in there. Keep focusing on that February 17th date. It is not that far off. I can understand that you are getting a bit fed up with being housebound, because of the low white blood counts, but it will soon be over. You can then put it all behind you and look forward to a much better 2012.I was interested to know that you mentioned to bak94 that you might be joining her in the classroom. As I said to bak94, this will be good for stimulating the brain. I am sure that courses in nutrition and psychology will be very interesting and you will be able to let us know what kind of things you learn. I gather from your post that you are planning a career in nursing. All countries need nurses and I am sure it will be a challenging but satisfying career. I shall certainly be interested in both of the courses that you are planning to do.
I really like your philosophy of life for the future and I think it is a good one for all of us that have been through breast cancer treatment. Let us all have the same philosophy of living as if we are going to live. I can understand how you have been holding back. I think we all probably tend to do that because of the nature of cancer. We seem hesitant to look too far into the future. We have to live each day to the full. Nobody on this planet, even the healthiest ones, can take life for granted, but we have to live as though we are going to live. I am sure that by doing what you intend to do, it will have a positive effect on your emotions.
I was wondering what your career has been for the past twenty years. Since you have a degree in sociology, have you been a social worker? If so, I can imagine that is a very stressful career. I can understand that you want more free time and that when you leave work you can shut the door on it all.
I was glad to know that you are getting out to do some walking.
Wishing you all the best.
Sylvia0 -
Hello everyone
I have just received my latest e-mail from the Better Bones blog. I think it will be of great interest to all of you, because of the problems with bones after breast cancer treatment. There is a lot of information about the negative effects of bisphophonates, especially Fosamax and Actonel. There are lots of letters from women relating their cases. Please take the time to have a look at this link. It is as follows:
http://www.betterbones.com/blog/post/Bone-health-2012.aspx?
I hope you all had a good start to the week.
Best wishes
Sylvia
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I can't seem to get them to post right, I'll try again in a bit.
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I am so happy, bone scan claear. Arthritis
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Bernie. Woot Woot!!!!!! Yay!!! I think I see a relaxing glass of wine for you tonight!
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BRILLIANT NEWS Bernie! I'm so pleased for you.
And hello Sylvia and friends... I finished radio a few days before the new year, saw my oncologist, (unfortunately I hadn't read all yr interesting info on Metaformin, so I couldn't ask him about it, but will do next time), and by 2012 was officially no longer being treated for bc. I saw my physiotherapist for the last time last week and I don't need to go back to her. Scheduled to see my bs end of this month and the oncologist early in March for checkups.So basically I am now on my own.
I apologise for disappearing from the scene, but I feel that I need to move away sometimes and NOT think about bc. Sylvia I think you're wonderful to keep digging up information about the latest treatments and research going on, as I find, maybe ostrich-like, that I'd rather put it all behind me if at all possible and think of other things..Or maybe this is because its all too recent and I've had almost a year of it...
Anyway, I just wanted to drop in to say hello, and that I haven't disappeared from the scene altogether. BTW I love your animal photos and must try and upload a photo of my cats. Goodnight all, it's almost midnight here, and i have to get up for work tomorrow.Oh, forgot to say that I'm off to Venice with a friendon Friday for 5 days to celebrate the end of my treatment. Will tell you all about it when I get back!
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Hello mccrimmon324 (Heather)
Thank you for posting your photographs of your two pets. I am sure everyone will enjoy seeing them. What beautiful bright eyes they have.How is life in sunny Florida? What kind of week are you having?
Best wishes
Sylvia0 -
Hello BernieEllen
I was so happy to read that your bone scan is clear and that what you have is arthritis. Are you now celebrating the end of treatment? Please keep posting as it is important to support any others who may join the thread and to keep up with information. I think we have formed good bonds here and it would be nice to keep in touch and you do not have to post about TNBC if you do not wish.What are you doing with your days? Have you gone back to work. Are you going to have to take medication for arthritis?
All the best.
