Calling all triple negative breast cancer patients in the UK
Comments
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Bernie Ellen,
I hope you are feeling better.
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Hi to everyone, thanks for all the good wishes. The leg is not too bad during the day. It start to ache when i'm relaxing in the evening but ok to sleep with.
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Ladies it's 08.27 and it's snowing
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Hello everyone
I am glad to know you are all keeping in good spirits. You have all weathered this year very well.
Here in Exmouth we are having pouring rain, miserably cold weather (at least for this seaside town) and raging winds, but no snow so far. The seafront looks desolate. The brave dog walkers are all about.
Keep smiling
Best wishes
Sylvia
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Sorry Ladies... Its a beautiful warm & breezy day in florida. I miss snow!
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Hello mccrimmon324 (Heather)
Lucky you to have some warmth! I think Florida is probably a good place to be at this time of year. I bet all the Canadian Snowbirds are there. My ex-neighbours from Ottawa will certainly be in Port Charlotte and my neighbour from Exmouth is in Tenerife, Canary Islands until April. Devon damp is bone-chilling!
I saw from the other thread that there is a discussion about when you date your breast cancer. I have always counted from the day of diagnosis and I think that is what my medical team do. I shall be six and a half years out on December 20th.
As for cancer being related to your blood type, that is something I shall have to research. For the record I am A+ which, according to the posts I read, that makes me suceptible for cancer.
What do you think about this theory?
All for today.
Best wishes
Sylvia
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Slyvia,
What a small world, although my address is Punta Gorda, we technically live in Port Charlotte. Being from the NE part of the county I'm used to the 4 seasons and do miss the cold. I know I'm the minority on that.
I guess it would be nicer to count from diagnosis but in my head it makes more sense to count from surgery. Six & Half years! Congratulations!!
The Blood type theory is actually pretty interesting, I'd love to read more about it.
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Hello mccrimmon324 (Heather)
I was interested to know that technically you live in Port Charlotte. I think I could do without autumn and winter and just have spring and summer. I do love to see everything coming back into bloom in the spring and everywhere in full bloom in the summer. I feel that the long dark evenings here make me feel very lethargic and tired, even though i am a very energetic person.
I can see what you mean by saying that it makes sense to count survival time from surgery.
If you Google "Breast cancer and blood type" you will find lots of information. It actually amazes me that there is so much information on the internet, perhaps too much and often contradictory. I usually read the articles with the most recent dates. Just glimpsing at the information I can see that there are contradictions with articles stating a link and others stating not. It looks as though they have been researching those with HER2 and finding some connection with type A blood and HER2+ not doing as well.
In a way, my way is to accept that breast cancer has multi-causal risk factors and that I shall never really know what caused my own case. I look at the possibilities and try to take control of those aspects of my daily life that I can control. Otherwise, you can be in a perpetual state of confusion and anxiety.
With best wishes
Sylvia
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Sylvia - thank you so much for keeping tabs on me, and for your well wishes. I am feeling upbeat that this drug may be working even after one dose. My liver functions improved in the one week, and my tumor markers stabilized. So good signs!
I do lurk here to keep up with you all, although you face different challenges with your healthcare system. I've been thinking of TEK, I hope she's doing okay!
Best, Susan0 -
Hello Suze35 (Susan)
I was so glad to see your post. I do so hope this drug will be successful for you. The signs are certainly good and we shall all keep our fingers crossed for you.You are very welcome to post here as much as you like. You are very well informed and we can all benefit from what you have to say at the same time as we support you.
I know that the different health systems give us different challenges, but, when all is said and done, we are all women that are going through or have gone through the challenge of TNBC. There is a large pool of chemotherapy drugs out there and we all have to make sure that we get what is best for us. It is my impression that it is easier to get the treatment needed in the US than it is here. I have recently read that here in the UK patients 70 plus are not being offered chemotherapy. One excuse is that chemotherapy is too taxing on the body at that age, but I think it is all to do with cost. By following what is going on in the US here in the UK we can at least mention drugs that we know about and ask for them.
Because of the internet there is so much information out there that the medical experts cannot hide them from us. It is not that long ago here that women were going to court to get Herceptin or Taxotere.
