Calling all triple negative breast cancer patients in the UK
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Hello Liv and everyone,
I have found some information that states HRT increases the risk across all tumour types, including triple negative BC. The link is:
http://www.cancer.org/cancer/news/news/advanced-breast-cancers-higher-death-rate-in-hrt-study
Sylvia
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Hi everyone - thanks for your concern, Sylvia, I'm doing good! Had the first Paclitaxel on Friday and it went very easily. The port gave no problems, was not painful at all. And as far as SE go, I forgot to take the anti nausea meds on Saturday and got a bit nauseous later in the morning, but took the meds and got it under control. Had a bit of vertigo, but had forgotton to take the anti motion sickness pill in the morning. I remember now that you should take all anti nausea meds for the first few days of chemo, whatever. However, I was at the beach and had a swim in the sea on Sunday morning, had a swim at the pool this morning. Stretching my arm on the port side seems to pull on something and it gets a bit sore, so I swam very gently and didn't push it. I think gradual exercise will help it.
I'm also so enjoying the exercise I do - yoga, swimming and dancing at home by myself. The swimming and dancing gets my heart rate up, the yoga irons me out.
I've always been too shy to dance in public (unless I had a few drinks in me), but love to dance. So I've spoken to a young guy here in town who gives dancing lessons - ballroom, salsa, etc, and I'm going to have a few lessons with him. Once I get my schedule down pat I may even join a class.
My onc said this is the time to do the things that make me happy and I think it's time also, to do things I've not done because of some reason or another, that I'd like to do - like paragliding and sky diving with my son in March/April when he'll be down here with me. And of course, there's our trip to the game reserve in March.
I've also been having vitamin B complex injections, as well as a B supplement. It helps a lot with my appetite and general well being, I feel.
I like raw broccoli and celery dipped into hummous or tahini paste.
Am still catching up with all the posts - Mumtobe, I also felt quite emotional after chemo ended, I couldn't quite believe what I'd just done! I found rads easy after chemo, but as Sylvia says, the travelling every day was tiring. Found that rads also caused me a lot of fatigue.
It's way past my bedtime, just wanted to catch up and let you know how it's going. Am crossing everything (as Liv says) that the rest of this chemo will go as easily as the first one! Second one up on Friday.
Love to you all
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Hello Sylvia
I was pleased to hear that all your blood results were normal - but how frustrating that they did not bother to do the PTH.With regard to calcium levels and parathyroidism;I had only slightly elevated serum calcium, which went down to normal when I stopped taking calcium supplements. My PTH levels were, however, elevated;I was diagnosed as having 'normocalcimic hyperparathyroidism' - so you are correct in thinking that normal calcium levels do not preclude having parathyroid disease.
I have not discovered what my blood results are yet; I thought I would wait to get the DEXA scan and get all the results together.It was the rheumatologist who ordered all the tests,so he will be the one to give me the results;I am not sure he is qualified to comment on them,or interpret them, however.
It is very frustrating not to be able to get a GP appointment quickly. I am fortunate in that my group practice offer same-day appointments, usually with whichever doctor you request, as long as you ring at 8.30 in the morning. Of course, everyone is madly ringing at 8.30, so it takes a lot of perseverence (and luck) to get through.I have mostly been able to get an appointment quickly with one of the two GPs I feel confident with.
You mentioned in a post above that you did not think Neulasta was around when you had treatment; in fact it was - I had Neupogen (Pegfilgrastim) when I had chemo in 2002. The very first dose of chemo I had (FEC) affected me on about day 10; I had already had good results from my blood tests earlier (they assumed the nadir was on day 7, I think) - so my blood went down later than most people's and reached a nadir later, with a dramatic loss of neutrophils (white blood cells).I ended up in isolation in hospital and there received my first Neupogen injections.I remember feeling dreadfully achy, especially in the lower back; when I told the (inexperienced) doctor on duty, he said it must be from the uncomfortable hospital bed! However, I found out from my bc oncologist friend in Sweden, that that is the typical side effect of G-CSF injections (granulocyte colony stimulating factor -ie neulasta and neupogen) - it is the bone marrow being stimulated to make more blood cells. I would typically get this bad bone pain in my lower back and sometimes the pelvis on the first and second days after starting neupogen injections, but it would ease off thereafter.I actually found it quite reassuring, inasmuch as the pain meant that the bone marrow was producing the much-needed blood cells.
