Calling all triple negative breast cancer patients in the UK
Comments
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Hello sam52
I am afraid I shall not have enough time or energy to send you a reply today, but I shall make it a priority tomorrow morning.
I do value your opinion so would be interested to know what you think about the latest information from CANCERactive.
Hoping you are feeling much better.
Sylvia x
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Hello again sam52
I have managed to send a PM to you. I am now going to relax with a mug of green tea and some 90% Lindt dark chocolate.
Always thinking of you.
Love
Sylvia
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Aaah, Sylvia - a woman after my own heart!
I also drink green tea (usually mixed with jasmine) and every day after dinner a square of Sainsbury's 'Taste the Difference' Belgian dark chocolate.....
Thank you so much for your PM; I have just seen your post above with the CANCERactive information - I will read it when I am able and give you my opinions. It looks to be a very informative site and one to which I should subscribe.
It's 1am now, so maybe I should go to bed!!
With love,
Sam
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Dear Sylvia, old posters and also new ones,
I'm sorry if I might have given the impression of having abandoned you over the last few months, but apart from being busy I also feel I need to focus more on getting on with my own life...which is not to say that I don't want to support our cause, but I do it in a different way..am now a member of 2 breast cancer organisations here, one a support group, and another a pressure group to encourage government to improve breast care facilities and treatment in general. However, I think of you often, and come in to read the latest news on this thread and one other, but very rarely post.
I've been thinking checking in again for some time now as I approached the anniversary of my last session of chemo, 12th August 2011..I can hardly believe a whole year has gone by... and I thought I wanted to encourage those of you who have just started, or are in the middle of the chemo journey... last year at this time I was crawling up my stairs to bed, knees 'burning' and experiencing an exhaustion impossible to describe after 8 sessions of chemo (4 of FEC and 4 of Taxotere) prior to my bmx in October..and I think I can safely say that now I feel that I have really returned to normal, apart from very very tiny reminders of last year's 10 month trial (slight tingling in my toes, particularly of my left foot, stiffness in the knees...but neither of these hamper my normal activities, and I can ignore them most of the time)..
Sylvia, thanks as usual for your indefatigable work...you have helped so many of us! I haven't read all the posts, just the last few pages, but I found the canceractive links interesting, as is the reference to IGF1 and fasting. The trouble is that there is so much information out there, that you often come across contradictory advice...one piece of advice which is both substantiated and which most scientists seem to agree upon is the fact that weight gain seems to be one of the contributing factors in the development of bc, which is why of course those of us who might be overweight are advised to lose it if possible... like you however, I find that the idea of fasting for a few days and then feasting is not one which I feel is automatically a good idea...I think I'd rather eat less generally, possibly making up for a 'feast' by eating more lightly the next day, but not an out and out fast of days at a stretch. I'm also concerned by all the info we are bombarded with all the time with vitamins/eating patterns/food supplements etc which are supposed to drastically lower cancer recurrence, but which turn out to be relatively small scale studies which are still at a very early stage of testing. I'm not a 'skeptic', and am ready to consider anything, but I don't easily believe in conspiracy theories either.
My approach is a common sense one, and while I flirted with the idea of taking a wide range of supplements when I first finished treatment, now that it is summer here and we get lots of sunshiine, I'm not actually taking anything extra, and will probably only take fish oils, omega 3 and some multivitamins in the winter, preferring to get as much as possible from the food I eat. Although unlike Sylvia I'm not vegetarian I eat very little meat, and when I do it's white not red meat..a lot of fish, tons of fruit and veg..virtually no dairy apart form a tiny bit of skimmed milk in my tea max twice a day, and one probiotic yogurt at breakfast, muesli, lentils and pulses, virtually no wheat, ie bread, pasta, pastries, virtually no sugar...but if I'm out and I feel like a sweet dessert then I'll take it guiltlessly, as I do enjoy a a glass of two of wine, or a pizza, but since these are the exceptional days in a period of a whole month I think these 'infringements' are insignificant. I also have sprouting flax powder every day with my cereal, drink lots of green tea and try and remember to use turmeric in my cooking, although I think I forget more often than not...like you Sylvia, I enjoy dark chocolate (min 80%) as a treat. Apart from this diet I do yoga 3 times a week, and in winter I walk most days...it's too hot to walk here now so I try and swim at least 3 times a week. I have always believed strongly in exercise, and now I find it even more beneficial as not only has it helped me regain my pre cancer fitness, but it has really helped my state of mind and really helped me keep positive. Since January I've lost about 4.5 kilos, painlessly, slowly but steadily...no crash diet by any means, but I hope to have lost another 2 or 3 by Xmas...