I was sorry to learn that you had trouble sleeping last night, but that you have something to get you to sleep. I think that as soon as we hit the pillow all that has been on our mind during the day starts whirling around. They say that soft music is a good way to get to sleep.
I keep hoping that we might hear from TEK sometime, but I do understand that, if she is having problems, she may not feel like it.
Wishing you all the very best.
Sylvia0 -
Hello everyone
I hope that the past week has not gone too badly and that you will all have a good weekend.I thought I would post a few snippets of information and some links that I have taken from the latest newsletter that I have just received from CANCERactive. I was wondering if any of you have signed up for it, as I find it is a mine of information. It does say in it to forward it to anyone who might be interested, but I cannot forward it to our thread, only to e-mail addresses.
The first headline is "Boost your immune system today! - This really is not hard."
"Orthodox Medicine is gradually developing a panoply of treatments that aim to boost a patient's immune system. Unfortunately, Doctors and Oncologists wake up to the necessity of a strong immune system all too late in the cancer treatment process. Interleukin, Interferon, Dendritic Cell Therapy and so on may have potential but they are commonly an 'after thought' being often used after the standard treatments have failed.
Worse, they are certainly not the finished article - one oncologist, bemoaning the fact that NICE had argued that 4 new kidney cancer drugs were 'not cost effective' stated that, without them, he was 'only left with Interferon and that didn't work in 70 per cent of cases'. Two problems are common - your immune system is not a single entity, but a vast array of different components (from T-cells, to B-cells, phagocytes, Natural Killer Cells and so on). You need them all in tip-top condition; and just because you boost aspects of your immune system, it doesn't mean you will kill off the cancer cells. They hide! But, you can change all this yourself. This is not rocket science."The important fact from all this is that you need all the components of your immune system in tip top condition.
The next headline is "The 3 wise men of herbs?"
According to the newsletter, there are three powerful herbs that, working together, would appear to help boost the immune system. These are astragalus, echinacea, and cat's claw.
"MD Anderson have even praised this leading herb for its ability to increase survival times in patients undergoing radiotherapy."
I think the number one herb is probably astragalus.
When I was first diagnosed, I subscribed to Icon magazine (at CANCERactive), because I had found copies at the hospital and was very impressed with them. Through that reading I saw the name of a UK Herbalist, wrote to him and obtained from him astragalus powder and worm-wood tablets, which I took before I decided to have orthodox treatment. I do think these helped. During my orthodox treatment, periodically I bought astragalus capsules from a natural food store and either took them whole or cut them and mixed them as a tea.
The next heading on the newsletter is "This spice works wonders." The spice is curcumin (Tumeric).
"Research shows that this spice kills microbes and bad bacteria in the gut - it is actually being used in some American Hospitals with colorectal cancer patients. But research suggests it affects the Cox-2 pathway (rather like omega-3, fish oils, aspirin, garlic and ginger) and can calm potential cellular irritation and inflammation, possible precursors to cancer.
There is also research that links the spice to controlling cancer spread and a reduction of the blood vessels needed for cancer tumours to grow. Indeed, one US oncologist stated that he knew of no cancer unaffected by it. You will find eating enough of it a little hard, but supplements are still allowed even in over-regulated Europe!"The next headline is "Get out in the sunshine today."
"No - it is not my little Christmas joke. This e news goes round the world. Research is quite clear: When your T-cells are presented with rogue cells (be they viruses or cancer cells), the first thing the T-cells look for is a vitamin D molecule. Vitamin D thus activates them so they can 'do their job'.
Vitamin D is crucial in the prevention of many diseases, not just cancer. The 'sunbelt' across America shows a high consumption of green vegetables and high levels of outdoor life in the sunshine - AND LESS CANCER. Moreover, there was new research last year showing vitamin D can actually correct rogue cells and 'normalise' them. If you are living in the dark, try supplementation. Harvard talked about 5,000 IUs a day."Once again, we are being given information about the importance of vitamin D and I do believe this information. As I read more and more, I feel that cancer, and that includes breast cancer, is somehow connected to many deficiencies. We have already posted about low iodine levels and breast cancer. We have to keep remembering that there are multi causal risk factors for cancer.
The final headline is "The two natural compounds behind the French Paradox."
I shall continue later.
