Calling all triple negative breast cancer patients in the UK
Comments
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HI Sylvia.
Some 'doctors' still remove fibros and aspire cysts. I know of a 30-sth lady (British, having 'treatment' on the Nhs) who has fibrocystic breasts and who has them cheched up once or twice a year, with removal/aspiration of any fibros/cysts. I think it's crazy! It is an easy job for the doctors (much easier on them psychologically than dealing with women who have cancer) and of course the patient, who already has anxiety issues, dreads each check up ( and is on antidepressants). In France we stopped tampering with breasts that way back in the 80's (at least the good drs did, GP commented that for those drs who still do it it is 'a nice little earner', without any need to get the handkerchiefs out and make phone calls to speedily refer the patient to a surgeon). I was told I had fibrocystic breasts when I was 19 and the recommendation was 'no action, just be aware of what your armpits/collarbone usually feel like'.
Hope the weather is treating you well!
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Hello Penzance
It was nice to have some information from someone new.
I was very interested in what you said about the British lady in her thirties having treatment on the NHS for fibrocystic breasts. I was very surprised to learn this because it was a long while ago that I read it was best to leave the cysts alone. Like you, I think this is crazy. As you say, it is easy work for the doctors, but must be very stressful for the patient worrying about if there has been any change. We all know the anxiety that we go through when having check ups following breast cancer treatment, not to mention mammograms.
I feel very strongly that anti-depressants should be prescribed with great caution, as they have all sorts of side effects and are being associated with the development of dementia.
You mentioned France and the way you wrote I was wondering whether you are French or a Brit living in France. I lived and worked there for some years in the past, as a teacher.
I know that France and Germany have a better reputation for cancer treatment and a better health service. Our NHS is seriously under-funded given the population and the demand and it is not used responsibly by doctors and patients. I have no complaints about my own treatment for breast cancer in the past, but I think I was lucky to have a 'dream team' and I did take command of my treatment from the beginning.
I am so glad you posted to let us know that you had fibrocystic breasts at 19 and no action was taken. That is good information you give to us all about being aware of what your armpits and collarbone usually feel like.
I noticed on your details that you were diagnosed in 2014 on the right breast with LCIS. Have you had any treatment for this? I know that with DCIS there is a difference of opinion about what to do. In the medical establishment some say it is a pre-cancerous condition and may not develop into cancer. Others say it is cancer and give full-blown treatment.
I hope you will stay with us and give more useful information.
We have had two cold sunny days here in Exmouth, but now we are back to cloud and rain.
Wishing you all the very best.
Sylvia xxxx
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Hello Joliel
I was wondering how you are. We were so glad to have you on board, but have not heard from you in a while.
Sending best wishes.
Sylvia xxxx
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Hello sam52
I was wondering how things are going with you. You know you are welcome to post on this thread. I do hope life is less stressful and your move is progressing.
I hope to hear from you.
Love.
Sylvia xxxx
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Hello missing men,
We have not heard from Tom, PeterandLiz or Michael in quite a while. We are always glad to hear from you and to know how life is treating you.
Best wishes
Sylvia
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Hi Sylvia, Mary and all
Again thanks a lot for all your emotional support. It's a real peace of mind to have such great sisters here.
I don't know whether it's the impact of that anxiety I had a few days ago or whatever that I am suffering from too much stress and excessive worry about my general health. I think I was far better than this months ago. Whenever I have a minor pain in my body I instantly fear it may be cancer.Then I'm paralysed. Yesterday I had a blood test to check tumour markers and as it won't be ready until next Tuesday, I'm panicked. Right now I'm not taking any antidepressants but I'm not sure anymore I don't need them as I can't get good sleep as well. Our new year is approaching and there are lots of things to do. Do you have any advice as what to do to feel better.
Love you all
Hanieh
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Hello Hanieh,
It was nice to hear from you, but I am sorry to hear that you are suffering from so much anxiety. This will not be doing you any good,and it is so important that you sleep properly at night. It is very difficult for any of us to know what will work for you
As you know I do not like the idea of anti-depressants because they have side effects,and I would never take them, but I know from reading the threads that women do. Perhaps you need to talk to your doctor. You must remember that in all of this it is early days for you and all this anxiety will get better as time goes by, You must keep telling yourself that you have done fine so well, that you are doing all you can to keep well, and that you will continue to do just that.
Try to relax your mind and body before you go to bed. Listen to some relaxing music,read something light or funny, or watch something funny. Try to switch off your brain and throw out all worrying thought. Sleep in a very darkened room and give your brain a rest. I know you meditate, and that can only be good.
Herbal supplements with a hot herbal drink may help.
One to one counselling may help.
