Calling all triple negative breast cancer patients in the UK
Comments
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Hello bak94
Thank you for your post. With reference to Aromasin and Tamoxifen, if I were you I would just ask why he is choosing one rather than the other. That is an easy enough question for him to answer. I understand that both have side effects. I have heard of women putting on weight when taking Tamoxifen. I would have thought that if you have not had a period since before chemotherapy, you would be classified as post-menopausal. I know there are young women whose periods stop due to chemotherapy, but often come back sometime later. That happened to the daughter of a friend of mine.If your doctor is speaking too fast, ask him to slow down and, if he gets too technical, ask him to simplify. You must not be intimidated by your doctor.
If you do not want to run the risk of problems with your hair, ask for something different.
Have a good weekend and have a good think about how you want to progress with everything that is facing you.
Best wishes
Sylvia0 -
Hello sam52
I am just popping in to say thank you for your post. I hope you are doing well. You will soon be 11 years from diagnosis. You have done so well. I hope you will have time to relax this weekend. Are you taking anything as a preventive? Everyone seems to be taking something. I am still drinking loads of green tea and eating bitter apricot kernels. I have just started taking a teaspoon of bicarbonate of soda in a little water on information I read in icon magazine. I am also taking calcium, vitamin D and magnesium supplements for the osteoporosis. I have no problems with the parathyroid. It will be three years on November 11th since I had the parathyroid surgery. I have no trace of a scar.Love
Sylvia0 -
Hello linali
Thank you for your post. I was so sorry to read that you have had a bad chest and an eye infection. I do hope you are feeling better. You must take very good care of yourself.I was so sorry to read that you are having problems with your son, who, if I remember correctly, has Aspergers syndrome. I do hope this will get sorted out as you do not need stress.
It looks as though you may be having the bug that was hitting everybody here this year. Get plenty of rest if you can.
I really appreciate your kind words about all the links and information that I have posted. It does take a lot of time and effort, but I do so want people to be informed. If I know it is appreciated it makes it all worthwhile. There is so much information to take in. I try to simplify it all. At least on the thread we can read over the postings any time we like. I know there is a lot of publicity out there about chemo brain, but I think the secret of overcoming that is to keep the brain very active and challenged.
I can understand that your infections will have stopped your practice for the mini-marathon, but never mind. They do say that you should not exercise if you do not feel up to par. You will eventually catch up with everything.
I should not worry too much about your histology report. I am beginning to think that being given your pathology report may be causing patients unnecessary anxiety and worry. I am now glad that I was not given mine. There is probably too much medical jargon in them. I remember being told on diagnosis that the prognosis was not good, but then I also remember, after chemotherapy and surgery, my oncologist and breast cancer surgeon together greeted me at my appointment with smiling faces, and said I had a good pathology report. I then had radiotherapy and I am still here nearly seven years on. I would not want to see my pathology report now, because anything problematic in it would just worry me.
If I were you, I would think carefully before taking Herceptin. I cannot believe how easily they appear to be dishing out Herceptin these days, when not so long ago women were having to go to court to get it.
Perhaps you can explain what this low + 1 or 2 means. Does it mean that patients have HER1, but only weakly, and have HER2 but only weakly? I thought Herceptin was for HER2+ patients. Personally I do not like the sound of the side effects. I get the impression that the experts think that just because they have a drug, they should just start dishing it out. I am concerned about the way they dish out statins and steroids for example. I am very wary of all medication.
I was most interested to know that you went for your first union meeting in two years on Wednesday night. That union is certainly fighting for worthwhile causes. It is a pity that it was so badly attended. I cannot understand the apathy of people. In the UK people whinge so much but will not take any action. I was so glad to know that you had a go at the top officials. Often I think they get carried away by their positions and feelings of self-importance that they forget their members. Too may of those officials live too high off the hog and need to come down to earth a bit. They are like the politicians. Once they get elected they forget their members and get carried away by their lifestyle. Unions are supposed to protect their members and governments are supposed to look after their citizens. We have an awful government in power here in the UK. It is attacking the worst off in society, depriving poor children of school meals, making people homeless and taking away benefits from those who need them most. This government could not care one bit about elderly people. All we have now is the Queen's diamond jubilee and the Olympics. I get so angry about all this extravagance and think it is about time we became a republic and became citizens and not subjects.