Sylvia0 -
Hello Maria_Malta
I am so glad that you posted. I have really missed you an I am sure other people have too. Well done for finishing the long journey that is breast cancer. You can now relax and just go through the check ups as the dates arrive. Remember you are not on your own as we are all with you.I can understand that you want to switch off and not think about breast cancer. However, you can help others by posting on the thread with any bits of information. You can also post about anything not related to breast cancer. For newly diagnosed people, even if they are not posting, but just viewing, your mere presence on the thread shows them that you have survived. For me, on January 20th, it will be six years and seven months since diagnosis and I hope that will give a lot of hope to the newly diagnosed, especially because I had a very large tumour. I have also found that doing this thread is still a learning curve, and new information, new thoughts and experiences can come up at any time, and this includes meeting new people. I can understand that you need a rest from things because your journey has so recently ended.
Everyone on this thread is doing a really important job.
We shall all look forward to the photographs of your cats.
I see that you are burning the midnight oil even though you have to work tomorrow. Thank you for doing that. I hope you have a good time in Venice during your five day stay. That is a very good way of celebrating the end of your cancer treatment. We shall all look forward to what you have to say when you get back.
Best wishes and bon voyage.
Sylvia0 -
Hello everyone
I am posting a few snippets of information that I have picked up this week.Another reason for making sure that we all take vitamin D supplements is that, in addition to its help with osteoporosis and preventing it, and its possible connection with preventing breast cancer, it is also now being said that a daily vitamin D pill helps to stave off the devastating condition known as age-related macular degeneration of the eyes. This is known as AMD and is the most common cause of blindness. There has been a lot of news about people being deficient or low in vitamin D.
In the Daily Express yesterday, they had an interesting article in the Your Health section, entitled The A-Z of sleep, which state how important proper sleep is. I picked up on "B is for Breast Cancer". In this section we are back to our familiar friend, melatonin. The article states that "burning the candle at both ends can dramatically increase a woman's chances of developing breast cancer". It further states that "One Japanese study showed those regularly sleeping fewer than six hours a night raise their risk of a breast tumour by more than 60%". It also states that "Scientists believe sleep disruption interferes with the production of a vital hormone, called melatonin, which is thought to suppress the release of oestrogen, another hormone implicated a significant proportion of breast cancers".
I also picked up on "M is for melatonin". It states that "Melatonin is a natural hormone that helps regulate the body's circadian rhythm, the internal clock which governs when we sleep and wake". It further states that, "That in some countries, although not in the UK, the hormone is available as a supplement to combat the effects of jet lag by resetting the body's timer so we feel sleepy when it gets dark".
There is a lot more of useful information about the importance of good sleep and the link is:
http://www.express.co.uk/posts/view/296066/The-A-Zzzz-of-sleep
There is also a very interesting article about tea, entitled "How about a nice cup of tea?" It compares black and green tea. On this thread we are all aware of the benefits we are told about green tea as a way of helping to prevent breast cancer. In this article it is also put forward as a way of protecting against Alzheimer's disease. It is stated that compounds in green tea could protect cells from the effects of amyloid, a toxic protein that builds up in the brain. It is a very interesting article. The link is:
http://www.express.co.uk/posts/view/296064/How-about-a-nice-cup-of-tea-
In the Daily Mail there is a short article entitled "Inflating implant for breast op patients". The article starts off stating "A new gas-filled implant could speed up breast reconstruction following mastectomy for breast cancer. The new device - the AeroForm tissue expander - consists of an implant that contains a carbon dioxide gas cartridge and a small hand-held wireless remote women use to release the gas into the implant".
Is this current use in the US?
I have also heard about two books this week, about breast cancer. One is 2011, How I Said Bah to Cancer and the other 2009, Even the Eyebrows?
Have any of you read these books?
That is more than enough for today, according to my DH.
Sylvia0 -
Hello everyone again
I do not know whether women diagnosed with breast cancers other than TNBC are viewing this thread, but, just in case they are, given that the treatment for all breast cancers is basically the same, other than hormonal pills post-treatment, I thought you might be. I found a bit of information in the Lancet (Medical weekly journal) dated Wednesday January 18th, about new research concerning those women who are HER2+. The latest research was looking into using two drugs together instead of just one. The two drugs are lapatanib and trastuzumab. The argument of the research is that these two drugs work better against HER2 than one. The link is:http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)61847-3/fulltext
You will be able to read only the summary about this. The full article is available only through payment.
