Calling all triple negative breast cancer patients in the UK
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Hello everyone,
My last post for 2018. Wishing every one of you, peace, health and happiness in 2019. Let's hope that this time next year we'll all be looking back with a smile, thinking that 2019 was a really good year. We deserve it!
Gill X
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I haven't eaten either frogs legs or snails for many years. I used to like frogs legs (they do indeed taste quite like chicken) but found that snails didn't taste of much at all.
I have downloaded Dr Michael Mosley's latest work The Fast 800. He has some very interesting things to say about Intermittent Fasting and Time Restricted Eating. He believes that they can help with many ills and prevent many ailments. He even suggests that people fast (that's eating no more than 800 calories a day) for a few days either side of chemotherapy. The theory is that the fasting stops your body cells from dividing, allowing the chemo to target the cancer cells which are still merrily dividing away.
Susie x
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Happy New Year, Everybody
What I like best about its being 2019 is that I can now say, 'Oh, yes, I had cancer but that was last year.'
Best wishes to everyone continuing treatment.
Susie XXX
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Hello Gill,
Thank you for your latest post and thank you for an earlier one in which you asked about languages, especially French. Raymond did French to O level at school and still remembers a lot of it. He knows enough to follow the programmes that we were watching on TV5monde. I help him along when needed. I did do Spanish as well at University as a second subject to my French Honours Degree, but the Spanish is rusty now as far as speaking goes. I can read Spanish and would love some serious magazines but cannot find any. It is strange because there are so many serious magazines in French that you are spoilt for choice.
I did not know that jellied eels were considered good for hangovers! The way everything goes today you never know when eels will suddenly be considered a superfood. I remember in Canada when oatbran was everywhere pushed as a superfood and since then over here we have had prunes, chickpeas, walnuts, goji berries, chia seeds and so on and so forth.
Thank you for your information about Ki67.
I think it is essential to be optimistic when we are diagnosed with breast cancer. No one can know for sure how it will progress. You are right to be optimistic. I think it is also essential to be able to relate to your appointed oncologist. If a patient cannot relate to their oncologist and there is any kind of friction, you should ask to change your oncologist. I had a very good one, but I still did my own thing, even if I knew it would not be 'approved'.
I am sure Raymond and I will get back into the routine of our duties here in our apartment complex in Exmouth. We have been here seventeen years on January 10th and have been elected directors in turn most of that time. We are very organised and that is important. We are also liked and that is important as well.
That is all for now. Sincere best wishes for 2019.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for your latest post and for your lovely New Year's card. I had to laugh about what you said about frogs.
I am so glad that you decided to join us and you always have something interesting to say.
Best wishes for a happy, healthy New Year.
Love.
Sylvia xxxx
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Hello Susie,
Raymond and I do follow Dr Michael Mosley's programmes on the television and we do find them very interesting. We have also read some of his books and they make sense.
I do believe that fasting and restricting eating can be useful. People tend to eat far too much today.
I am not sure whether I could have fasted before or after chemotherapy treatments. I did feel the need to have some breakfast before setting off for chemotherapy. In fact I was told to make sure that I did eat something, but who knows how it would have been on an empty stomach? I just kept to my normal eating patterns.
As far as the theory goes, I think you can only put it to the test by doing it. It would be interesting to hear from anyone that has done it.
I do hope you have a good year in 2019 and I am sure that your humour will get you through anything.
Did you happen to see the first episode of Les Miserables on Sunday on BBC1? I thought it was very well done.
I could not believe that on one of the channels they were showing War and Peace from 2 pm to about 7 pm. I did like watching it in episodes but I could not have watched it in one go. I do remember reading War and Peace many, many years ago at an age when I could read and read, but I do not think I could do it now.
Wishing you all the very best for 2019.
Love.
Sylvia xxxx
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Hello Sylvia,
'Fasting' means 800 calories a day so you can still have breakfast during chemotherapy.
I did watch Les Misérables, which seems promising. Dominic West has been hitting the gym! I have read War & Peace once, which I did by buying a £1 paperback copy and tearing it into 100-page segments to make it more manageable. Now I would read it on Kindle, which also makes very long books less daunting.