You sound a woman just like me and I am so proud that you spoke up against cuts and how they had affected you as a patient, and how your job would be affected. You did right to speak up.
Can you remind me what the biopsy was all about? I do hope you will get good news from it.
I hope all will go well for your son.
Thinking of you and hoping you will manage to relax this weekend.
Warm thoughts are coming your way.
Sylvia0 -
Hello Sylvia
Sorry I've not posted anything for a while, I got to the stage where reading about BC was making me feel worse, so I had a bit of a break from looking on the internet.
I've been reading the Jane Plant book again and putting my energy into improving my diet! I've invested in a juicer but must admit that I'm still finding it hard to get as many veg as I need each day. I'm pretty good with fruit though. Started eating Tofu, which is better than I thought it would be. I have eliminated all dairy produce from my diet. I have been using soya milk for a few years but am now having soya yogurt and soya spread too. I don't feel as though I am depriving myself of anything. It will take a bit of time to experiment with things and get my new diet fully established.
I had an appointment with the Oncologist on 11 April. He was not in clinic that day so I saw his registrar. As far as she could tell they had got rid of the cancer but recommended Chemotherapy as ‘insurance'. I have an ‘intermediate' risk of it recurring. She put my details into a database and said the percentage benefit for me having Chemotherapy was approximately 13.5 (comparing me with cases as near to my prognosis as possible). Apparently they recommend Chemo for anything over a 5% benefit. I am supposed to go on 8th May to have blood tests etc, and then go back on the 10th for the actual Chemo. They propose to give me 6 lots of Docetaxel and Cyclophosphamide, three weeks apart.
I went to the Genetics Clinic at Sheffield Children's Hospital yesterday to have a blood test. The doctor explained about the BRCA1 and 2 genes, and that, because there have been three people in my family (including me) who were diagnosed under the age of 50, there is a chance I could have one of the defective genes. If so, I would be referred to a gynaecologist to have my ovaries removed. Also my brother would have to be tested because he has a daughter. If he also has the gene his daughter would be referred for MRI scans on her breasts from the age of 30 and for ultra-sound scans on her ovaries. My son could be tested in the future if he has a daughter. The results take 2 to 3 months to come through.
I'm still frightened about the Chemotherapy, particularly having an allergic reaction or something extreme like that! I am having to remind myself that lots of other people have got through it successfully. However I need to ask more questions about why they have prescribed Docetaxel and whether anything less toxic would be available. They are treating me as if I'm pre-menopausal even though I have not had a period for 8 months. Also I would like to know whether it would be a high dose. I also want to ask about scalp cooling.
I am back at work on Monday for a week. The Chemo will start the following week so I may well have to be signed off again from then, I will play it by ear.
I hope everything is OK with you. I haven't had a chance to read any of the recent postings but will have a look when I've got more time. I will let you know how I go on with the Chemo once it starts.
Bye for now, Karen
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I just want to say that I am taking a break for a while. This past year you have all been so kind and supportive and I don't know what i would have done without you. I feel that I need to try and put Cancer aside for awhile.
All my love
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Hmmm...Bak, that is strange that he wants you on aromasin. Here's what happened to me. I had just turned 50 at diagnosis with extremely regular periods but some hot flashes before my cycle at times, so probably peri-menopausal. I never took any hormones at all. After the first neoadjuvant chemo, no more periods. Then they found the 5-10% receptors in the residual tumor at surgery. My local onc wrote me a prescription for Arimidex. In the meantime, I went out of state to a triple negative specialist for a second opinion seeking additional chemo due to the residual tumor found at surgery. When she saw that I was taking Arimidex, she immediately changed my prescription to tamoxifen. She wanted me to take tamoxifen for 2 years, then switch to an AI like Arimidex. When I went back home, I notified my oncologist that she had changed my prescription. He actually had me come down to see him for an office visit for the sole purpose of apologizing to me and telling me that I should have been given tamoxifen from the beginning - he had just forgotten that I was not menopausal. I haven't had any tests regarding ovarian function, but I suppose the estrogen could start to be produced again at any point. I asked my local oncologist if taking my ovaries out and going on an AI would be beneficial and he said that that might be done some places, but he didn't think I needed to do that.
