Calling all triple negative breast cancer patients in the UK
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Hi ,
I have been away and not posting for many reasons,
the saddest one being that Kerry had a miscarriage on our joint 40/60 birthday. She was 11/12 weeks. She is devastated as you can understand and is at the stage of asking why and unfortunately there are no answers.
I have been in England at my sisters and in Chester for a weekend. It wasn't the celebration it was meant to be but quite honestly it was good to be away and with my sisters and have them to talk to. I was going to cancel but didnt.
I am still waiting for another appt for a diagnostic injection from the pain clinic with hopefully this time a follow up treatment.
I have had a liver scan too which was clear for cancer. I have to talk to my GP about what medication I am on as my liver enzymes are raised.
Unfortunately I missed our first women's group on Thursday as I had an appt with Occupational Health. They have retired me on ill health. A bit unexpected but realistically I couldn't go back to my job and they weren't prepared to offer me anything else.
I am looking forward to the conference and I hope that the link will work to the programme. It looks interesting.
Next Sunday we are going to a holistic centre to a day of meditation and tai chi, co run by James our tai chi teacher.
I think that I will benefit from it as I haven't been able to meditate with all the things going on.
I was 3yrs diagnosed on my birthday 10 June but sadly that milestone is super-ceded by Kerry's loss.
I will be thinking of everyone and will try to gather any new info.
Great to hear from Mum to Be. Hope that your having a wonderful time in France.W e are thinking of going there in September but not sure where to go. Any suggestions would be welcome.
Have a good weekend.
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Hello Mumtobe and linali,
It is so good to hear from both of you. I shall post more later during the weekend.
Thinking of you both.
Sylvia xxxx
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Hello Mumtobe (Carol),
Thank you for your post. It was nice to hear from you. I can understand that you have been taking a rest from the boards. I do understand that posting can take up a lot of time and that people have busy lives. I find that keeping the thread meaningful and active takes up a lot of my time and I find it is really only of use if the thread is interactive and there are people who need comfort, support and information. If not, it all becomes meaningless.
I was really glad to know that all is well with you and that your life has got back to normal and that you are now back at work. I can imagine just how busy you must be with work, looking after Emma, keeping the home going and having some time to yourself. I was so glad to know that Emma is well and it is hard to realise that she is now eight months old.
Congratulations on reaching that very important first year anniversary on June 21st. As you know, I marked eight years on June 20th, so June will always stand out for the two of us.
I was glad to know that you are on holiday in France. I can imagine that you needed a holiday after all you have been through. I am glad that you are enjoying yourself and having some treats. Life has to be as normal and enjoyable as possible and we cannot be too strict. Where exactly are you in France?
Keep well and take care. Pop in when you can.
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
Thank you for your posts. I shall try to look at the link later on.
I can understand why you have not been posting and that family has to come first.
I was very sorry to hear that Kerry had had a miscarriage, especially on your joint 40/60 birthdays. I can understand that she is devastated and that she will need a lot of TLC to get over this.
I was interested to know that you had been back in England to see your sisters. I am sure that must have been of some comfort to you, even though it was not the celebration it was meant to be. I think you were right not to cancel. Congratulations on your sixtieth birthday anyway.
I do hope you will not have to wait long for another appointment for a diagnostic injection from the pain clinic and that you will get some treatment. I do hope you will get the problem with raised liver enzymes sorted out.
How do you feel about having been retired on the grounds of ill health? In a way it must be a relief if you could not go back to your old job and they would not offer you anything else.
I do hope all goes well at the conference and that you find it useful.
I did remember that your birthday was June 10th and that you were diagnosed on that day three years ago. Congratulations on having passed the third anniversary of your diagnosis. These anniversaries are important for us all and give hope and motivation to the newly diagnosed and those going through treatment. Mumtobe, you and I were all diagnosed in June.
Try to pop in when you can and post any information that you have. Let us know where you go in France.
Keep well and take care.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I saw this article in the Daily Mail this past week. It is entitled Discovered, secret of how cancer spreads by Lucy Osborne.
The article starts off by saying 'Scientists believe they may have worked out why cancer spreads, which could be vital in developing a cure and saving millions of lives'.
They say this is a major breakthrough that could make cancer become a non-fatal disease.