As to Chatterbox's question (hello Michael!) whether breast cancer has changed me, I'd say absolutely, how can it not have done? But I don't think I'm more nervous or anxious, on the contrary I find that I'm more able to keep calm and patient over the silly trivial things...and I'm also even more convinced that I must live for the day and enjoy and appreciate every minute of my day, however mundane it might at first appear. I recognise that this might sound really trite to those of you who are going through awful times with treatment, or waiting anxiously for results and I certainly don't mean to make light of your experiences...but for me at the moment at least, having come through treatment, I want to enjoy the present as I've no idea what might be in store for me in the future.
So those of you on chemo, keep positive, you should be in a better place next year!!!
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Hello Sam
I was glad to know that you are also a green tea drinker and a dark chocolate eater. I think we have got a lot in common. I also love that green tea with jasmine, but I have to be careful about caffeine as I am really sensitive to it, so I drink lots of Clipper decaffeinated green tea. I sometimes have caffeine in the morning and really like Clipper pure green tea, especially the leaf version. Pukka green tea is also excellent. I think the Pukka tea is sencha green tea, but when I can find it I buy Jacksons Sencha green tea. You can see that I am a green tea addict.As for the chocolate, I find it relieves stress. I also drink Green and Blacks cocoa made with fresh soy milk on a regular basis. Yesterday I saw in one of the newspapers that it is supposed to be protective against dementia!!!
I have been reading more on the CANCERactive site. There is so much information there. I shall look forward to your views, especially about chemotherapy.
What are you reading these days?
I think it would be very worthwhile to subscribe to CANCERactive.
Wishing you all the very best.
Love Sylvia.
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Hello Maria_Malta
It has really made my day to hear from you and to know that all is well with you and that you are getting on with your life. I understand that perfectly.I was glad to know that you are now a member of two breast cancer organisations, one a support group and another a pressure group to encourage government to improve breast cancer care. Support groups are very important and so are pressure groups. Keep up the good work.
I am so glad to know that you still come and read this thread. I try to keep everyone informed and offer comfort and support. I think when someone stops posting I tend to imagine that something has happened. In the past there were really valuable posts from Josephine and TEK2009 and then suddenly they disappeared. I know they both had serious problems and so you cannot help but wonder what has happened to them.
It is hard to imagine that it is now a year ago since you finished your last session of chemotherapy. I shall never forget you, BernieEllen, christina1961, bak94 and mccrimmon324 (Heather). You were all going through treatment at more or less the same time and there was such support going on. They are all still going strong.
I am sure that your words of how you felt a year ago going through chemotherapy and how you feel today will be a great source of encouragement and comfort to those now going through the chemotherapy journey.
Thank you for your kind words. I do spend a lot of time trying to make this thread a success, so much so that I am now trying to find some time to myself to get back to some reading which has always been so important to me.
I do think that CANCERactive is worth reading. There is so much information there. It is true that sometimes we suffer from information overload and I suppose we can only decide what we are going to believe and what we are going to reject. At the moment I have been reading quite a bit about chemotherapy treatment and it is not very encouraging. If you have time to read the CANCERactive article about chemotherapy I would be most interested to know what you think. The gist of the information is that chemotherapy treatment promotes regrowth of the tumour. That is a frightening thought but I cannot see there is an alternative at the moment. I am quite sure that without my chemotherapy before treatment, I would not be alive. At least I think I am quite sure. Would I still be alive if I had just had a mastectomy? Then there is radiotherapy. I know that radiation causes cancer, but does it help us stay alive in the short term? Can we survive cancer with just surgery? They do say that doctors themselves would not have chemotherapy or radiotherapy.