Sylvia, I have been so busy with work that I have not yet registered for classes but the deadline is coming up. I need to make up my mind soon or just wait until fall. Finances, maintenance on the house, etc. all got so behind during the past year. I think it might take me two years to catch up....
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I do need to put a call to my mo. I am very busy with school and work. He probably put me on an ai because I am going to have a hysterectomy, but I will call to make sure. I have to have the hysterectomy because of my brca 1 status, my mom died of ovarian cancer when she was 56. I am her2 +1, not sure if I was tested for her1? My test was done twice though, doc wanted to make sure. I appreciate all the info. I am usually very proactive but I have just been frustrated and stressed about the whole cancer thing and have been trying to find a balance with everything else. Work has added just too much for me, and I am only working a couple days a week. Between school (geology and writing), taking care of the animals, house stuff, work and doctor appointments I just run out of time. I can't imagine how those with young children do it!
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Hello Karen_Sheffield
Thank you for your post. I can understand your not having posted for a while. You must not make cancer the main part of your life. Keep it in the background as much as you can. I think people are suffering from too much information and too much conflicting information from the internet. You do not need it. While you are going through treatment you just need to concentrate on that, surgery, chemotherapy and radiotherapy and forget all the rest. I feel that pathology reports may also be turning into a source of stress rather than relief.I was interested to know about the way you are trying to improve your diet. We seem to be doing much the same. I eat a lot of fruit and vegetables, but do not juice anything. As long as you fill half of your plate with vegetables, a quarter with protein and a quarter with a carbohydrate, you cannot go far wrong. I do not eat any dairy but have fresh unsweetened soy milk enriched with calcium, soy spread, but very, very little, Sojade plain live culture yoghurt and beans, pulses, seeds and nuts, no meat, no poultry, a little fish and some prawns.
If I were you, I would not worry myself with all that percentage stuff. We are all different. As for chemotherapy, it is said to be very beneficial for TNBC. Do not be afraid about it. All of us posting on this thread have survived it.
I hope all goes well and that you will be able to start chemotherapy on May 10th.
I was surprised that you appear to be having only two chemotherapy drugs. Does this mean you are having three months of cyclophosphamide every three weeks and then three months of docetaxel (Taxotere) every three weeks? I had more ot less the same regimen but I had epirubicin with the cyclophosphamide. Are you having the cyclophosphamide and docetaxel together over six months?
I think you are wise to get genetically tested because of your family history. It seems to be usual procedure to remove the ovaries in case of BRCA1 or BRCA2. I do hope everything will go well for you and your family members. Remember that, although not common, men can get breast cancer too and that the defective genes can run through the men in a family, as well as the women. Any sons would need to be tested.
Please do not be afraid of chemotherapy. Go to it as relaxed as you can. Did you not have chemotherapy the first time around? I remember that you said that you were on Tamoxifen for five years.
My oncologist told me that docetaxel was not as harmful as paclitaxel. Both of these drugs are known as taxanes. Docetaxel is Taxotere and paclitaxel is Taxol.
I do wonder why you are being treated as pre-menopausal. There seems to be some confusion about when menopause starts.
With reference to chemotherapy again, your oncologist should have informed you that the dose you are given depends on your weight and your height. I remember being asked for these details before my treatment began and asking why. You will also find that the chemotherapy drugs are made up only after you have arrived at the hospital and your blood has been checked to make sure you are OK to proceed. The district used to come to my home to take blood the morning before my chemotherapy treatment. This was sent to the hospital and the results were at the chemotherapy clinic when I arrived. If all was well you were hooked up and the chemotherapy drug was administered intravenously, along with anti-sickness drugs, and I think a saline drip. All this is a long procedure, so the day is rather long. Take something to occupy your mind while this is going on.