Anything with eltryptophan in it is supposed to help. It is in milk, but I would not recommend milk or any dairy products as they are said to be a risk factor in breast cancer.
I do hope this helps. We have an old song here "Pack up your troubles in your old kit bag, and smile, smile, smile! What's the use of worrying, it never does any good."
Sending you fond thoughts.
Sylvia xxxx
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Hello Hanieh again,
I thought you might be interested in the following link that I have just found. It lists foods to lift your mood away from anxiety etc. The link is as follows and it does contain healthy foods.
http://www.netdoctor.co.uk/healthy-eating/a25845/1...
Please have a look at it.
It also lists the no-no's and we know them well. They are caffeine, sugar and alcohol.
On the healthy foods list, there is dark chocolate and it does make you feel good. You need to buy chocolate that is at least 85% cocoa, even though the list says 70%. I buy 90% Lindt dark chocolate and regularly have a couple of squares, but I would not have it too late in the evening. I think bananas are a good fruit for calming the nerves.
Have a look at the list and let me know what you think. I shall probably itemise the things tomorrow.
Sleep tight tonight and remember the words of another well known song that begins "Always look on the bright side of life".
Sweet dreams.
Sylvia xxxx
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Hello Hanieh yet again!!
I have just found another link about foods containing tryptophan. This is one of the essential amino acids and is hard to get in the diet in good quantities. It is conducive to good sleep. You can find it in steak, turkey, chicken and pumpkin seeds. Turkey is also on the list of good foods. The link is:
http://www.sleepcouncil.org.uk/how-to-sleep/diet/
For good sleep we need tryptophan, seratonin and melatonin.
I think it is better to try all and any of these rather than taking anti-depressants.
I was wondering why you were getting your tumour markers done. My oncologist told me they were of no use as they went up and down and that because cancer cells are part of our body, you would never get a zero score.
All of these test and scans etc. just give us more anxiety.
All the very best.
Sylvia xxxx
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Hello Sylvia and all,
I am sorry I haven't responded in a timely way, I have had a little excitement of a non-cancer medical kind. For some time I have had a weakness in my legs that appeared quite suddenly last summer. I asked my GP and Oncologist about it, and both seemed to lay it at the feet of neuropathy. Lately I have been feeling a pressure or heaviness in my left chest. Monday I went shopping with a friend. We walked into the mall, through 1 store and into another and I had to sit down, I just felt weak and tired. I asked my GP about it, and mentioned the chest discomfort, and suddenly I was having an EKG, a stress test and ultrasound to check my heart. Had all that yesterday, and I am happy to report my heart seems to be in fine shape. Which doesn't answer to my leg weakness. But, one of the cardiologists did suggest that there are different types of neuropathy. Peripheral, which involves the hands and feet; and one of the other kinds is motor neurophy. This can actually cause weakness in muscles, as the muscles can't properly interpret the signals from the nerves. That sounds awful too, so I am continuing in my quest to figure out what it is exactly. I am still glad it's not my heart!
I will write later and try to address all the points in your emails. Looks like lots has been going on on the board this week.
Hanieh, I have to agree with Sylvia about the anti-depressants, although I do know many people who are taking them with apparently no ill effects. I tried them about a year ago after chemo, but didn't like the side-effects. I was told those would lessen in time, but I stopped taking them anyway. It is an individual decision however. I do know how you feel with worrying about every ache and pain, I am afraid we are going to carry that with us for life. Hopefully with time it will become less in the front of our minds. I did not have tumor markers done either, I was told that with a diagnosis of breast cancer, tumor markers are not a reliable test. So even if a number is too high, it may not necessarily mean anything. I do think tumor markers are found reliable in some other cancers.
Have to go for now, talk soon.
Love, Mary
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Good morning everyone,
The mornings are getting lighter here. I was up very early and watched the sun rise over Exmouth and thought I would post this photograph.
I have been reading in more detail some of the links that I posted for Hanieh. If you are truly interested in using food as your medicine, please have a look at Health and Wellbeing for You with the heading Food and Your Mood. It is divided into the following headings: What do I need, What in my food affects my mood, and Some good mood-boosting foods.
The Good mood foods are sweet potatoes, bananas, leafy greens such as broccoli, avocados and lentils. Please have a look in more detail to find out what these foods contain that are so important.
Some contain folic acid, a lack of which has been linked to a depressed mood. Leafy greens and avocados for example contain folic acid.
To Mary, I shall be answering your post later on today.
Wishing everyone a good weekend.
Sylvia.