As for the IGF-1 and fasting, I tend to think that it is better to eat small regular meals.
I know they say that being overweight is a contributing factor to developing breast cancer and I know that being overweight is not healthy, but the women who had breast cancer in my neighbourhood, and that includes me, were all slim, healthy, active women.
I have doubts about vitamin supplements etc. I believe in taking control of those aspects of our life that we can and we can control what we eat and what we do in the way of exercise. I do agree that healthy eating is extremely important.
I think, Maria, that we have very similar diets. I am not a vegetarian. I eat fish, mainly wild salmon, cod and haddock, and I eat cold water prawns for selenium and other trace minerals. I do not eat any meat of poultry and no dairy. Like you, I eat tons of fruit and vegetables, beans, pulses, nuts and seeds, and healthy bread. I also eat pro-biotic soy yoghurt. Like everyone else, I sometimes stray. I also keep off sugar and do not drink any alcohol. My biggest treat is 90% dark chocolate. I am looking for even higher percentage!! Like you I try to put turmeric in my cooking. I have found that it is very good mixed with organic hummus in a sandwich.
It sounds as though you keep physically active and I do congratulate you on losing 4.5 kilos this year. I hope this will inspire others on the thread to lose weight if they need to. I find that gardening makes me feel good. Sometimes I get a few aches and pains but they soon pass.
I do hope you are enjoying your holidays from school. Once again, I was so happy to hear from you and please pop in when you can, even if it is just to say hello.
Warm thoughts are coming your way.
Sylvia0 -
Hi is this forum still active? Diagnosed at 40yrs old on the 6th July 2012 at North Manchester Hospital with IDC Stage 3 Grade 2 breast cancer, 2.5cms and triple negative. Had a Sentinal Node Biopsy on 27th July and started Chemo 10th Aug at Christies, FEC. Then surgery and radiotherapy part of my treatment plan.
Allergic to steroids so looks like I can't have the prescribed Taxotere part of the Chemo Part 2. Not sure what that will mean..meanwhile taking one day at a time.
Thanks for listening, all happened so fast a whirlwind.
Kathy
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Kathy3383,
Hello. I wish to welcome you and say Yes the site is very active.
Like yourself, I was diagnosed at 40 with Triple negative too.
I hear you so much when I hear you mention 'whirlwind'! However, You will find a lot of support on this forum and throughout the site too. Any question you may have along this journey, someone will take the time to answer.You are not alone.
Warmly Buddhawolf
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Having problems posting..both yesterday and today system hasn't allowed me to press 'post a reply'... and only way I got cursor onto this page was to first 'submit' and then I was allowed to enter content... does anyone have any idea why?
Have edited my treatment details so I don't have to keep repeating my details every time, hope they come up.
Welcome Kathy
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Hello Kathy3833,
I am so glad that you have found us on this thread that I started nearly two years ago, especially for womem in the UK, but we welcome anyone with breast cancer, and that includes men, and from any country.
I would like to reassure you on behalf of all the great people on this thread that you can get through this and that we shall all support you. You will get through this.
I do hope that all goes well with your chemotherapy. The FEC is standard treatment and stands for fluorouracil epirubicin cyclophosphamide. You mentioned that you are allergic to steroids and so you will not be getting the docetaxel (Taxotere). That is a pity, really, because it is very effective against TNBC. I suppose your oncologist will think that you will be too unwell without the steroids. Are you having the FEC with no steroids? If so, how are you coping? You usually get some steroid treatment with the IV chemotherapy treatment and then take a couple for a few days.
I do not like steroids and consented only to a minimum and on condition that these stopped if I wanted to. I had few effects from the chemotherapy except tiredness. I had EC every three weeks for three months and docetaxel (Taxotere) for the next three months.
