Calling all triple negative breast cancer patients in the UK
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Hello everyone
I thought I would post this snippet of information that I found under UK Health Care, UK standing for University of Kentucky. It was about Tomotherapy, which is the most advanced and versatile radiation system available for a wide variety of cancers. Its unique CT scanner delivers radiation continuously from all angles around the patient, whereas the wide beam procedure, which is standard use, can only deliver from a few angles.I was wondering if any of you know anything about this. I do not think it is in use in the UK, but I may be wrong, but we always seem to be behind the US. I suppose it could be in use for private patients.
Is this in use in the US?
Finally, a snippet about the new cancer buster superbroccoli. Apparently, on Tuesday October 4th a new strain of broccoli called Beneforte and costing £1.99 a pack, went on sale at Marks and Spencer. It will be available in other stores next year. It looks the same as ordinary broccoli but it contains three times as much of a health boosting nutrient. This nutrient includes the nutrient glucoraphanin, which protects against cancers and heart disease. In the gut this nutrient is converted into a compound, sulphoraphane.
This compound reduces inflammation, stops uncontrolled cell division associated with early-stage cancer and boosts disease fighting antioxidants.
Beneforte raises sulphoraphane levels to two to four times that of normal broccoli. It was developed in this country by breeding and not by genetic engineering.
It looks as though it is even more important to get broccoli as a well established part of our diet.
A message for newly diagnosed patients, especially in the UK. Please do not be shy about posting. You can write about anything you like, from diagnosis, surgery, chemotherapy, radiotherapy, reconstruction, scans, after treatment visits and all the emotional aspects of this disease. It is so important to get support and information, and you will certainly get it from the informed and compassionate women on this thread.
Best wishes to all of you.
Sylvia.0 -
Hello everyone! I just love this thread!!! Bernie, your cottage is gorgeous and I love the red flowers. I will have to find some photos of my garden and post them. Its funny, I used to be critical of my garden and compare it to larger, more diverse gardens but now that I have missed an entire spring and summer of gardening I realize it was beautiful after all. Due to my illness and a drought here, I lost an azalea bush (but it was one that never did very well) and all the flower gardens have grown up into weeds.
My CT scan was clear!!! YAY! Now I just have to get the brain CT before the clinical trial.
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Hello christina1961
I am so glad that your CT scan was clear and am sure that will make all of us on this thread very happy for you. It is one problem less to worry you. I hope you will not have to wait too long for the brain CT scan and the clinical trial. I hope you will give yourself a treat as you put this problem behind you.
It has been a chilly and windy autumn day here in Exmouth. I have just made hot chocolate for me and my husband - healthy and organic of course. I buy Green and Blacks organic cocoa made with the finest organic fairtrade cocoa beans and has no sugar. I make it with fresh unsweetened soy milk and it is a real treat.
Keep looking forward. Best wishes.
Sylvia
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Hi christina1961, i love gardening. This year it went wild and it looked lovely. I have an area up the back that i leave wild with to attract the butterflies and othe bugs and insects. I grow a lot of my own vegetables and this year hope to plant raspberry canes. At the moment the puppy has great interest in digging so i have barricades everywhere.
Where do you live?
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Hello everyone
I thought some of you might be interested in the magazine called ICON. It is all about cancer and it is published by CANCERactive, which is the Uks number 1 holistic cancer information charity. Some people call it an integrated cancer charity. You might want to read about it and there is quite a lot of information under CANCERactive. I would be interested in knowing what you think about it. You will find it at:http://www.canceractive.com/index.aspx
Best wishes
Sylvia0 -
Hello all, just checking in briefly to say I'm still waiting for Wednesday to come round of course, but it's not too bad, especially as I'm trying to do as many enjoyable things as possible..yesterday I went out to a totally DELICIOUS Indian restaurant..Indian not the best anti-cancer food probably, apart from the turmuric, but I figure it did me a world of good psychologically..ha ha!
