Calling all triple negative breast cancer patients in the UK
Comments
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Hello Amanda,
It was nice to see you back on the thread. I do understand that you have a busy time with your work routine and your family commitments.
I can understand that you do not like to talk too much about cancer, and that is a good thing in that you have got back to a more normal life. That is the best way to go.
I am sure you will soon get the weight back off as Spring and Summer comes along and you become more active. Just take the exercise gently so that you do not overdo things. Walking is the best exercise and the one least likely to cause any damage. I have not been walking much these past two months and I shall be glad to get back in the grounds here again and also to do some leisurely walking.
I was glad to know that your hip and neck pain went when you stopped exercising. You were probably doing too much or perhaps getting your hip and neck into awkward positions.
I agree that the weather has been dismal in the UK for a couple of months and January
has been horrible. I have never found it so difficult to get through autumn and winter, and yet I know here in Devon it has not been as bad as elsewhere. I do so dislike the damp and rain. It has been raining for about five straight days and we are told we are in for wind, gales and puring rain for the next few days. At least it is not snowing.
I can understand how you feel about going to work in the dark and coming back in the dark.
I do hope you find a good yoga class as it is supposed to be excellent both physically and mentally and really good helping with stress and we all need to keep our stress levels down in order to keep the stress hormone cortisol down.
I do hope that all goes well with your three-monthly check up with the oncologist. In the UK the check ups always seem to be the same. They are just physical, may not seem much to the patient, but the oncologist knows what to look for. He/she is looking for everything across the surgery area to be smooth if you have had a mastectomy and for no lumps if you have had a lumpectomy. Underarm and around the neck they are looking and feeling for any abnormality in the lymph nodes. They will do the usual breast check and if they feel anything amiss they will send you for an ultrasound, not necessarily the same day.
I do not think you will get scans or blood tests unless the oncologist thinks there is something wrong or unless you, the patient, express concerns. You could mention the pain in the hip and neck, just as a precaution.
I am all in favour of asking for a DEXA scan to find out if the bones are alright, because cancer treatment (chemotherapy and radiotherapy) can cause osteopenia or osteoporosis. I did not have one before treatment, but I did have one afterwards and sure enough I had osteoporosis. Had I known more about the risk of osteopenia and osteoporosis I would have had a bone density scan before I started treatment. It is not a dangerous scan. I have been on calcium supplements and 5,000 IUs of vitamin D ever since. I do not take the ones offered on prescription by the NHS as I do not think they are any good. I buy my own.
I can tell from your post that the wall-to-wall news is getting to you. All we get is Donald Trump and Brexit. As far as Brexit goes we were offered a referendum, Brexit won the referendum. The people of this country said that they wanted to leave the European Union and yet seven months on the politicians are messing around. I believe the people of this country are sovereign, not Parliament, but I think the politicians are trying to go against the will of the people. The European Union is completely undemocratic. I believe in a nation state and the right to preserve our culture, so we do have a right to control the population. I do not think that this country should have laws imposed upon it by unelected bureaucrats.
As for Donald Trump, whatever we may think, he was elected fairly through democratic system that has been in the US for hundreds of years, the electoral college is what decides the result and yet it is only this year that there has been ranting and raving about how Donald Trump did not have the popular vote. One thing we can say is that he is trying to keep his electoral promises to the people. He wants to protect Americans in this dangerous world. We did not like Barak Obama interfering in our referendum, so I think we should butt out of American elections. We have had much more nasty people over here than Donald Trump. Pinochet comes to mind, not to mention the Saudi monarchs. I think our country is in a state of mass hysteria. Perhaps it is all those big mugs of strong coffee they are drinking and all the sugar they are consuming.
I think we all want world peace, but the politicians seem to want war.
I do hope you will manage to catch up with all the posts and I do hope you can at some point read the four pillars of cancer from Chris Woollams and Canceractive.
Thinking of you and wishing you all the best.
Sylvia xxxx
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Hello Chris,
It was so nice to have you back on the thread. Thank you for letting us know that you are starting radiotherapy on February 3rd. As you know, Kath in Australia has just started her radiotherapy this week on Monday January 30th, so we shall be able to follow both of you and compare notes. Gina will finish her chemotherapy (Taxotere) at the end of February and Rhonda will finish her chemotherapy (Taxol) mid February.
Are you having your radiotherapy at the Christie Hospital in Manchester?
I still do not think that in the UK there are alternative kinds of radiotherapy being offered. Two centres for proton beam therapy are apparently being built, but goodness knows when they will be available for patients.
I think you team have given you good advice about skin care. I used aloe vera gel which I bought from Holland and Barrett. Aveeno products have a good reputation but I do not use them. During treatment I used to shower using aqueous cream or Simple soap. I usually use unscented Dove soap, but I was told not to use this during treatment because it had metal in it. I was told not to use talcum powder, but it is not something I use any way.
Do you have any new kind of information about radiotherapy treatment or tips during treatment that may be of benefit to others?
These days I use Dr Organic products that I buy in Holland and Barrett. I tend to use the Dr Organic extra virgin coconut products. They are the moisturising body cream and the hand cream, as well as the small pots of day cream and night cream for the face. I also use Dr Organic's royal jelly cream on my legs.
I long ago stopped buying toiletries in the pharmacy because of parabens etc. I do use pure organic cold pressed coconut oil which I find an excellent replacement to cold cream. For my hair, again, I use Dr Organic's pure coconut oil shampoo and conditioner. Occasionally I also use Simple shampoo and conditioner. I hope this helps.
You are right not to spend too much time looking at sites relating to cancer, especially if it is causing you anxiety. Your main priority is to get through your cancer journey and the standard treatment. There is no point in frightening yourself. You need to keep your stress levels low.
It is good that you have planned what you are going to do post treatment. What kind of work do you do?
It is absolutely right for you to be determined not to let cancer possess you.
I was looking at your details and cannot see any mention of surgery. Did you have surgery?
What have you been doing to get through horrible January?
Sending you fond thoughts.
Sylvia xxxx
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Hello Val,
I was interested to know that you always loved your visits to England. I was interested to know as well that your father travelled there often as most of his family had migrated there from Ireland. Have you traced your roots back through Ireland? I know Americans like to do this. I was also interested to know that your husband's job took you and your children on visits to London.