Took a long walk in Kew Gardens this morning. Very enjoyable.
Susie x
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Happy New Year Everyone,
I'm just popping in to wish you all the very best in 2019. I know there are a lot of new posters in this thread, and I haven't been on in quite a while. I just wanted to say that I am busy, happy, and well, and I will not see my oncologist again until late April. I'm doing what I can to keep as healthy as possible, and have lost 25 lbs since early 2018. I'm undergoing a lot of dental work, which is no fun at all, but then again, it isn't so bad, all things considered. I don't have much travel planned, but will hopefully have some small trips here in the US. I'll be cooking, taking down my tree, and going to a yoga class today. I had a great, peaceful holiday break, and I hope that you all did as well.
Cheers, Pam
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Hello Pam,
It was nice to see you popping in. I was glad to know that all is going well with you. Congratulations on your big weight loss.
I do not envy you all that dental work but a healthy mouth is very important. You probably remember all the discussions we had about having a healthy gut in the mouth and the book I mentioned The Dental Diet. I think a lot of chronic health problems may begin in the mouth with problems with the gums.
I was glad to see that you are keeping up all your interests.
Many of people that you knew when you were posting seem to have disappeared. We no longer hear from Marias or Hanieh and we do wonder what has happened to them as Colombia and Iran do have problems. Other posters such as adagio in Canada, and Monica in California, as well as Val in the US seem to have disappeared. Mary is still posting and we have Gill and Susie from the UK and viewfinder from the US who have been strong posters all through last year.
Keep well and keep happy and pop in when you can.
Best wishes and a healthy, happy New Year.
Love.
Sylvia xxxx
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Hello Sylvia,
Like you, I believe that it's very important to be optimistic, anxiety and stress do a great deal of harm to our health.
I wonder if you have read the research regarding the time between surgery and chemotherapy for TN breast cancer? The moderators have recently added it to the site. The report suggests that it is important that chemotherapy is begun within 30 days of surgery. Patients have very little say as to when their chemotherapy starts as there are waiting lists. Also, some patients take longer to heal after surgery and chemotherapy can't begin if there is any risk of infection. The report may well cause unnecessary distress to patients, both past and present.
Yes, it's difficult to imagine being successful in your role at the apartment complex if you weren't well liked. Michael has been Chair of the Parish Council for years and is generally popular, however, there are always one or two professional complainers.
It's been good to see past posters calling in on the thread. I came here after Pam and don't know her story, but it helps all of us to know that she's well and happy.
That's all for now.
Love,
Gill X
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Hello Gill,
This is just a quick post but I shall say more later.
I have seen all the fuss on another thread and I find it quite irritates me. What is going on here about percentages, probabilities and counting days. As you say, after surgery we all have to heal and we all heal differently, some without problems and others with problems. We should not have chemotherapy before we are properly healed and I would think the oncologist and breast cancer consultant surgeon would work this out. With statistics you can prove anything!
If you have a lumpectomy and then have to wait for a second lumpectomy to get clear margins, as the first lumpectomy did not get them, you will need to wait for this to heal before you start chemotherapy. You cannot start chemotherapy in the middle of waiting for the second lumpectomy. This is common sense.
There also seems to be a lot of talking going on about lumpectomy versus mastectomy. Each of these surgeries will have its own problems, for example I have read that with a lumpectomy you are more likely to get lymphoedema on the chest area and I think that could be more problematic than having it on the arm. Everything is a personal choice to be discussed with your medical team. I had to have a mastectomy because the tumour was large, but it is what I would have chosen anyway.
I shall write more later if I can find the time, but it is a pleasure to correspond with you and to share views.
Love.
Sylvia xxxx
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Hi all
Hope your Christmas and new year was amazing? It’s very hot here and we have been hitting temps of about 44 Celsius so the heat is incredible. Great to hear u ate all doing well and congrats on your anniversary Sylvia!
