Calling all triple negative breast cancer patients in the UK
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Also wanted to wish Bak and Christina all the best with their treatment...
Bernie, glad you too enjoyed your Belgian break..apparently excellent food in Belgium, hope you took full advantage! And Mccrimmon, I had my hair 'trimmed' last week. It's quite white and still rather short, and I can't seem to feel confident enough to go out wihtout my wig yet, partly because my wig is much darker than my hair ever was and RED!
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Maria, Just color your hair red! I have red hair as well. Glad you are trying to move on but I completely understand. Those darn thoughts are always lurking. I hope as each day passes they will slowly fade but we are so new to this I think it is to be expected. I had said to one of the nurses last time I had my port flushed that I was happy to be thru treatment but still think about it alot. She said that's normal, if I didn't she'd worry something was wrong with me.
Nice to read about your trip to Venice, I would love to see it. We will be going to Rome in March and I'm looking forward to it. Have never been to Italy before.
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Yes, mccrimmon, I did think of dying my hair red at one time, but it would be really impractical as I would have to keep dying it every 3/4 weeks or so to cover white/grey hairline..actually I think I'm proabably going to stay grey (am almost 57, quite a lot older than you I think), or at most will put in a few lights in different shades, but prefer to wait for the moment. As a result, still in my wig when I go out...at least it keeps me warm in this cold weather spell we're experiencing
You'll love Rome...you can't go wrong anywhere you go in Italy, it is such a brilliant mix of history and art, old and new, style and fashion, and far too delicious food. 0 -
Hello BernieEllen
Thank you for your post and welcome back.I was so glad to know that you had a good time in Belgium. I think that relaxing and socialising is what everyone needs, especially just after finishing treatment. I am sure it has done you a power of good. I definitely agree that it is good to switch off all the cares in the world and just laugh and enjoy yourself.
I think we all like to get outside in the fresh air, especially after the winter months. It continues to be very cold here, but Exmouth always feels damp. The extreme cold weather has come quite late, just when I thought spring was just round the corner after a bout of mild weather.
Please keep in touch with us all and post about anything you like.
Best wishes
Sylvia and everyone on the thread.0 -
Hello Maria_Malta
It is nice to have you back posting on the thread. I am sure we are all looking forward to your photographs of Venice. It sounds as though you had a truly wonderful time in Venice and visited so much of great interest. You were very lucky to get some nice weather. It sounds as though you were able to feast your eyes on some marvellous paintings and to do it without being surrounded by tourists.I was very interested to know that Edward de Bono had once come to your school to talk to the teachers. I too find his approach to problem solving very interesting and the idea of these different coloured thinking caps. For those of you wondering what lateral thinking is, a simple definition from Wikipedia is as follows:
"Lateral thinking is solving problems through an indirect and creative approach, using reasoning that is not immediately obvious and involving ideas that may not be obtainable by using only traditional step-by-step logic."
Perhaps more simply put it could mean thinking outside of the box.
I was glad to know that you are keeping yourself physically fit and I congratulate you on your power walking and yoga. I have heard that yoga is very good for the mind, so you must be working wonders on yourself mentally and physically with your yoga classes. Try not to worry too much about the future. You have only recently finished treatment so everything will be fresh in your mind. Keep telling yourself that you have got through treatment, that you are doing everything to keep yourself in the best possible condition, and that you will be well and strong to cope with anything that is thrown at you. As time goes by you will be able to put breast cancer in a little corner of your mind. It will pop out when you go for check ups and mammograms, but you will find that for the rest of the time you will live whatever your "normal" life is. Live each day to the full, count each day as a bonus, and try not to worry about the rest.
Please keep in touch with all of us and tell us anything you like or anything that is bothering you. We all have one thing in common and that is we have all been through TNBC so that we all know the ups and downs of that journey. As I have said before, I am very proud of our group and the way we have journeyed over the past year and a half. Even with treatment finished, it is nice to have our friends pop in to let us know that all is well, otherwise we have concerns. I still wonder what has happened to TEK2009 and josephine_.
Keep smiling, Maria, and enjoy every day to the full.
Best wishes
Sylvia0 -
Hello everyone
It is so nice to see you all posting and supporting one another. I love all your "smileys" that are in your posts.Do not worry too much about hair growth. It will all come back in its own time. You will know when you feel right about taking off your wig. I wore mine for quite a long time. It was over a year. One day I decided to take it off and go to Exeter. I can tell you that I felt strange and thought that everyone must be looking at me. It is even stranger that I did not feel that when I was wearing my wig!!
To christina1961: I was glad to know that all went well with your mammogram. I hope that your daughter will have the same good results with hers. She is very young to be having mammograms but I understand why. How often will she have to have them?
Congratulations christina1961 on being one year out since diagnosis. That is one big milestone.