Apparently, the study has identified a mechanism known as the 'chase and run' effect. Diseased cells follow healthy cells around the body which allows metastases (spread) to different organs of the body. There are a lot more details in this article, so please have a look.
There seems to be a lot of posts on other threads about not being completely triple negative and having some positive percentages in the equation, even if these percentages are low. When I was diagnosed I was 5% positive for progesterone, but negative for oestrogen and HER2. My consultant told me that 5% was negligible and counted as negative. It seems that there are women who have some ER+ are being prescribed Tamoxifen and they are asking questions. My common sense tells me that this is something to be sorted out with their medical teams. If they are positive enough to have to take Tamoxifen or aromatase inhibitors, then I cannot see how they are TNBC.
There are also questions about dry or sore mouths. We all know this can be one of the side effects of chemotherapy drugs. Biotene products do help but if the problem is serious I would again think that patients should consult their oncologists for advice.
Wishing everyone a good weekend.
Best wishes.
Sylvia
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Hello everyone again'
I am also concerned when I read posts on the forum that some people seem to want to take medication such as Metformin. Remember all medication has side effects. I have now gone past eight years since diagnosis and I am happy not to be taking anything except vitamins and minerals for osteoporosis.I do not take low dose aspirin or bicarbonate of soda etc. I eat a healthy simple diet, keep active mentally and physically, and keep tnbc at the back of my mind. Since diagnosis I drink decaffeinated green tea every day and eat bitter apricot kernels regularly.
Wishing you all well,
Sylvia.
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Hello everyone
I saw this on the TNC thread and thought you might like to read it. Do not hold your breath for a miracle cure any time soon!
Best wishes.
Sylvia
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Hello everyone
I am posting to say that I hope you all have had a good start to the week.
I am sending special thoughts to our dear friends Carolben and Michael, who are going through treatment and having a tough time.
On the 8am news on BBC Radio 4 this morning and on AM afterwards, the drug Tamoxifen was much in the news. NICE is going to allow Raloxifene in England and Wales and in Scotland they will have Tamoxifen, to be prescribed to prevent breast cancer in certain women who are at high risk and who have the BRCA1/BRCA2 gene. They are going to use this as an alternative to women who are at risk but cannot for whatever reason contemplate bilateral mastectomies. There are potentially, I think they said, half a million women who could benefit.
Of course, Tamoxifen is not without risks, including blood clots. The other associated drugs, Raloxifene (brand name Evista) and clomifene will not be without risks.
Apparently those with these faulty genes have an 80% chance of developing breast cancer and a 60% chance of developing ovarian cancer.
We still have to remember that it is a small minority of women with these faulty genes, only about 2%.
I still think there should be more emphasis on the other 98%.
What I cannot quite work out is how these anti-oestrogen drugs as a preventive will be of use to those that develop TNBC. How do they know what kind of breast cancer will develop?
Also, I was told, that if you have the faulty genes you are more likely to develop breast cancer at a much younger age than the norm and it is also said that younger women are more likely to develop TNBC.
Any comments? People, I would have thought, must have some kind of opinion.
Wishing everyone well.
Sylvia.
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Hello everyone
I have just been looking up about Tamoxifen. It looks as though, in younger women who are pre-menopausal, Tamoxifen can lead to osteoporosis, while in post-menopausal women the opposite may be true. Have a look at the following link.
https://en.wikipedia.org/wiki/Tamoxifen#Bone
Let me know what you think.
Best wishes.
Sylvia.
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Hi Sylvia,
I also heard on the news about Tamoxifen being a preventative and did wonder how that related to TNBC. I also thought I had read somewhere that patients on Tamoxifen has had cancer come back as TNBC. I guess it all comes down to individual patients, it will work for some but for others what ever they do cancer will find a way.
I would expect TNBC to go up as a percentage in the next 20 years if Tamoxifen is given out to most women.
Another thought, you wrote about people not being completely triple negative and having some positive percentages in the equation. Does this mean people that are positive are not 100% positive? If that is the case the Tamoxifen will prevent the positive cancer cells but not the 5 or 10% negative ones?
Had a great time at Butlins last week. Liz's friend had a CT scan on Monday but now have to wait 2 weeks for the results.