Sylvia0 -
Hello again everyone
I was finding it difficult to paste the paragraph about "The two natural compounds behind the French Paradox - Corrective and Protective"."In the Rainbow Diet, I talk about research on diets from around the world and address head-on the French Paradox - the health conundrum no orthodox Health Body wants to talk about: Namely, that the French eat more saturated fats and drink more alcohol than almost any other nation, but have lower rates of heart disease and cancer.
Why? Because their diets contain many natural compounds that are both 'Corrective' and 'Protective'. Colours rule! And I am not just talking about the Mediterranean Diet by another name. The 'epicentre' for the French Paradox is around Toulouse - miles away from the sea! In my last e-news I covered Grape Seed extract - but it is just 50 per cent of one of the most influential combinations in the French Paradox Diet."That sums up the main items on the latest newsletter, but there is also "Chris Woollams' Junk Science Blog", and "Spend and hour with Chris Woollams on Skype".
If you want more details about information covered in the newsletter, the links are as follows:
(How astragalus, cat's claw and echinacea can really boost your immune system)
http://www.canceractive.com/cancer-active-page-link.aspx?n=1571&Title=Curcumin or turmeric
(Curcumin - potent in the fight against cancer)
(Vitamin D - Are you getting enough?) (Vitamin D - "Enormous potential to beat cancer")
There is a lot more information on these links and you probably need to take your time reading them. I have now read all of them and find them so useful. Please feel free to post your comments, as it makes the thread more interesting. It is useful to know whether you agree or disagree with the information.
Other links are:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3156&Title=Grape Seed Extract
(Grape seed extract, OPC's and Cancer)
Apparently OPC's, of which grape seeds are a powerful source, are thought to be some of the most powerful antioxidants available.
I was interested to read in this link that another great source of OPC is Maritime Pine Bark. I was interested because I took Maritime Pine Bark known as Pycnogenol back in 2005/6 as I went through treatment. The reason I took it was that I had read about it and I discovered that it was being used to help with breast cancer at the Penny Brohn Cancer Centre in Bristol in the UK. My breast cancer surgeon also mentioned it to me when I initially thought that I did not want to do the orthodox treatment. It is said to be a powerful immune booster. I think it helped me a lot.
http://www.canceractive.com/cancer-active-page-link.aspx?n=1906&Title=Resveratrol
(Resveratrol - The potential to beat cancer?)
It looks as though resveratrol is part of an extremely important combination with grape seed extract in the answer to what is called the French Paradox. This is the fact that the French consume more fat and alcohol per person than any other nation but have lower rates of heart disease and cancer. The answer lies in the high levels of natural plant compounds they also consume. One important combination is in the wine they drink - in the grape seeds and grape skins.
I think you will find the article on resveratrol very interesting because of the following:
"According to various M D Anderson studies, Resveratrol improves chemotherapy success and reduces side-effects; it also increases glutathione levels which help oxygenate and restore healthy cells. (Oxygen kills cancer cells).
Other studies have shown Resveratrol improved survival in gliomas. breast and prostate cancer patients, because it repaired the p53 gene which in turn repaired DNA and caused cancer cell death. It seems to have anti-tumour and anti-vascular proliferation effects (tumours need their own blood supply and it can stop this). And it stops metastatic action. So it doesn´t do much then?!"I hope you will find all this information useful. I find the CANCERactive information very easy to read.
I hope you will all have a good weekend and keep us posted about your treatment.
Sylvia
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I wanted to post this in response to your comment about 3 posts up, then I will read the next posts! Years ago my grandmother was diagnosed with colon cancer, she was 85 years old and healthy otherwise. The doctor recommended chemo. Grandma had a converstion with my dad (her son in law) saying she didn't think she should do the chemo because she was too old. My dad told her she should at least try it and quit if she started to feel too bad. SHe did just that, but was able to finish all the treatments. My grandmother passed away 17 years later at the age of 102! It seems to say no chemo after the age of 70 just is not right. I think we sometimes forget that not only can chemo possibly extend life, but it may relieve bad symptons of cancer even with the bad side effects of the chemo, it might be a better QOL. Am I making any sense? I often hear people say they won't do chemo because of the bad se's, but sometimes the cancer itself has really bad se's and chemo may make those se's a bit better.