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Hi Sylvia and Mary
Sylvia I really can't find appropriate words to express how I like to appreciate all your kindness and care. Sometimes I find it difficult to find the best words to express myself here as English is my second language and I worry too much about my correct using of words and structure here. Please forgive me if I make any mistakes. My Wi Fi has expired and because of some problems I can't get it connected until tomorrow and our my cellphone data is so slow that it takes a long time to open the links you sent. Sure the first thing I will do tomorrow after my Wi Fi connection will be to open these links. But I never forget your kindness.
Mary how sorry I am to hear what you have experienced. I also feel my legs and ankles have weakened as they sometimes badly hurt when I m walking. My orthopedist gave me some pills but I don't feel like taking them. I also play badminton too. If only these physical and mental consequences of our treatment would leave us.
Last night I felt a lot better after talking to you. My husband has to take lots of trips as missions to other cities and so there are many nights my daughter and I are alone at home. Last night his flight was very late at night and although he came home at 4 am I managed to get some good sleep when I saw how lovely and caring friends or better to say sisters here.
Lots of love
Hanieh
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Hello Mary,
I was sorry to read that you have been having some problems, but happy to know that your heart is in fine shape. That is good news, because chemotherapy can affect the heart.
I was interested to know that one of the cardiologists suggested that there are different types of neuropathy. I only know chemotherapy induced neuropathy and neuropathy in the feet due to lack of circulation in diabetic patients. I knew the kind I have in my feet is known as peripheral neuropathy and is not the same as that found in patients with diabetes. I did not know about motor neuropathy. Is that caused by chemotherapy or even radiotherapy? I must say this motor neuropathy does not sound like a bundle of fun. Are you being tested to see if you have this, and if you do, how it is treated? You do need to get a formal diagnosis or for this to be ruled out. Are you, by any chance. On statins, as they definitely cause muscle weakness, but doctors are reluctant to admit it because they want to medicate anyone they can.
I do look forward to hearing your comments and views on anything mentioned in posts that you have missed.
Wishing you all the best.
Sylvia xxxx
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Hello Hanieh,
I am only too pleased to try to help and your kind, thoughtful words tell me just how much you appreciate what I and others try to do to make the days easier for you.
I do understand that English is your second language. You do not have to worry about using the correct words or structures, as your English is excellent and I can tell you, in all honesty, that you should be proud of it. Your English is better than a lot of English speaking people. There has been such a lowering of standards in written English, spoken English, spelling and grammar. It is getting worse. There is an attitude of 'anything goes' these days in the UK. When I was at school spelling and grammar were drummed into us and we were taught the difference between written and spoken English.
I do hope you will solve your problems with your hi-tech, and I look forward to your comments about the links.
I was interested to read that you also feel you have some weakening in your legs and ankles when walking. Perhaps through Mary we shall be able to find out more about motor neuropathy. It is unbelievable the harm that cancer treatment does, but, at least it keeps us alive.
I can understand how lonely you must feel when your husband is away on business trips, but at least you have your daughter at home with you.
Do you think you are not sleeping properly because you are in your apartment alone with your daughter? I know that in the past when Raymond was away on business trips I could not sleep properly and did not feel very secure.
That is about all for now. Have you had a day's rest today? I remember that Friday is a religious day for Muslims.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Today was our weekend and I managed to have some rest. But unfortunately I have caught a bad cold and the only thing that eases me is to sleep. Tomorrow I'll have a very busy day and I should get well fast so I took a cold pill. I hope it works.
Regarding what I told you about my blood test I should tell you that checking tumor markers is against my surgeon's opinion and this is the thing my oncologist ordered to do. My surgeon's assistance who examined me also again referred to diphereline injections as something useless in my case. They're going to have a meeting about it and have promised me to call me to let me know the results of their discussion. I hope they come to an agreement. Unfortunately we don't have a set guideline for treating breast cancer in Iran and every doctor has his/ her own way of treating it. At least I'm happy I made the best choice in choosing my surgeon since he is the number one professor in this field not to mention the always 2 to 3 hours wait in his clinic to have a visit.
Something that was really depressing to me in his clinic was to see a young lady in my age who had her third recurrence in four years as in her words her surgeon failed to get clean surgerical margins at the first time and as a result she had gone from stage 2 to stage 4. She was there for a second opinion. How sorry I am to have such irresponsible doctors whose errors can take someone's life.
Love you and talk to you soon
Hani
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Sylvia I love your pictures. Thanks for posting them
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Sylvia, Hanieh and all,
Such a week, I can't believe it's Friday. I got out of the hospital after my tests and had to rush home, clean up, and go to meet the tax man. It's that time of year, so much to keep straight, at least the man I met with was very helpful and kind. Thank goodness! That was Wednesday. Thursday evening I arrived home and found a message from one of his partners saying I needed to transfer funds from one place to another place. (Having to do with my husband's passing.) I had no energy to think about it so the next morning got that straightened out. It seems awfully complicated to me.