Lovely weather here this week summer has finally arrived
Peter
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Going to see my MO tomorrow for a follow up appointment. I will be most curious to hear what she has to say regarding tests etc. Personally I am quite happy not to have further tests done since I do find them anxiety producing. I feel good and have a lot of energy but I know that in itself is no indicator of how this disease progresses or presents itself. Will let you know what my MO says!!
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Hello peterandliz,
As always it was nice to hear from you. I was glad to know that you and Liz had enjoyed your stay in Butlins. I feel that it is so important to live life as normally and as happily as possible. We have to live the day and not worry too much about tomorrow. I find that on some of the other threads women are letting breast cancer take over their lives.
I can understand that when you are diagnosed and going through treatment you will have breast cancer on your mind most of the time, but when you have finished treatment and all is well, it is very important to put it at the back of your mind and get on with your life as you adapt to regular check ups every three months and then every six months, and then every year. You have to live normally and just eat as healthily as you can without becoming obsessed. The same goes for being active. You do not have to go overboard and over exercise. Simple walking is good enough. Quick and easy cooking is all you need.
I was interested to know that you had also heard on our news about Tamoxifen and how they want to use it as a preventative. It looks as though we both had the same thoughts and wondered how this related to TNBC, because they cannot know what status of receptors women are going to develop. I think I heard that in the trials they had about 50-50 response and I also wondered what that meant. If they used younger women in the trials and since we are told that younger women are more likely to have TNBC status, then there are more likely to be more failures.
Tamoxifen has been around quite a long time and when it was first introduced I was told that it was given to all women diagnosed with breast cancer. I do not know whether receptor status was looked at back then. Some women would have responded and others not, so we might assume that those who did not respond might have been what we now know to be TNBC, but there might have been other reasons for failures to respond. I know a neighbour whose sister was diagnosed with breast cancer and I imagine was hormonal but did not respond and was referred to as a Tamoxifen failure.
You are quite right in what you said about some women on Tamoxifen long term for positive receptor status breast cancer status end up developing TNBC. I have read this as well and thought at the time that perhaps the Tamoxifen got rid of too much oestrogen in the body, but I am not a doctor. I also have read about doctors thinking about manipulating TNBC to turn it into positive receptor status so that they could treat it with Tamoxifen! I think this is unacceptable.
I tend to think that when the medical establishment finds a cheap drug they search all ways to use it as much as possible. The way things are going, whole populations, healthy as well as sick people, will be on some kind of medication. Imagine the big profits in that. Statins are a case in point. There was even talk of giving them to children. Metformin, another cheap drug, seems to be something else that could be going the same way.
I know that I shall avoid all medication unless it is a matter of life or death and then it will be a question of quality of life.
I think you are probably right about the percentage of women with TNBC going up as a percentage in the next twenty years if Tamoxifen is given out to most women. On the news it was said it would be used for women at high risk because of BRCA1 or BRCA2, but I think it will then be pushed on other women. Younger and younger women are getting cancer anyway and I think with the breast cancer this might be due to taking birth control pills at a younger and younger age.
I was very interested in what you said about whether people that have positive receptors are 100% positive. I have not read about this, but they are probably not and it is individual oncologists who are deciding which percentage of a hormone makes you negative or positive. My medical team told me that 5% progesterone was negligible and therefore counted as negative. On the threads there are often discussions about these percentages and how people diagnosed as TNBC are being told by their oncologists that they should take Tamoxifen. We live in a very inexact world!
I have just bought the latest edition (July) of 'What Doctors Don't Tell You' and there is an article about Angelina Jolie, BRCA genes and double mastectomies. I shall post about it when I have read it in more detail.
Thinking of you and Liz and hoping that all will go well for your friend.
The weather is very mild here in Exmouth and dry. We have gone from one extreme to the other and now desperately need rain.
Sylvia.
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Hello adagio,
It was nice to hear from you. I do hope all will go well with your appointment today and I shall be most interested to know what your oncologist has to say about follow up tests. I had a CAT scan and a bone nucleide scan before my treatment in 2005 and the same two scans at the end of treatment in 2006. I have not had any scans since and I would not particularly want them because of exposure to radiation and also, because, as you say, they just cause anxiety.