To bak94: I hope all is going well on your Active programme. Can you give me more details about it? I hope that you will feel much better now that you are no longer taking Diflucan (fluconazole) which is an anti-fungal drug that is also used to prevent infections in patients with defective immunity. It is a drug that is usually well tolerated but common side effects are nausea, vomiting, diarrhoea and abdominal discomfort. It may sometimes cause a rash.
It just shows you that you have to be careful about interactions with different drugs. There are so many different kinds of statins. Is there any particular reason why you were taking lovastatin?
The following from Wikipedia may be of interest to you.
"Lovastatin is usually well tolerated. Lovastatin, and all statin drugs, can rarely cause myopathy or rhabdomyolysis. This can be life-threatening if not recognised and treated in time, so any unexplained muscle pain or weakness whilst on lovastatin should be promptly mentioned to the prescribing doctor."
"As with atorvastatin, simvastatin and other statin drugs metabolised via CYP3A4, drinking grapefruit juice during lovastatin therapy increases the risk of serious side-effects. Grapefruit juice inhibits CYP3A4, thereby decreasing lovastatin's metabolism and increasing its plasma concentrations.
Lovastatin at doses higher than 20 mg per day should not be used in conjunction with gemfibrozil or other fibrates, niacin, or ciclosporin. This is because of the significantly increased risk of rhabdomyolysis."A friend of ours, who had no pre-existing health problems, was taking simvastatin to lower his cholesterol, became ill and was diagnosed with rhabdomyolysis, a life threatening disease which causes wasting of the muscles. He was taken off the statin but it is going to take a few years to get the statin out of his system. He suffers from terrible pains in the legs.
Keep looking forward bak94. The worst is behind you.
To mccrimmon324 (Heather): Hearty congratulations on one year smoke free. That is a big achievement, especially as you have done that while undergoing breast cancer treatment. Congratulations also on being just two months away from one year since diagnosis. Well done.
Best wishes
Sylvia0 -
Hello everyone again
For any of you interested in the theory of lateral thinking or the Six Thinking Hats might like to look at the following link:http://www.mindtools.com/pages/article/newTED_07.htm
The following is my snippet of information for the week. It was in the letters section of the Daily Mail on Tuesday February 7th 2012. The title was "I believe vitamins can help us ward off cancer". I was reading this and suddenly stopped when I saw that woman writing stated the following: "This time last year, I was diagnosed with "triple negative" breast cancer, a cancer that does not have receptors for oestrogen, progesterone or HER2/neu."
This was really, as far as I can remember, the first time I had read such a letter with triple negative described as such.
She goes on to explain how she was not eligible to have the test for the faulty BRCA gene.
She further goes on to explain how she started researching by herself and discovered how the western diet can often be to blame.
Some of the things mentioned were:
Lack of balance of acid/alkaline and sodium/potassium
Too much sugar
Vitamin C deficiency
Importance of vitamin D for the support of the immune system
Foods that provide protection, such as quercetin, found in apples and onions, vitamin B17, found in raspberries and strawberries
Building a strong immune system to prevent breast cancer
The letter ends with the following. "It took more than 300 years for people to accept that scurvy was caused by a vitamin deficiency. I hope our minds will be more open to the possibility that cancer is a multi-factor disease that has many causes, which are, however, basically metabolic in nature."
I think you will remember that a lot of the above echoes a great deal of what I have posted and we have commented on, on the thread.
This woman's letter had obviously been sparked off by her having read in the Daily Mail about three sisters who had had double mastectomies in the hope that they would avoid getting breast cancer. She pointed out that all three sisters had the faulty BRCA gene.
I was very impressed with this letter and also that TNBC is getting some publicity.
Carole, if by any chance you discover this thread, please come and join us. Your views would be invaluable.
I do hope everyone is having a good week.
Sylvia0 -
Hello everyone yet again
If you are interested in reading the story about the three sisters, the link is as follows:Best wishes
Sylvia0 -
Hello Sam52 and Karen 3,
I hope you are both alright. I know that it is coming up to half term so I hope you might pop in to the thread if only to say hello . I hope that you Karen are still progressing and are having nothing but good news. As for you Sam I hope you will have a good half term and have some time to yourself.
Did you see Bird Song on the television? I remember you told me you liked the book.
Both of you are in my thoughts.
Sylvia.
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Hello Sylvia!
I was about to write something here.....before I saw your message! I am truly sorry I have been out of touch.
Yes, next week is half-term, but I have scheduled lots of appointments (dentist, hospital outpatient appointment for my son etc) and also have IEPs for school to complete. Then a visit to see my father at the weekend....so probably not much time for myself.However, I WILL write to you in more depth as soon as I am able.
I do appreciate your posts and messages and thankyou for keeping up with all of us ( I don't even 'belong' on this thread!)