I have been thinking and reading about this neuropathy problem; in a way it seems like the medical community has only recently been taking the CIPN (chemo induced periperal neuropathy) seriously. I told my oncologist after my first treatment that I had some symptoms, he said "oh, but that will go away when you are finished." There is research ongoing and the research shows that a large percentage of people have this problem, and it seems like breast cancer treatment shows up as a culprit more than other cancer treatments. Because of the taxanes. Also the platinum-based drugs. And it can cause weakness as well as the pins and needles sensation. Hanieh, I saw my acupuncture doc today, and he said he sees lots of post-chemo patients with weakness and fatigue. It is very frustrating when all I want to do is try to get stronger and more like I used to be! This weakness in my legs and really all over, is stopping me from doing that. What worries me is that it seems to be getting worse. Sylvia, I guess I can go to a neurologist and get a definitive diagnosis, but the problem is there is really no cure; duloxetine (Cymbalta) is recommended as a treatment, it is another anti-depressant that seems to suppress neuropathic pain. I don't have pain per se, but I have the weakness. I don't know if anything helps with that. Another bad thing is sometimes it gets worse, sometimes it gets better, and there is no telling. Mine was actually better, and then it came back in a bigger way last summer. I may make an appointment with a neurologist, it is usually a long wait to get into such a doc's office. Well, enough about that for now.
Politics: Thank you for writing about your political system. Sounds like you have a lot of different parties; I like the sound of the party that wants to make you a sovereign nation again, and take care of your borders, language and culture. How often do you have elections? Is Parliament still made up of men with titles as it used to be? I suppose that is your House of Lords that are not elected. That does seem not a very good way to do it. I saw an article just this morning that said the referendum on staying in the EU is on June 23. Is that voted on only by Parliament or do the citizens have a voice? I noticed that Cameron and Corbyn want to stay in the EU, and Farage is leading the fight to get out. Sounds quite interesting and tumultuous and infuriating, like our politics. I am not very knowledgeable of your political system, although I do know you are a monarchy. But your royals don't seem to do much except show themselves at functions and live royally! In our politics, Hilary Clinton only got beaten in one state, New Hampshire. She won in Iowa. Still 48 states to go in the primary circus. The actual presidential election will be next November. The Democrat and Republican nominees will be in place before then. I think Bernie Sanders is giving Hilary a run, the experts think she will be the nominee in the end because of the huge political machine the Clintons have built over the years. On the Republican side, Donald Trump is still ahead; the South Carolina primary is today. There is a big buzz about that, because it is said that whoever wins the primary there often ends up the nominee. There are still 6 Republicans in the primary race, so it's hard to tell what will happen. With so many in the race, it waters down the vote quite a bit. Last weekend one of our Supreme Court justices died in quite a strange way; I am surprised there is not more news on the subject. It all seemed quite fishy to me. If you are curious, Google " Antonin Scalia death" and you can see what you think.
I think I am going to request my port be removed; I don't find it comfortable anymore.
Hanieh, I am so sorry you are having such worries at your young age. It isn't fair, but it's life. I wish you could feel more confidence in your doctors, but to be honest, in hindsight I am not all that confident about mine. But I also hear not-so-good stories from people who go to the biggest and best hospitals. I also think your English is excellent and you must have a gift for language. Do you know any other languages?
I was reading an article on TTAC this morning saying that 40% of men born today can expect to get cancer, in 1900 3% of men born could expect it. It was an article by a doc who has written another nutrition book "Beating Cancer with Nutrition." His opinion is that most cancer patients die of malnutrition rather than the cancer. Since the chemo is destroying so many cells in the body and patients are not getting enough nutrition to counteract it.
I still have not seen any organic grapes!
It has been very warm and windy, they are calling for rain today. I am glad you can work outside, it's therapeutic.
Going to stop for now,
Talk soon, wishing all the best,
Sending love
Mary
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Hello Hanieh,
I do hope your bad cold will get better soon, but it is probably better to let it take its natural course. I think colds are a sign of getting run down, so you need to help your immune system to fight it through your nutrition, gentle walks and plenty of sleep. I have read that during sleep your immune system builds itself up.
If I were you I would try really hard to extricate yourself from worry about breast cancer. You have successfully completed the journey and must focus on the present and the future. I think the only thing I would want to know from my doctor is what the medullary part of the invasive ductal carcinoma makes to treatment, if any. You had triple negative receptors so after standard treatment of surgery, chemotherapy and radiotherapy, there is no other treatment, unless the medullary part makes it different.