I am so glad to know that feel good and have a lot of energy. That can only be good, but do not overdo things. It takes a long time for your body to recover from this lethal treatment. be sure to post and let us know what your MO says.
I have just finished my first bottle of Doctors Best Strontium Bone Maker Bone Health Maintenance and wanted to order some more online. The two suppliers here in England do not have it at present so it is coming from British Columbia, Canada. It looks as though it may take quite a while.
I recently wrote to my GP about what I was doing to cope with my osteoporosis and asking if I could get a CTX test to see what is happening with my bones. I found out about this test through the book 'Your Bones' and it indicates that the most reliable test is a bone breakdown test known as CTX which is done through a serum blood test and that improvements may be seen after two or three months. I am waiting for a reply.
I also wrote to my oncologist asking about future mammogram tests. I was told that I do not have to have any more because of my age, but I can continue to have three-yearly ones if I want. I shall probably have one in October 2014 and then I might not bother any more.
Are you doing anything about your osteoporosis?
Thinking of you and wishing you well. Have a Happy Canada Day. I shall think of you on July 1st.
Sylvia xxxx
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Hello Everyone,
I have been having a quiet, catching up day today and have been reading through the health sections of some of Tuesday's newspapers. I am sure that those of you who live in the UK would have seen the headlines on the front page of the Daily Express about Tamoxifen that has been much in the news this week. I picked up on the fact that it costs just 7p a day.
In the Daily Mail in the Good Health section there was a very interesting article with individual cases with chances of getting brest cancer. I shall post more later.
Sylvia.
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Here are the links to the two articles mentioned in my previous post.
I shall post more later.
Sylvia
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Good evening Sylvia
I have just been catching up with the thread. I will get stuck into some of the links you posted.
I am back interviewing but am having serious doubts about carrying on with the work. I was at a meeting with other interviewers yesterday and we were discussing how things have changed. When I started seven years ago people could be persuaded to give you 20-25 minutes of their time, now though 10 minutes is too long. I think I can do without the hassle.
I had treatment 6 last Monday and I am being booked in for a PET scan. I haven't had one of those before.
I haven't added anything to the JCF website so far this week, all the news has been a recycle of older news or about animal and phase one and two trials which are of little practical use to current patients.
Best wishes to everyone
Michael
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Hi Sylvia,
My visit with the oncologist went well - she checked the lymph nodes and both breasts. She said all looks and feels good. She wants me to return in 3 months - she suggested a mammogram in the fall which will be 1 year after my surgery. I am fine with that. I had the bone scan and chest xray done prior to surgery but no pet scans or anything else for now unless I have some kind of pain that does not go away or if I get pimple-like bumps over the incision line. I didn't know there was a cutoff for mammograms in terms of age! If you don't mind me asking - what is the age cutoff for mammograms in England?
As far as my osteoporosis goes - I continue with the calcium, vit K2, 5000 units of Vit D and lots of walking. I do the usual nutritional green leafy veggies etc. I have decided that I am not going to let osteoporosis consume me. Working on balance is a major focus so that I avoid falls. All the tests that my GP ordered for me came back normal so I see that as a good sign. My blood calcium is within normal range.
I am now a free woman until early October, so I am planning on enjoying the summer here in Vancouver, then in September I am going to South Africa and the UK. I will continue to check in with the forum because I enjoy doing that and hearing how people are doing.
Thanks for all your responses and informative posts. Enjoy the summer in England.
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Hi Everyone,
I wanted to update you on myD3. Last August it was reported to be at 12. I have been taking 5,000 i.u. a day faithfully, in liquid form and I got the test done yesterday. I'm only up to a 45.1. I've read 66+ is best for us TNBC gals.
I'm looking for brand names and i.u. amounts and results if you have some good nuumbers to show in this area. I need to get it up higher! Do you all also recommend a Vitamin D supplement in addition to D3? I know D is in multivitamins too, so even if someone has a D3 with lower dosage, it's possible they get more from a variety of pills. But so far, the D3 is all I take, in addition to Baby Aspirin and Hot Green Tea.
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Hello Michael,
Thank you for your post.
I can understand that you feel disenchanted with your interviewing and that you are finding it a hassle. I would not blame you for giving up the work if it has lost its meaning for you. It is such a pity that we live in a society where people are too busy to think and reflect. What would you do, instead, if anything?