You will have seen that I was talking about Brexit with my fellow Brit Amanda, In 1975 we had a referendum in the UK about whether to stay in the Common Market, which I think was made up of about six other European countries. We had been taken into the Common Market without the population being asked. This Common Market, which was a trading association, grew into the European Union, which now has twenty eight countries including us, and is destined to develop into the United States of Europe. It has grown into a bungling bureaucracy run by unelected people who dictate to what were sovereign countries, like the UK. Our Parliament was having its powers taken away and part of the deal was free movement of people throughout the 28 countries. There has been a lot of opposition to this because of mass migration from the poorer countries which has increased our population by leaps and bounds to the point where we are losing our identity. This ended up with a referendum last year for the people to decide whether they wanted to remain part of the European Union or leave, hence we have the names Remainers (those wanting to remain part of the EU) and the Brexiteers, those wanting to leave the EU. The whole campaign leading up to referendum day was toxic, lots of fearmongering and the government and establishment confident it was going to win (stay in the EU). However, the Brexiteers won 52% to 48% and all hell broke loose. Since then the establishment has been doing all it can to stop Brexit and go against the wishes of the people. The Remainers have been bad losers. We are supposed to start the process of leaving the EU at the end of March, but I do wonder if it is actually going to happen. The politicians have weighed in and are messing around. They say they are sovereign but I believe the people are sovereign. Democracy is the government of the people by the people for the people.
In addition, we now have the surprise election of Donald Trump. I think once again this was the people having had enough of being ignored and deciding they were not going to take it any more. Whatever one thinks of Donald Trump, he did get elected through the s=established process and he is carrying out his campaign promises. Only time will tell what will happen. If the American people do not like his policies, they will vote him out in four years time, but my country should butt out.
I do not think a United States of Europe could work. The UK has kept the pound and refused to adopt the Euro. Europe is made up of too many different countries, is too tribal, has very different culture and languages. It is the big country like Germany that is calling the shots and it seems to me that the EU could be Germany's way of winning the two World Wars which it caused but did not win. I say that without any malice.
I hope this helps you to understand. I think that it is good that we can discuss all this peacefully.
Did you watch any of Prime Minister Theresa May's visit to the US?
I am very interested in history and this week I watched a really interesting programme about George III. He was the king that was on the throne at the time when the US decided to break away from Britain and have their revolution. All his papers are just being released and it is fascinating to know what he was writing at the time. He is known as the mad king and the king who lost the American colony. With all the trouble going on at the time it is no wonder if he really lost his sanity. I got the impression that he was a sensible person and we now know that did offer to abdicate.
That is about all for now. How are things going with your work and everyday normal life?
In the name of that special relationship between our two countries, that keeps getting mentioned, very best wishes and may the world sort out all its problems.
Sylvia xxxx
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Hello Sylvia and thank you for your message.
I thought I had put all my treatment details in my signature but when I checked the surgery and radiotherapy were private. I've switched them to public now so hopefully they should display - thanks for the prompt!
Chris xx
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You have a good memory Sylvia - I am indeed having my treatment at the Christie and the team there are absolutely wonderful, I really do have confidence in them and feel I'm in safe hands.
I found the info you gave about Dr Organic products from H&B interesting. I buy the Nuxe range of products from M&S as they are parabens free but they are quite expensive so I'm always on the lookout for alternatives.
I have a meeting on Friday prior to my treatment with one of the team to go through everything I need to know to stay well during radiotherapy and will pass on any info that may be helpful to others going through this
Chris xx
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I think that going back to work will be a good step forward for me. My role is as a nurse manager on the neonatal unit and its a busy role so I will be quite distracted. I feel I need this now as I'm getting too hung up about cancer and the ' what if' scenario which is just not healthy. I'm going to reduce my hours and also have an assistant ( such luxury) so feel this will be manageable.
I know January has had some pretty miserable weather but hopefully February will be drier and brighter. I think the dark evenings are beginning to pull out very slightly and even this evening noted it wasn't fully dark at 5pm. It always makes me feel better when the days get longer - really makes you feel spring is almost here!
Best wishes to Kath as you continue with your rads and to Gina and Rhonda as you continue with your chemo - nearly there ladies!
Take care everyone
Chris xx
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Dear all
Again, I don't know where the time goes. I We had our church Burns Supper last Saturday (feels like only yesterday) and I'm told everyone there thought it was an excellent evening- we have some very talented people in our congregation who provided superb renditions of Burns' work. My job was to buy the haggis and other foodstuffs, make the cranachan and do the cooking for around 100 people and then help with the dishes and clearing up. Besides helping me my husband set up the tables in the church hall and we had a team of helpers who prepared the vegetables and helped to serve. Proceeds from the evening raised over £1000 for church funds. I'd hoped to take some photos but I didn't get a minute from start to finish.
Ive been very tired since then and Ive had a busy week trying to plan how/when I can get back to work but I feel I'm going round in circles whilst I wait for dates for taking up new post, medical consultations and surgeries. I've tried to find out how long I might have to wait but I'm still waiting to hear back. This is causing me considerable stress as firstly, I should have taken up post last March but I'd started chemo then. I was told my post would be kept open for me. The second stressor and complication is that my work involves collaborating with different universities and departments and people. As my start date has not been confirmed anyway because each department has different requirements I really don't know what to tell them. At the moment they don't know I'm going to be getting surgeries. It is a possibility albeit small a one, that I could have the mastectomies before return to work. Anyway I'm exhausted thinking about it all. Until I get an actual date for something then everything's in limbo.
On other matters our daughter should learn of her BRACA status anytime now as it's been 4 weeks since she had the blood test.
Our youngest son has just had his appointment with genetics so he has a few weeks to wait to learn his status.
Our oldest son is not in a great place just now. He has depression and it looks like he has chosen not to contact the genetic counsellor. Both our sons have young children so it's a bit of a worry for their partners.
So all in all I'm feeling under pressure and I'm not sleeping. My residual neuropathy and arthritic pain in my whole arms are especially troublesome during the night. I've probably been overdoing things and caused a more acute flare-up from trying to do basic exercises!
I've stopped monitoring the small lump in other breast - I'm not sure what that signifies? Maybe denial? I may well be heading for a melt down.
I hope that I will be a lot more positive the next time I check in with you all. I don't feel I can offer others anything particularly inspiring but I wish you all the very best and give thanks that because of the dedication of Sylvia, Mary and others- we all know we don't have to be going through things alone.