I would not worry about having tumour markers. As I said many times before, my oncologist, a dedicated woman, told me they were of no use. Your oncologist and consultant surgeon may not agree about tumour markers. You need to take control and do what you think is best for you.
You say that in Iran you do not have guidelines for treatment. Here in the west the standard treatment seems to be as I have mentioned above. It is surgery, lumpectomies or mastectomies, chemotherapy before or after surgery, and then radiotherapy to mop up any stray cells. If the breast cancer has hormonal positive receptors, then patients after standard treatment will have a mixture of either tamoxifen or aromatase inhibitors. They stay on these for a certain number of years. These drugs do have nasty side effects. I happen to think that with triple negative receptors we are lucky not to have to take anything post-treatment and our bodies can start to recover post-treatment in a natural way. Regular check ups, just physical ones, are generally standard treatment, going from every three months, to every six months, to once a year. Scans and mammograms are part of these post-check ups and the number of scans and mammograms seem to vary.
If patients are HER2 positive they get treatment with Herceptin.
Have you now stopped having the diphereline injections? If they serve no purpose I cannot see the point of having them.
I can understand that you would feel depressed at seeing a young lady at your clinic who had had her third recurrence in four years, but you are not that young lady and you must focus on your case and not hers.
In the UK I know that if you have a lumpectomy and it is afterwards ascertained that you do not have clear margins, then you are given another lumpectomy to obtain these. If this fails you are then advised to have a mastectomy.
I noticed that in your details you do not mention what surgery you had. It would be useful to add this to your details.
I do hope you will have a better week.
Yesterday Raymond and I decided to put the computer away for the day, and concentrate on our reading and testing some of the food items listed under Health and Wellbeing for you, Food and Your Mood, and we concentrated on eating some of the good mood-boosting foods. They are sweet potatoes, good for lifting depression, keeping blood sugar levels steady, and helping to prevent, therefore, mood swings and sugar cravings. We also had bananas which give a sustained energy boost and are packed with vitamins and that essential amino acid, tryptophan. Bananas are also packed with potassium, which stress can deplete. We also had some avocados which contain tryptophan, vitamin B6 and folic acid. I think we should all concentrate more on what we are eating. I think too many people cannot connect food with illness. This is too simple for them. I think that good food is essential for good health. I think the links that I gave everyone on the thread should be essential for everyone interested in making food their medicine.
Raymond and I had a relaxed day yesterday, felt good, did a lot of reading and slept well.
I do hope next week will be better for you. Be positive.
Fond thoughts.
Sylvia xxxx
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Hello Mary
I have just read your latest post and shall respond later. I was very interested in everything you had to say about neuropathy.
Yesterday I reached 10 years and 8 months since diagnosis and i hope this will motivate everyone reading the thread.
I do wonder what is going on in the US in particular as reading through the TNs i am concerned at the number of people being newly diagnosed. There has to be a reason for this.
Talk to you later.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Reading your post I can understand how you were glad to see the end of last week. I think we all have weeks like that and sometimes individual days in which there is no let up and we just want to go to bed in order to get up the next morning and start again.
It is difficult to know what to say about the medical establishment and their attitude to side effects from chemotherapy treatment. I think that after diagnosis they just want you to get on with the treatment and their attitude is that it has kept you alive, so just manage the side effects. I remember when I first started treatment that I asked the chemotherapy nurse for all leaflets on the side effects of the drugs. I especially remember asking for a leaflet on docetaxel (Taxotere). She went and got a little booklet and told me that when I read it I would not want the treatment! Did I really have any choice? My oncologist told me many years ago now that, no ifs and buts, the Taxotere had caused the neuropathy in my feet and that there was no cure and I would have to learn to live with it. As I have said many times, my GP and two podiatrists/chiropodists have told me the same. The test is very simple. You close your eyes and your feet are prodded with a needle to see if you have any reaction. I had no reaction because I felt nothing. I have learned to live with this peripheral neuropathy and most of the time I deal with it. Sometimes it tends to get on my nerves. There is no pain, just a feeling of tightness and dryness, even though my feet are well moisturised. My podiatrist tried essential oils on my feet, but it made no difference.
You will remember we are told about hands and feet syndrome. I had redness of the hands and some flushing of the face as soon as I started chemotherapy and this redness of the hands seems to have returned lately, especially when I feel hot. It is worse in the evening. When this redness first started, I was doing the three months of epirubicin and cyclophosphomide. I think we have to accept that all chemotherapy drugs are lethal and toxic and some side effects may be permanent.
I think that oncologists do not really worry about these side effects in patients. Sometimes they offer a pill to counteract these side effects, but these cause more side effects and I think that is the story of modern medicine.