How are you feeling after your treatment last Monday? I have noticed there seems to be a lot of mention and use of PET scans lately and I am wondering why. Before, it seemed to be CAT scans, MRI scans and bone nucleide scans. Now it seems to be PET scans. Have you any idea why you are having one? Do you think a PET scan may be less harmful than the other scans? Please let us know how you get on. Have you had a look at Wikipedia? It has a good explanation. It looks as though it is an additional thing that is being used alongside CT scans and MRI scans.
https://en.wikipedia.org/wiki/Positron_emission_tomography
I can understand why you have not added anything to the Janette Collins Foundation website this week, as there is very little that is new. Everything seems to be in a repetitive state. I have read there is supposed to be a move away from chemotherapy and radiotherapy to PARP inhibitors for the treatment of breast cancer, but I need to do some more checking, as I thought in the past it was stated that PARP inhibitors had been disappointing.
It looks as though the weather will be nice in Exmouth for the beach worshippers, but for gardeners there is a dire need for rain.
Wishing you well.
Sylvia.
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Hello adagio,
Thank you for your post. I am sure that I speak for everyone when I say that I am glad to know that all went well when you went to see your oncologist. It looks as though you are starting on your routine of three-monthly visits which seems to be fairly standard after finishing treatment.
It is good news that you do not have to have scans because of the radiation. Let your immune system do its work.
My oncologist also said that the first sign of any problems such as recurrence would be indicated by a pimple-like rash along the line of the mastectomy scar.
There is not really a cut off point for mammograms in this country and I think I may have got a bit muddled. In England the NHS has mobile units that set up for long periods of time in different locations and women, originally 50 and up received letters in the post inviting them for a mammogram. I believe that age now starts at 47. It looks as though there is now no upper limit if you wish to have a mammogram. I have not been involved in this because I have my mammogram at the hospital and will continue to do so.
You are right not to let osteoporosis consume you but you do need to keep an eye on it as it can become a very painful and debilitating disease. I am doing much the same as you are and am taking supplements on a regular basis. I am taking 500mg of calcium citrate in my Solgar Bone Support supplement. This is in the form of two 250mg supplements, and I am taking 50ug, or 2,000 IU, in my Solgar Vitamin D3 soft gel capsules, as well as 12.5ug, or 500 IU, in my Solgar Bone Support supplement in the form of two tablets. As for vitamin K, I am taking 32ug in the Solgar Bone Support in the form of two tablets, as well as a separate vitamin K supplement of 50ug. In the Solgar Bone Support there are various trace minerals included.
In addition, I take a Holland and Barrett multivitamin which gives me some extra calcium, D and K.
Of course, it is important to remember to have magnesium with all of this and I take 450mg of magnesium citrate. I get this from that which is the Solgar Bone Support, a separate supplement and multivitamin.
Besides this, I eat a calcium rich diet and try to keep active.
By the way, the level of blood serum calcium has nothing to do with the state of your bones as far as I can tell.
It must feel good to be free until October and you are right to enjoy your summer in Vancouver. Getting out in the sun for short periods is the best way for us to boost and store vitamin D. Sunshine is the best source and you need only 10 to 15 minutes a day, and it needs to be without sunblock.
I have a printed sheet which I have had for a while and it does emphasise the importance of vitamin D. The sheet is entitled Breast Cancer Prevention Strategies. I am sure I posted a link about this not that long ago. It states that you should optimise your vitamin D as it influences virtually every cell in your body. It further says vitamin D is able to enter cancer cells and trigger apoptosis. It also says that if you have cancer your vitamin D level should be between 70 and 100 ng/ml and that vitamin D apparently works synergistically with every cancer treatment with no adverse affects. It also says that if you are taking high doses of oral vitamin D3 supplements you need to increase your vitamin K2 intake as vitamin increases the need for K2 to function properly.
I hope you enjoy your time in South Africa and the UK.
Best Wishes,
Sylvia xxxx
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Hello everyone,
For those of you interested in vitamin D, I think I got the information I have just printed from www.mercola.com and if you like to look this up you will find that there is a one hour free video on vitamin D on this site and lots of other information. I am going to study it all again later.