I received G-CSF injections on day 7 after every dose of FEC and at the same time after my first dose of Taxotere; however,I ended up in isolation again with neutrophils of 0.05 and a badly ulcerated throat and a fever on about day 5, so thereafter the injections were started on day 3, I think.The Taxotere had made my blood reach its nadir much earlier.
I have dredged up these memories from more than 10 years ago.....it is amazing how much detail actually comes back!
I have spent the last couple of days digging on my allotment and pruning an apple tree; the weather in London has been sunny and spring-like, but still very cold as soon as the sun goes down.Apparently, it is all downhill from tomorrow.
I hope your ankle improves.
With love,
Sam x
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thx sylvia, yes it is so confusing my oncologist said to take part that i would have to be tested to see if beta and had to have a biopsy done on node, tumor that was not originally tested with primary.
not sure if being beta positive does affect the triple negative status as this is a sub section and not in relation to the original triple negative.
my oncologist was very interested and new all about it and gave me some papers to read on it but as i have not a node that can be biopsied right now would not make me a candidate as nodes are on chest wall.
after thinking about it i dont know if i would go on this trial as you say sylvia terrible side effects and i would want a lot more convincing that if my bc was was indeed hormone receptive postive ibeta which is only about 20% of triple negative bc's. and further proof that im going to beneifit from this horomone drug.
xx
http://www.anzbctg.org/clintrials.aspx?TrialType=Main&action=anz1001
OPEN CLINICAL TRIALS
ANZ 1001 Study of Oestrogen Receptor Beta and Efficacy of
Tamoxifen (SORBET)Scientific Title
A single arm phase II study of the efficacy of tamoxifen in triple negative (oestrogen receptor alpha negative, progesterone receptor negative, HER-2 negative) but oestrogen receptor beta positive metastatic breast cancer.
Summary
About 15% of breast cancers diagnosed are a type which is called ‘triple-negative’. These cancers are more resistant to treatment because they lack the three most common treatment targets known as receptors. Women diagnosed with triple-negative breast cancer usually have a poorer prognosis as their disease is more likely to spread to other sites in the body.
Currently these women are treated with standard chemotherapy which can have benefits but which is also associated with significant side effects often compromising their quality of life.
Tamoxifen is a longstanding and successful hormone treatment for women with hormone-sensitive breast cancer, specifically oestrogen receptor (ER) and/or progesterone receptor (PR) positive breast cancer. There are two different forms of the oestrogen receptor, oestrogen receptor alpha (ERα) and oestrogen receptor beta (ERβ). Researchers have measured ERβ in stored tissue from women who received treatment with tamoxifen. It was found that the women who had breast cancers that were ERα-negative, but ERβ-positive had longer survival times than those with tumours that were negative for both receptors. This led to the hypothesis for SORBET, that tamoxifen may be an effective treatment for women with triple-negative breast cancers that are ERβ-positive.
At least 20% of triple-negative breast cancers are ERβ-positive. It is hoped that SORBET will show that daily treatment with tamoxifen, a low cost and well tolerated drug, can control the growth and spread of triple-negative, ERβ-positive metastatic breast cancer. If this is so, tamoxifen will be added to the treatment options, which currently focus on chemotherapy, for these women. It may also lead to the investigation of tamoxifen as treatment for triple-negative, ERβ-positive early breast cancer. Results of this research will have implications worldwide in the treatment and management of women with this type of breast cancer.
SORBET will involve over 66 participants from 10 hospitals throughout Australia and New Zealand.
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carol & ben
wow you sound wonderful, swimming dancing lessons. go girl and what your dfr said, now is the time to do nice things. so true perhaps we took a lot for granted before and now we appreciate lots of things that we didnt even consider.
loved reading you are doing it so well.
xx
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Hello Sam52,
Thank you for your detailed account of your experiences with Neupogen.This is exactly what the thread needs in order to help others. I obviously was not given this drug, but I did not have any problems with low blood counts during my six months of chemotherapy. In fact chemotherapy was a very smooth ride for me,but like you, I still remember everything very vividly.
I phoned the surgery this morning and there was still nothing about the PTH level. I shall try to sort it out with my doctor on Friday.How many people are walking around with undiagnosed hyperparathyroidism,I wonder, and ending up with all kinds of problems.
I was glad to know that you have managed to start work on your allotment.
Have you any ideas to help Michael with the heading or do you think his one is what is needed?