Reardless of whether you are going through good times or bad times we can be certain of these four words 'This too will pass'
Maggie
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Hello Chris,
Thank you for your posts and thank you for putting up the rest of your details. It makes it so much easier when answering a post.
I was glad to read that you feel in safe hands at the Christie. It is a hospital that is often mentioned with reference to cancer care along with Marsden in London. I think it is no coincidence that it is London and Manchester where the proton beam radiotherapy buildings are being constructed. Apparently it is a very complicated process.
I was interested to know about the Nuxe range of products from M&S. I did not know of this range and the fact that the products are parabens free. We do not have an M&S store in Exmouth and we have to go to Exeter for it. I have not been there lately but I shall be sure to have a look when I do go. There is a Simply Food being built here in Exmouth and I am hoping it will sell other products. The products I buy at H&B are not cheap but I tend to buy them when there are special deals. I am a regular customer there so I build up points and special deal vouchers. Some are buy one get one free, others buy one get one half price!
I was glad to know you are having a meeting on Friday with one of the team prior to your treatment. I think that is an excellent arrangement. I am sure we shall all look forward to any tips you may have to offer.
Remember to try to have a look at the All topics section of bc.org. Just go down the list. I look at it from time to time and also the section Active topics, which shows you which threads are still the most active.
Under Canceractive and Chris Woollams, you will find a paper entitled "20 ways to improve your radiotherapy experience", and then in bold, "20 tips for people having radiotherapy". Under this heading it says "Clinical research in 2012 and 2013 has shown that Calorie Restriction improves the results of radiotherapy, but then, so does exercise and Hyperbaric Oxygen Therapy and melatonin (even the mighty Sloane Kettering says this), and flaxseed, astragalus, milk thistle, mistletoe and others can be important adjuncts to radiotherapy. Improved results, fewer side effects. Smoking can increase the dangerous side effects".
The next title is "1 what is radiotherapy?" and then it goes on 1 to 20 giving an explanation of radiotherapy and all the details to help you get through it.
http://www.canceractive.com/cancer-active-page-link.aspx?n=258
If you can, read it before Friday, as you may have some questions to ask your team.
When I had my radiotherapy in 2006, I did not have the benefit of this article, but I was taking astragalus and Iscador (mistletoe) just by coincidence.
There is also a fact sheet about melatonin entitled "Melatonin – some quick facts. The many actions of melatonin in preventing and treating cancer".
http://www.canceractive.com/cancer-active-page-link.aspx?n=1242
It sounds as though you have a very interesting job as a nurse manager in the neonatal unit. I am sure that will keep your mind off cancer.
It is normal that you will be thinking about cancer at this stage, but you will find that the further you move away from diagnosis etc. the less room it will take up in your mind. You will get used to living normally and have perhaps a bit of apprehension and nervousness as dates for check ups approach.
By the way, Kath in Australia is also connected to nursing.
We shall all be thinking of you on Friday.
Good luck. Fond thoughts.
Sylvia xxxx
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Hello Maggie (merscotland),
I was so glad to know that everything went well for your Burns Supper last Saturday. What a feat you carried off cooking for 100 people. I am not surprised you are feeling tired. You certainly raised a lot of money.
I can see that you are having a busy stressful period, but try to find a way to relax, as everything will sort itself out in the end. I can understand how stressful all this waiting is, but you will eventually get your date for returning to work. What exactly do you do that is connected to universities?
It might help the situation if you could find out or even arrange a date for mastectomies and work around that with your work. I know that these days patients seem to have their surgery and sometimes leave the same day. When I had my mastectomy I was kept in hospital for five days and during that time the drains inserted after the surgery were checked each day. I was not allowed to leave until the day the drains were clear and taken out. These days I have heard of patients leaving with the drains in and having a district nurse come in to check them and remove the drains when all is clear. I would think you would need to rest a bit before returning to work. I also would think you would need some physiotherapy. I was given instructions on exercise while in hospital and the day after surgery. I then continued them at home. I do hope you will be able to sort this all out and have peace of mind.
I can understand the anxiety about your daughter and her waiting to get her BRCA status. It seems to me that four weeks is a long time to wait. With all this cancer business, waiting for one thing or another seems to be a very stressful part of the whole journey. Only those of us who have been through it understand the stress of waiting.
I do hope you will have good news for your children. I think you all have to focus on the fact that if it is positive it is still only a possibility and may never happen.
It seems that we cannot win whatever we do. We have to be informed about this disease, and we are told or believe that knowledge is power, but every bit of knowledge brings anxiety. As you say, this too will pass.
I do hope your oldest son will get through his depression. Do you think he is depressed because of this BRCA gene factor?
I can understand that you feel under pressure and that it affects your sleep. A good night's sleep is very important so try to do something relaxing before bedtime. I find watching something funny on the television helps one to sleep. I have a mug of strong chamomile tea an hour or so before I go to bed. If all else fails, try some counselling. It is always good to talk problems out.
Thinking of you and sending very best wishes. You will get through this.
Fond thoughts.
Sylvia xxxx
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Hello Amanda,
I forgot to say in my post yesterday that a low carbohydrate diet is supposed to be good for losing weight. A friend of mine here lost a lot of weight by cutting out bread and potatoes. We now know that high carbohydrate diets are not good for us and we are being told that they are one of the main causes of illnesses like diabetes, and also for extreme weight gain. I would think a meal based on a piece of oily fish, two green vegetables and one carbohydrate such as carrots, would be a balanced meal.
I was wondering whether you watched two programmes on the television last night on BBC2 – Trust me I'm a doctor and the documentary Hospital. The most interesting part of the first one was the section about the importance of a healthy gut and the most interesting part of the second one was about all the patients that are being treated who are not eligible. It is costing the NHS a lot of money. We are supposed to be a National Health Service, not an International one.
I am still using the coconut on my mouth.
Fond thoughts.
Sylvia xxxx
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Hi, Adagio,
Looks like today on our GroundHog Day you are leaving for Mexico for a week, it should be nice weather there, you can soak up the sunshine. I hope you have a wonderful time, put worries away, and bring back some sunshine for all of us. It sounds like most of us on this board are just having gray and/or rainy weather!