Keep posting, keep informed!
Best wishes.
Sylvia
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Hello InspiredbyDolce (Debra),
Thank you for your post. I think you will be interested in the post that I have just sent to adagio. You might like to look at the one hour video on vitamin D on the link that I have just posted. It looks as though vitamin D levels should be between 70 and 100.
You need to remember that with high levels of vitamin D you need to increase your vitamin K2. Please look at my previous post. The best way to get your vitamin D is through sunshine. You also need a calcium rich diet.
I find that Solgar supplements are the best and as stated I am taking soft gel vitamin D3 supplements in this brand, as well as vitamin D3 from the Bone Support Solgar supplements.
I hope this helps.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to say thank you to the small group that is keeping the thread going at the moment. I hope you all will have a good weekend and a good week as July begins. I hope you will all remember to get some time in the sun and build up those reserves of vitamin D3. Remember gently does it. Long periods in the sun is not healthy and does not mean increased levels of vitamin D. A little every day between the hours of 10am and 2pm.
To sam52, I do hope things are not too bad with you. You do not have long to go before the long summer holiday.
Many thanks to Peter and Michael for your contributions to this thread.
To PeggySull and InspiredbyDolce (Debra) I hope you enjoy your July 4th celebrations next week and to adagio, I hope you do something special for Canada Day on July 1st. It is on that day a Canadian Mark Carney will take over as Governor of the Bank of England and I think there are great hopes that he will sort the country out. Raymond and I always enjoyed Canada Day and joined the crowds on Parliament Hill in Ottawa.
To linali (Lindsay) and Mumtobe (Carol), you are two special ladies and I am proud to have you on the thread.
To Lolalee in Australia, pop in and say hello when you can.
To Carolben in South Africa, you are in my thoughts and I hope you are not feeling too awful as you go through chemotherapy.
A really special hello to Liv in Australia. Please pop in if you can. You contributed so much to the thread. To Ed, her father, if you have a way of contacting us please do.
Sending fond thoughts to everyone.
Sylvia xxxx
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Hello everyone,
Food for thought this Sunday morning. I found this on www.mercola.com.
“In the largest review of research into lifestyle and breast cancer, the American Institute of Cancer Research estimated that about 40 percent of U.S. Breast cancer cases could be prevented if people made wiser lifestyle choices. I believe these estimates are far too low, and it is more likely that 75 percent to 90 percent of breast cancers could be avoided by strictly applying the recommendations below.”
If you are interested in any of this you will find lots of information on the above website.
You will not be surprised to know that one of the recommendations is to avoid sugar, especially fructose. If I remember correctly it says that all forms of sugar are bad for your health in general and promote cancer. It further says that fructose is the most harmful.
Hope you have a good Sunday.
Sylvia.
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Hi Sylvia,
I am just back from a day of meditation and Tai chi at a Buddhist centre about 20 miles from here.
An interesting day with much food for thought. It was run by our Tai Chi teacher and Michael who is a Buddhist volunteer.
I am still getting used to the idea that I have been retired. I officially left on 20th June but still have to complete the paper work.
Damian has been quite ill and it meant that we had to postpone having Oskar for a while. We have had some sleepless nights as Dammian had high temps but the worst is over I think. Hopefully he will get an appt with his GP tomorrow.
Leigh is busy with his music and was dancing in a Summer Solstice performance at dawn for 4 days last weekend.
He is now on oestrogen patches as the next stage in his transitioning but with not much psychological support and that concerns me. He only sees his Aspergers key worker once a fortnight now because of cut backs.
The centre is as busy as ever and we are just about to publish our booklet. We also have a stock of Ograh skin products that are supplied to the centre at cost price. They are natural, made from peat.
I am still waiting to hear from the pain specialist and my mammogram is due on 19th July but I am becoming more aware of my need to improve my general health and fitness.I was interested to read about the vitamin d and it is one supplement that I need to take.
The weather here is misty but humid. The weeds are flourishing unlike my herbs and spinach that have disappeared.
Sending good wishes and health to all x
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Hello linali
Thank you for your post.
I hope everything will work out for you with your health and with your family. As for your retirement, it will take time to adjust and then you will probably enjoy it. I think the secret of a good retirement is to have structure to your day, keep planning your days and have hopes and dreams. For many, retirement has not been planned and people are bored and tend to vegetate.