I was interested to read that you have seen research that shows breast cancer treatment shows up as a culprit more than other cancer treatments. I am surprised at that because the taxanes and platinum based drugs are used for other cancers.
From what I have been told I do not think peripheral neuropathy induced by chemotherapy can be cured.
I am not surprised, either, by long term fatigue and weakness. These chemotherapy drugs are lethal and I do wonder if a person's body is ever the same after the treatment. I cannot see how antidepressant pills can suppress neuropathic pain, unless by turning you into such a zombie that you sleep and doze most of the time.
As for politics, the UK is a very archaic country and our political system needs a good makeover. The devolved governments in Scotland, Wales and Northern Ireland are more modern and business-like but the government in Westminster is unbelievably archaic. It makes you cringe to watch it. There is so much silly ceremonial and deference. You would have to see it to believe it. As for the monarchy, it is just a life of luxury for the so called 'Royals'. I would love to see a republic, real rule by the people of the people for the people, but it will not be in my lifetime. The Lords and titles need to be legislated away.
I am still following the Presidential race in the US. At least it is lively and it will be interesting to see who gets the nominations. I am glad Bush is out of it. I think two of them having been Presidents is enough for any country. I do not think Hilary deserves to win.
I can understand why you want to get your port removed. I would think that to get rid of it would be good physically and psychologically.
I do not expect to see much change in breast cancer treatment in the near future. The standard surgery, chemotherapy and radiotherapy have been around for a very long time. Only time will tell.
I was interested to know about the new book on nutrition. I think that all these books are variations on a theme. We need to remember to have our food based on all the colours of the rainbow and more. I think Chris Woollams has probably said all there is to say on the matter of nutrition. We do not have to make it complicated. We just have to remember to eat a varied diet with the emphasis on fruit and vegetables, cooked and raw, stay away fro dairy products, eat oily fish and some seafood and do not overdo the meat. The most important thing is to stay away from junk and processed foods. I do agree that probably a lot of cancer patients end up dying of malnutrition brought on by chemotherapy and that they do not die of the cancer!
On this thread, we have said so much about the importance of good nutrition over all the pages (231) that anyone really interested in healthy eating should start from page 1 and read through. They should also sign up to Cancer Active.
That is about all for now.
I hope you have a better week.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I was puzzled by something I read on one of the other threads. It was about chemotherapy and wondering why it was not more individualised. Before a patient starts chemotherapy they will be weighed and measured or asked for these details. The amount of chemotherapy drug administered into your body will be based on your height and weight. In a way this is individual but for breast cancer the drugs are standard.
Patients must learn to take charge of their treatment and not be afraid to ask questions.
To all newly-diagnosed patients, do not be afraid, as you can get through this treatment.
Best wishes to everyone.
Sylvia
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Hello Supportive,
Thank you for your PM.
I think the best anticancer diet is one based on the Rainbow diet, which emphasises fruit and vegetables of all different colours. It is also called the Mediterranean diet.
I eat lots of fruit, especially blueberries, raspberries, blackberries etc., which are high in antioxidants, along with green vegetables, especially those of the cabbage family. I eat plenty of wild Atlantic salmon, rich in omega 3. I do not eat meat or dairy products, but have plain live culture unsweetened soy yoghurt (Sojade), as well as Alpro unsweetened calcium enriched almond drink. I eat plenty of nuts, seeds and pulses. I stay away from sugar and junk food, not to mention alcohol. I drink lots of green tea and eat bitter almond kernels regularly.
I hope this helps.
Best wishes.
Sylvia
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Hello everyone,
I thought you might be interested in seeing in full bloom, the carnations that I bought in bud last Sunday. I have watched them slowly open up during the week.
I was in our grounds today and was amazed at how much the shrubs etc. are bursting into bloom.
Have any of you Brits been watching the final two episodes of Dickensian this evening? The series has been brilliant and the acting superb. It has been so good to be able to switch off the pantomime of the supposed deal with the EU. I fear the next four months will be wall to wall UK referendum. I wish the politicians would shut up and leave the people of this country alone to make up their own minds whether to leave the EU or stay in.
Wishing you all a good week and hoping to see this thread much more interactive.
Best wishes.
Sylvia
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Hi Sylvia, Mary and HanTagh
Feel Good food: I would add fish, the oily variety: mackerel, sardines etc.
Thank you Mary and Sylvia for your posts about neuropathy, they were very informative.