After chemo like you I had surgery and radiotherapy.
If you are not having the Taxotere are you just having the FEC for three months and that is it?
Post as much as you like and ask for as much help as you need. It does all seem a whirlwind in the beginning but you will soon settle down to a routine. For chemo focus on getting through one treatment at a time.
Wishing you all the very best.
Sylvia
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These photos were sent to me by a friend. I hope you will enjoy them. I think they are excellent. I do not know who took the photographs.
Sylvia
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Hello everyone
I was a bit concerned recently when browsing through some threads to discover that there appeared to be some confusion about bone nucleide scans and DEXA scans.These two scans are completely different. A bone nucleide scan is given to see whether cancer has spread to the bones. You are exposed to quite a lot of radiation, are radioactive for a few days afterwards and advised to stay away from children.
I had this scan before and after treatment.
A DEXA scan is a much more simple scan and is used to measure your bone density and to see whether you have osteopenia or osteoporosis. This scan exposes you to a much lower level of radiation.
Because your breast cancer treatment can cause osteoporosis etc. it is probably advisable to have a DEXA scan.
I hope this will clear up any confusion.
I do hope everyone has had a good week and that any of you with problems will seek help and support here.
Thinking of you all.
Sylvia0 -
Hello Maria_Malta
I cannot understand why you have had problems posting. Everything is working normally for me.
Has anyone else had this problem?
The weather is miserable here today. It has been wet and windy and worse is forecast for tomorrow!
Fond greetings coming your way from the UK.
Sylvia
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Great photos Sylvia, and I appear to be able to post, so problem solved without having done anything. Don't rightly understand but as long as things are back to normal that's fine...the mysteries of the internet!
Regarding steroids, I was only given them with Taxotere, but never had them with FEC...I think the attitude here is to try to do without at first and to take them only if a reaction is registered (for FEC...with Taxotere steroids are given automatically).
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My eye doctor (retina specialist) and my oncologist have conferred - now I get to add an eye doctor appt and a brain MRI to the mix of Round 2 Chemo next week. I believe it's a CYA thing . . . but will serve as a baseline test for down-the-road-recurrence-hunting . . . so I am trying to be positive. It's frustrating . . but I continue to realize I am having such an easy time I should not complain. . . so, I will not complain and whine. I feel normal, this third week after chemo. Things are o.k. I am loved.
The oncologist is also switching from dexamethosone to prednisone for the steroid before during and after chemo. . . prednisone and I play well together (except that I will not sleep -- I offered to come in the oncologist office and clean, organize files, archive historical data, etc. . . because I will not be able to sleep) . . . the final decision will occur on tuesday when I arrive for Round 2 . . .
Even though I haven't written anything for days (my 10-year-old-granddaughter spent a few days before school starts - kept me busy when I wasn't at work) I read your posts often and am educated, uplifted, inspired and grateful to have your listening ears. Hope I can offer positive, helpful things too. Good night all.
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Hello Maria_Malta
I am glad that you liked the photographs and that you now have no problems with posting.Thank you for your information about steroids. I suppose all the oncologists act differently. I certainly agree that if you can do without steroids during chemotherapy then it is all for the better. I do remember when I was going through treatment the steroid of choice seemed to be dexamethasone, but I think some had prednisone. There are two words, prednisone and prednisolone. According to my medical book, prednisolone is used on people who cannot metabolise prednisone.
Have a good weekend, Maria, and keep in touch.
Best wishes
Sylvia0 -
Hello FernMF
Thank you for your post. I do hope all will go well with your appointment to the eye doctor and with the brain MRI scan. I do understand what you mean by a CYA thing. Over here, in the UK, I just had a CAT scan and a bone nucleide scan before and after treatment. Since then nothing but regular physical check ups and two-yearly mammograms.I am glad to know that you are coping so well with chemotherapy. We shall all be thinking of you next week when you have your second session of chemotherapy.
I suppose it makes sense to have you take the prednisone for all your treatment, rather than mix it with dexamethasone. It is a pity though that it makes you unable to sleep, as you need your rest.