We have just had our second downfall of snow and with it the usual travel difficulties.I was to have had two visits last week from gas boiler service and lawn treatment - both canceled. Everything seems to grind to a halt.How are things down in Exmouth? I think the South West was to have missed this lot of snow.
I hope you are keeping well and warm.
With love,
Sam
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Hello sam52
Thank you for your post. It was nice to hear from you. I know that you are very busy, so keep in touch when you can. It sounds as though you will be fully occupied during your half-term, but I do hope you will be able to find some relaxation time for yourself.You can post any time you like on this thread. I know I started it for TNBC but those with different receptors are , of course, welcome to view and to post, because so much of the treatment is the same and it only differs after standard treatment with drugs such as Tamoxifen and Arimidex for the hormonal breast cancers. You are such an informed person that your input is valuable to all of us.
We have been lucky so far in Exmouth not to have any snow. I am told that Exmouth usually escapes it and that 2009 and 2010 were an exception. This year the snow has come late in the UK and just when we all thought spring was on our doorsteps. For some reason I have found it quite hard to get through the autumn and winter and I have found the months long and tiring. I can sympathise with you for having a second load of snow. It causes such problems in this country. I am longing for some warm days. Today it is very wet and cold, really miserable weather. I hope that we get better weather during half term for the children.
Look after yourself and try to get a bit of rest.
Love
Sylvia0 -
Hello everyone but especially the newly diagnosed
I feel concerned about all the information that is flying around on various threads and feel concerned that you might find it all overwhelming. My own feeling is that it is probably better to approach your treatment after diagnosis with an uncluttered mind. You have been diagnosed with breast cancer and you have to give yourself time to take that in. You then need to put everything out of your mind and go through your treatment in a calm and relaxed manner. There is no need to be afraid about your treatment, whether you start with chemotherapy, then have surgery and then radiotherapy, or start with surgery, then chemotherapy then radiotherapy. Remember that your breast cancer is personal to you and that your treatment is also personal to you. How you react to drugs will be personal to you, the side effects you have will be personal to you and your whole journey will be personal to you.Focus on the fact that thousands of women are going through breast cancer treatment and surviving.
Trying to find out what caused your breast cancer will use up a lot of your energy and will not give you any results. A well known oncologist to whom I once wrote told me it was not useful to use up my time and energy on trying to find the cause of my breast cancer, and told me to focus on the fact that I had got through it and was in remission.
If I were newly diagnosed today, knowing what I now know, I would not worry about my receptor status or grade. I would concentrate on getting through treatment and getting as much rest as possible and eating simply and healthily. For any possible side effects, I would use natural products, as I did nearly seven years ago, and they seem to do the trick. My only constant side effect seemed to be that I was more tired than usual. Throughout my treatment I ate ginger biscuits, drank ginger and lemon tea, often with added root ginger. Ginger capsules are also very good. On the advice of nurses I ate canned pineapple in its own juice to refresh my mouth and found blended fresh avocado very refreshing. A gentle walk was also good. I found I did not need any additional drugs to the ones given through chemotherapy and tried to build up my suppressed immune system through nutrition. I did take some homoeopathic treatments under the supervision of a reputable hospital consultant.
Do not be afraid and go gently through your treatment.
You can always come to this thread for information, support and comfort.
Wishing anyone newly diagnosed all the very best.
Sylvia0 -
Hello everyone
I have been reading a book entitled The End of Illness by Dr David B Agus. Dr Agus is one of the world's leading cancer doctors. It is a book well worth reading. I like the short summaries that he has at the end of the chapters.At the end of Chapter 1, entitled What is Health?, I noted the following:
"Health Rule"
"We may never understand illnesses such as cancer. In fact, we may never cure cancer, which is why prevention is key. It's important to approach your health in general from a place of lack of understanding. Honor the body and its relationship to disease as a complex emergent system that you may never fully comprehend. Diseases such as cancer, heart disease, diabetes, autoimmune disorders, and neurodegenerative diseases reflect breakdowns in that system. Cancer, for instance, isn't something the body 'has' or 'gets'; it's something that the body does."
I hope all of you are having a good weekend. I shall be thinking of christina1961, when she has her last dose of eribulin and finishes her trial on Friday February 17th.
Best wishes
Sylvia0 -
Hello everyone!
Sylvia, the active program is overseen by a psysiatrist and includes pt and an exercise program that starts out at my determined fitness level. I guess I am very week and incredibly tight! I really the the doctor. I most likely start rads on wednesday, I have a dry run tomorrow. I am starting to feel a bit better. The medication mix up was scary. I am surprised no one else caught it, as they go over the medication list every time I go in, and that has been often!
Thank you for all the interesting information! I am hoping to someday go back and read the recommended books. Right now I have much reading to do with my philosophy and psychology classes, probably not the best 2 classes to take at the same time due to how much reading is involved! We are now studying Hume in phil. and adolescent brains in psyc.!