Have fun, talk soon, Mary
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HI, Sylvia,
I am afraid I have gotten behind on the posts again, and now there are so many, it's a good problem to have. I'm glad so many people have come here and are sharing their stories. I have gone back to your last post to me and will attempt to answer it.
I was interested to see that you have a thought that years ending in 5 have a sinister meaning in your life. I have done the same thing because life seems to go on at a manageable pace for some years and then all of a sudden, everything seems to fall apart, and there seems to be a pattern to it. Then I tell myself I'm being silly and go back to saying "It's just life." I have realized, especially over the last 10 years, how little control I have over things. Maybe that's what aging is, just learning how to let things go.
I see you realize the truth of what is going on here in the US. 90% of our media is solidly against Trump, they are going to make his job as difficult as they can while he is president. Most of what you read in the UK is meant to make you think that he stole the election, everybody hates him, and wants him to step down. The truth is, as you said, he won the election by a wide majority in the electoral college. Hilary Clinton won the popular vote, meaning she had more total votes. Since Trump had such a large lead in the electoral college, the absentee ballots and the provisional ballots weren't even counted. Since the military people around the globe are among the absentee votes, and they usually vote largely Republican, he might very well have won the popular votes too, had they all been counted.
Everybody here does not hate him, the truth is that of all the people who voted regular ballots, roughly half of those voted for him, and half for Hilary. So at least half of the voting people in this country do not hate him, and are glad he is President instead of HIlary. The people who are holding the protests and riots are very vocal. The truth there is that many of these protests are ginned up by radical groups who live to incite chaos. And some of the protests are lead by well-meaning people who have some cause they think Trump is going to go against. I think it's funny that one of the chants you hear at some of these protests are protesting what they call "hate speech", and yet they themselves get very angry and spout nothing but hate. I noticed last night protestors started a fire Berkeley UCLA and mobbed the street around a building where a gay conservative man was going to give a speech to a college group of about 500 people who had asked him to come because they wanted to hear him. He was whisked away to safety while the mob roiled around the fire and screeched about how intolerant he was. it would be funny if it wasn't so sad. This bastion of "free speech" seems to be no longer that way. But yes, if one reads the media here, watches 99% of the comedians, or listens to movie stars; one would think we were being ruled by a cruel dictator who is chaining people in dungeons etc.
I did not follow Theresa May closely while she was here. I did hear that she and the president got along well when she was here. But then I heard when she got back to UK she was talking about him negatively, and sounding somewhat wishy-washy on Brexit. So I am not sure where she stands.
I have meant to post more of Chris Woollams' posts, I hope to get to that soon.
Talk to you soon, love,
Mary
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Hi, Maggie,
Congratulations on the Burns supper, you certainly worked hard at it and it sounds like it was a success. I had to look up a recipe for cranachan, and it sounds delicious. I had a good idea of what haggis is, it sounds simiar to some of the food I had while growing up. We would butcher our own beeves and pork, we used every part of it. If we didn't eat the tongues, hearts, livers etc. on their own, these organs would be chopped up or ground and mixed with other things and stuffed into cleaned intestines. Blood sausage would consist of the blood, which had been saved, mixed with meat and thickeners such as flour and cornmeal. Liver sausage would be the liver mixed with the above ingredients. Panhaus would be made after boiling the cleaned heads of the animals and picking out all the meat, grinding it and mixing it with thickeners to cool, slice and fry. I think the one thing I don't recall using was the stomach.
It sounds like a very stressful situation with your job, with everything being up in the air. It sounds as if they value you and your work highly, and are waiting for you to get back. I hope you get all the surgery straightened out soon, you will feel much better then when you have a clear vision of where you are headed.
I very much hope your children will not have to deal with positive results of the BRACA test. But I suppose it's good to be forewarned, and take precautions. I do know some young women here who have dealt with that, their mother died, her 2 daughters were positive for the gene, and their brother was negative. Best wishes for good results!
I don't know how significant your neuropathy is, but I have neuropathy too and it does make exercise a real challenge for me. I don't want to be inactive, but have to be careful about what I do, so as not to become overtired and painful.
Don't worry about not being positive right now, that is why we are all here, to try to help you through these tough times. I do think when you see a clear path forward you will feel much better, and then can take a step at a time.
Many years ago a small group of friends and I made T-shirts with "This Too Shall Pass" on them! We were all having some crisis in our lives which seems now that it wasn't much at all. But we did have some fun with the shirts!
I shall talk with you again soon, Maggie
Mary
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Hello Mary,
It was good to read your post. I do agree that the posts are moving along swiftly and it is hard to keep up sometimes. The most important is not to mix up the different people.
It does seem that things seem to happen in my life in the years ending in 5. If I think back to 1945 my eldest brother died aged 10 of endocarditis or rheumatic carditis, inflammation of the lining of the heart after rheumatic fever as a complication of scarlet fever. I was just 3 and barely remember him. In 1955 my maternal grandmother died of metastatic breast cancer. In 1965 I got married for the first time and that marriage ended in 1975. In 1985 my mother was very ill, on a respirator, and Raymond and I flew back from Canada to deal with it all. In 1995 my other elder brother died quickly of metastatic cancer. In 2005 I was diagnosed with breast cancer. It looks as though 2015 missed out. It is probably all coincidence.
I think I do understand what is going on in the US and I think the same thing is going on here. The media holds a lot of responsibility for this, along with the politicians and the establishment. They do not get it that ordinary people are sick and tired of them, are as mad as hell and are not going to take it any more. Of course, Donald Trump did not steal the election, and the Brexiteers did not steal the referendum. Just like Donald Trump is held responsible for everything bad in the US, Brexit (which has not gone through yet) is held responsible for everything bad here. I do not think society is necessarily divided into political parties any more.
Last night Parliament was voting on whether to agree to activate Article 50 which will be the starting point for getting out of the EU. Agreement to activate it was won, but next week the same nonsense has to take place in the House of Lords, and there has to be a third reading on it in the Commons. It is crazy. The Labour Party is against Brexit, but the leader did a three line whip to say that the people had spoken and the party had to agree to activate Article 50. Some of the Labour Party MPs rebelled against the Leader. It just goes on and on.
You have to respect Donald Trump for winning the election and for, without delay, implementing his election promises. That is quite rare with politicians, but then Donald Trump is not a politician and does not frequent the rarefied air of the political elite. He should be given the chance to carry out what he was elected to do and if he does not then he will not be elected for a second term.