Thinking of you,
Love,
Sylvia. xxxx
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Hello Carolben,
I was so glad to know that you are doing so well and that you are keeping so active and doing the things that you enjoy. We all have to make the most of everyday and do the things that make us happy.It really looks as though weekly doses are the way forward.
I am so glad that you have things to look forward to as this will get you through your treatment.
Thank you for the detailed account as this will help others.
It would be useful if you could give the details of the medication that you are taking for the first few days after treatment. I remember doing this for about two or three days. Do they include steroids?
Keep enjoying yourself and keep looking forward.
Love,
Sylvia.xxx
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Hello Liv,
Thank you for your post and for all the information.
Just look after yourself with your healthy food and all your exercise, and enjoy life to the full.I can tell that you have a lot of vitality and optimism and that is a good thing.
As you say all this research can get very confusing. All of a sudden we are being told that there are now two types of oestrogen. Where did that come from. It seems to me that if you have some degree of oestrogen then you are not negative. I am wondering whether this is just a way of using the cheap drug tamoxifen. I can only speak for myself, but I would not take it.
How are you getting on with the drug navelbine? How long do you have to take it? Is it causing any side effects? How are you feeling? What do you do to relax?
Love,
Sylvia.xxx
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sylvia (hugs)confusing alright.
im not convinced and dont have a strong desire to get on tamoxifen and i usually if in doubt leave out.
my gut feeling is neither way so unless it jumps back up at me i will not pursue.
what i do to relax is music and friends and a few drinks..and dream of all the things that make me happy.
xx
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Hello Susaninicking
I saw that you had started a thread about chemotherapy treatment. We are not supposed to give medical advice on the forum, because we are not doctors, but we can say what we would do if it were us and we can give information about our own experiences and treatment and information we may find elsewhere, but we should quote the source.
If I were you I would stay with the hospital and medical team that have been treating me all the time and have my records. There is not a lot of difference in the drugs that are used for primary breast cancer and our oncologists will weigh up everything and decide on the regime that they think will be best for us. Different oncologists may have different views.
You have said that the first oncologist has advised FEC and then docetaxel (Taxotere). The FEC regime is quite common as is just EC for the first half of chemotherapy.
FEC = fluorouracil, epirubicin, cyclophosphamide and docetaxel on its own is quite common for the second half of chemotherapy. It is quite a simple matter to ask your oncologist why they are including F (fluorouracil). All it does is give you a third drug in helping to combat the breast cancer.
These drugs belong to different groups and work in a different way in killing cancer cells.
Cyclophosphamide belongs to the group known as alkylating agents.
Fluorouracil (also known as 5-fluorouracil) belongs to the group known as antimetabolites.
Epirubicin I think belongs to the same group as doxorubicin as sometimes they seem to be interchangeable. They are known as topoisomerase inhibitors.
I had EC for three months every three weeks.
As for docetaxel (Taxotere) and paclitaxel (Taxol), they are both taxanes and they belong to the group of drugs known as antimetabolites.
I have read that both of these drugs come from the yew tree, but each one comes from a different kind of yew tree.
I had three months of docetaxel on its own every three weeks.
I asked my oncologist why she had chosen docetaxel instead of paclitaxel and she said she had chosen it because it was less harmful on the heart.
Reading recent posts, it now seems usual to go for a regime of every week and this seems to be easier on the patient. Obviously you will be given a lower dose but have to go to the hospital more often.
If you want to post here you can learn from others going through dose dense chemotherapy.
As for EC or FEC, I am not sure whether they are doing these weekly, but these are things you need to sort out with your oncologist.
I hope this helps you to sort things out clearly and to decide with your oncologist what is the best course of treatment for you. Never be reluctant to ask your medical team as many questions as you like. With chemotherapy and radiotherapy it will be your oncologist who will deal with all this.
I do hope you will be able to start your treatment on March 6th.
If you can obtain a copy of the Merk Manual Home Health Handbook you will find it very useful for information about breast cancer and its treatment. It is also a very useful book for all matters relating to your health in a very readable way. When I was going through treatment in 2005 I did not use the internet at all but read Merk very carefully.
Later, I shall post a list of the common side effects of chemotherapy, but remember you will not necessarily have them, but you will have hair loss.
Do not hesitate to post as we are here to help and support.
Love.
Sylvia xxxx
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Thanks Silvia.