BernieEllen, lovely photos of garden and pretty cottage...I'll take a few photos of my garden (more of a yard actually) and try and post them here so you can have a look.. My 2 tortoises are out and about, a sign that the summer is coming to an end as they march around, bask in the sun (too hot in the middle of August), eat a lot of food and prepare for the winter. It's still quite warm but not suffocatingly so, so it's actually a beautiful time of the year while still being warm enough to swim.
Christina1961, happy to hear about yr good results. Sylvia never heard of Tomotherapy..but thanks for CancerActive link..had a quick look and it looks v interesting. I wonder if the superbroccoli will ever make it to Malta..I hada large salad for lunch including a lot of steamed broccoli.
I was wondering whether apart from homeopathy, any of you know anything about ayuvedic remedies... a friend brought me a jar of Chyavanprash, which is meant to strengthen all body tissue. I didn't take it while I was having chemo, but I figure it can't do any harm now can it?
Hope you all have a good/peaceful/wonderful/restful/calm/rewarding, circle where appropriate weekend.
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ps: arnica cream/ointment is certainly used for healing, and is particularly good for bruising of any kind.(Arnica also comes in the form of powder/pills, and can be swallowed, but is strong and shouldn't be taken without consultation..at least that's what I've read).Calendula cream is also very good for healing, and I've bought a tube in anticipation of next week's surgery.
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Hi Maria_Malta, so jealous, Indian is my favourite food but everything still tastes odd.
Everyone have a great weekend
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Bernie and Maria,
My husband and I love Indian food as well. I'm 11 days PFC and I feel like my taste buds are just about back to normal. My tounge still feels funny every now and then but the past few days food is tasting really good, this last time it didn't seem as bad with the bad taste as some of the others.
Hope everyone has a good weekend.
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BernieEllen & mccrimmon, haven't you both finished chemo now? My taste buds returned slowly after my last hit, but I think they're pretty much back to normal (after being 8 weeks out). I can even enjoy a normal cup of tea again..
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Maria, I'm 12 days out from my last chemo and my taste buds seem to be back to normal. Makes me very happy, I'm even enjoying my morning cup of coffee right now.
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Hi Marie_Malta, finished chemo 6 weeks ago done 10 rads of 30. Slowly starting to feel normal. Hubby says i was never normal.
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Oh yes, sorry BernieEllen, I'd forgotten you'd started rads! Tell your husband that being normal isn't necessarily a virtue
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Number 4 complete, 3 to go! Asked my mo what I was going to do after surgery and rads and he said more Avastin! For a complete total of a year on avastin, so I won't be done until August 2012! Kinda comforts me to be continuing on something, but also make me realize how likely my cancer is to come back and that could mean chemo for life. I know one must adjust to that when they are stage 4, but it is so difficult to think chemo for life! I do have good days, just have to be careful, guess that is how it is. My heart goes out to all of you that are on chemo for life, and I know it is not easy. I feel bad about worrying about that happening to me, as many have been going through it for years what I have been doing for just months. It all just sucks, at any stage, Everyone worries, even the super early stagers and it is just not right that we all are facing this, but I guess that is how life works. I know I sound depressed, but today I had a great day! I had so much fun with my hubby running errands and not thinking of cancer, it was truly wonderful.
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BernieEllen, love the pics! What a beautiful place,
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Thanks bak94. Where do you live.
Maria_Malta, would love to see pictures of the tortoises. We holidayed in Malta a few years ago - absolutely lovely
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Yes, I second that! I would love to see photos of the tortoises. They are such interesting creatures. Where I live, in the middle southeastern US, we have box turtles on land, some are very brightly colored with orange eyes, and water turtles, sliders and snapping turtles.
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Hello Maria_Malta
I was glad to read that you are enjoying yourself while you wait for surgery on Wednesday. It will soon be here now.It was interesting to read about your tortoises. I shall look forward to seeing photographs of your garden.
I had never heard of Tomotherapy either, but I get the feeling that we are not necessarily told about these things, especially in the UK. There has been big investment in all the equipment used in cancer treatment, so no doubt the powers that be will want to get their moneys worth and not discard them easily for new technology. I also remember researching proton radiotherapy last year for my uncle.