I do not know what will happen here with Brexit. Having spoken for two whole days before the vote last night, the politicians' next move is to start insisting on amendments. We have this absurd notion about hard or soft Brexit! As Theresa May keeps saying, the people have spoken, and Brexit means Brexit. All I know is that I do a lot of thinking about everything and make up my own mind about what I am going to do. I must be the world's worst candidate for being amenable to brainwashing.
I think we have the same groups here. I call them the intellectual airy fairy elite who live in their gilded towers and have no common sense. They yell with hate against hate yelling!!! I cannot understand why anyone would be protesting against a President who want to protect his country and citizens against terrorists. I happen to think that the first duty of any government is to protect its own people. We have groups on the streets here shouting that they do not want Donald Trump to come here on a State visit. They should stop busy-bodying. It would be more useful if they were yelling about the injustice of one in five children living in poverty here, too many people homeless and living on the streets, our NHS going down the tubes and the general inequality that exists in this country.
Did you know that Nigel Farage has his own talk show on LBC here? I have been listening to is on the television where it is just audio, because LBC is only on digital radio and I do not have this. It is available on the internet, so you could listen to it. It is on at 7 pm to 8 pm our time. It has been brilliant with most people phoning in and congratulating him on making it possible for us to have a referendum. He has been talking a lot about Donald Trump and most people phoning in have been in agreement with what the Donald, as Nigel calls him, has done. There are some of those phoning in who are really rude and out of order. Nigel had a real run-in yesterday at the European Parliament, where he is an MEP, but, boy, did he give those bureaucrats a piece of his mind.
All the toxic behaviour that is going on would be, as you say, funny, if it were not so tragic.
I think Theresa May is in a difficult position. She got thrust into all of this because David Cameron resigned because the referendum did not go his way. I think she does want to carry out the will of the people and get the country out of the EU. It would probably be wise for her to call a General Election in order to get a proper mandate from the people. Labour is in a complete mess and the spirit of the 1945 Labour election win has disappeared. I respected that win and am sad that I cannot feel it in the present Labour lot.
Please do not believe what you hear from our media in the UK. I do not think that Theresa May has been talking negatively about Donald Trump, neither is she wishy-washy about Brexit. The media here was on and on about how Donald Trump was holding Theresa May's hand as they came down some steps. Apparently he suffers from a fear of going downwards. Our media is more interested in Theresa's shoes than her brain cells!
I think we need to go slowly with Chris Woollams' post as there is so much information on them. It gets very confusing for those trying to take it all in.
With Gina and Rhonda going through chemotherapy and with Kath and Chris going through radiotherapy, they will be interested in those two things.
I am out of time now. I shall talk again soon.
Love.
Sylvia xxxx
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Here is a reference to Cranachan. It sounds very rich and full of calories but must taste delicious!
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Hello sylvia an all of u.
Is really nice to see the map of Colombia here. thanks Sylvia for that, I will tell u a litle about the cities I live. I born in Bogota a capital of Colombia, is a 2.600 mts over the sea. Is a Cold city all the time. Before that I go to live in Cartagena since I was 1 year to 24 years old, Cartagena is a 0 mts over the sea, is a hot city all the time, I use to live in front of the beach. I will send u a picture of my house, ism a painting that my brother did. Cartagena is in the Caribe sea. Was a big important City when the Spanish Imperio, was so important that Admiral Vernon want to take Cartagena to the England empire. When I was 24 I came to Cali to study and stay here since then. Cali is 1.100 mts over the sea is a warm - hot city between two mountain ranges, the western and central. This city is in the valley of the Cauca River. These mountain ranges are the ramifications of the great mountain range of the Andes that crosses the south america.
So I say Im Colombiana because I live in the north, in the midle and in the South.
Im feeling better this days, I went to my oncologist, and I tell her that I feel really bad the third day before the chemo, and she send me to the psychologist. That was a nice and good experience I could speak, cry and express my feelings and fears about this treatment so aggressive is the FAC. I continue with my guitar lessons, the last saturday was my third class and today I have my second yoga class. As I am with the picc catheter in the left arm I have been afraid to do some exercises that make one lean on the arms. There will be some of you who have done yoga with the picc, as it was and how limiting was with the exercises. I really liked the part of the relaxation and meditation.
Next monday is my third FAC chemo. I hope everythings going good with me this time too.
I like sociologist I learn in a postgraduate study, I learned a lot about the "welfare state" that England implemented after the Second World War. And as in Latin America we tried to implement it without much success because of our difficulties with high levels of corruption and that began to be dismantled with the implementation of neoliberal policies from the 90s.
I hope everythings be good with all of u.
Marias
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Hi Sylvia, Mary and all,
I hope everyone's ok. This thread has become busy again with so many posts from oldies and newbies. I enjoy reading all of the posts but i don't think i can catch up quickly especially those with links but i will look at them a little later.
I had my 2nd taxotere two days ago. It was ok, no problem with the iv insertion and the procedure was done in 2 hours. Only one more chemo session to go.
Today is the 2nd day after chemo and again i am starting to feel fatigue, hip, joint and knee pain. I am on my home meds now which i should be able to complete in 5 days including the filgrastim shots which i started yesterday to stabilize my blood. My MO recommended only two shots of Filgrastim this time, and i'll be having my second shot this afternoon. I think it is good to have the Filgrastim shitd early to stabilize my blood immediately and help in preventing SEs like mouth sores, body pains, itchiness and infections. I am only taking one tablet of dexamethasone instead of the prescribed 2 tabs unless i feel more severe body pains. I am putting on hold my prescribed antibiotics until i feel any signs of infection.
Now for the next big question in my treatment. I was briefly told by my MO that i should take Tamoxifen 20 mg. once daily initially for 300 days starting one month after my last chemo session and she already gave me a prescription for it. She adds that it is suppose to be a 5-year maintenance and after evaluation, another 5 years for a total of 10 years! She said that i will need it to improve my survival rate and prevent breast cancer recurrence since my ER is 5% positive and my PR is 3% positive. Low weak positives but still they're positive according to her! However, she told me that there is also a moderate chance of developing Uterine cancer from taking Tamoxifen. So there's a dilemma!
I am thinking that ...