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Hi all. Would like to weigh in on the dose dense discussion. In the US AC followed by Taxol is a very common chemo combination. In the days before Neupogen and Neulasta the chemo was given in a three week cycle, as it took that long for the white blood cell count to recover enough to repeat the chemo. Neupogen is given for several days after each chemo infusion while Neulasta is given the day after chemo. Both do the same job, boosting white blood cell production - and I have no idea why one is given in preference to the other. However, it meant that our white blood cell count could recover enough to allow chemo to be given in a 2 week cycle, which apparently can be beneficial. I know a lot of people have bone pain with Neulasta. personally, it did not affect me at all.
Sylvia - hope you get the thyroid thing sorted out quickly. A lot of women have thyroid problems at some point. It has been suggested there is a connection with breast cancer, but I don't know. It is so common there is bound to be many with both. About 10 years before I was diagnosed with BC I had a thyroid issue. Mine was overactive - can't remember if that is hypo or hyper. Hyper makes sense, but I know an underactive thyroid is more common.
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Hello Gill,
Thank you for your post. It is so good to have women like you posting in and adding useful details.
When I first discovered breastcancer.org, which was in 2009, I was way past my treatment, but was looking for details about something else, which I shall explain in a minute. The first thing I noticed was that in the US women were indeed getting AC followed by Taxol (and for those wondering what the A means it is Adriamycin, the brand name for doxorubicin), whereas in the UK it was EC and E is the chemical name for epirubicin, of which the brand name is Ellence, and this was followed by Taxotere, the brand name for docetaxel. Now it seems to be a mixture.
I can understand why with the move apparently away from the three week cycle and the move to weekly or two weekly, that Neupogen and Neulasta are given regularly. Without these the body would not have time to recover. As I have also said, we all react differently to the drugs we are given so that we cannot assume that we shall be affected in the same way. As you say, the Neulasta did not affect you at all, but other people seem to have a lot of bone pain.
Gill, I do not have a thyroid problem, either under active or over active. In 2005, when I was diagnosed with breast cancer, my oncologist was concerned about high calcium levels in my blood. I had a bone nucleide scan to make sure the cancer had not spread to my bones and that came back clear. She decided to test for hyperparathyroidism, an over active parathyroid. The parathyroid glands are four little glands about the size of a grain of rice and they usually sit on the thyroid gland. If one of your parathyroid glands is over active, the glands cannot carry out their normal function of controlling the calcium serum level in your blood, and calcium leaches out of your bones into the blood and you end up with osteoporosis and kidney stones. The result of the blood test showed elevated levels of parathyroid hormone. This problem was left while I went through my breast cancer treatment and I just kept a check on my parathyroid hormone level and calcium.
I was searching for information about this and ended up meeting with sam52 on another thread and we posted a lot about hyperparathyroidism which we both had. Through sam52 I found out about research linking hyperparathyroidism with the development of breast cancer. To cut a long story short, I had a special scan in 2009 (Sestimibi) and was told I had a non-malignant adenoma on my upper right parathyroid gland. My breast cancer was in the right breast. I had surgery to remove the adenoma, the parathyroid hormone level normalised, as did the calcium level, and I was pronounced “cured”. Since then I have tried to keep a watch on things in case I had problems with another parathyroid gland. I decided to ask for it to be checked, along with a routine blood test, but it appears it has not been done. I was explaining all this to sam52, with whom I have kept in touch since 2009, when we met on the thread and went through our surgery etc. together.
We are both convinced there is a connection between hyperparathyroidism and the development of breast cancer. My breast cancer surgeon, also endocrinologist, and who performed both of my surgeries, told me the hyperparathyroidism came first, so I think it could have caused my breast cancer.
I was told hyperparathyroidism is very rare, but I think it is under-diagnosed because it does not form part of routine blood tests. When I went to my GP in 2009 and asked for a blood test for parathyroid hormone level, he told me he had never dealt with a case in the whole of his career, and he was near retirement.
A lot of people mix up thyroid problems with hyperparathyroidism. Even the doctors get it mixed up!
By the way, I have also read that thyroid problems can also be a risk factor in the development of breast cancer.
I suppose that any abnormal functioning of any gland in the endocrine system can result in some disease, cancer or otherwise.
If you want to know more go to www.parathyroid.com.
If you want to have a look on this forum, go to Not diagnosed with mets but concerned and look at the thread High calcium.