I’m back at work after the Christmas break and it’s start to get busy already which I quite like. It keeps my mind from going to that dark place. I see the oncologist on the 15 th and fear is setting in already. I keep try to think past the app as my daughter has her 3 rd child due on the 21st
I feel well but I still have severe neuropathy and cramping in my hands and feet all of the time and very tight achy joints in my back and shoulder every morning that settle when I’m up and moving. It is a strange sensation like something crawling under my skin.I’m sticking with the idea that it’s arthritis but it terrifies me some days!
Hope u all are going well and I’ll let u know what my 3 rd grandchild is. Fingers crossed it’s a girl!
Much love
Kath
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Hello Kath,
It was nice to see you back on the thread, because so many have been absent for sometime. I think you know the more recent posters, Gill, Susie and viewfinder. Pam did pop in to let us know all is well with her.
Thank you for your congratulations. I am now looking forward to reaching fourteen years on June 20th 2019.
Your heat sounds unbearable. This weather of extremes is very uncomfortable. We are always longing for the season ahead because we do not like the weather we are having! The last three months here in the UK have seemed long to me and I now find I want to push winter away and get to Spring!!
I am glad to know that you are busy at work and I shall always be interested in anything you have to say about it.
We shall all be thinking of you on January 15th when you see your oncologist. Remember what I have said in the past about these appointments being there to help you. I know that it is very difficult not to feel anxious and apprehensive.
Try to focus your mind on the birth of your daughter's third child due on January 21st. Be sure to bring the good news to us.
I was glad to know that you feel well and I can sympathise with the peripheral neuropathy problem. There is not much to be done about it. I find that my own neuropathy in the feet has seemed worse lately, so I try to bathe my feet in warm water with some salt and bicarbonate of soda from time to time. When I have dried them I give them a good layer of moisturiser.
It seems common for patients who have been through chemotherapy and radiotherapy to suffer from aches and pains in the joints and it seems that they improve with movement. Since I am for ever reading all kinds of information, I do remember reading somewhere that arthritis could be a problem after chemotherapy. We all know that cancer treatment has not done our bodies any good.
Try to keep in touch.
Happy, Healthy New Year.
Love.
Sylvia xxxx
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Hello Gill,
I have found a bit of time to complete my post to you.
I certainly agree with you that it is very important to remain optimistic about all that we have gone through and all that we are living with as a consequence of this.
Once again, about the cancer journey, I think a lot depends on the state of health we were in when we began treatment. How we cope will depend a lot on this. I was very lucky because I had not been ill throughout my life. If a patient starts breast cancer treatment with chronic illnesses like type 2 diabetes, autoimmune disease or perhaps hormone problems, then it might make the treatment that more difficult. If you have a weight problem you need to lose weight. If you smoke you would be wise to stop. If you drink alcohol you might be wise to stop or cut down. These are things that we can do to help ourselves.
I was interested to know that Michael had been Chair of the Parish Council for years and that shows dedication. As you say, there are always the 'professional' complainers, or as I call them the moaning minnies, but somehow we cope. I have a younger brother here who has been very active in the local Labour Party for about 46 years, and has been a school governor for years. He invented a word that I quite like: TWHATAADSAs (Those Who Have All The Answers And Do S** All).
I was looking at a chart with a diagram about the causes of cancer in my BMA book and although I am not fond of percentages, I did see that diet is down as 35%, tobacco as 30%. This is a huge chunk. The others have alcohol 3%, sunlight 10%, viruses 7%, occupational factors 4%, radiation 1%. Others 10%. I am very interested in 'others' because I think there may be quite a few things here. I think i would include stress, environment, the birth control pill, HRT, poor sleep and who knows what else, such as unhealthy bacteria in the gut and even, perhaps, gum problems.
I agree that it is good to see past posters coming in to say hello. I do understand those who want to move on, but we do need patients to stay the course to help others.
That is about all for now.
Love.
Sylvia xxxx
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My fingernails are finally growing satisfactorily, some four months after my last chemotherapy infusion. I'm not sure that the nail hardener was much help in the end. Just time and patience. I shall treat myself to a manicure next time I'm in need of a treat.