First, I am menopause for a little over a year now starting October last year and from what i read, Tamoxifen is best given to pre-menopausal women.
Second, what are the side effects of Tamoxifen? If not Tamoxifen, what other aromatase inhibitors are best used in my case? I've read that Arimidex is used for menopause women but i am not sure about this and i read that it has more serious SEs including baldness. What is Raloxifene? Anyone used this?
Third, Can total hysterectomy prevent uterine cancer and if it does, what are my chances of not developing cancer elsewhere in my body??? A bit of info, even before my breast cancer appeared, i already have a problem having a cervical myoma (5cm since my last dx in 2015, i think) when i was still pre-menopausal and going into menopause and after right breast cancer surgery in September 2016. I did not have my myoma removed because the doctor i consulted said my myoma will most likely disappear after i become menopausal.
So, with my specific case presented above, I would appreciate any suggestion, recommendation or references that any of you sisters could give especially those having been in a similar situation i am now in.
I know i will have quick answers in the many threads here on BCO, especially from the TN ladies here.
Thanks in advance.
Love you all,
Gina
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Hello Sylvia and Mary.
Im sorry Sylvia to read how many deads and cancer disease are in your family, and how since u was young u have to say good by to your dearest people.
And think a little about was going on with in the world I believe that more and more states are having less power, the power of the owners of large multinational companies, who are also the owners of the means that are promoting in ordinary citizens what they want. And what they want according to me is to make some territories or countries great welfare sites where they exclude the different and make other countries with less well-being, less political, social and economic balance where companies can be set up without any type of limitation For the exploitation of people, the environment, etc.
My best for u
Marias
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Hello Marias,
Many thanks for your interesting post. It is always a good idea to know a bit about the people who are posting.
I was interested to know that you were born in Bogotá, the capital of Colombia. I have been studying the map of your country and reading up a few details about it in an encyclopedia that I have at home. I was interested to know that you were born in Bogotá but went to live in Cartagena when you were one and stayed there until you were twenty-four. From the map Cartagena seems a very nice place in which to live. I would imagine it to be very popular with tourists.
Thank you for the picture of your house and I must say it looks absolutely lovely. I think your brother must be very talented. It must have been very pleasant living there on the beach and near the Caribbean sea.
I have located Cali on the map and can see that you are still not far from the sea, but this time you are near the Pacific Ocean. You said you went to Cali to study and have been living there ever since. Is there a university there and what did you study? If you can, send us some photographs of Cali so that we can see the mountain range.
I think it is good for all of us to learn about the rest of the world. Of course we learnt all about the Spanish and English carving up the Americas, but history lessons are always biased. It was wrong to be doing all this and destroying the rich cultures that already existed there.
I was glad to know that you are feeling better these days. I was glad to know, also, that you told your oncologist that you were feeling bad and that you managed to have some counselling in which you could have a cry and express your feelings and fears. It is good and therapeutic to do this, instead of keeping it all inside you.
It must be therapeutic to have guitar lessons and I am sure they will help you to relax. I keep reading how relaxing yoga is. I have never tried this, but some of the positions look difficult. There are women on the thread who practise yoga so I hope they will post and be able to help you about the pic line. Meditation is mentioned a lot as well and is said to be excellent for relaxation.
Thank you for letting us know about your next chemotherapy on Monday February 6th. Rhonda and Gina are also going through chemotherapy during February, so we shall all be thinking of you. Good luck for Monday.
Are you working during your chemotherapy treatment? Are you studying sociology at the moment in a post graduate course? If you are, tell us about it. I was interested to know that you are learning or have learned about the Welfare State that was implemented in the UK after the Second World War. I think that 1945 with the Labour government was one of our finest moments. It really tried to bring in a decent life for ordinary people. In 1948 the National Health Service was introduced and this meant that everybody could have health care free at the point of use. It was paid for out of taxation. It was introduced when the UK was a very different country, and I am glad that I grew up in that country and not the one we have now. The National Health Service is now trying to cope when it is underfunded and trying to cope with a population of 70 million and expensive drugs and equipment. I do not know if it will survive. That 1945 government was the best government we have ever had.
I do hope that in Latin America you will be able to obtain a decent health service. Corruption is immoral. The duty of all governments is to take care of its citizens from the cradle to the grave. This is not being done in the UK any more. We do not take care of our children and one in five of them lives in poverty. We have homeless people sleeping on the streets and our social care for the elderly is being destroyed.
I was born in London during the blitz and stayed there until I was twenty. I then went to the North of the UK to study at the university on a four year honours course in French. I then went to live in France and taught there as well as in Morocco. I came back to England in 1974, but went to live in Canada from 1976 to 1993. Since then I have lived in England in Essex until 2002 and since then in Exmouth in Devon.
Thank you for your second post. I do agree with what you say about the power of the owners of large multinational companies and how they bully the rest of us. They do what they want and could not care about the rest of us. If I understand what you are saying I think I agree with you and that the big multinationals are taking over national governments. I also think that the people are getting really fed up with it all.
That is about all for now. I need to take a break.
Fond thoughts.
Sylvia xxxx
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Hello Gina,
Thank you for your post. I need to take a break now but shall answer later on.
Thinking of you. Best wishes.
Sylvia xxxx
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Hi, Gina,
I know what you mean about getting behind on posts, and I am not having chemo at the moment, as you are! You are almost finished, that's great. It will be so good to get that behind you. I am a bit surprised the doc is suggesting 5-10 years of Tamoxifen or another one of its' kind. Didn't know, or forgot, that you had a ER 5% and PR 3%. I suppose your MO is trying to cover all the bases by offering this drug.
The most common side effects of tamoxifen are:
- increased tumor or bone pain
- hot flashes
- nausea
- fatigue
- mood swings
- depression
- headache
- hair thinning
- constipation
- dry skin
- loss of libido
I got this from this breastcancer.org website. I do know several women taking this drug, since all but one woman who have BC that I know have ER+ and I have not heard complaints from them. I have noticed a couple of them have the thinning hair. In answer to your first question, most of the women I know taking it are post-menopausal. But they may be taking one of Tamoxifen's cousins, Arimidex etc.