I hope you enjoyed the time you spent with your 10 year old granddaughter.
I am glad that you are still benefiting from the posts, as that is what the thread is all about. I am sure that the positive way you are dealing with your chemotherapy treatment is an inspiration to all of those going through treatment that they can get through it all. The way you are dealing with it is a credit to you, especially that you are also working.
Enjoy your weekend and we shall all be thinking of you on Tuesday.
Best wishes
Sylvia0 -
Hello everyone
For those of you who may not have looked up the links I gave in the week, I thought I would post a few quotes from CANCERactive about chemotherapy."The sad fact is that traditional chemotherapy is limited. The basic aim of most is to 'poison' rapidly dividing cells, and unfortunately this includes rapidly dividing healthy cells too."
This is why you loose your hair, eyebrows and eyelashes.
"In many cases the chemotherapy drug seems to decrease the tumour initially, but then the tumour starts to grow again."
"The reasons for this are usually explained because
The drug kills cancer cells, but not all of them are dividing during the treatment - so some escape.
Cancer is much more that just having cancer cells in one location - it is a multi-step process, including metastatic precancer activity. The chemo is simply incapable of taking out all the steps.
Cancer cells become resistant to the chemotherapy agent. Several research studies have looked at the last point and we have covered those in Cancer Watch - for example, the study that showed cancers produced a protein designed to 'shut out' the chemo agent."
"New research by the Fred Hutchinson Cancer Research Center in Seattle (Nature Medicine) goes further. It suggests that chemotherapy cannot work in the long term because when chemo agents attack healthy cells, they produce a protein WNT16B which is taken up by adjacent tumour cells, causing them to increase their growth and invasion rates, and also giving them immunity to further chemo attack."
If you want more information the link is:
http://news.yahoo.com/chemotherapy-backfire-boost-cancer-growth-study-164516832.html
"Put simply, despite good work at the outset, chemo actually promotes the growth of the cancer in the long term.
These findings were confirmed using chemo with prostate cancer, breast cancer and ovarian cancer."
You can imagine the serious implications of all this information for the cancer drug industry.
Having read all this, you can feel somewhat defeated, but I choose not to have that feeling. For the moment chemotherapy is all that we have and it does seem to keep us alive for a long time, even when it is metastatic. I have survived over seven years thanks to the treatment and a lot of people live for many years even with metastatic breast cancer.
To end this, I would like to say that reading some of the threads there appears to be some confusion about the word metastasis and the plural metastases. The simple meaning of these words is 'spread'. Breast cancer can spread to other parts of the body, especially the brain, lungs, liver and bones. When this happens you are said to have metastatic breast cancer. You do not have brain cancer, lung cancer, liver cancer or bone cancer.
This is not to be confused with metaplastic breast cancer, which is a rare form of breast cancer.
I just remains for me to wish you all a very relaxing and fulfilling weekend and to say many thanks to the posters, such as Dulcie, sam52, Iz_and_Lys_and_Mum, BuddhaWolf, Michael, Lint_Roller_Derby (Betty), FernMF, linali (Lindsay), BernieEllen, youngmommy, Maria_Malta, and our new friend Kathy3833.
You all do a fine job on this thread. Keep it up.
Thinking of you all.
Sylvia.0 -
Good evening Sylvia
I am sorry for the delay in replying, I have had a bit of an eventful week. My car broke down on the way to the airport Monday morning and I had to park up and get a taxi. I caught the flight by the skin of my teeth.
My cousin saw her oncologist on Wednesday and has been told that there is nothing more they can do for her; she has weeks, possibly months to live. She had been fortunate that she responded well to any treatment she had. I don't think she ever had a remission but her cancer was fairly indolent, however her liver now seems compromised by disease progression. The clinical trial she was on used Cetuximab. She was very well whilst on it but started having reactions and they had to stop the treatment. In a normal setting they would have reduced the dose but in a clinical trial that was not an option. There was talk of her having it privately but that doesn't seem to be an option now.