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Hello Bak94,
Thank you for your post. It sound as though the active programme will be very good for you. All the evidence seems to be that physical activity can do nothing but good as far as breast cancer is concerned. Keep up the good work.I do hope you will be able to start your radiotherapy tomorrow. If all had gone well you would probably have been finished by now. Let us now hope that it will all be finished by Easter and that you can put this behind you and get on with your life. You must be sick of all this breast cancer business. Please do not let it take over your life.
I am glad that you find the information that I have posted of interest as I do try to make this thread as interesting and serious as I can. Breast cancer is a serious business. I am not a great fan of what I have seen on Facebook and I do not want this thread to become a social networking club.
I hope that sometime you will be able to read the books that I have mentioned.
I am glad that you are keeping your mind busy with your classes and I am sure that your philosophy and psychology books will be most interesting. If they are demanding and require a lot of reading that is probably very good for you as they will stop you thinking about breast cancer. Everyone must be careful about not becoming obsessed with this disease. I can imagine that studying adolescent brains in psychology must be fascinating. Try to feed us bits of information about your classes. Stay with your studying, even if it seems demanding at this particular time.
Wishing you all the best.
Sylvia0 -
Hello everyone
I thought you might be interested in an article that I found in one of the Sunday newspapers. It is entitled "The NHS doesn't believe my life is worth £18,000".This is about a woman who had gone through treatment for colon cancer and had beaten that disease. Signs of the disease were then found in her liver and lymph nodes in her stomach. The lymph nodes were removed but she was then told that the cancer had returned between her stomach and bowel.
She wanted to have CyberKnife radiotherapy, but her Primary Care Trust (PCT) turned down the first request for this treatment. They then reversed that decision, but by that time her tumour had grown too large. Since then the woman has begun a gruelling six-month chemotherapy treatment. This could probably have been avoided if her PCT had allowed her to have the £18,000 CyberKnife radiotherapy. Doctors have said that had she been allowed to have this radiotherapy, which is cutting edge and with a 100% chance of success, she would be fully recovered b y now. The chemotherapy has slashed her chances of survival by a third.
All of this makes me so mad. I cannot see why these bureaucratic institutions have the right to tell people how much their life is worth and dictating whether they are going to live or die.
CyberKnife radiotherapy is just a few hours of treatment with no side effects. I do not think this should be denied to anyone who needs it. Because of allowing the treatment too late, the woman in question is now having to go through months of chemotherapy.
It is not that long ago that I posted about two drugs for prostate cancer that are also being denied.
It reminds me of all the fights that were going on among women with breast cancer that was HER2 positive, in order to get the drug Herceptin. This was all going on when I was diagnosed in 2005. Women were taking the National Institute for Clinical Excellence (NICE) to court and were winning. What a hell of an ordeal to have to go through when you are fighting for your life! NICE has the power to recommend that drugs be denied if they think they are not cost-effective. I cannot believe that the value of human life can be based on cost.
I think we would be well rid of NICE and PCTs.
Our present government, if I remember correctly, promised to get rid of these awful institutions as part of their election manifesto, but since when did politicians keep their promises??? I wonder how many of the people denying these drugs to those in need would go on about cost-effective if they or their family members needed these drugs?
I would urge anyone diagnosed with whatever kind of cancer to challenge any denial of drugs that can help them. You must not sit back and take it.
I was wondering whether, in the USA with its insurance based medical system, they have to put up a fight with their insurers to get needed drugs and treatment. More importantly, what happens to those Americans that do not have insurance?
I was watching a programme on the television last night entitled Panorama, a very respected news programme, about dire poverty in the US. It was just unbelievable. It was stated that there are forty-seven million people living in poverty in the US. It was so dreadful to see the children who did not have enough to eat. I think that in this country people base their idea of the US on Dynasty and Dallas!!!
I forgot to say, in the story of the woman denied this CyberKnife radiotherapy until it was too late, that she has a five year old severely autistic daughter, who will have to put in the hands of carers while her mother has the chemotherapy.
There is so much about my country that makes me deeply ashamed of it.
Finally, I can see that there is very little input on this thread from women in the UK. I set it up because I thought there was a need for it, but I am now thinking that I was wrong. Either women are not being diagnosed with TNBC and if that is so I am very glad, or they are being diagnosed but cannot be bothered to post. That is an attitude I do not like. I know there are a lot more people reading this thread than are posting. I hope they find the reading useful, but feel they should contribute. I would like to give big thanks to those who do post and give something back to the thread.
Best wishes
Sylvia0 -
Hello everyone again
Another snippet of information from the book "The End of Illness" by Dr David B Agus."Health rule."
"Face the facts: Know your genetic risk factors for disease by getting a DNA screening test, but also understand that DNA governs probabilities - not destinies. There is so much you can do to shift your fate and live longer and better than what your DNA seemingly dictates."