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Hello bak94, Thank you for your post. I really appreciated what you said about your grandmother. I do agree with you. There should not be any age limit about chemotherapy treatment. It is all about quality of life. Going through cancer without treatment is probably much worse than going through the side effects of chemotherapy.
What are you doing as you wait for your radiotherapy? It is a good time to get your immune system as strong as possible.
Best wishes,
Sylvia.
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Sylvia,
That is very interesting information regarding the grapeseed extract. I have been using an organic Vit E and grapeseed oil on my radiated skin where I had the mastectomy ever since I completed the radiotherapy. It is very soothing and I have even begun to use it on my face and neck. It absorbs very quickly.
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Hello christina1961
Thank you for your post. I was interested to know that you have been using a combination of organic vitamin E and grape seed oil on your radiated skin where you had the mastectomy ever since you finished radiotherapy. It sounds as though it is ideal, especially as it absorbs very quickly. Did you buy it in a specialist store? I am sure there are women viewing the thread who might be interested. I know that vitamin E oil is very good for burns, especially the pure oil or the oil squeezed from capsules. I am sure there is something beneficial in all these herbs and spices.I hope you will have a good weekend and a good rest from work and treatment.
Are you busy preparing for Christmas? What is Christmas like for you? Is it a big event? I think it will be a frenzied weekend throughout the UK, as it is really the last full weekend before Christmas.
Best wishes
Sylvia0 -
Hello everyone
With Christmas fast approaching, I thought I would get my posting on information done today. The following is something I read on breastcancer.org. You have probably read the information, because I am sure that if you read and post regularly on breastcancer.org you will notice information links. The latest one on interest to all of us is results that have come from the 2011 International Conference on Cancer-Induced Bone Disease. I think we all know that breast cancer treatments, such as chemotherapy and hormonal therapy, weaken bones. If you remember, I have said in the past the importance of getting DEXA bone density scans to find out whether you have developed osteopenia or osteoporosis as a result of your treatment. Post-menopausal women are especially sensitive to this. This article was about younger, pre-menopausal women being treated for early stage breast cancer who broke a bone during or after treatment. Have a look at this article at:http://www.breastcancer.org/treatment/hormonal/new_research/20111201.jsp
I was diagnosed with osteoporosis about 2009 after I requested a bone density scan after I discovered I had lost a bit of height. I had another in 2010 and osteoporosis was still present. I am taking calcium citrate, magnesium and vitamin D for this and making sure I get calcium in my diet. I do not take any bisphosphonates but that is my personal choice. I do not take either the cheap calcium carbonate (chalk) that the NHS prescribes, as my information is that humans cannot absorb it. I do not consume dairy products for the same reason. Apparently there is more osteoporosis in countries where dairy products are consumed.
I think it is very important to keep an eye on your bone health.
That is all for today.
Sylvia0 -
I have just been re-reading our thread from page 1, as I wanted to get an idea of all that has happened since we began the thread. It is a bit like a review of the past year, except that it goes back into 2010.
I would very much like to hear from those who no longer post, but perhaps view, or who are now just getting on with their lives and do not need support. One line will do.
To my fellow Brits for whom I was motivated to start the thread, I would like to say Merry Christmas and a very Happy, Healthy, New Year. Enjoy your festive holidays and live every day to the full. Greetings to the following people:
FreddieDLH, jinglebell (Mary) (Happy Hogmanay), hymil, spammy61 (Pam), micheyd, PenelopeP, josephine_, Karen3, TEK2009 (Tessa), sam52, ElaineD, jenn-uk, debbyanzalo, janjaker31, and not to forget Gillyone, a Brit living in the US.
To all the wonderful American ladies who have given such support on this thread, I would like to say thank you and also wish you all a Merry Christmas and a Happy New Year. Enjoy your festive holidays and live every day to the full. Greetings to the following people:
brena (How did your trials go?), chilimac (Tonya) (How are you? How are your two sisters Natalie and Karin?), suelynn (How are you and your Mom?), eskimo53 (Carole), Britchick, Alif (Alison). Special thanks to bak94, suze35 (Susan), christina1961, and mccrimmon324 (Heather). All four of you are making a huge contribution to the thread.