There is also a thread started by sam52, which I think is Hyperparathyroidism and breast cancer, but I cannot remember the forum. Can you help, sam52? Please post and tell me the forum that you put your thread in.
Keep posting, Gill. Those going through treatment need our help and support.
Love.
Sylvia xxxx
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Hello sam52,
I just wanted to let you know that I suddenly remembered the forum where you had started your thread. It was IDC (Invasive ductal carcinoma) and the thread was Hyprparathyroidism and breast cancer. I have bumped up this thread and the High calcium one where we first met.
We need to keep these going.
Love.
Sylvia xxxx
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Hello Liv,
I was wondering what kind of music you like to listen to. Post and let me know.
I can imagine you in your sun-drenched country with your friends, relaxing and listening to music and enjoying a glass of wine. You are right to dream and I hope your dreams come true.
Dreaming reminds me of the song from South Pacific about if you do not dream, how are you going to have a dream come true?
I have been relaxing today and lying on the sofa trying to keep my foot elevated. It is really cold here and the wind is howling. I had a visit from my brother, who also lives in Exmouth. He is very involved in politics and we always have lively conversations.
I was appalled today to hear on the news that one in five children in England is living below the poverty line and that more and more people are having to use food banks and soup kitchens. Is this a problem in Australia?
Keep well.
Love.
Sylvia xxxx
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Hi to Sylvie and the rest,
I'm an American who lives in Germany and was diagnosed with Triple Neg BC in January. "I'll just get that dumb mammogram out of the way..." I waltzed into the radiologist's office on January 9, planning to do some shopping afterwards. Ha---here I am seven weeks later after MRI, ultrasounds galore, biopsy ("this won't hurt a bit"), scans and then lumpectomy surgery on Feb 7. This coming Monday we'll meet with the docs and hear what they recommend, so I've been trying to educate myself about follow-on therapies.
The weirdest thing about my case is that the pathology report came back saying it was definitely TN, but only Grade 1. If it's true, I'm not complaining (!) but there isn't much out there about TN G1, especially regarding chemo, which I dread but will grit my teeth and do if necessary. A second opinion seems to be called for, no matter what my original team comes up with, wouldn't you say?
This has turned out to be my favorite, I mean, favourite
site for information and forums! Thanks for being here for us newbies!Hugs, Cynthie
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Hello Cynthie,
Thank you for your post. We are all sorry that you have to be here, but we shall all do everything we can to support you through this breast cancer journey. This is all very new for you, so, like all of us at diagnosis, you will probably still be in shock.
At least you have been given prompt treatment and have certainly got through a lot in seven weeks. You have the biopsy, ultrasounds, other scans and surgery behind you.
On Monday, when you meet with your doctors, and get to know what they recommend, you will feel more settled and can get ready for whatever they think is best for you.
I noticed that you have IDC (invasive ductal carcinoma), which is the most common of the different breast cancers and apparently represents about 85% of breast cancers. I think that if the pathology report has come back saying that you have triple negative receptors, i.e. oestrogen negative, progesterone negative and HER2 negative, and that it is grade 1, then I would think this is correct. However, if you feel that for peace of mind you would like a second opinion, then by all means go ahead and ask for one. Patients have to do what is the best for them. Perhaps someone reading the thread will now post to say that they are or were TN and grade 1. I have read quite a lot of the TN posts but cannot remember a grade 1, but that does not mean that are not some out there. I know there have been some grade 2s. The most common grade is 3, as you probably know. Your tumour is small and your stage good, so you should be optimistic.
It is hard to say about what to do with what your original team comes up with. That is a personal choice. I can only say that I would feel more comfortable, as I have said before, with the team that has treated me for everything else, provided you are comfortable with that team. If it were me I would wait for the meeting on Monday February 25th and see what they have to say. You do not have to make a decision at that time and can always say that you want to think things over.
I know people here in the UK who had small tumours and had lumpectomies followed by radiotherapy only, but they were hormonal positive patients. With TN it could be that they might want some chemotherapy and radiotherapy. Different countries may have different ideas.
Let us know what happens. Do not be afraid if you are advised to have chemotherapy. You can get through it.
Thank you for your kind words about the thread. We all try to do our best to make it helpful and comforting. Do you mind if I ask your age, as it is useful to know especially with TNs.
Have a good weekend and try to relax.
Best wishes.
Sylvia xxxx
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Hello everyone,
As I said I would yesterday, I am listing the common side effects of chemotherapy so that the newly diagnosed know what can happen, but it does not necessarily mean they will happen as we are all different.