Sylvia's thought for the day:
If you feel strongly about something, do not just sit back and do nothing, get off your butt and do something!!
Remember the saying in a certain film quite a few years ago "I am as mad as hell and I am not going to take it any more!!"
I rest my case. I am adjourning for the day to give you all a rest!!
Sylvia.
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Sylvia-does this website come up frequently with search engines in the UK? I hope the case is that there are not many triple neg diagnoses in the UK, but maybe newly diagnosed people just are not finding this site or thread.
I am a person that likes information, whether it is good news or bad. I like reading of new studies and reading up on things that potentially benefit me. I have come to realize that many people prefer not to do the research and will just listen to the doc and go with that. My husband is like that. He really likes my doctor, which I do to, but my husband would probably not question a thing he says, as he believes the doc is the expert. While I agree that he is the expert, I must know why he suggests the things he does and need to research the best option for me. Maybe some of the gals are taking a break from thinking about bc. They will be back when they are ready.
I am finding philosophy very interesting, as well as confusing. Many of the arguments go around in a circle. Some things we just are not going to be able to figure out! I like the different arguments for whether there is a divine being or not. Arguments on both sides have good points, but there are faults as well. We will be getting into the moral debates and ethics next. Our last assignment will be on existentialism, which I think you mentioned when I first started this class.
I have to agree about facebook. I do not like having serious discussions there and do not even mention cancer on there, I do not need to have casual acquaintances knowing about it.
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Hello bak94
Thank you for your very interesting post. It is so good to have posts with substance.You asked about search engines in the UK. I have found that if you Google triple negative breast cancer cancer sylviaexmouth uk it does go to our thread. I cannot think of any other way of advertising it without losing my anonymity. Do you have any ideas? I do find now that there is perhaps too many pages on TNBC on Google, but a lot of it is repetition. I think we on the thread are completely up to date on information, and that there will be nothing new unless there is some great breakthrough. I do not believe in a magic bullet.
I am like you in that I want to be up to date on information, whether it is good news or bad. I do believe that prevention is probably easier than cure and that once diagnosed with cancer we have to do the things that are in our control to prevent recurrence or spread. Of course, there are no guarantees and ultimately with cancer I think it is the luck of then draw.
I also agree with you that a lot of people cannot be bothered to make an effort to be in control of their health and think that doctors are some kind of god or magician. My own consultant told me that most people do not want to know anything and just want to be treated. Doctors do not know everything and they can certainly make mistakes. I make my own mind up and will not necessarily go with what doctors advise. I think they hand out pills too easily without being sufficiently cautious about side effects and how different pills interact. A former GP of mine jokingly said that the less I saw of him the better my chances of living and that doctors do end up killing their patients or seriously harming them. I definitely do not believe that doctors are all-knowing experts. I think you are right to question everything your doctor suggests and then make your own decisions.
You are probably right about the gals having to take breaks. It is certainly true that you need to switch off and of course the younger women are holding down jobs and looking after families.
I am following your courses with interest. I think that the debate about whether god exists or not is one that will go nowhere. If people have faith they will not be interested in any argument that puts their faith to the test. I am not religious, do not believe in god, do not believe in life after death, the virgin birth, the resurrection or that Jesus was the son of God. If Jesus did exist he was just an ordinary person with a lot of kindness and benevolence. I believe in the theory of evolution and not the theory of "intelligent design". I have found that a lot of church-goers and so-called Christians are not very charitable to their fellow men. Religion is causing a lot of trouble in the world today and has always done so. Religion is man made and came into existence originally for primitive people to explain phenomena they could not understand.
Years ago, as part of my French Honours course I studied 17th century philosophy including Descartes and his ontological arguments about the existence of god - Dubito, Cogito, Ergo Sum (Je doute, je pense, donc, je suis - I doubt, I think therefore I am). I also studied Blaise Pascal and his theory of having a wager and deciding whether to believe in God or not. He thought you might as well believe because you could never prove anything.
I shall be very interested in what you learn about moral debates and ethics. I think in this country we are living in a moral vacuum and that consumerism is god. There are so many people that seem to be ruthless and sadly lacking in any ethics. We could do with some strong honest leaders.
I am glad we have the same views about Facebook. I do wonder what it is doing to younger people. I also think it is very dangerous. It seems to be a way of life for young people and I think it must be very detrimental to their oral skills. Do you use Twitter or Youtube?
The weather is a bit nicer today in the UK but still a bit cool. The year 2012 seems to be one of all different kinds of anniversaries. We are celebrating 200 years since the birth of Charles Dickens. I think he must be our most gifted novelist ever. It is also the anniversary of the sinking of the Titanic in 1912 and the death of Captain Scott in the Antarctic. It is also the Diamond Jubilee of Queen Elizabeth II and of course we are having the Olympic Games here in the summer.