I shall be doing some postings about CANCERactive later.
I have heard of ayuvedic treatment and remedies. The first book I read when I was diagnosed was called The Cancer Directory by Dr Rosy Daniels, who practises privately in this country. She does a lot of treatment based on ayuvedic medicine and treated patients with something called Carctol. I do not think I would take anything without doing thorough research on it. I have not heard of Chyavanprash. What is it made of? I think we could all do with things that strengthen the body.
Calendula cream is a very good product.
BernieEllen: I hope you are having a good weekend and we shall all be thinking of you this coming week, as you continue with radiotherapy.
mccrimmon324 (Heather): I hope you are having a good weekend and making the most of your days as you wait for your BRCA test and radiotherapy. Waiting can be very tiring. I am glad to know you are enjoying your morning cup of coffee! I drink nothing but green tea. I have a mug of Sencha, Japanese green tea in the morning, and Clipper decaffeinated green tea throughout the day.
bak94: I hope you are having a very restful weekend. I was reading about how tired you are and how you fell asleep at work. It sounds as though you could do with some time off. It must be exhausting trying to work while going through chemotherapy. I do not think I could have done it. Get all the rest that you can and concentrate on getting through chemotherapy and do not think about surgery and radiotherapy for the moment.
I really feel for you and I can understand how you feel about being on Avastin until August 2012, but I am sure your willpower will get you through it. It should be of some comfort to you that there is treatment on offer. Just take one thing at a time and do not worry about what might happen after August 2012.
Try not to bottle up all your feelings. Just post here and let us support you. Worry and anxiety, not to mention depression, can hit at any time and any stage, and we all understand that. We are all in the world of breast cancer, be we just diagnosed, stage 1 or 4, grade 3, recurrence, metastases, or in remission and there is nothing we can do about it. Whatever hits us, we somehow learn to cope.
I am so glad that you had a good day on Saturday. It does wonders to switch off cancer and think of other things. I hope you are having a good day today. I remember the words of an old song of my parents generation. The words were "Pack up your troubles in your old kit bag, and smile, smile, smile".
Why not tell us a bit about Seattle. I know it is not that far from Canada (Vancouver BC). I went there on a trip once.
christina1961: I hope you are making the most of your days as you wait for your brain CT and clinical trial.
I was interested in what you said about the turtles. Tell us a bit about life in Tennessee.
Suze35: I think I am right in saying that you are starting your clinical trial this week. We shall all be thinking of you and wishing you the best.
I hope you are making the most of your days and having some enjoyment.
I am having a restful weekend, as I have been very busy lately.
Best wishes
Sylvia0 -
Hello everyone
I Googled Chyavanprash and thought I would paste what I found.
http://www.ehow.com/about_5499433_chyawanprash-side-effects.html
My own opinion is that it is too high in sugar and I would not eat it. We have to remember that, for breast cancer patients, sugar (and for me that includes honey, dried fruit etc.) is the enemy and promotes tumour growth.
Thinking of you all and hoping for some postings from Brits to join in on this very friendly and supportive thread.
Best wishes
Sylvia
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Hello everyone
I have been reading carefully some of the information on the CANCERactive website and I do hope you will read it, as I think it has a lot of important things to say that might be of help. Please remember it is only supplying information not advice.Here are a few snippets that I found useful and I thought they might be of interest to you.
Do your homework.
It is important to get as much knowledge about your breast cancer and I think we have been doing a good job on this between us. We all need to collect as much relevant information as we can. You will remember that I said knowledge is power sometime ago and I truly believe this. On the website it says that it is useful to find a friend to help do this, as it is too difficult to do it alone. My friend was my husband. This thread can also be your friend.
It is useful to join a local support group.
Always get a second opinion if you are in doubt.
Do not be afraid to be "pushy". It is your life and it has to be in your hands.
Try to understand what might be maintaining your cancer. On this site it says that is especially important if you are under sixty. There could be some toxin or something in your lifestyle or environment that has caused and is still causing your cancer. Keep reading all you can about possible causes.