On the self perception issue I found Janette changed to a much less confident person. She used to have a great sense of humour and that almost disappeared, she would take people very literally. She also didn't want to go away on holiday, she was happier at home. Mind you she did have the drive and confidence to open a successful shoe shop, Janette loved shoe's, I have a nice collection of ladies shoes.
I have another question to throw out to the members. Has anyone suffered from "chemo brain"? I certainly have but Janette didn't believe it existed.
Michael
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Here are the top nine comments (so far) made by sports commentators (Some English??) during the London Summer Olympics that they might like to take back:
1. Weightlifting commentator: "This is Gregoriava from Bulgaria. I saw her snatch this morning during her warm up and it was amazing."
2. Dressage commentator: "This is really a lovely horse and I speak from personal experience since I once mounted her mother."
3. Paul Hamm, Gymnast: "I owe a lot to my parents, especially my mother and father."
4. Boxing Analyst: "Sure there have been injuries, and even some deaths in boxing, but none of them really that serious."
5. Softball announcer: "If history repeats itself, I should think we can expect the same thing again."
6. Basketball analyst: "He dribbles a lot and the opposition doesn't like it. In fact you can see it all over their faces."
7. At the rowing medal ceremony: "Ah, isn't that nice, the wife of the IOC president is hugging the cox of the British crew."
8. Soccer commentator: "Julian Dicks is everywhere. It's like they've got eleven Dicks on the field."
9. Tennis commentator: "One of the reasons Andy is playing so well is that, before the final round, his wife takes out his balls and kisses them... Oh my God, what have I just said?"
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Good morning.....i have not been around as i am still reeling from the news i was given on the 7th August! I do indeed have lung mets..where i had two (one in each) 10mm and 5mm ..that was on the 10th April..i now have ten..i am going to ask the onc on tuesday if they are 'clumped' together..or all over the place! I am thinking of cyberknife..they way my being told was handled ..was pretty poor..the onc even took a phone call whilst in the middle of telling me! I should have reduced radiation ..starting on Tuesday 12 now not the 25 as was before! Also a lifetime of oral chemotheraphy starting at the same time .Capecitabine..i hear it is slow working ..but i don't really have that time to be trying different types...i am upset at the fact that ..i feel my CT scan (the 2nd one) should have been done sooner...as my lungs are more important than the breast?
My wound has become infected again..possibly caused by the tattoo punched into an already very tender area..they also said i still have fluid there..but are pushing to go ahead with the radiation..but we will see come Tuesday...i also need more information about the lung mets ..i shall have a list...The 'senior' nurse was exceptionally rude to me on the phone afterwards..and told me ...if i had any questions that i should have asked on the day! Well i had to come home and digest this information before i was ready to start asking anything!
I am interested in the idea that chemotheraphy might cause tumours to grow..after i had two doses of EC which didn't work..my tumour doubled in size..it was as though it was being 'fed' by something..i was drinking Ensure drinks at the time ..so i googled about the proteins in it..and i came across a blog where a lady did indeed think they may play apart in some people's cancers..but of course not everyone..as they dont all drink high protein drinks....
I have also asked my doctor to reffer me to the Royal Marsden for a second opinion!
My other still has not had a diagnosis made..in two weeks time we might know...when the consultant returns from his holiday..
I hope everyone is in good health!
Dulcie xxxx
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I meant to say the photos where stunning! My favourite? the frog of course!
Dulcie xxxx
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Dear Dulcie, I don't think we've 'met' but I'm just writing in to say I'm so sorry to read about your latest setback, and to encourage you YES to get a second opinion. I'm ignorant of how the system works there but is there any chance you could get treated in a different hospital/section?
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Thank you Maria ..if i use a different hospital i will have to travel miles to get there..but as a one off i would go and see the Royal Marden for their views..
You see Maria i have a very rare breast cancer ..so i am almost an embaressment to them..as there is no particular treatment for Metaplasic breast cancer...The sadness of it all...i only live 2 miles from supposedly one of the best cancer hospitals in the country! But there is no kindness shown..or interest in you as the person..it is like a sausage factory...on a conveyor belt being proccessed....