In view of what you said about your husband, I thought you might like the Health Rule that figures on page 66 of the book "The End of Illness" by Dr B Agus.
"Health Rule"
"Don't put blind faith and trust in your doctor. Be your own doctor first. Use the combination of the questionnaire on page 15 and the guidelines in this chapter to empower yourself with the information you need to define your personal prescription for health. When working with your doctor on your protocol, view the relationship as a partnership - not a friendship. Also, don't entrust your doctor with storing all of your medical information. Request copies of your data and store it in a readily accessible place on-line."
I think you would find the questionnaire entitled Personal Health Inventory Questionnaire absolutely fascinating. It is four pages long and makes you think about your body. The first question is about your overall feeling and is very important.
Wishing you all the very best and thanking you for the great contribution that you are making on this thread. You, christina1961, mccrimmon324 (Heather) and suze35 when she was well enough, have made an amazing contribution to this thread.
Thinking of you today, bak94, as you begin your radiotherapy.
Sylvia0 -
Hi Sylvia and Bak94 and all,
Just a quick note as I need to get to work! In reference to patients not questioning what their doctors say, my DH has now had two diagnostic ultrasounds and has no idea why! I didn't go with him to the appointments and can only hope it is nothing serious. He doesn't ask any questions when there; I cannot imagine not asking questions. Knowing him as well as I do, I don't believe he is keeping anything from me, I just don't think he thinks to ask.
Bak, I'm glad you are starting radiotherapy! I hope it goes well. It did for me; I have had some tightness following it but didn't have any real problems going through it in terms of burning or anything like that. I never put anything at all on my skin and washed with very mild soaps.
Sylvia, I enjoy the information in this thread. I am pretty much agnostic, but wish I could find a way to believe in an afterlife. Since my diagnosis, I have prayed from time to time. I also believe in evolution, not intelligent design. I would love to see my parents again and a girl who came very close to being my stepdaughter who died tragically a few years ago. I was involved in her life for many years. I think of her often, as I always wish I had been more aggressive in keeping up with her. She had many struggles following the death of her mother when she was only 13.
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Hello christina1961
Thank you for your post. If I were your husband I certainly would be asking why he is being given two diagnostic ultrasounds. Not knowing means thinking all kind of possibilities and it is an additional worry for you that you definitely do not need. I cannot imagine being subjected to ultrasounds and not asking any questions. In fact, I would be looking at the screen. Last year, when it was thought there might be a problem with my remaining breast, I looked at the screen and my consultant went through a conversation with me as we both looked. My husband went for a preventive ultrasound screening for detecting the possible development of an aortic aneurysm. They are now doing voluntary screening for this in the UK. My husband studied it all in great detail. Do you think your husband does not ask questions because he is afraid of what the answer might be?I am glad that you enjoy the information on this thread. That makes me think the effort is all worthwhile.
I think, christina1961, that it is far better to live every day to the full during the life that we have and not to worry too much about the rest. I think primitive man probably invented the idea of an afterlife out of fear of death. Even if you did find a way to believe in an afterlife, how would that help you with your real life? Remember that the Church is big business and that they peddle fear and tell the poor to put up with their poverty as all will be well in the next world! If you believe that, then you might as well believe you have fairies at the bottom of your garden. The Church is part of the establishment and uses fire and brimstone, not to mention sin, to control people. The higher-ups in the church live in the lap of luxury and put out the begging bowl for the poor to contribute to. Here in the UK they are big property owners.
I think that doing all the little things that you can to keep yourself fit and healthy is more useful than any prayers.
I can understand that you would like to see your parents again. We all miss our parents when they die and all those people that we love. All we can do is keep them alive in our memories. I can understand your feelings about the young girl who died but just treasure the memories that you have.
I do hope all will go well when you finish with the eribulin tomorrow. That will be a good end of the week for you. I am sure you will have a relaxing weekend. I shall be thinking of you tomorrow.
I am once again feeling concerned and annoyed with our NHS here. The National Institute for Health and Clinical Excellence (NICE) have recommended that up to 2,000 women with a specific form of breast cancer that has spread to other parts of the body should not be allowed to have the drugs lapitinib (Tykerb or Tyverb) and trastuzumab (Herceptin). They say they are too expensive.
These drugs have been shown to reduce the growth of tumours but the NICE experts say the benefits are too small to justify the additional £50,000 per patient per year cost. This makes me very angry because if you are triple positive and suffering advanced breast cancer, you need these drugs. If you are interested in more details the link is:
Best wishes
Sylvia0 -
Thank you, Sylvia! I am getting ready to go in for my last treatment!! YAY!
We all must make the best of each day, and you are right - the afterlife is not going to help with the present day. It is a beautiful day here in Tennessee, the sun is shining and I think it will be warm again.
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Hello christina1961,
Thank you for your post. I do hope all went well yesterday and that you are not feeling too unwell today. Please have a good weekend and then give youself a good long rest from everything.