I am told that the scalp cooling is rather an ordeal for some, but it apparently does save hair loss. My oncologist was against it because of the risk of infection.
I hope you will have a good week at work. I was glad to know you may not be working during chemotherapy. Do you have a stressful job? The success of chemotherapy depends on getting a great deal of rest, drinking plenty of water and being strong in mind and telling yourself you will get through it. Any discomfort you have you will find there are ways of dealing with it. Make sure you keep away from crowded places and people with colds etc. Your immune system will be low, so you will be sensitive to infection. Get any dental problems sorted out before you start your chemotherapy. This is what I was advised, as well as being injected against flu and pneumonia.
I am fine. Catch up on the postings when you can and if you get a chance, start reading from page 1. There is a lot of information on this thread, especially about chemotherapy.
Wishing you all the best.
Sylvia0 -
Hello BernieEllen
I can understand that you need to take a break for a while now that you have finished treatment. You need to make breast cancer a small part of your life. I do hope we shall not lose sight of you completely. There are some ladies on the thread, such as Karen_Sheffield and Dulcie, who are both now facing chemotherapy and will want the support that was so important to the group of fine ladies who recently finished their treatment. That support is so important to all those just starting on this long journey.You do not have to post necessarily about cancer. You can talk about anything you like. Have a good break, but pop in when you can and brighten the thread with your wit, wisdom and vitality.
Warmest wishes.
Sylvia0 -
Hello christina1961
I think it is all getting a bit confusing about hormonal treatment. From the information I have here, from several women I know that were diagnosed with hormonal breast cancer is that, first of all, whatever their age, they seemed to be put on Tamoxifen. These women were 50 or 60+. One woman was on Tamoxifen for over five years and the others were told they would start off with Tamoxifen for a few years and then switch to aromatase inhibitors such as Arimidex or Aromasin. I suppose it all depends on the individual oncologist. On the whole, I get the impression that Tamoxifen is for pre-menopausal women and Arimidex and Aromasin for post-menopausal women.I do hope you are having a bit of relaxation amidst your busy work schedule. Let us know what you decide about your studies, but do not overdo things.
Try to have a relaxing weekend.
Best wishes
Sylvia0 -
Hello bak94
You and christina1961 sound really busy. Do try to find time to have some relaxation. I bet you bak94 will be so glad when all this is behind you. Just take one thing at a time. I suppose the next challenge will be the hysterectomy.Can you explain what HER2+1 means? I was just told that I was HER2-.
I do hope you will be able to find some balance in your life and can put cancer in just a small corner.
How is the school work going? Try to have a good weekend.
Best wishes
Sylvia0 -
Thank you sylvia, I will still read this forum and keep in touch. You have been such an inspiration for me.
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Hello Sylvia
Thank you for your post.
In answer to your question about taking anything as a preventative, I am doing the following:
Vitamin D, magnesium, calcium (only once a day,rather than the twice a day prescribed and sometimes not at all),omega 3 oils,grapeseed extract and selenium ACE.
I also drink green tea, usually 2 cups a day, and try to eat a lot of broccoli! Like you, I eat very little dairy - I was dairy-free for 6 years, but then got an immense craving for cheese and probably ate 6 years worth of cheese in 6 months! I don't buy it now, or I am very tempted.....I substituted rice milk for cows' milk immediately after diagnosis and have never gone back.
So far, so good......
About HER2 : most of us will have been diagnosed by a method known as IHC (immunohistochemistry) which gives the overexpression as 0, +1,+2 or +3.Both 0 and +1 are regarded as negative.A score of +2 is borderline and it is recommended to retest using a more accurate method known as FISH; a score of +3 is positive. When I was diagnosed, testing for HER2 amplification was not carried out here in UK; however, as I took part in a trial for chemo, my tumor was tested some months later.Now, of course, everyone is tested.It is possible that some places use the FISH test as a matter of routine - probably this is the case in the US anyway.