Not to forget the huge contribution also from BernieEllen (Ireland) and Maria_Malta (Malta).
I hope I have not forgotten anyone and I hope I have not got you in the wrong groups.
Best wishes
Sylvia0 -
Sylvia,
That is the link for the grapeseed oil I've been using. I tried to copy the direct link but something happened and it wasn't active, so if you go to the website, just put in "grapeseed oil" and it will take you to the product. It is under $5 US dollars per bottle, very reasonable.
I will be celebrating Christmas at my sister's house. Unfortunately, we do not do anything at home as my DH does not like Christmas. I used to decorate and put up an artificial tree or a live potted tree which I planted later each year, play Christmas music, etc. but was met with much resistance so I just gave up some years ago. I like the opportunity to visit with my family, though, and it is exciting now because there are small children in the family again.
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Hi Sylvia. Happy Christmas and New Year to you
You information has been excellant.
I love Christmas
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I am new to the forum, having been diagnosed TN last month (Nov 22). Because the tumour is 4.5cm, I am to have preadjuvant chemotherapy - Epirubucine/Cyclophosphamide x 6, followed by 2x Docetaxel. If it shrinks the tumour, then hopefully lumpectomy and rads.
I had sentinel lymph node biopsy last week (ultrasound showed no invasion) and am hoping for negative result on 20th. Then begin chemotherapy on 23rd. It's been scary waiting for all this to be lined up, delays partly because there was a suspicious mass in the other breast on the US but both mammotone and MRI scan showed just dense tissue.
I am 65, and have been told by the oncologist that older women have less agressive TNC than younger women - would prefer not to have it at all!
Any advice would be very welcome.
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Hello margarett
I am very sorry that you have had to come here, but you are very, very welcome and we can give you a lot of support and get you through this. Please feel free to ask any questions about anything that is bothering you.I was particularly interested to read your post because your case is almost identical to mine. I was a couple of months away from my sixty-third birthday when I was diagnosed with breast cancer in 2005. At that time TNBC was not mentioned to me. I was merely told that I was oestrogen negative and progesterone negative and that it was not common for a woman of that age to be diagnosed with non-hormonal breast cancer and I was also told that, given my fit and healthy state, that I should not have breast cancer. It was only later that I was told I was HER2 negative and that was a good thing. I was told that being non-hormonal the prognosis was not good because they could not give me Tamoxifen after treatment, as that was of no use for non-hormonal cancers.
I did a lot of research and discovered the term triple negative breast cancer (TNBC).
I had the same preadjuvant chemotherapy as you, but in slightly different proportions. I had four sessions of combined epirubicin and cyclophosphamide, every three weeks, and then four sessions of docetaxel every three weeks. My tumour was about 6.5 cms and it did shrink a bit. I went through chemotherapy quite well and my main problem was fatigue. My hair started to fall out after the first session and that was the most upsetting thing for me, but I soon got used to wearing a wig. My hair started to grow back as soon as I finished chemotherapy, but it does take time. Everybody on this thread will tell you not to be afraid. You can get through chemotherapy. Just remember to gets lots of rest, drink plenty of water, and eat as healthily as you can.
We are all hoping that the chemotherapy will be successful. We shall be thinking of you tomorrow when you get the results of the sentinel lymph node biopsy. Please let us know how you get on. We shall all be thinking of you on the 23rd as you begin chemotherapy. I had just one node affected, the sentinel node.
I can understand how scary all this has been for you. We can all identify with this. The waiting is the worst and I write as one who delayed treatment for quite a while. I do not now think it is wise to delay treatment. You will find that once your chemotherapy begins time will go more quickly, although the chemotherapy treatment is the longest journey of all in breast cancer treatment.
I am sorry that you had to go through the worry of it being thought something was not right in the other breast. I recently went through the same fear at a recent check-up this year, when it was thought something was wrong in my left breast. I had my right breast removed in mastectomy surgery in 2005, along with seven lymph nodes under the arm, of which only one was affected. I was also a problem of dense tissue in the left breast.
You will get through all this. Be encouraged with the fact that it is now six and a half years for me since I was diagnosed.
I was encouraged by knowing that your oncologist said that older women have less aggressive TNBC. That was something I did not know, although it is known that, in general, cancer is less aggressive in older people.