Thinking of you ,
Sylvia.
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Hello bak94,
I hope all went well with the radiotherapy. Of our small group of women that have remained loyal over the months you are the only one left who is going through treatment. How many weeks of treatment do you have. It is not usually too long.
Have a good weekend,
Sylvia.
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Hello everyone
I am posting some snippets of information that I have found this week.The first one was in one of the UK newspapers on Tuesday February 14th. The first paragraph certainly makes the reader sit up and think. The article is by Dr Martin Scurr. This is what I read.
"Should I discover tomorrow that I have advanced, life threatening cancer, I won't go rushing to the doctors for a heavily invasive course of medical treatment. No, I will shut up my London surgery, head to my home in Norfolk, stock up on gin and tonic and have a jolly good time until I meet my end."
The second paragraph is also very revealing.
"Like most doctors, I understand that much of the care we offer patients who have serious, life threatening illnesses is ultimately futile.
Worse, it can involve many months of gruelling treatments that might possibly extend the length of one's life, but do nothing for its quality."
The article goes on to say that most doctors would not want for themselves the treatment that they give to their patients. It further states that these "life saving" interventions are "big on promises, but small on success and involve great pain and distress".
This article is long and detailed and many of you might find it interesting. You will find it under Good Health in the Daily Mail for Tuesday February 14th. The link is:
On the other hand, I read another article this week about a man who survived a very rare cancer after being told there was no hope.
On the same day, in the same newspaper, there was an article under Good Health, entitled "Beam of Light could boost brittle bones".
I thought this might be of interest to you since we all know how breast cancer treatment can affect the bones and cause osteoporosis. The article begins "Shinning light on a woman's legs while she exercises, could help reduce the risk of brittle bones, according to a Brazilian study.
The scientists used infrared light on the thighs and buttocks of post-menopausal women, and found this reduced the loss of bone mass associated with osteoporosis."
There are a lot more details in the article that you might like to read. The article is by Robin Yapp.
Another article that I found under Your Health (Under the Microscope) in the Daily Express on Tuesday February 14th. The article is by Professor Justin Stebbing. The article begins "My team at Imperial College London recently discovered a gene that helps certain types of cancer become resistant to treatment.
It is called LMTK3 and when it is present at very high levels cancer is more likely to come back and spread.
We now want to make a new personalised therapy that will block the activity of LMTK3.
This would mean breast cancers that no longer respond to hormonal therapy, such as Tamoxifen, start responding again, a process called re-sensitisation."
The link to this article is:
http://www.express.co.uk/features/view/301992
I would just like to say to suze35 that I am so sorry that you are going through so much and just wanted to let you know that you are in my thoughts.
To mccrimmon324 I hope you are enjoying life in Florida now that your treatment is behind you.
To BernieEllen, Maria_Malta and Karen3, I hope tou are all still reading the thread even if you are not posting.
To everyone, have a good weekend. Here in Exmouth, at long last, we have some sunshine.
Sylvia
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I can not believe that I am the only one still in treatment:) It will be a year on March 31rst that I had my mammo and a few days later I got the call. It all feels like a bad dream, one that I don't remember much of! It seems like a diffferent life when I was going into the hospital for my chemo treatments. I think my surgeon said to have my hysterectomy about 6 months after radiation I have 28 treatments, so over 5 weeks. I thought it was going to be more, and I forgot to talk to him about that.
Not sure if I would want to know the bad features of my tumor if there was nothing they could do for it. Sometimes I do wish I was the type of person that just thinks everything will be fine and just carry on, as worrying does me no good.
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Yay Christina! I like your comment-the after life is not going to help with the present day!
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Bak, I've thought so many times that I wish I were the kind of person who could just totally trust and go on - but we are better off not to be. When my dad had esophageal cancer he had one idiotic lung specialist who advised him to wait six months until the unidentified mass in Dad's throat grew large enough to biopsy. Plus he added, Medicare will pay for it then. ARGGHHH! Same doctor who gave my sister a breast exam for a sinus infection many, many years ago. Dad immediately went to a gastroenterologist, got a biopsy through the esophagus. Hopefully none of us have anyone like that treating us.
Sylvia, that is very interesting - seems the doctors don't even have faith in their own medicine. I need to dig out my books by Stephen Gould - you know he had a cancer that was supposed to be lethal but survived it. I cannot remember the details.