Common side effects are nausea, vomiting, loss of appetite, weight loss, fatigue, and low blood cell counts that can lead to anaemia and risk of infection. People often lose their hair.
Patients are usually given anti-emitic drugs to prevent or relieve nausea and vomiting after treatment. It is important to take these drugs in the first few days after chemotherapy.
It is best to eat small meals rather than large ones. I was told when going through chemotherapy not to eat raw foods, like salad foods or seafood, because of the risk of infection and I certainly found small meals easier to deal with. I kept my food very plain, such as poached fish, mashed potatoes and vegetables. I did eat plenty of fruit, mainly organic. When I was on docetaxel (Taxotere) I was very sensitive to taste and smells. Things tasted metallic and I did not like the smell of cooking!!!
Patients can develop low blood cell count, but your medical team know how to deal with this. You can develop these low counts because of the toxic effects chemotherapy drugs have on bone marrow, which is where blood cells are made.
Abnormally low numbers of red cells (anaemia)
Abnormally low numbers of white cells (neutropenia or leukopenia)
Abnormally low numbers of platelets (thrombocytopenia)
Patients can develop problems with the lining of their mouths, such as inflammation or sores such as ulcers. These can be painful but can be treated with various oral solutions or gels.
I found that I was most affected by fatigue and did a lot of resting. In fact, I was told the way to get through chemotherapy was to drink a lot of water, especially straight after chemotherapy, to get a lot of rest and to be strong in my attitude.
I found that canned pineapple in its own juice or fresh pineapple was very refreshing for the mouth. I also found that lemon and ginger tea, especially with some grated ginger in it, was very helpful in keeping nausea at bay, as were ginger biscuits.
When I lost my hair I found washing my scalp with baby shampoo and moisturising with avocado oil stopped my scalp from getting dry.
I hope this will help the newly diagnosed. Please feel free to add any other tips that you think will help the newly diagnosed.
Those of you who have finished treatment, like Bernie, linali and FernMF, it would be nice if you could support the people now going through treatment or getting ready to start it, to let them know they can get through this.
Best wishes to everyone. Keep up the good work on this thread.
Sylvia xxxx
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Hello everyone,
I have been looking at the news flashes on the forum and found the one about research should be focussing on prevention when dealing with breast cancer. Have a look at it, it is very interesting. It is about hormonal disrupters in the environment. I was interested in it because it has been in the news this week.
http://www.breastcancer.org/research-news/20130217
You also might want to have a look at the blog that is also on the news flashes and is about someone's cancer journey.
http://community.breastcancer.org/blog/the-places-youll-go-after-a-diagnosis/
Best wishes
Sylvia xxxx
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I had four rounds, three weeks apart, of taxotere and cytoxan . . . and a neulasta shot the day after each round. (incidentally, before insurance company cost, chemo bill was $11,000/round).
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Hello Ladies, please forgive me if it takes me a while to catch up with you all. I went to England to visit my brother, he is doing very well. Unfortunately while I was over there one of our dearest friends in Belgium died suddenly. So I met Dave over there for the funeral. We got back the early hours of monday morning. Dave has been very ill since we returned, he has the Norovirus. So life is a bit bleak at the moment.
Talk to you all soon.
Bernie.0 -
Hello FernMF,
Thank you for popping in with your post. Your treatment regime of just two drugs, cyclophosphamide (Cytoxan) and docetaxel (Taxotere) just goes to show that our treatment is individual and that we should trust our oncologist to choose the drugs that they feel will have most benefit. It also shows that the regime for the Neulasta shot can also vary.
I know that all these cancer drugs are very expensive. Someone is making a lot of money out of them. I still think the future is in prevention.
I hope you are enjoying life.
Best wishes.
Sylvia xxxx
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Hello Bernie,
Thank you for popping in. Please take your time catching up with what is going on with everyone and then we shall look forward to your comments.
I was very sorry to learn that one of your dearest friends in Belgium had suddenly died. When that happens it comes as a terrible shock.
I was glad to know that your brother Dave is doing very well and that you were able to meet up and attend your friend's funeral in Belgium.
It is a pity that he has contracted the Norovirus, as my understanding is that this makes you feel really low. I do hope he will make a rapid recovery. He probably needs a lot of rest.
I can understand how life is bleak at the moment, so take great care of yourself and remember you have good friends on this thread and we are all sending our best wishes to you.