Susie
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Hi, Sylvia
Lots has been discussed while I've been gone, from frog legs to tumor markers! I must say I like frog legs very much, when I was growing up we would find them in ponds and streams, kill them and clean them and take them home for supper. There were never enough to please all of us! Now I have a hard time killing anything, except some pesky bugs. But I still like frog legs. I don't think I care if I ever try jellied eels!!
I also was not given any info about K167 or any tumor markers. Things have progressed in just that short time since I was diagnosed, I do know the docs are trying to get to more individualized treatments. I did ask my doc why I wasn't given a tumor marker reading and reports on them, she said that in her opinion they were not useful in Breast Cancer.
I went to the City Sunday with a small group of friends, we went to a beautiful old theatre and saw "Anastasia." I am not a huge fan of musicals, but was interested to see how they tied in the execution of the last Tsar's family with music and dancing, and now I know. I always admire the talent and production quality of these shows and performers. We all had a meal together, and spent the night. We also stayed the next night for New Year's Eve and watched it come in, I stayed up much too late. I, for one, am glad the "holidays" are over, and am ready for routine for a little while.
I see you have been getting some PMs about patients who are given lots of info about markers, genetic info and then making them quite worried about percentages of recurrence and prognosis. I also looked at the page on this site about TNBC, that was recently enhanced. I didn't really see anything new there. I think that lifestyle can play a big part in TNBC, but also negative stress. I have read in a couple of places where authors/docs think there is a "Cancer personality" type. Someone who puts their own desires in second place, who lives for others, and tries to please over and above their own wishes and energies. And the worst kind of negative stress is the situation from which there seems to be no escape, or no possibility of a good result. I saw part of a TV show last night about a family who were all morbidly obese, one of these ladies had endometrial cancer but could not have have cancer surgery until she lost weight, and she had to do bariatric surgery to help her lose the weight before she could have cancer surgery! She weighed 600+ pounds. Obesity is another cause of cancers of all types.
I agree with you that the treatment for cancer can cause problems with other parts of one's body. In my case, it seemed to exacerbate problems I already had, and cause a few new ones. But I am in my sixties, if I complain, people say "oh, but you are getting older." I don't know any more what's causing what, so I just try to get on with things to the best of my abilities.
Even though I like to read, and I like long, involved books, I have never finished War and Peace.
I am glad to see Pam pop in, she sounds like she is in fine shape and enjoying life, except for the dental work!!
Happy New Year, Sylvia and best wishes to Raymond too. I'm sure your fellow residents do like you both, how could they not?
Talk to you again soon, love,
Mary
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Hi, Gill
I also looked at the article on how much time should pass between diagnosis and chemo, and preferably the time is short. That's difficult, because some people have chemo right away, followed by mastectomy. In my case, I had surgery first, not sure why. I think chemo started soon after, healing from mastectomy didn't seem to take long. But I agree with you, doctors make the decisions, and we go along with it for the most part. When we are first diagnosed, most of us don't know enough to question everything, or make demands.
I hope you and Michael have a wonderful New Year, with no jellied eels anywhere in sight!!
Talk to you soon, love,
Mary
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Hello Mary,
It was so nice to have you back on the thread.
With reference to breast cancer I agree with everything you said. I do not think we need to know everything when we are being treated. When we have finished treatment we need to live each day as it comes and make it as enjoyable as possible. Today cancer has been on the news again. This is all about detecting it early through breathalyser tests. It all seems new but I think I have heard it before. I remember reading about how they think dogs can somehow sense it with their keen sense of smell.
I was glad to know you enjoyed your outing to the theatre.
I definitely agree with you about negative stress.
I also agree that we all end up with different problems from our breast cancer treatment but it is better putting up with these than the alternative.
When you say you went to the City, which city do you mean?
It has gone really cold here and the temperature is about 0. On the newspapers I saw that it might go to -10. I hope it does not snow because the authorities can nave cope with it, everything comes to a standstill and the snow is always blamed. It is never the 'right' snow!