Take care
i am just off while i can to get my chemo foods in for next week...while i can!
Dulcie xxxx
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Hello Dulcie
Thank you for your post. I was so sorry to read that you had bad news on August 7th and that you have been told that your breast cancer has metastasised to your lungs. I was concerned that we had not heard from you and was hoping that you had not been given bad news.I cannot believe that your situation was just left to get worse. Why would the hospital have left your situation to get worse? Why would they discover something wrong on April 10th and let it go untreated until August? I am not a doctor but, to me, this is beyond belief. You must try to remain optimistic and hope this can be treated.
I have heard of cyberknife radiotherapy and that it is effective. I do hope everything will go well on Tuesday and we shall all be thinking of you. The radiotherapy will keep you busy for the next three weeks. Why has your oncologist decided to reduce the radiotherapy by about half? Is it because of the problem in the lungs?
I do hope that the capecitabine will help with all of this. It is a well known oral chemotherapy drug, the brand name is Xeloda. It is supposed to slow the growth of tumours and is used for metastatic breast cancer. Apparently capecitabine converts to 5-fluorouracil in the tumour. If I were you, Dulcie, I would have your oncologist spell out the side effects so that you can be on the watch for them and get help. I understand that these tablets come in 150mg and 500mg tablets, so you need to know which ones you will have and how many times a day you take them.
If I were you, I would start the tablets as arranged on Tuesday when you start the radiotherapy, but that does not stop you finding out what other medication is available for metastatic breast cancer and see if there is anything specific for metaplastic breast cancer. It seems there is a pool of chemotherapy drugs that are used for breast cancer treatment in general.
If anyone reading this thread has metastatic breast cancer, of any kind, please post in and let us know what drugs you are on and how you are doing. Dulcie needs all of our support.
I was so sorry to know that your wound has become infected again. Are you on antibiotics? Are you in pain? Surely they need to get the fluid off. I can understand why they now want to press ahead with the radiotherapy, but surely you need to be completely healed.
In all honesty, I do not like the sound of your medical team. Do not be afraid to ask as many questions as you need. This is your body, not theirs, and you must be your own advocate. You cannot always think of all the questions that you need to ask, and your team is paid by us, the taxpayers, to answer as many questions as we want to fire at them. I am sure if they had breast cancer, they would want answers. I do not think you should put up with rudeness from the nurses. There are enough notices in hospitals about patients not being rude to staff, well, in my book, that works both ways. I wonder how that nurse would have felt if she had just received all the information that had been thrown at you.
I am trying to put myself in your place. I think I would definitely be getting a second opinion to make sure I am getting the best treatment. I would be getting in touch with the Royal Marsden Hospital, because they deal with rare cancers and they might be able to help. I would be pulling out all the stops.
With reference to chemotherapy, my understanding is that research has found that chemotherapy causes tumours to grow. It is not an idea, as I understand it, and is not 'might'. It looks as though chemotherapy gets rid of most of a tumour, in the short term, but sets the scene in the long term for it to return. It looks as though we are damned if we do and damned if we do not. We have the treatment to save our lives, but we cannot say that the cancer has gone for ever. I remember talking to my breast cancer nurse one day and she said that medical staff never talk about 'remission' with cancer, and that was a word that patients used. I noted very carefully that when I was told I had a good pathology report, that the words used were 'no visible evidence of cancer'. That word 'visible' was very important. I do not think anybody knows where invisible cells might be in the body, lurking and waiting to pounce one day.
Again, I am only expressing my opinion, and I would never drink Ensure. Look at the ingredients. How can this be a healthy drink? I know it has vitamins, but I think there are better ways of getting them. We are told, all the time, that we must avoid sugar, and a can of this has about 16g of it.
Water, Corn Syrup, Maltodextrin Corn, Sodium And Calcium Caseinates, Sugar Sucrose, Canola Oil, Corn Oil, High-Oleic Safflower Oil, Soy Protein Isolate, Soy Lecithin, Natural And Artificial Flavors, Carrageenan, FD&C Red No. 3, FD&C Yellow No. 6, FD&C Blue No. 1.