Remember that your cancer is as individual as you are.
Cancer is multi-causal and rarely caused by one factor.
Cancer is a multi-step process. You can read all about this in the book "The Rainbow Diet" written by Chris Woollams, who heads CANCERactive. In his book he covers seventeen processes to the formation of cancer. I particularly liked something he says on this site and it is "Cancer is not a cockroach to be trodden on in one action. There will never be a single drug, a single vitamin, shark cartilage that can "cure" cancer. To believe so is naive".
I chuckled when I read "shark cartilage", because it is something that I tried when first diagnosed.
Understand that cancer is a disease of the whole body and it merely manifests itself in certain areas.
Prepare a total plan.
Cut out everything that might be driving your cancer.
Clean up your liver and restore your immune system.
Make sure you do not have parasites. Cancer Research UK have stated that 15 - 20% of cancers might be caused by viruses. Viruses are parasites and drain the body of nourishment and weaken your cells and immune system. Apparently, Vega testing is more reliable for detecting them than medical tests.
I do not know what a Vega test is. Does anybody have an answer?
The most common UK parasite is an excess of Candida Albicans (common yeasts). From what I have been reading, if I were doing chemotherapy now I would get myself tested for Candida, because, apparently, chemotherapy makes you susceptible to this.
Build a good dietary programme. Avoid all dairy food from cows. There are a lot of details about diet under Building a Dietary Programme. Please take the time to read this as it is very very interesting.
Take natural supplements and there is a list of things to restore your immune system, to clean up your body and also the best researched compounds that can tackle a step in the cancer process, such as vitamin D3.
Exercise.
Body energy.
Mental state. A person's mind is a big factor in illness, apparently far more than doctors can begin to understand.
These are just the bare bones of the ten pages which cover the Active 8 Programme. As you read it, there are other parts of the site to link to. I am particularly interested in mental state and breast cancer, because I feel that it was at the heart of my own diagnosis. On the site there is also a link to Build Your Own Personal Prescription (Learn all you need to know to build your own personal prescription to help you fight cancer).
That is all for today from Exmouth. Our weather is strange. It was quite cold yesterday but today it is very mild and the seafront is very busy. There were even people swimming in the sea.
Make the most of what is left of the weekend.
Best wishes
Sylvia0 -
Hello everyone
I hope you all had a good weekend and that you are ready to face whatever this week brings.
Maria_Malta: There is not long to go now until you have surgery. Are you resting tomorrow or do you have to go in for all the pre-op preparation? We shall all be thinking of you.
BernieEllen: I hope your day at radiotherapy was not too tiring. That is another session behind you.
bak94: I do hope you managed to have a really restful weekend. I have nothing but admiration for you for the way you are dealing with everything a second time round. I do hope you have had a better day at work and that your boss has shown more kindness, compassion and understanding. I am concerned about your having to be around chemicals while going through chemotherapy. Take it easy.
christina1961: I hope the radiotherapy was not too bad today. That is another session behind you. Be sure to let us know about what happens with brain CT and clinical trial.
mccrimmon324 (Heather): It must be hard for you going through the waiting for next stage of treatment period. The good side of this is that it enables you to build up your strength. I hope you are having some stress free time.
Suze35: I hope you have had a good weekend. You are strong and courageous and we all admire you so much. Good luck on the trial which I think you will begin on Wednesday October 12th.
It is the start of a busy week for all of you and you will be in my thoughts all the time.
To TEK2009 and josephine_ we have not forgotten you and are sending you lots of love and best wishes.
Sam52: I have been thinking of you a lot and thinking about all the support we gave each other when dealing with our hyperparathyroidism. I am busy pushing for a DEXA scan to see what is happening with my osteoporosis. I think this idea of getting one only every five years is ridiculous. How are you getting on with the osteoporosis?
Best wishes to you all.
Sylvia.0 -
Ugghhh, just typed a message and lost it!
Short version: Sylvia, thank you for the info, I am looking at the active8 website, very interesting.