Do you have any wishes or expectations for 2019? I just want Brexit to be done and dusted now, whatever happens! Do you think the Democrats in the House of Representatives will try to do something for their country, or will they spend their time trying to impeach Donald Trump?
Wishing you all the very best for 2019 and thanking you for all your support on the thread.
Love.
Sylvia xxxx
To end the saga about jellied eels, I thought I would just post this.
Do you know about the English dish Pie and Mash? I think the special thing about this is that the gravy that goes with it is known as liquor and is green, probably parsley. I dread to think what is in the pies!!
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Hello everyone,
I hope you have all enjoyed the festive season and are gradually getting back to normal. I do not think it will be quite normal here until Monday when the schools should be going back and those who have had a two week break will be back at work.
I was surprised today and yesterday in this cold weather to see people sitting outside cafes on the Exmouth seafront and also walking along the seafront, wrapped up, but ice cream cones in one hand and cans of cold drink in the other, only the English!
Best wishes to you all.
Sylvia xxxx
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I'd pass on the jellied eels and English dish Pie and Mash. I'm too squeamish.
Peace to you, Sylvia, and all others.
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Hi, Viewfinder
I'm with you, I'd rather have fried chicken with my mashed potatoes, maybe! Didn't like the looks of that pie in green sauce either.
Hope all is well with you and you have a very good New Year!
Talk soon, love, Mary
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My sister is having her second surgery January 8th at 5:30 p.m. Seattle time.
Her daughter wants to give her something called Acutonics during Chemotherapy (the use of tuning forks). I've never heard of it but understand it's like acupuncture without needles.
I asked about Acutonics in the Alternative Medicine Forum and was told she shouldn't have it done unless it's okayed by her oncologist.
Her chemo starts third week in January, not sure of the date but, as I've mentioned, my daughter is flying to Seattle to help her on Jan. 23.
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Hello Sylvia,
The saga of the jellied eels might have ended, but the pie and mash debate has probably just begun! We have an Australian pie and mash shop in Norwich, trade is brisk. Like you, I don't care to dwell on what's actually in the pies.
The BMA's list of the causes of cancer was interesting. Why on earth do people continue to smoke when it's so dangerous? Not just carcinogenic, but causes heart disease, stroke..... the list is endless. I've always been suspicious of x-rays, but the risk appears to be relatively low. We were given far too many as children. I've never taken the contraceptive pill or HRT. I had breast cysts for years prior to the menopause, also the occasional benign lump. Interestingly, years ago, I was told by a consultant breast surgeon and a more junior doctor that I should never consider taking HRT. When I was diagnosed with breast cancer in August I was asked if I'd ever had HRT. My Oncologist asked me again at our first meeting. I've always felt that hormones were not to be messed with. I dread to think about the levels of hormones that used to be in our meat and dairy.
I've always been fairly healthy, although I do have hypertension, but this is very well controlled, and I've inherited high cholesterol, but again this is controlled. Fit and not overweight either. More recent research on metaplastic cancer focuses on damage to an immature stem stell. I'll have to do some digging to discover how stem cells might be damaged.
Michael laughed at your brother's invented word. He hit the nail right on the head. Why on earth do those who do the least complain the loudest?
Try to keep warm in this cold weather.
Love,
Gill X
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Hi Mary,
I can safely say that no jellied eels will ever enter under my roof.
I don't like the way these cancer scare stories are thrust under our noses. The research is often inadequate. We can't control when chemotherapy is given unless we pay for private treatment and not many of us can afford that.
When I was first diagnosed I had no idea there were so many different types of breast cancer and subtypes within these types. I woke up and did the research, but very carefully. As Sylvia said, 'you can do anything with statistics'. Best to keep positive and just take each day at a time. The majority of us will get through this, a little battle worn, a little wiser, but ready to get on with life.
You have yourself a wonderful New Year too Mary!
Love,
Gill X
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Hi Susie,
Maybe the nail hardener helped a little, worth a try anyway. How is the hair coming along? Strangely, mine has begun to grow again, I've gone from completely bald to looking as though my head has just been shaved. My eyebrows have almost disappeared and there's no sign of any regrowth.