With love,
Sam
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To clarify - FISH stands for fluorescence in situ hybridization ...it is more specific and sensitive than IHC and tests for (onco)gene amplification.You can weakly over-express on the IHC test, but not have gene amplification with the FISH test - thereby showing a false positive result.
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Hello sam52
Thank you for your posts. I was very interested to know what you are doing as a preventative. It looks as though we are both doing the same as far as the osteoporosis goes. I am also taking the magnesium, calcium and vitamin D just once a day, along with a glass of enriched soy milk and sometimes some extra soy milk with bite-sized shredded wheat or steel-cut oats.We are doing the same in that we both take omega 3 capsules. I was interested to know that you are taking grape-seed extract. I have not done that so far. Have you noticed that it seems impossible to get grapes that are seeded?!!! I do not take selenium ACE but I do take a multi-vitamin every other day that seems to have most things in it.
I see we are both on the green tea. Do you have the decaffeinated kind? I drink that most of the time but have ordinary green tea in the morning. We are also probably eating enough broccoli for England! Have you tried what is supposed to be the super broccoli from Marks & Spencer? I looked for it in the store in Exeter but could not find it.
I can understand how you got a craving for cheese. Raymond was a great cheese lover but we do not buy it now. We think that what is good for preventing breast cancer in women is probably good for preventing prostate cancer in men. We have tried the rice milk and like it, but have gone for fresh soy milk, because it is fresh and is enriched with an absorbable calcium. We also buy the unsweetened one. It is Tesco's own and not as adulterated as Alpro. We do not have a choice of supermarkets in Exmouth.
It is good to compare notes especially as you had hormonal breast cancer and I had the triple negative. It just shows you how we can all do the same. Are you avoiding soy because you were hormonal?
I also take an iron supplement from time to time.
Thank you so much for your information about HER2. I found it really interesting. On the IHC method, does it go up above +3? I have to assume that I must have been 0 or +1. There was a time when I thought of asking for a copy of my pathology report, but decided against it when I read a lot of posts and saw the anguish it was causing a lot of women. I decided to remember that my oncologist and breast consultant told me with beaming smiles that I had a good pathology report.
Thank you for explaining FISH.
I am sure that the women reading this thread will find this all useful. At least they will be able to ask their medical team whether IHC or FISH is being used at their hospital.
I hope you are having a relaxing Sunday. It has been pouring down with rain all day and the wind has been very strong. As someone said on the television this morning, we are in a drought but we have flooding!
Love
Sylvia0 -
Hi Sylvia..just had a weeks stay in hospital temp went up..and neuts where 09...02..now 07..so next chemo they are giving me an injection to stop the drop...i have been so ill since my chemo...then today i had a shower and when i took the towel off my wet hair....my hair was glued together like a mattress...so ..i had to cut it all off myself...what a hatchet job i made too!
I need to know more about my cancer..i 'googled' everything i could ..but now i cant deal with anything..and tonight ..i have developed a deep stabbing pain close to the top of my right leg..its almost like sciatic pain...but i know it cant be..the hospital just told me to take paracetomol for now!
I have been told about 'trials' but with having Atrial Fibrilation they dont think its doable..
I hope all is well with you?
Dulcie xx
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Hi Bernie ellen ,
I would have posted earlier but internet down for a week , the mast crashed in the bad weather!
I wish you luck and will miss your posts and photos but I also fully understand. I am so lucky to have the support centre to visit and at a discussion with some of the other women about bringing info and guest speakers many didnt want oncologists or medical people. In their words they came to forget about cancer and do the fun stuff with maybe dieticians etc.
Wishing you peace of mind and happiness and fun .
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Hello Dulcie,
I was so sorry to hear that you had been in hospital for a week after starting your first chemo. I do hope you are feeling much better now. Did your doctors have any explanation as to why your white blood cell count has dropped so low. Just try to relax. You can get through chemotherapy and you will. There are plenty of ladies on this thread to encourage and support you and to tell you to keep looking forward. Do you have a date for your next chemo. I know that you started on April 17th.I know how upsetting it must have been when you hair started to fall out. The hair loss is something we all dread, but we gradually get used to the idea, and we concentrate on the fact that it will grow back. My hair started to fall out after the first chemotherapy treatment and the rest soon followed. Get yourself a nice wig as it can make you feel very glamorous.