I think the thread is gradually coming to an end. It has been going for nearly three years and I think I have achieved my goal of bringing TNBC out of the dark ages, although ironically it is people in the UK who have used it the least, even though I started it especially for them.
Wishing you well.
Sylvia xxxx
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Sylvia,
I have learned so much from you! You sometimes digest the latest research for us and other times give us the link. This is critically important for tnbcs.
If this forum does end, would you be a part of the "calling all tnbcs"? I read both of them daily and would hate to miss your and others in the UK's participation.
I don't know the history of this forum so don't know what to say about it's life cycle. I have been lurking and posting only since October 2012.
Hugs,
Peggy0 -
sylvia - I echo the words of Peggysull - I have learned so much from you and have appreciated all the research you have done and passed on to us. I read the thread every day, even though I do not post often. TNBC is such a misunderstood form of cancer with no definitive treatment per se - but we each choose what treatment we think gives us the best outcome and for most of us - the outcome is yet to be determined. I am trying to move away from dwelling on cancer and more to embracing wellness and health. My heart will always be with women who have to go through what we all have gone and are going through - it is indeed a tough journey.
If you decide not to continue with the thread - please do keep in touch - I feel like I know you and that you are a friend. Have a happy and healthy summer.
I have started nordic walking every Monday - apparently very good for the lymph drainage and preventing lymphedema. I continue with my exercise classes on Wednesday and Friday and walk my dog every morning for 45 minutes. So all this exercise combined with a healthy diet should do something to keep the cancer away and prevent the osteoporosis from becoming any worse.
Take care, Sylvia
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Hello adagio and PeggySull
Thank you so much for your posts and for your kind words. They mean so much to me and I was glad to know that I have been of help to both of you. You do feel like friends to me, as do many others who have participated so strongly on this thread. You are definitely not just anonymous names.
I shall post more later on and I do hope that we shall manage to keep the thread interactive.
To Peggy, have a wonderful July 4th day. I do admire the way the American women and the Canadians offer one another such strong support.
I saw on the news that the Canadians were out in Trafalgar Square, London, celebrating Canada Day and Canada is much in the news because of the arrival of Mark Carney as the new Governor of the Bank of England. He astounded everyone by travelling to wotk on his first day by the Underground and shunning the chaufered car. He also arrived for work at 7am.
Fond wishes to both of you. Talk to you later.
Love
Sylvia xxxx
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Hello PeggySull,
Thank you for your post. I was so glad to know that you have learnt so much from this thread. It makes it all worthwhile. When I do find some latest research I do like to simplify it as much as possible, so that it is easy to understand. I suppose that is the teacher still inside me! So often some of the articles can be a bit long winded and unnecessarily complicated. Other times, it is more useful to give the link.
I shall try to keep this thread going and keep looking for new information, but do want it to be interactive if possible. I do try to keep up with Calling all TNS and did post there before beginning this thread, but it is so big that I sometimes find it overwhelming. Titan did a fine thing when she began the thread and I do find that American (and Canadian) women do have a great gift of coming out in support of others, being very open about their feelings and creating a sisterhood. I am a very direct person and feel that I must have been influenced by long stays abroad. Seventeen years in Canada really counts and my husband and I did take out Canadian citizenship, which of course we still have. We had to wait a minimum of three years to do this and we had to learn about Canada and answer questions before a Citizenship judge before we could qualify for citizenship. Naturally we had trips into the US and visited New York State, New York itself and New England. Canada and the US are immense countries and the UK is just a tiny little island in comparison. In North America you definitely have 'get up and go'!
This thread has done remarkably well and has had nearly 37,000 views and heading for 4,000 posts. When I started it in September 2010, I had no idea it would go this far. I have dedicated myself to it since I began it, because I have believed from childhood that if something is worth doing it is worth doing well. I have been proud of the quality posts that have come in over these years and developed genuine affection and respect for those posting. I have met some truly wonderful and strong women and they have left a lasting impression on me. I must not forget the men who have also posted.
Thinking of you Peggy and hoping that you are having a good 4th of July.
Fond regards.
Sylvia xxxx
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