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Hello bak94
Thank you for your post. Keep looking forward to that date of March 31st and see it as a celebration day after a year of treatment. Your radiotherapy should be finished by then. Five weeks is quite a long time to have radiotherapy and I would not think that you need more. Three weeks plus boosters seem to be the norm here. That is, five days a week and weekends off. The boosters are incorporated into the daily sessions. Although radiotherapy appears to be so much easier after six moths of chemotherapy, it is nevertheless harmful to the body and you do not want too much of it. After that I think it would be good for you to have those six months completely free of anything, in order to face a hysterectomy. You need to switch off breast cancer, eat healthily, do some walking and relax. A hysterectomy is considered to be major surgery, whereas I was told breast cancer surgery is not. Another major surgery is hip surgery.I shall certainly be on this thread to support you through all of this and I do hope that the fine women who have now finished their treatment and whom you supported will, at least, pop onto the thread to support you until you have finished. Do not put yourself down. Just remember you have nearly finished this journey for the second time, so I say three cheers for all your courage and for all your staying power.
I was interested in what you said about perhaps not wanting to know about the bad features of your tumour if there was nothing to be done about it. This is a bit of a dilemma. There is the saying ignorance is bliss. However, in today's world, especially with the internet, I do not know if that is possible. I think back to when I was diagnosed in June 2005 and certainly in the UK the term TNBC did not appear to be in use. I could just have accepted what my consultant said and that was I was negative so Tamoxifen would not be of any use and that after chemotherapy, surgery and radiotherapy, there was nothing else they could give me. In a way, I created my own fears and anxieties by researching and finding out exactly what it meant to have negative receptors. I am still not convinced that being TN is any worse than being triple positive or any other combination.
I do not pay any attention to all the information about how, with TN, the further away you are from diagnosis the less chance there is of recurrence or metastases. I think it is all the luck of the draw. Of course, there is always the possibility of a new primary anyway. I think we must all be very wary of becoming obsessed with breast cancer.
You are certainly right that worrying does no good. All we can tell ourselves is that we are fine today and that tomorrow, well that is another day. Live each day fully, because, as christina1961 and I believe, the after-life is not going to help with the present day.
All the luck in the world to you, bak94 and keep looking on the bright side of life.
Sylvia0 -
Hello christina1961
I agree with what you said to bak94 about how we are better off not to trust doctors. Information may worry us, but I am like you, I have to find out what exactly is going on. I do not trust doctors and I analyse and research everything they say. I get the impression that our GPs in the UK do not know that much. For anything complicated we need to see expert consultants. I feel that GPs in the UK just keep on prescribing medication. Some people I know are swallowing tablets as if they were sweets.I can understand how angry you must have felt about what happened to your dad and to your sister. I think we patients have to try to be one step ahead of our doctors and question everything they say. With all the information at our fingertips and with more and more education, I think doctors are probably more vigilant. They are no longer the gods they were for proceeding generations when people thought that the doctor knew best. I think that a lot of medication may be doing more harm than good. My husband and I are certainly not taking any medication at all.
It certainly seems true that doctors do not have any faith in their own medicine. You would have to be a fool to think that chemotherapy (nerve gas), and radiotherapy (radiation) would not have harmful effects. Unfortunately, this is all we have for the moment to keep us alive when we are diagnosed with cancer. I hope new treatments will be found, but big money is being made out of lethal cancer drugs. There is a big decision to be made with metastatic breast cancer. Ultimately, I believe it is the prolonged treatment that kills and not the cancer.
I do not think we can always believe the diagnosis we are given. As you say, there are cases where patients are told that they do not have long to live, but suddenly go into spontaneous recovery. I remember when my uncle was diagnosed with throat cancer (large tumour on one tonsil) that he saw a programme on the television about a man with some kind of terminal cancer who took a medication called CV247 and made a miraculous recovery and was still alive many years later. It was a serious programme and the CV247 was being used by a hospice care doctor for patients in her area. I was close to my uncle and wrote a letter to this hospice, asking for a consultation for my uncle and for him to be prescribed the CV247. I think with my uncle, the cancer was too advanced, but he took the medication for about eight months, but sadly he died ten months after diagnosis. I can tell you that throat cancer is horrible. He believed the CV247 would work for him. It was a liquid solution made up of ascorbic acid (vitamin C), salicylic acid (aspirin), copper and manganese. You will find this product if you Google CV247. It was originally produced for dogs with cancer and apparently cured them. Have any of you heard of this? I wrote to a private alternative doctor, whom I saw when I was first diagnosed with breast cancer, and she was also prescribing it.
I have not heard of Stephen Gould but I am going to Google him later today.
In my own case, I have decided that whatever the future may bring, I am going to chose quality of life over quantity.
Sine I was diagnosed six years and eight months ago tomorrow, I have drunk Clipper's decaffeinated green tea every day, four to five mugs a day. Sometimes I have Sencha Japanese green tea in the mornings. It is not decaffeinated. I have also eaten bitter apricot kernels since diagnosis. I was advised to eat them by the private doctor I saw, a well known nutritionist with whom I had a long consultation. She was very frank, but told me, what I already knew, which was that I could do a lot to help myself, but that only conventional breast cancer treatment would an effective treatment.
That is about all for today. I hope everyone is having a good weekend.
Sylvia0