Love.
Sylvia xxxx
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Hello everyone,
I just wanted to wish everyone a good weekend and hope that you will all be able to relax and enjoy yourself. To all of you continuing treatment in the coming week, remember that we are here to support you.
To Mumtobe (Carol), I hope that all goes well when you begin your radiotherapy on Monday February 25th. Remember to post to express your feelings and experiences with this treatment. We have been concentrating a lot on chemotherapy, but we must not forget that radiotherapy is a very important part of treatment and also has side effects.
To Cynthie, I hope all goes well on Feb 25th at your meeting to decide treatment.
I have just received a couple of newsletters from What Doctors Don't Tell You (WDDTY). They are well worth signing up for and they are free. The titles of the most recent ones are “The diet that protects against big killer disease” and “Doctors choose most dangerous drug”.
You may be wondering what has happened to the newsletters from Cancer Active. Apparently they are on hold for the moment as Chris Woollams is concentrating on the next edition of icon magazine.
That is all for now.
Best wishes.
Sylvia xxxx
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Hello everyone,
Sylvia thank you for all the information, just wish I knew what the preventative measures are, all I know is that according to my mammo from 10 years ago the calcification's showed up then and it was only last year that they became suspicious, so I do know they were there for at least that amount of time.
One BS said that HRT caused the calcification as I was on the hormone patches for 11 years after my hysterectomy, however my cancer was double neg so can't figure that one out!
I am presently in Hong Kong for a work related project and have developed groin pain which is very intense so I am off to have scans tomorrow, just hope it is not travel related and I am not dealing with DVT.
Bernie - so sorry to hear of your friends sudden death and your brother not feeling well. I have been hearing quite a lot about this Norovirus lately and it seems many people are being affected. Hope it is sorted out soon.
Hope everyone has a healthy and happy weekend.
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Hello everyone,
Sylvia thank you for all the information, just wish I knew what the preventative measures are, all I know is that according to my mammo from 10 years ago the calcification's showed up then and it was only last year that they became suspicious, so I do know they were there for at least that amount of time.
One BS said that HRT caused the calcification as I was on the hormone patches for 11 years after my hysterectomy, however my cancer was double neg so can't figure that one out!
I am presently in Hong Kong for a work related project and have developed groin pain which is very intense so I am off to have scans tomorrow, just hope it is not travel related and I am not dealing with DVT.
Bernie - so sorry to hear of your friends sudden death and your brother not feeling well. I have been hearing quite a lot about this Norovirus lately and it seems many people are being affected. Hope it is sorted out soon.
Hope everyone has a healthy and happy weekend.
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Sorry doubled up somehow.
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Hi Sylvia,
Thanks for your quick reply---you are very knowledgeable and reassuring!
You asked how old I am---57, German-Irish ancestry, had two babies (the first at 27) and breastfed each for over a year. I'm very slim and active, eat lots of fruit and veggies, some meat and dairy, not many sweets or starches but a wee bit of chocolate every day.
(Just to remind everyone that all those "risk factors" are gathered from aggregate studies and don't necessarily apply to individuals...)The recent posting about thyroid and parathyroid interests me---five years ago I had an attack of thyroiditis, a temporary inflammation of the thyroid which causes it to dump its stored hormone into the body all at once, causing acute hyperthyroidism. There's also a tendency towards prediabetes and hypoglycemia, which is minimized by eating the way I do. So possibly an endocrine system issue, or more likely not---but still interesting.
You seem to have noticed that I am prone to a certain "research mania" when dealing with the Unknown Menace, but I'm getting out of the house with friends almost every day, laughing a lot, walking, reading and praying. "Trust in the Lord with all your heart and do not lean on your own understanding (haha, good one). Acknowledge him in all your ways and he will make your way clear."
Off to have a real British tea with friends!
Cynthie
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Hi Cynthie, it is indeed very interesting to read about the thyroid problems and BC. I have had a multi-nodule goitre for many years. I have ultra sounds every year to monitor growth, have had fine needle aspirations and blood tests which have always shown to be within normal parameters. I will now be monitoring these closely.
I have never had the parathyroid checked but will now be asking for this at my next visit.
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Hello Lolalee,
Thank you for your post. It was so very nice to hear from you. I do want this thread to be as closely knit as possible, so that we get to know one another.