Gill X
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Hello Viewfinder,
It looks as though things are moving quickly for your sister now. Good luck for the 8th, that will be one more thing to put behind you (all of you) and then very swiftly on to the chemotherapy. Keep letting us all know what's happening.
Gill X
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Hi Gill,
Hair coming in quite nicely now but, like you, no sign of eyebrows. I think in another month I may have enough hair to be able to go about bare-headed if it's warm enough. Eyelashes are growing back slowly and will, I trust, be full grown by the enxt hay-fever season!
Susie xx
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Hi, Sylvia
It's nice to be back, as I said, ready for a little routine. However, I don't think that's to last very long. Next week sis-in-law and I are going to St. Thomas USVI for a week to get some sunshine. Yesterday I got in my older car and went down the road a little ways, there was a loud bang, then backfires and white smoke pouring out the tailpipe. Back home, got in my other car and proceeded to where I was going. So today I will have to deal with errant car. In the meantime, I need to get to the nearest city and buy some fittings for the bathroom being put in at the farm. Spent 1 1/2 hour there yesterday talking with carpenter about window trim, baseboards, stain versus paint, paneling versus wallboard, light fixtures pointing up or down, and so forth. I am so glad this is only 2 rooms, a whole house would drive me crazier. So I never made it to town to get the things, will try again today if all works out well.
I have heard of cancer-sniffing dogs, I have not heard of it in relation to breast cancer. I know a man who had a diabetes sniffing-dog. When his blood sugar is high, the dog can smell it and alerts him. Sadly, this dog became very old and became a pet only, and has since recently passed away. But yes, dogs are awesome, they have such great senses. If I wasn't liking to pick up and travel when I please, I would definitely have a dog, or two.
I am trying to train myself to remove myself from the negative stress when I feel myself sinking into it, deep breathing is good, and just realizing that all these things, no matter how bothersome, are really not that important and can be handled. My sis-in-law is great to be around for this, she is very positive and really doesn't sink into worrying.
When we went to the City to the theater, we went to St. Louis, Missouri. It is about 2 hours from me, and is the nearest large city. Not large by London standards, London being 8 million+ and St. Louis 300,000+. But it is large enough for us country mice, the town I go to the most to shop etc. is about 43,000. It is about a half-hour away.
I see you are getting cold weather, we have just the opposite right now. It was cold earlier in the week, now it is warmish, today in the 50sF, 13C to you. We are accustomed to colder, snowier winters so we have lots of stockpiles of stuff to put on roads, and trucks to push the snow around but they have not been used much this year so far.
I have no faith that the Democrats in the House of Representatives will do anything for the country. I think they will spend their time undermining the President and any policies he champions, trying to find any dirt that they can, and trying to impeach him. When you consider that this stupid Russia investigation has been going on for years and has dug up nothing of importance on him, does anyone ask how many millions of dollars has been spent on this? Lives have been ruined, people, some decorated military men, are sitting in prison for talking to a Russian at some time. Donald Trump has lived a public life for most of his life, his multiple marriages are common knowledge, I would say that by now there is not much left to find out. But the investigation continues as far as I know. I have stopped listening for the most part, it is just sickening what our tax dollars are spent on.
My wishes for the new year are rather general, I wish for good health for me and family and friends, and that all of us here can come through our travails and enjoy our lives again. Peace on Earth would be nice, but it seems difficult for neighbors down the road to get along so that is going to need some more time, I think. It's hard to beat the serenity prayer, I think.
God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
On that note, I am off to start dealing with smoking car, ugh. I shall talk to you again soon.
Love, Mary
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Hey Susie
Happy New Year! My hair came back and looks like before, but eyebrows are sparse. Eyelashes are probably as they were, nothing to write home about. Leg hair still grows, but underarm hair nonexistent. Nose hair is back!!
I do miss my eyebrows, but no underarm hair is great!
You can have my helping of jellied eels too!
Love, Mary
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