Best wishes
Sylvia0 -
Hello yet again,
It has been a busy day and one of those days when I have felt angry and upset about what I consider to be the slow pace of progess in finding better ways to stop this breast cancer curse!
For the newly diagnosed I think you will find a lot of infomation in two free magazines- Vita Magazine and Amoena . It is worth subscribing to them and looking online.
I have also been looking online at Cancer Help UK. I saw information about a six year PHASE 3 TRIAL for TNBC with Avastin (bevacizumab) and Taxol paclitaxel). These two drugs appear to control advanced breast cancer.
A drug called olaparib is also being trialled.
There is also information about Cisplatin, before surgery, working better than other treatments.
Studies are also going on with the drug olaparib and another drug ixabepilone.
Sylvia.
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Hello Slyvia,
I'm having a rather busy week. I had a friend move down from Pennsylvania, she stopped by my house to use my PC ( she's still searching for a permanent place to live and currently staying in a hotel ) - she parked her car, rolled down the the wrong window - her cat jumped out and ran away. We have spent the week searching for the poor thing. There have been sitings but everytime anyone gets close she runs away. I feel terrible for the poor thing, We live in a pretty rural area and there are a lot of unfriendly animals out there for cats. I'm just really thankfull we no longer here the coyotes.
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Heather,
You might try to contact one of the local animal control places and see if they can rent you a safe trap for the kitty. Or contact a cat rescue in your state. You will be amazed to find that people will be willing to help you. I am sending you a pm with my email so if you cannot find a rescue nearby, contact me and I will try to find one for you. They might even come out and set up the trap. If you get a safe trap, set it up and put fancy feast in the back - put the trap where you have seen the kitty.
Bernie, so glad for your good results!!
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Thank you Christina, just replied to your PM.
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Hello mccrimmon324
Hope your friend finds her cat OK.
Sylvia
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The Friend/Cat situation is becoming a nightmare. Still haven't found the cat and friend is causing a riff between hubby and me.
Since diagnosis I have made the decision in my life that I will not deal with this type of stress anymore if I can help it, have no idea how to explain to friend that she's intruding. Obviously more to the story than just a lost cat. I would never begrudge her looking for her pet but she has drinking and financial issues and hubby and I are starting to feel it/her ebbing her way in and it's only been a few days. How do I explain to her that she needs to back off without breaking up a 15 year friendship?
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Hello mccrimmon324,
I have just read you post. I can only say what I would do. You do not need all those problems after going through cancer treatment. You must put your husband before your friend and leave your friend to sort out her own problems.
Look after yourself.
Sylvia.
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Hello christina1961,
Thank you for you private message. I hope you received my reply.
Best wishes,
Sylvia.
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Hello everyone
I do hope you are all having a good weekend and, for those of you who are working, a good rest from your work.I was wondering whether any of you have heard the latest news about treatment for breast cancer. We have been through aspirin and metformin and now the latest news is about statins. In one of the papers this week, there was an article about how a daily dose of the cholesterol beating heart pill could be the key to beating cancer. According to this article, statins have been shown to block the growth and spread of tumours. These are cheap pills and the article states that they could lessen the death toll from cancer in Britain and lessen the cost of the disease to the NHS. Clinical trials are going on and they could confirm the findings and statins could then be given to treat tumours or even prevent cancer.
The study was carried out on breast cancer, but the belief is statins could be used for many other types of cancer.
Apparently researchers at Columbia University in New York looked at the mutation of a gene called p53 that suppresses tumours. I think that many of you with TNBC will be familiar with this gene. I am certainly familiar with it, because I read some years ago about breast cancer possibly being caused by the silencing of the p53 gene through a process known as methylation. It appears that p53 has been identified as the most frequent abnormality detected in cancer.
There is a lot more detailed information in the article. The link is:
http://www.express.co.uk/posts/view/296813/Statins-Daily-dose-of-heart-pill-will-save-thousands-
I hope you can find the time to read this article and let me know what you think.
The research is published in the journal "Cell".
In the article in the paper, it is stated that Dr Caitlin Palfrman of the charity Breakthrough Breast Cancer said "We are excited that existing drugs, like statins, are showing potential in the fight against cancer. This research identifies a relatively large group of breast cancer patients who could be targeted, though we will need to see the results of clinical trials to know whether this will work."