I would think total hysterectomy would prevent uterine cancer. If you go this route, I would advise removing the ovaries as well. And ask about the cervix. I still have PAP smears, I questioned that, because I assumed that when I had a hysterectomy years ago, my cervix went as well. But not so. I also have ovaries. So theoretically I can still get ovarian cancer or cervical cancer, I suppose. As for your question "Can I get cancer elsewhere in the body even if I have hysterectomy?" Unfortunately, yes. I was told early on that if cancer recurs in TNBC, it is likely to be found in brain or lungs.
Is the doctor suggesting only a 300-day course? That is less daunting than 10 years, not quite clear on what she has recommended for you. Raloxifene looks like it is a bone-strengthening drug for post-menopausal women. Do you have osteopenia or osteoporosis? Arimidex has similar possible side effects to Tamoxifen.
That is about all I can tell you about the matter. I suppose another option would be to get a second opinion from another doctor, on the necessity of taking these drugs. Let us know what course you take, and I hope you feel okay going into your last Taxotere treatment. We'll have to have a virtual party on your last chemo day!
Talk to you again soon, dear Gina,
Mary
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To all,
Today is my 3-year Cancerversary, 3 years since the MO called and announced my diagnosis.
Can't believe it's been that long, no wonder I look so much older!! LOL
Mary
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Hello Gina,
Thank you for your post. Just take your time reading the posts and catch up as and when you can. You are going through chemotherapy and you need to take great care of yourself. You can always come back to the links if you want to. At the moment you do not need to be overloaded with information. Concentrate on getting through your chemotherapy and then giving yourself plenty of time to recover.
I was wondering why you have not been offered radiotherapy. My oncologist told me it was the last part of the journey and was there to mop up any stray cancer cells. Most people that I know have had surgery, chemotherapy and radiotherapy.
I was very glad to know that everything went well with your second docetaxel (Taxotere) infusion and that there was no problem with the IV insertion. Well done and just one more session to go. I think you are handling all this in a sensible way and keeping dexamethasone and antibiotics to the minimum if you can.
Remember to keep drinking so as to remain well hydrated, keep resting as you need and keep strong and positive.
I was very surprised to read that your medical oncologist has told you that you should be taking tamoxifen 20 mg once a day for 300 days, starting one month after your last chemotherapy session and that she has already given you a prescription.
I am not a doctor, but if that were me I would be seeking a second opinion. My oncologist and breast cancer surgeon told me when I was diagnosed with triple negative breast cancer, that 5% was negligible. I was 0% oestrogen and 5% progesterone. Over the years I have seen this question about what these percentages mean asked quite a lot. I think you need to question this more. I know that in this country pre-menopausal women are put on tamoxifen for five years and then this was increased to ten years, but that was only for hormonal breast cancer, ie cancer with positive hormonal receptors. Tamoxifen is not a nice drug to take. I have also read that if you take tamoxifen long term you can end up with triple negative breast cancer. There was even mention in the past about trying to turn triple negative breast cancer into hormonal breast cancer in order to treat it with tamoxifen! If that were me I would be getting a lot more information and opinions.
My medical book states all kinds of side effects, such as nausea/vomiting, hot flushes/hair loss, irregular vaginal bleeding, irregular vagina discharge. These are quoted as the most common. Less common are bone and tumour pain, rash/itching, blurred/reduced vision, calf pain/swelling.
I have known friends and acquaintances taking tamoxifen and you are right, it is usually given to pre-menopausal women. However, some of the women I know took tamoxifen for a couple of years, even tough post-menopausal, and then were put on aromatase inhibitors for the rest of the time. These also have nasty side effects, including osteoporosis.
The aromatase inhibitors are anastrozole (brand name Arimidex). My information is that this drug can reduce production of oestradiol (natural oestrogen) in the body by more than 80%. It works by blocking oestradiol production in the peripheral tissues of the body than in the ovary itself, so it is not suitable for pre-menopausal women where the ovaries are still producing oestrogen. It is used to treat types of breast cancer in which the receptors are oestrogen positive. The quoted side effects are hot flushes, headaches/fatigue/dizziness, joint pain/stiffness, vaginal dryness, hair thinning, nausea/diarrhoea and rash. I would think that the other brand names would act in the same way. These drugs cause osteoporosis, so you would have to have a DEXA scan (a bone density scan) before you start to show the state of your bones and then you would need to have regular such scans to monitor the situation. I think Aromasin (exemestane) is another brand name for this type of drug.
I hope this helps. You have to remember we are not doctors and because we are triple negative on the thread, we are not taking any of these drugs. I do know people who have taken them and they have ended up with bone problems. This is something you need to discuss with medical experts and ascertain whether it is really necessary.
Remember, you have just been through the trauma of chemotherapy and your body does need to clear itself of all the toxins.
I have always said on the thread that I am positive about being triple negative because I have not been on any drugs since I finished standard treatment and I have done everything in my daily life to have a healthy lifestyle to allow my immune system to do its work.
You asked about raloxifene. This is the generic name for the brand name Evista and is related to clomifene and tamoxifen. It is prescribed to prevent vertebral fractures in post-menopausal women who are at increased risk of osteoporosis. My book says there is a risk of a thrombosis (blood clot) but the risk is similar to that due to HRT. Raloxifene has other side effects such as hot flushes, leg cramps, swollen ankles/feet. Flu like symptoms. There is also the possibility though not as common, as headache, rash, leg pain/tenderness/swelling, leg discolouration/ulceration.
I do not think tamoxifen belongs to the group of drugs known as aromatase inhibitors.
Your third question is again something you need to discuss with your doctors.
I hope this will give you food for thought, Gina, but remember on the thread we are not allowed to give advice. We can only give you information, talk about our own experiences with a particular issue or say what we would do in the same situation. Have a good think, get more medical opinions, but ultimately make your own decision.
Let us know if you need any more help.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am popping in to say congratulations on the third year anniversary of your cancer diagnosis. Can it really be three years since you joined the thread? How time flies!!
I am reading a book entitled The Cancer Whisperer, by Sophie Sabbage. Published 2015. I have not read many books on cancer lately.
I was in the bookshop in Exmouth looking for something to read in the paperback section, buy one get one half price. I bought the latest book by Julian Barnes, The Noise of Time, which os supposed to be a masterpiece (fiction). I then noticed the Cancer Whisperer and started to read it. It is easy to read and is very profound and inspiring, with the author writing about her own cancer journey. I have not got that far, but I know I shall read it to the end. It is about not letting cancer possess you among other things. It is about 200 pages long.