Dulcie, please do not spend too much time on the internet. I am beginning to feel that there is far too much information, and you do not need it. What exactly are you looking for on the internet that you feel you need to know? Please remember that you cannot believe everything you read on it. You can exhaust yourself sitting at the computer and searching for information. You need all your energy to get through chemotherapy. All you really need to know is that you have been diagnosed with breast cancer and that there is treatment. You are on the first stage of that, chemotherapy, which is the longest and probably the most tiring. You can help yourself so much by having a lot of rest, drinking plenty of water in between chemotherapy treatments and eating balanced meals with lots of fruits and vegetables. You need to avoid crowded places because your immune system will be low and you will pick up infections very quickly.
I was lucky to get through chemotherapy relatively easily, but I did work very hard at keeping myself healthy and getting plenty of rest. You can do this and I am keeping my fingers crossed that you will not have so many problems with your next chemotherapy treatment. When you get to the oncology ward, just relax, let the chemotherapy nurses look after you, and just have a sleep or read a funny book. Take someone with you and take great care of yourself during that first week. Take the medication that is given to you.
I do hope the pain at the top of your right leg will go away. If it does not after taking paracetamol for a short time, get in touch with the hospital.
You should have a breast care nurse allocated to you. She is supposed to keep in touch with you to make sure you are alright. Do not be afraid to phone her with any problems you may be experiencing.
What kind of trials have you been told about? Are you thinking of going on a trial while you are going through chemotherapy? Do you not think this would be too much for your body? What kind of treatment or medication are you having for your atrial fibrillation? I know a few people who suffer from this and last week one of them went for a procedure that he has regularly. Apparently, under anaesthetic, the heart is stopped and restarted. After that the heart beat becomes regular once again. I think in the past he took beta-blockers. Are you doing any of this? I do not know your age. By the way, remember that your chemotherapy dose depends on your height and weight, so it is essential to get the right dose.
Rather than frighten yourself with information on the internet, come on the thread and ask any questions you may have or any tips for getting through chemotherapy. There are some fine ladies here, not long out of treatment, who can tell you of their experiences and give tips better than any book. I am thinking of christina1961, bak94, mccrimmon324, LintRollerDerby, BernieEllen, Maria_Malta, Karen3, sam52, linali, and Karen_Sheffield.
Please remember you are not alone. In addition to the thread, you might like to try a local support group.
Post as often as you like. Ask as many questions as you like. Do not be afraid to let off steam if you feel the need.
Wishing you all the very best.
Sylvia0 -
Hello linali
I was sorry to know that you have been unable to post because the internet was down for a week.I am sure that BernieEllen will pop in from time to time, especially if she feels that she can be of help and support to someone going through treatment.
I do hope all is well with you and that you are still benefiting from your support centre. I can understand that women there want something other than talk about cancer from oncologists and medical people. There is a limit to what these people can say anyway. You do need to keep everything in perspective. You must not let cancer take over your life and become an obsession. On this thread I welcome anything you feel you need to say.
We have just had a bout of very bad wet weather and the seafront has been like a desert this week. The sand from the dunes has blown all over the road along the promenade and I saw a car stuck in the sand. Cars stuck in snow I have seen, but until this week I had not seen them stuck in sand!
All the very best to you, linali.
Sylvia0 -
Hello everyone
A few snippets of information that I have picked up this week.You may like to read one woman's story of her journey through breast cancer treatment. It was in the Good Health section of the Daily Mail on Tuesday May 1st. It is entitled A tot of brandy and a bellylaugh - the quirky ways of coping with chemo. The article is by Charlotte Dovey.
The article is about renowned portrait photographer Gemma Levine's experiences with breast cancer. She was diagnosed with breast cancer in July 2010 at 73. The article talks about how breast cancer is much more than the treatment. There are all the side effects of the treatment.