BernieEllen. I live in Seattle. I love it. All the water, mountains and greenery around. Lots of outdoor activities.
Hope everyone is doing well. Just found out a decision has been made on my ssdi application, but online did not tell me what the decision is! I called and it is a federal holiday! I will call tomorrow, the website did say an official notice will be mailed out. Hopefully they will tell me when I call back again tomorrow!
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Thank you, Sylvia, for the information on the Canceractive website. Developing our own personalized prescription for health is a very interesting concept. Walking is the first part of my prescription.
The city in which I live is surrounded by mountains, and the Tennessee River is also a part of the valley, with a riverfront development that includes an aquarium, restaurants, an art museum, and a riverfront park named after a local WWII hero, Charles Coolidge. Some of the central downtown buildings are 80-100 years old; many of these are brick, four to six stories high, and of course there are many much newer buildings. We have all four seasons here, including a bit of snow in the winter, and have very diverse plants and trees. I've heard that the area has as many species of plants and trees as a tropical rain forest. The trees here are just starting to turn color; the hickory trees will be bright yellow and some of the last colors to fade. We have a community college where students transfer after two years or obtain occupational degrees in the medical, veterinary, construction, dental, and other fields - and we also have a public four year university with some masters and doctorate studies. Our city is popular with cyclists and rock climbers and is also located within an hours drive of the Ocoee, a river popular with canoeists and whitewater rafters. Our native animals in the surrounding forests include black bear, wild boar, beavers, raccoon, deer, fox, and wild turkey. We also have coyotes, even in the city.
We live in a 1920s bungalow on a large lot on a small rise with mature pines, cedar trees, and hardwoods. The area was formerly a dairy farm, and civil war battles were fought here even earlier than that. My neighbor used a metal detector on our yard and found about 8 civil war bullets during one day. It is within a 10 minute drive to downtown, and you can hear the interstate noises at night. I've always liked the feeling of being close to the city, but have always enjoyed privacy so it is perfect. I can see the sunset from the kitchen. At night when viewing the full moon through the pine trees, I'm reminded of Japanese woodcuts. The weather is very nice this time of year - about 75-80 during the day and into the 40s at night. I hope I haven't written too much - but I'm learning to appreciate things more than I ever have, and part of that is appreciating where I am.
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Maria, thank you! I was so relieved Friday when I got the CT scan results.
Bernie, I love a wild look to a garden - saw some books last year that termed it "cottage gardening" - my place - in Tennessee - is very much like that - I have part of my place in just wild meadow, another part is completely wooded. I also love the idea of attracting wildlife to a garden by planting wildlife friendly plants. I would love to know what is required for raspberry canes - I have such fond memories of my grandfather's garden with raspberries. Are they hard to grow?
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bak & christina, where you live sounds amazing.
Will look up info to send on about the raspberries. I pick and eat the wild blackberries here.
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Hello Sylvia
I am typing this very quickly in a couple of spare minutes at school......
I am sorry that I have not been more communicative, but I always seem to be very busy; to answer your question about a DEXA scan - the surgeon who performed my parathyroidectomy told me that it was prudent to wait for 3 years before getting another scan, since there could be improvements in bone density which might take that long to become apparent. So I have decided to follow his recommendation; it was about 18 months ago that I had the surgery, so I am thinking it must be about 2 years for you.
With love,
Sam
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Hello all...there are so many things I'd like to comment upon (so much info!) but my mind is in a state of suspension...here but not here...in anticipation of surgery tomorrow...so Sylvia thanks for good wishes, BernieE I promise to send photos of garden (and tortoises if I find them!) when I come back, Bak hope decision is the one you deserve, mccrimmon hope you're feeling better every day, and best wishes to everyone else! Will let you know how things go as soon as I can!
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Good luck tomorrow Maria.
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Just found out I have been approved for ssdi. It is a strange feeling, one of relief, now I can truly focus on me and not worry about money. But by being approved, I realize what a serious situation I am in:(.
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Maria,
I hope all goes well with your surgery tomorrow!
Christina
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