Talk to you again soon.
Love.
Sylvia xxxx
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Hello Sylvia, I send u a picture of the cordillera occidental. When I want to go to the sea here in Cali I have to across this cordillera to go to the sea.
This is in cordillera Occidental near Cali, is the view from my apartament, the name is "Pico de loro"
I want to share with u this movie.
Im sorry is not in english I hope u can enjoy the view.
Have a nice weekend.
Marias
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Hi, Marias,
What beautiful pictures, I love mountains! What a wonderful view to have from your apartment.
I'm glad you feel better after talking to the psychologist, sometimes it is so good to let it all out. You are certainly busy with lessons! I also play guitar, I have been doing it off and on for many years, but I am still not very good. I took lessons years ago. I think the good guitar players have the very "bendable" fingers, sorry, I don't know how else to describe it. My fingers seem too stiff, even with practice, but I enjoy plunking on my guitar and singing along.
I can't answer your yoga question, I had a port inserted under my skin right above my left breast. I know what the picc is, my husband had one for a while. It doesn't seem like it would bother it,to lean on an arm, but I don't know.
So you are interested in sociology too, and have studied the "Welfare State" in England. Sylvia knows a lot about that! I think the USA where I am is partly Welfare State and partly private enterprise. Basically the private enterprise pays for the Welfare State through taxation, it is necessary to a point, but I think it gets overdone. If businesses are taxed exorbitantly, they will move overseas to escape it, which is what has happened a lot here. So it is definitely not a perfect system.
I hope your next treatment goes very well!
Mary.
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Hi Mary and Sylvia,
Thank you for your prompt replies and answers to my questions. Both of you are so consistent and always ready with answers.I am frustrated with my deleted post again before this post so i am just sending you about what i researched on Tamoxifen and Raloxifene.Thanks again and Mary, congratulations on your 3rd Cancerversary!!!marias, thanks for your picture posts too.---Tamoxifen and Raloxifene for Breast Cancer Prevention
Tamoxifen and raloxifene have been shown to reduce the risk breast cancer, but they can have their own risks and side effects. Tamoxifen and raloxifene are the only drugs that are approved in the US to help lower the risk of breast cancer.
What kind of drugs are tamoxifen and raloxifene?
Both of these drugs are selective estrogen receptor modulators (or SERMs). This means that they act against (or block) estrogen (a female hormone) in some tissues of the body, but act like estrogen in others. Estrogen can fuel the growth of breast cancer cells. Both of these drugs block estrogen in breast cells, which is why they can be useful in lowering breast cancer risk.
These drugs are used more often for other things.
- Tamoxifen mainly is used to treat hormone receptor-positive breast cancer (breast cancer with cells that have estrogen and/or progesterone receptors on them).
- Raloxifene is used mostly to prevent and treat osteoporosis (very weak bones) in post-menopausal women.
Both drugs are pills taken once a day. Tamoxifen also comes in a liquid form. Tamoxifen can be used by women whether or not they have gone through menopause, but raloxifene is only approved to be used by post-menopausal women. To lower the risk of breast cancer, these drugs are taken for 5 years.
How much do these drugs lower the risk of breast cancer?
The effect of these drugs on breast cancer risk has varied in different studies. Tamoxifen has been shown to lower risk by 13% to 48%, while raloxifene has lowered risk by 18% to 58%. When the results of all the studies are taken together, the overall reduction in risk for these drugs was about 38% (more than a third). These drugs lower the risk of both invasive breast cancer and ductal carcinoma in situ.
What would this mean for me?
Although a medicine that cuts your risk by more than a third (or 38%) sounds like it must be a good thing, what it would really mean for you depends on how high your risk is in the first place (your baseline risk).
For example, if you had an 8% risk of getting breast cancer in the next 5 years, you would be considered to be at increased risk. An 8% risk would mean that over the next 5 years, 8 of 100 people with your risk would be expected to get breast cancer. A 38% relative risk reduction means that the risk would go from 8% to 5%. So now only 5 of the 100 people would get breast cancer over the next 5 years. So for you, a change in the relative risk of 38% actually means a 3% change in your absolute risk (from 8% to 5%).
Since the change in absolute risk depends on your baseline risk, you would benefit less if you had a lower baseline risk, and you would benefit more if your risk was higher. If you had a baseline risk of only 1.7% (which is what was needed to be in some of the studies of these drugs), the 38% change in relative risk would mean that your risk would go down to 1.05%. This means a 0.65% change in absolute risk.
Your doctor can estimate your breast cancer risk based on factors like your age, medical history, and family history. This can help you see how much benefit you might get from taking one of these drugs.
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Mary,
We are doing the Happy Dance on your 3rd Cancerversary!!! May Happiness, Peace and Love be with you always!
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hi everyone
First week done with no real bad side effects other than fatigue! My husband drove to the Clare Valley which is about an hour out of Adelaide and I met him there. It's been a really nice weekend! Aches and pains from taxol remain and peripheral neuropathy in fingers and feet still there. Not sure when that will stop! Just a quick question? What does everyone think of the uk risk recurrence calculator? My oncologist used the 1.2 model and I noticed there is a significant variation in the 2.0 model?
Cheers
Kath
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Good morning Sylvia, Mary, Marias
Thank you all for your kind words and deeds. I meant to post last night but I got caught up watching the film! All I can say is that Columbia is a beautiful country. Thank you Marias- you are a wonderful ambassador👍💕
Sylvia I am a research fellow in dementia when I'm in work. At the moment I hope to return to a project involving the recruitment of at-risk adult offspring into long term dementia prevention studies.
I'm afraid that my sons depression is not related. We think he's been taking drugs (legalised apparently). We worry more for his two little boys though as we can't change our son.
Later this morning we are taking our little grandsons to the motor home show in Glasgow. We're Allan sure to enjoy this .
Mary I'm to take gabapentin for neoropathy but I've also got a lot of arthralgia (generalised stiffness). My main problem is my decreasing mobility and increasing pain in my whole arms and shooting pains throughout my body - always worse through the night of course- doesn't bode well for good sleep.
But I have wonderful news too...
My daughter learned yesterday that she does not have the BRACA mutation. We thank God. I will let you know how our youngest son fares.
Take care all those going through chemo and other treatments just now.
Best wishes
Maggie
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