Gemma has written a book, Go With the Flow, about her experience and advice from experts who have treated her. In the book some of the experts share their advice on how to survive the cancer journey - physically and emotionally. The profits from this book will go to the Maggie's Cancer Centres. These are said to be very useful places. Are any of you in the UK using them? Two of my nieces went on a sponsored walk for the Maggie Cancer Centre in London a few years ago.
The following are some of the tips and advice that were given under the following headings.
Brandy can boost your appetite.
Eat a small meal before chemotherapy, because chemotherapy can cause nausea.
Get anti-sickness pills from your doctor.
Sip a fizzy drink (mineral water or lemonade).
Drink a little brandy or sherry to boost your appetite if you do not feel like eating, and provided that your medical team OKs it.
Get someone to help you cook light meals.
Choose soft foods, such as sorbet, crème caramel, soup, or food with sauces or gravy, especially if you have a dry or ulcerated mouth, which is one of the side effects of chemotherapy.
Drink at least two litres of fluid a day if you have a dry mouth.
I found canned pineapple or freshly juiced avocado very refreshing.
Claim VAT back on your wig.
Suck an ice cube during chemotherapy.
Warm herbal teas are soothing.
Delay breast reconstruction.
A big laugh helps painful swelling.
Under this heading there are tips on how to deal with lymphoedema.
You do not always have to be positive.
Do not massage your feet.
I have just given you the headings for most of these, but I do urge you to read the two pages on all these tips. They are pages 48 and 49.
For those of you going through treatment, I think you will find these practical tips from experts and the experiences of a woman diagnosed with breast cancer much more beneficial than all the sometimes complicated information that you may find on the internet about breast cancer. There are too many women I feel getting obsessed about what caused their cancer and cures. None of us on these threads will probably ever know what caused our breast cancer. I do not feel it will be one cause anyway. I doubt if there is a cure in the near future, and I do not feel it will be a magic bullet. When all is said and done, what use is all that information when we are going through treatment and want to alleviate any side effects.
Finally, there was another snippet of news in one of the papers this week. It was entitled Blood Test Gives Early Warning of Breast Cancer. This is all about a simple blood test that could help predict breast cancer decades before the disease strikes. Scientists have found the first strong evidence that molecular changes which can switch genes on and off, set the stage for breast cancer many years before it is diagnosed.
I shall leave you to read the details of this for yourself. I think it was in the Health pages of the Daily Express of May 1st and is by health correspondent Jo Willey. It is all about a strong association between molecular modification of a white blood cell gene called ATM and breast cancer risk. It is also about a chemical effect called methylation, which acts as a "gene switch". I do remember a mention back in 2005 when I was diagnosed about TNBC and the gene p53 being switched off by a process of methylation and causing the development of tumours.
I hope all of you have had a good week. It has been strange here in Exmouth. Lots of rain has fallen, yesterday was like a summer's day and today it is cold and wet. That is English weather for you!
Wishing you all well.
Sylvia0 -
Hello UK Triple Neg ladies!
Just wanted to say salutations to other women on this side of the pond...
I am in London, not undergoing treatment at the moment, but am waiting for results from Year 2 screenings (mammagram US & MRI as I'm under 45 with dense breasts). I was to find out today, but now appointmetnhas been pushed back to Tuesday, after the bank holiday... As It's my birthday tomorrow,I really wished to have the results today... am anxious when I think about it, as the radiographer's face changed when scanning over my remaining breast...I'm trying not to let it hamper my day... but to be on safe side, am just having a quiet one, and will celebrate more with friends after the results day.
sylviaexmouthuk - weather's been pretty awful of late down here too... Thanks for the info on the Express article- I will try to read it online.
Well wishes for the Bank Hols everyone
X Buddhawolf
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Hello BuddhaWolf
Thank you for your post. I am so glad that you have found this thread, which was created for UK ladies with triple negative breast cancer.I think we all know how you feel as you wait for the results of your screenings. How awful for you to have hoped for the results today, only to be told you will now not have your appointment until Tuesday. It makes me wonder whether medical staff really appreciate the anguish and fear we all experience as we sit outside a consultant's door, waiting to know our fate. Just try to put it to the back of your mind and enjoy the Bank Holiday weekend despite the awful weather that is forecast.