Did you oncologist mention any likely causes for your TNBC?
I hope my post will help you.
There are other women on the thread who have been through breast cancer treatment this year - chemotherapy, surgery and radiotherapy. Some have recently finished but some are still going through their treatment, so you can get lots of support.
We are all thinking of you and know how you must be feeling. Keep looking ahead.
Best wishes
Sylvia0 -
Hello christina1961
Thank you for you post and the link about the grape seed oil. I think also that we should all be eating grapes with seeds in them. Most of the grapes on sale are seedless!I hope you will have a very good Christmas with your family. Christmas is really for children, so I can understand how you will enjoy Christmas at your sister's house. I can understand your husband's point of view as well. My husband and I are on our own so we do not do very much now. I did enjoy Christmastime when my parents were alive and we all used to gather. Now my two younger brothers go their own way. Enjoy your Christmas.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your post. I am glad to know that you appreciate the information that I post.I like your new photograph. I can see the hair coming back to life.
I hope you have a very enjoyable Christmas.
Best wishes
Sylvia0 -
Hello sam52
I just wanted to say that I hope things are not too bad with you and that you will manage to rest during the break from school.I thought you would be interested to know that I have been keeping an eye on a couple of threads where discussions are ongoing about osteopenia, osteoporosis, DEXA bone density scans, bisphosphonates etc. The threads are
Bone loss
http://community.breastcancer.org/forum/120/topic/779399Fosamax and teeth filling
http://community.breastcancer.org/forum/120/topic/777246There was also a recent notice came up on BC.org about this dreaded osteonecrosis. I am so concerned about bisphosphonates. I would appreciate your comments I think that it is something that needs discussing on the TNBC thread, as well as the others.
I am having a lot of problems with my gums.
Greetings for the festive season.
Love
Sylvia0 -
Hello all, especially Margarett....don't have much time to write, but you will see that everyone here can help you with advice and support..as Sylvia said, the toughest time is the waiting, and although chemo is no picnic, as least you know that you are having it for a very specific purpose, that you have a schedule to follow and there is an end in sight. My history very similar to yours, I am 56 years old, I too had neo-adjuvant chemo, bilateral mastectomy, path report which then showed that chemo had destroyed all traces of bc in the breast tissue and lymph nodes checked, and now half way through 3 weeks of radiotherapy. Most side effects from chemo and surgery have gone, I'm feeling well, and my hair is growing (although I still wear a wig as hair is very thin and wispy). Regarding chemo do take all anti-nausea drugs offered to you, drink lots of water, rest as much as you feel you need, but also go out and exercise if you are not too tired. The time will pass...bye for now, bye Sylvia and all, take care all of you and will write in later on in the week to tell you about my Xmas menu!
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Welcome Margarett but sorry at the same time.
I have had tremendous help and support on this thread. So never think you are alone.
I won't say it's any easy journey but knowing you have friends here is everything.
Lots of love, Bernie
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Hi Sylvia, haven't been on much. Dave is away, working, Crhistmas and New Year but i have family and friends coming so won't be alone. Big plus - Dave's brother is a brilliant cook so i am going to be spoilt.
Love to you
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Hello Maria_Malta
Thank you for your post and your encouragement for margarett. I am glad to know that you are feeling well, that your hair is growing and that you are not suffering too much from the side effects of chemotherapy and radiotherapy. You gave good advice about taking the anti-nausea drugs and especially about drinking plenty of water and taking as much rest as you feel you need. All our breast cancers are individual as are our bodies, so we may all react differently.I shall look forward to hearing about your Xmas menu. Are you having a family gathering at your place? I remember your saying once that you had grown up children.
We shall all look forward to hearing from you later this week.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for posting to support margarett. I know that she can count on all of us here.I know your Christmas will not be quite complete without your husband, Dave, but you can always have another Christmas on his return. You are so lucky to have Dave's brother there and that he is a brilliant cook. Please let us know what he cooks up for you. I am glad that you are going to be spoiled, because you have earned it after the year you have just gone through.
Do you have any special rituals for Christmas Day? What kind of presents make your day?
I imagine you to be a woman of great spirit and liveliness.
Love
Sylvia0