You said that you wished you knew what the preventative measures are. One of these is to make sure we eat as healthily as possible and that we make our food from scratch and from healthy ingredients. I think we all know the emphasis has to be on fresh fruit and vegetables and that these, along with grains, beans, etc., and a little protein, should be the basis of our meals. We need to stay away from too much animal protein, saturated fat, processed foods like convenience meals that we pop into microwaves, takeaways and junk food in general. Of course there are no guarantees but it is better to eat healthy food to prevent all kinds of chronic and degenerative illnesses, including cancer.
We need to keep to a healthy weight and if we are overweight or obese we need to lose that weight. We also need to make sure that our body mass index is in line with our height. In the UK I find it frightening to see the number of men and women that are really overweight. I think over 60% of the population here is now overweight and children are going the same way. Sometimes when I see old black and white films of men, women and children in the 50s here, I feel that some alien species must have taken over while I was sleeping!!! People today look so different and are so hefty and big built.
This leads on to the next preventative measure which is to keep physically active. We do not have to go overboard with excessive exercise and workouts at the gym. We need thirty minutes of exercise a day, five days a week. A good brisk walk is good enough.
These two things we can all do.
Another preventative measure is to try to limit our exposure to harmful things in the environment. I feel this is a lot more difficult. This has been in the news this week and is what the link that I gave was all about. On Wednesday the headlines in one of our newspapers, the Daily Mail, was about the same things as in the link. The headline was “Poisoned by everyday life – Landmark study warns gender bending chemicals in your home, food and car ARE linked to a huge range of diseases”. The article was by Fiona MacRae, Science Correspondent.
The article is about how chemicals found in the home may cause illnesses such as breast cancer, asthma, infertility and birth defects etc.
Apparently, global health chiefs have said that gender bending compounds used in such things as toys, pvc flooring, car dashboards, and even credit cards, can have serious health implications. They say there might have to be a ban on all these things. The villain implicated in all of this, is something I read about ages ago, called phthalates. They say these are implicated in harming female fertility and in rising rates of childhood illnesses, including leukaemia.
Another villain named is bisphenolA, found in things such as tin cans and glasses. These are thought to interfere with natural hormones. BisphoenolA has also been linked to fertility problems, breast cancer, prostate cancer and heart disease.
Yet another villain is apparently brominated flame retardants. These are implicated in a lot of health problems, including hyperactivity, learning difficulties, low sperm counts and difficulties in becoming pregnant. These retardants are used in sofas and other soft furnishings, carpets and rugs, the casings of computers, DVD players and mobile phones, to slow the rate of burning.
Yet another villain is PCBs, chemicals that are associated with liver cancer and male fertility problems. These are banned in the UK but apparently take so long to break down that they continue to contaminate soil and food.
In addition to all this, there was also an article in the Daily Mail entitled “Meanwhile, hair dye is linked to chemicals that can cause cancer”.
I have read about this many times and am convinced there is a link.
In addition to all of that, we have all sorts of chemicals in our household cleaning products, toiletries, cosmetics and so on.
All of this is very difficult to control in our westernised and industrialised countries and I think we are paying the price. We can control food and drink and our exercise more easily than our environment.
Other risk factors, such as alcohol and cigarettes we can eliminate and steer clear of smokers.
I feel that our western lifestyle with the emphasis on money and consumption is a stressful lifestyle and that negative stress probably contributes to breast cancer and other diseases.
If you want more information about the above articles you might try www.dailymail.co.uk, Wednesday February 20th 2013.
You mentioned what your BS said about HRT being the cause of your calcification. You have to remember, and I have stated it often on this thread, that HRT is implicated in all breast cancer, whether you have positive or negative receptors. You also have to remember that cancer cells keep mutating and that it is possible that your TNBC did not start as such. I was horrified to learn that you had been on hormone patches for eleven years after a hysterectomy. That cannot have been good.
I noticed that you do not have three negative receptors mentioned in your details and that you have HR- and PR-. Do you mean ER- and PR- and have you not been tested for HER2? Have you been diagnosed twice with DCIS as it appears from your details.
I was interested to know that you are in Hong Kong for your work. What is it like?
I hope that the groin pain is not anything serious and you are right to get it checked out.
Keep posting and let us know how you get on.
Have you been reading about all the food scandals going on in the UK? It is all about horsemeat in ready foods being passed off as beef. It is scandalous and done for maximum profits.
Keep happy and live every day to the full.
Sending you my best wishes.
Sylvia xxxx
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