Try to enjoy your birthday and spend it with those that are dear to you, and Happy Birthday from all of us on this thread. Try not to focus on the radiographer's face. It might be that your anxiety created an expression on his/her face. I am surprised that you were not told the results of the mammogram as today the results are shown and given as soon as the mammogram is taken. At a check up in October, it was thought I might have a problem in my remaining left breast. That happened on a Friday and I had to wait until Monday for a mammogram and ultrasound. On that Monday I had the mammogram and the radiographer told me everything was normal. For the ultrasound the consultant commented as she scanned and said everything was fine. Perhaps they are waiting until they read the MRI scan.
We are all thinking of you and wishing you the best.
I read your details and I cannot believe what you have been through. It seems such a terrible case of negligence. I was wondering which hospital you are attending, as I thought that probably the best cancer hospitals were in London. You have Barts, the Royal London and St Georges etc.
I really liked the quote on your biography. Please keep in touch and let us know how you get on.
Best wishes
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Hello everyone,
I am posting to wish you all a relaxing weekend and to say that I hope you all do something relaxing. I hope you have all had a good week. To my fellow Brits I want to wish you a happy Bank Holiday weekend. It looks as though it is going to be cold, more hot chocolate weather than ice cream. To those going through treatment and not feeling well I just want to let you know that I am thinking of you. If anyone has anything of interest to share, please do.
Warm Thoughts,
Sylvia
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Hello Everyone,
I have just gone back to the first two pages of the thread in the way of revision as I like to do things properly. There is a lot of information on those two pages, especially for the newly diagnosed. They are well worth reading,especially for those just joining a thread that will be two years old old on September 12 this year.Have a look at them. I found it useful to refresh my memory.
I was wondering what has happened to those who posted on the first page. Pop in and say hello if you still view- Freddie DLH, jinglebell, hymil, Spammy61, micheyd. Karen 3 was on that first page and I know she still posts and gives lots of support on this forum.
I hope you are all having a good Sunday.
Best Wishes, Sylvia.
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Hello again, Page 2 mentions 53BPI TNBC has low levels of this.This can make it less responsive to radiotherapy. I was wondering whether patients are now being tested for this. Page 2 also mentions different types of breast cancer and information about the P53 gene. Have a look.
Sylvia.
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Hello everyone
I have just discovered that the moderators appear to have changed the format of the forum and threads since I looked this morning. I am not impressed with the changes. I would like to know what you think.
According to log in page, for the thread, it says that josephine posted on May 6th but there is no sign of her post. I do not know whether this is josephine who posted in the past, or whether this is a new josephine.
If someone of this name did post, please post again.
I wish people would not change things just for the sake of changing. The latest format is not as clear cut as the other one.
Best wishes from an unimpressed Sylvia
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Working on things. Hang tight, and please do continue to give us your feedback!0
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Really don't like it.....
If it ain't broke, don't fix it??
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Hi guys, Im not TN but I am from the UK, so I find this thread interesting. Do you mind if I pop in from time to time? :-)
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Hello Iz_and_Lys_Mum
Thank you for your post and you are quite welcome to post here as often as you like. Although I started this thread for TNBC in the UK, we do have quite a mixture of posts. We are all in this together and fellow Brits are especially welcome. No matter what kind of breast cancer you have, support and information are of great importance.
Judging by the date of your diagnosis, you will have finished treatment and I hope you are in fine form.
I saw that you were diagnosed with DCIS. Did you have the standard treatment of surgery, chemotherapy and radiotherapy? Are you on any special medication?
If you have any questions you want to ask, I am sure someone on the thread will be able to help you. If you just want to let off steam, that is fine too.
I do not know which part of the UK you are in. Here in the south-west we are still getting nothing but rain. It sure makes gardening problematic!
With best wishes fro all of us.
Sylvia
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