You might be interested to know that more than six million people in the UK take statins every day to reduce harmful levels of "bad" cholesterol. You might also be interested to know that, according to this article, cancer kills more than 156,000 people in the UK every year. According to this article, studies have shown that women who develop a breast tumour are 30% less likely to suffer a relapse if they take the statin pill called simvastatin. It is also said to prevent prostate cancer from returning.
There is a word of caution from someone at Cancer Research UK. It is stated that statins as a potential new cancer treatment is perhaps oversimplifying a very complicated picture.
Your comments about all this would be most welcome.
That is all for now. Best wishes.
Sylvia0 -
Hello bak94,
I was so sorry to read that you are having a bad time. I do so hope that you now have the power back on. I also hope that you will soon be free of infection and will not have to wait much longer for your radiotherapy. If I were in your place I would try to get off all medication, get a lot of good food, take plenty of organic natural yoghurt with live cultures, and plenty of rest. Antibiotcs take a toll on your body.
Sending warm thoughts your way.
Sylvia.
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Hello everybody
I did not think I would be posting again today, as I have had a busy week doing things for other people and I decided to sit down this afternoon and catch up with some reading in French to try to keep my French language up to par. I was reading the French magazine Paris Match when I came across a section entitled Votre Santé (Your Health) that appeared to have vanished a long time ago.A short article caught my eye. It was all about an anti-metastatic discovery. Apparently some Swiss researchers have been trying to find a way to decipher the mechanisms by which malignant cells detach themselves from a tumour and travel to distant sites in the body. This is a simple translation of what I read in French.
The researchers have carried out their work on mice.
The mechanism of metastases is not simple.
1. Only a minority of cancer cells have the power to metastasise. These are the cancerous stem cells.
2. These stem cells have to find a way of attaching themselves to the targeted site in the body.
3. They have to be able to interact with the targeted site in order to be able to grow.
4. Their ability to grow depends for the most part on a protein secreted by the metastatic cells, known as periostin.
In short, the researchers were able to produce an antibody (antiperiostin). This antibody blocks the harmful protein, making the metastatic cells unable to operate.
After reading this article, I had a look for periostin on the internet, and amongst other information I found the following piece of information. The link is:
http://www.europarl.europa.eu/sides/getDoc.do?type=WQ&reference=E-2011-012099&format=XML&language=EN
This is a question being put to the European Parliament about promoting research in this field.
I would welcome any comments on this.
I hope you are all having a good Sunday. I am disappointed by the lack of posts from my fellow Brits.
Best wishes
Sylvia0 -
Hello everybody again!
I have just found a highly readable article on the internet about periostin and have decided to post it on the thread in case there are some of you who do not have the time to search the internet. The link is:http://www.thenakedscientists.com/HTML/content/news-archive/news/2452/
It is under the Science News Archive.
Best wishes
Sylvia0 -
Hello everybody
This post is mainly for any newly diagnosed women who may be viewing. I am always on the lookout for information to help those who have just received a diagnosis of breast cancer. I was recently reading on a website called Y-Me Breast Cancer Support and I thought it was written in clear easy to understand language. The bit I was reading had the following headings.1. Getting the diagnosis.
2. Types of breast cancer.
3. Understanding diagnosis.
4. Understanding your pathology report.
5. Asking questions.
Looking back to when I was diagnosed on June 20th 2005, I thought how useful I would have found all of the above. The part, Understanding Your Pathology Report, I found particularly interesting, because it has quite a lot of details. I have never asked for my pathology report, but was just told it was excellent. I know that today we are told to ask for a copy of our pathology report and through it with our medical team.
The link is:
http://www.y-me.org/just-diagnosed?gclid=CLu00uPZ5q0CFYgmtAodq3L6VA
I hope all of you will have a good week. Of the small group of women that have been with us from the start of their treatment, three have now finished, BernieEllen, Maria_Malta and mccrimmon324. I hope that all three of you will look forward now with optimism. To christina1961 and bak94, I hope you will both keep well and look forward to the end of your treatment, which is fast approaching. To Karen3, I hope you are progressing and will continue to do so.
Best wishes
Sylvia0
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