Sylvia, re antidepressants and neuropathic pain, I was once prescribed amitriptyline (a very old tricyclic antidepressant) for sciatica, by a British GP. It worked (not totally) however I got every single side effect (except the breasts starting to produce milk), to the power of 100 (e.g. 'dry mouth' = was so tortured by thirst I ended up drinking 20 liters of water a day, not great when you can't sit down and have to use an urinal - I nearly emptied my bladder in bed several times too!). The side effects were worse than the sciatica so I stopped the treatment after a couple of days and took the pain (it doesn't like for ever anyway, acute for several hours, then progressively gets better, you just have to be better, and as other women have told me, it is no worse than childbirth). It took a whole month for the 'zombiness' and sleepiness and dreadful nightmares at night to get better (several more months to disappear altogether), and a whole 6 months for the headaches and blurred vision to go away. I thought I would never get back to normal, i.e. to the way I was before, and the sciatica healed (thanks to a very good private physio) before the side effects had completely gone! The side effects were extremely visible to other people too: several clients thought I was drunk and complained to my company...
Apparently my reaction was that bad because I was a poor metaboliser for that drug. I am never taking anything like this again (I prefer the pain) and as amitryptilline and gabapentin (another great one for side effects, including suicidal thoughts) are sometimes prescribed after an axillary dissection, I have told the hospital about it: luckily they are not into prescribing painkillers galore and happy to try and find another solution.
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Penzance,
I wanted to jump on here and tell you that I was also prescribed the amitriptyline. When I finished chemo I was in dreadful pain. Shooting pain over my body, I could not drive because I had injured my shoulder while on chemo. I was pretty miserable. I went to my GP, he prescribed neurontin (gabapentin). I tried it a couple of days and said "no". I went to my oncologist and she offered anti-depressants, I tried it and got almost immediate blurred vision, I said "no". I went to a neurologist and he gave me the amitriptyline. Out of desperation I took it for about a week, it was like being wrapped in cotton wool; it got rid of the pain but I hated the drugged feeling. So I quit that too and just put up with the pain for months. I did go to an acupuncturist who helped me more than anyone.The pain is much less now (except for my shoulder, with activity) but I am left with the neuropathy in feet, and a weakness in my legs if I am on them for any length of time. My foot neuropathy is different than Sylvia's; I have feeling in them, but burning pain in my heels, and tingling and pins and needles in feet and the more I am on them the more the sensation. I could handle that though, but the weakness in my legs is really slowing me down. I also have the shooting nervy feeling in my hands and up my arms. But I agree with you, the drugs I was offered I found dreadful, and it is sad it seems to be all they can do for us.
Hope you are feeling better now, Mary
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Hi Sylvia, Mary and all
Sylvia fortunately my wi fi has been reconnected and I managed to go through the links you sent. They were excellent resources of what to take to avoid depression and insomnia. Thanks for sending them. I hope they work for me too.
Yesterday was a very busy day and though I didn't feel well I had to attend my classes as our current term will be finished in two weeks and I have no time to have make ups for them. In fact Sundays and Tuesdays are my busiest days in a week as I have classes both in the morning and in the afternoon. On Saturdays and Wednesdays I have classes in the afternoon and Mondays and Tuesdays I'm off.
I don't know why my cold has lasted so long as I used to get well very fast before this. Today I woke up with a very bad dizziness. Last night I fell asleep well but at 2:30 am I was wide awake. This is the second night that I go to asleep well but later on I wake up and find it hard to sleep again. Today I just want to do nothing but sleep but unfortunately I m not in the habit of sleeping late in the morning. Our school and work hours begin at 8 and everyday I wake up before 6 to prepare breakfast and make everything ready for my daughter and husband. I have badminton at 11 and I hope I feel well enough to attend it as I also missed it on Saturday due my cold.
There is a good news to tell you and that is my blood test results. I received it on line and my tumour markers were within normal range. I feel for now I can consider myself cured to enjoy my life. Despite all the anxieties I went through in the past few weeks, I want to keep positive again. I ll see my oncologist in two weeks and again I have to deal with the challenge of diphereline. It's been more than one year that Im having these injections.
About what you said about the course of treatment in Iran , I should say your guidelines are the same as what is being done here,but the kind of chemo,amount of it and the kind of surgery is highly dependent on the doctors ideas. I had lumpectomy and boost radiation during surgery. My surgeon's name is Dr Mohamad esmaeel Akbari if would like to get some information about him on the Internet. He strongly opposes mastectomy unless there is no other choice and in most of his patients he does breath conserving surgery. There are some other well known doctors here who just do mastectomis even for early stage breast cancer patients.
Mary I have the same problem with my legs and ankles. Sometimes I have such a burning and tingling sensations in them that I can hardly walk. But thankfully they do not occur during badminton playing. The usually occur to me after an enjoyable game either the following night or the day after. Regarding what you asked whether I could speak any other languages I should say when I was at university I used to study German as well and I really enjoyed it. But since then as I have never had the chance to communicate in German I have almost forgotten everything.