I think Ensure should probably only be used in extreme cases where patients have no other choice and are suffering from cachexia. See the following link:
http://www.ncbi.nlm.nih.gov/pubmed/3292798
I cannot believe either what is happening with your OH. What is taking so long? I am sure if you could go privately you would get a diagnosis straight away.
Thank you for your kind words about the photographs. I shall be posting some more, as I feel that visual beauty is a means of comfort.
Please post as much as you like before Tuesday and ask as many questions as you like. I am sure that together we can all try to help.
Thinking of you.
Sylvia xxx
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Hello Michael
Thank you for your post. It does sound as though you have had an eventful week. I was glad to know that you did catch your flight.I was so sorry to read about your cousin. This awful disease is causing so many deaths and is causing so much heartache. It is not right, moral or acceptable that this dreaded disease and its treatment is so low on the list of priorities compared to other countries. It made me sick to hear about all our boasting of what a great country we are, because of winning gold medals at the Olympics, when I think we should hang our heads in shame over so many other things, including the way we are lagging behind in cancer treatments, the fact that we have starving children in this country and the way we treat our elderly.
It is a pity that your cousin started having reactions against the drug cetuximab and that she could not finish the trial. I cannot see why, since it was a trial, that they could not have reduced the drug and studied how your cousin got on with a reduced dose. I think we all know that patients are dying of chemotherapy poisoning rather than the cancer. It looks as though cancer is reaching epidemic proportions and yet the approach appears to be very casual. If cancer were infectious, there would be widespread pandemonium and hysteria.
I was interested in what you said about Janette. I think that a diagnosis of breast cancer for a woman does make you less confident. Your appearance suffers, hair loss, eyelash and eyebrow loss, not to mention the loss of breasts or the scarring of them through lumpectomy. There is a feeling of a loss of femininity.
Unless you have been through cancer diagnosis and treatment, you can have no idea what it does to you. Other people can make silly comments that can be upsetting and they have no idea of the fear and anxiety that a cancer patient goes through. I can understand why Janette felt happier at home and did not want to go on holiday. Your home becomes your safe haven. It is a pity that her sense of humour went, because laughter is such a good tonic. Cancer somehow makes you very serious. Janette must have had a lot of energy to open a successful shoe shop. What has happened to it?
I was very interested that you have brought up the subject of 'chemo brain'. It is something that I have seen bandied about a lot on these threads. I hope people on this thread will post in with their opinions. A lot of questions are posed on this thread and others that do not get answered. A thread is so much more fulfilling if it is interactive. I cannot say that I experienced it, but lots of women say they did and say that they still do. Is forgetfulness in these women caused by chemotherapy treatment? Is it that they are very stressed out, full of fear and anxiety, have a lot on their mind and are forgetting things because of these factors? You say you suffered from it so can you tell us what it was like for you? I was interested to know that Janette did not believe it existed. I think we have to know whether chemotherapy drugs penetrate the brain barrier.
I hope you have a better week this coming week.
Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for posting the comments by sports commentators and the rain slang. I think the sports commentators' comments must be doing the rounds as I also received them in an e-mail from a friend.I think you look really good in your latest photograph. I also like the designs about friendship that you have posted on TNS. Where do you get them from?
Have you any comments about 'chemo brain'?
I hope you are having a good Sunday. Here in Exmouth it is pretty gloomy. There is a thick mist that does not appear to have any intention of lifting.
Best wishes
Sylvia xxx0 -
Hello everyone
As promised, here are some more photographs. I hope you will enjoy them
Sylvia
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Hi Dulcie
When janette's treatment for lung mets started the drug used was capecitabine. I think she had eight tablets to take all at once. She tried it twice but could never get past day 6 before developing an infection. They then moved onto weekly pacitaxol but again by day 6 she had infection. I don't recall her having any treatment related side effects.
Michael
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