Lots of love
Hanieh
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Hello Sylvia again
Your flowers are lovely. Here we are expecting both the spring and new year celebrations in less than a month. I hope we all rejuvenate and refresh with the coming of spring.
Love
Hanieh
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Hello Penzance,
It was nice to hear from you. You are right about the importance of oily fish, mackerel, sardines and of course wild salmon. I do not say farmed salmon, which is mostly what is sold in the shops and supermarkets. From the oily fish it is that all important omega 3 that we need. I buy frozen wild salmon and when I can find it chilled sockeye wild salmon. I buy them both in my local Tescos store. I am not sure on which page of the links that I posted for Hanieh, but I do remember that oily fish comes up quite a few times. Tuna, fresh or frozen, is also a good source of omega 3, but it is not to everybody's taste because of mercury. I have read that we can get omega 3 from canned wild salmon but not from canned tuna. We are fed so much information that it is hard to know what to believe. Canned salmon and sardines are also an important source of calcium, not the skinless and boneless, which is ridiculous, for those of us who have developed osteoporosis from our breast cancer treatment.
I read with great interest all that you said about anti-depressants. I was so sorry to hear that you had had so many side effects. I do not think anyone would take these pills if the side effects were explained very carefully and thoroughly to them.
I am glad that you have a hospital that is not given to handing out pills. I would think that is quite rare.
That is all for now.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
I was glad to know that your wi-fi has been reconnected and that you have got through to the links that I posted.
I was glad to know, as well, that you found them useful. It is always good to know that people on the thread are taking the trouble to read the links. It is the only way that we can have interactive discussions and I am convinced that good nutrition is the secret to good health. We all need to put wholesome food in our bodies and not junk. We are what we eat. We would not expect our cars to run on junk.
We do not have to try to memorise all the good food. We just have to make sure that we have a very varied diet and nothing in excess. In the end, if we keep informing ourselves, we automatically remember what is good for us. Let me know how you feel in the long term after eating plenty of avocados, bananas, broccoli and the cabbage family, sweet potatoes, oily fish and so on and so forth.
I was very interested to know your work routine. You sound very busy. I know how hard it is when you have courses both in the morning and the afternoon. In front of a class you have to give all of yourself to your students. It is really exhausting if you have a class at 8am and then another at 4pm. Just tell yourself you will be able to have a rest in two weeks time. Looking at the days again do you mean that Sundays and Thursdays are your busiest days?
Your cold is probably lasting longer than usual because you have got a bit run down. Vitamin C is very good for helping with colds, so make sure you are getting plenty of citrus fruits and berries.
I make citrus fruits a regular part of my daily nutrition and have a mixture of oranges, tangerines, pink or red grapefruit and lemons. Kiwis are also high in vitamin C. In fact I have read that kiwis have more vitamin C than oranges. Hot lemon juice with a little honey seems to speed up recovery from colds. Here in the UK we seem to have fruit and vegetables from all over the world. At the moment we have delicious fruit from South Africa and South America, not to mention Spain. I eat blueberries everyday. They are very high in antioxidants.
I do hope you will manage to get a good night's sleep soon. You are too young to be having disrupted sleep. Try to put all this breast cancer business into a dark corner and fill your mind with nice thoughts. Think of all that is positive in your day and send your dark thoughts packing. Take it easy with the badminton until your cold has gone and you are feeling better.
I was really glad to know that your tumour markers are within the normal range. It is a good idea that you have to consider yourself cured and to enjoy life. I do hope you will be able to solve the problem of these Diphereline injections. Be frank with your oncologist and ask what purpose they are serving. Do you know the side effects? I am not a doctor but am wondering whether they could be causing you to feel depressed and anxious and whether they are keeping you awake at night. I know from other people that medication can do this. A cousin of mine was on steroids for COPD and it made her suffer from hyperactivity, insomnia, mood swings and weight gain, not to mention osteoporosis. She took herself off them and now feels normal.
I was interested in what you said about breast cancer treatment in Iran. Here, it will be the oncologist who decides on the chemo regime and the duration but the amount for each individual dose will be strictly according to the weight and height of the patient. To me this makes sense because other wise you will underdose or overdose the patient. I know that, when I was going through treatment, the drug I was to receive, was made up only after I had arrived for my appointment, and was made up at the hospital pharmacy.
As for lumpectomy or mastectomy, I think that was largely decided on depending on the size of the tumour at diagnosis. I had a large tumour so was not given a choice and had a mastectomy of the right breast. Because of the large tumour I had six months of chemotherapy before surgery. I would have opted for a mastectomy anyway.
That is all for now. I shall write more later.
Sending you fond thoughts.
Sylvia xxxx
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Signs of Spring!
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