Calling all triple negative breast cancer patients in the UK
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Hello Bernie-Ellen,
I hope you had a good weekend with your friend. I am sure you had lots of laughs.
Best Wishes,
Sylvia.
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THANKS SYLVIA: I saw the Oncologist (sweet man) today, 7 days past first chemotherapy - white blood cells were 16,200 - YIPPPPPEEEEEEE - thanks Neulasta . . . after a full week, I honestly believe "I can do this" . . . I was so very petrified fearing the worst, now the first week has come and gone and the doc says it is unlikely to get worse for the next three sessions . . . YIPEE YIPEE YIPEE . . . picked up the EXPENSIVE wig on the way home - it's actually quite nice, hubby says he thinks he likes its color better than my color (of course, who would really know what my "real" color is - I haven't let it be au naturale for 100 years) and that I AM GOING TO WEAR THAT THING whether my hair falls out or not - - he is such a wonderful man, he is saying this to make me laugh, and I DO!!! (We have also kidded that hugging me is "not much" different now without boobs than it was before - - ha ha - - flat chest joke) . . . so, GOOD LUCK TO YOU ALL, I am a very happy camper today. You are all an inspiration of hope - - may God in his mercy wrap his big loving arms around you and STOP THE MADNESS that your body is experiencing . . . I pray for you PEACE to sleep, STRENGTH to walk and sit, DESIRE to eat and drink, and REMISSION/CURE for the nasty cancer . . . . THANKS A BUNCH FOR YOUR INSPIRATION.
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Hello FernMF
I was so pleased to read your very upbeat post. I am sure it will inspire others going through treatment. I was glad to know that you had no problem with your white blood cells and that Neulasta seems to be the answer to that. I do hope it is readily available on the NHS in the UK for all UK patients. Even if it is expensive, it cannot be as expensive as having to admit patients to hospitals with all the expense that this involves, in addition to picking up MRSA and Cdifficile.Congratulations, FernMF, on having got through your first week.
I was glad to know that you are so positive about your wig. I still have mine as I take nothing for granted. It was expensive, a Raquel Welch wig that I was able to charge to the NHS. I did get a second one, the same, but had to buy that one.
It is good to know that you have a very supportive husband, as that is very important. There are many cases where the husband cannot deal with the whole breast cancer situation and marriages break up.
I am so glad to know that you and your husband can keep a sense of humour in all of this.
Once again, thank you for being so positive. We all want remission or cure for this nasty cancer, but, above all, we want prevention. There has to be a reason why so many young women are developing breast cancer and in particular TNBC.
Fond wishes are coming your way.
Sylvia xx0 -
Hello BernieEllen
Thank you for that very entertaining photograph. I see that you have returned from the visit to your friend in top form.Thinking of you.
Sylvia0 -
Hello Lint_Roller_Derby (Betty)
I hope that you received my PM and that it was of some help and comfort.Hello also to the rest of the American contingent
Bak94, christina1961, mccrimmon324, and youngmommy
We in the UK shall always be glad to hear from you and to know how you are getting on in your neck of the woods. I know that you are getting extreme weather conditions in certain places. It is always useful to have information from the US about breast cancer and TNBC because you always appear to be in the forefront of treatment. You are also examples of women that have successfully gone through treatment.
Best wishes to you all.
Sylvia0 -
Hello to the rest of the UK ladies who have posted in the past.
Karen_Sheffield, Karen3 and BuddhaWolf
I hope all is well with all three of you.
Best wishes
Sylvia0 -
Sylvia, and all:
Yesterday a slightly inconvenient rash started - side of neck; lower belly; at panty-line between my legs - itches like poison ivy - incidiously!, seems to be spreading - it doesn't LOOK like poison ivy and I haven't been in the weeds or outdoors . . . last night 2 benedryl's and a sleeping pill later after a colliodal oatmeal bath and reading for 4 hours, I finally slept for 3 hours - I'm at work today - no problems (except itching) . . . IS THIS A SYMPTOM OF ONE OF THE CHEMO DRUGS? Anyone have similar experience? I showed the oncologist the rash yesterday, he was NOT impressed - no "biggie" - actuallly wasn't a biggie to me either until it kept me awake all night. THANKS for any opinions.
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To all - - I have no temperature - the insistant, incedious rash has tripled - covering about 1/2 my abdomen and "down there", my neck and arm pit to back on the left side . . . this is "just itching" . . . BUT OMG it drives me crazy . . . so, if "this is as bad as it gets" I can get through this. Oncologist on call (no my doctor) said treat with Prednisone - so, to sooth an allergic reaction I'm pumped for of steroids about the time I think I finally got over the 28 mg of steroid that got last week's treatment started . . . Aveena Colloidal Bath here I come. It is helpful for me to go about my normal life, and I am very thankful that I have a job to go to, and stuff to fill my day so that I don't dwell on myself. Tonight started church choir practice for the fall season, I am a pianist and have played/sung/lead music for 44 years . . . so, this is a blessing to me - went, sang, played, met with friends I haven't seen all summer and enjoyed myself - hopefully now, after 3 hours sleep total last night, and 1 benedryl, 6 prednisones, 1 sleeping pill, I'm gonna get some rest. THANKS so VERY MUCH for answering my questions early - it helped to talk to the doctor with what you all thought was the answer - made me "sound" more intelligent and less of a basket case. Talk with you all tomorrow . . . I am "hopefully" going to sleep here real soon.
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Hello FernMF
I have just read your latest posts and I was sorry to hear about the rash. I shall reply more fully later on today when I have finished all I have to do.
As for the rash, if it were me, I would want to know exactly what it is. It does sound as though it could be an allergic reaction to something involved in your chemotherapy treatment. It cannot be a coincidence, unless it is some kind of nervous reaction. I would be asking questions.
I shall post later on.
Keep smiling
Sylvia XX
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Hello FernMF
I have a bit more time to post now. I am so sorry to hear about all the trouble you are having when everything was going so well. It is typical of the medical establishment, in my humble opinion, that they just keep dishing out pills. As you say, to treat a rash, they are filling you up with a powerful steroid when you have only just finished taking some with your first chemotherapy treatment. You are taking something to treat the symptoms but you have not been told what has caused the rash. You need to know why you have a rash.If you think back over your treatment, you need to know whether one of these medications or a combination of them has caused a rash. You do not get a rash for nothing. You have taken cyclophosphamide (Cytoxan) with docetaxel (Taxotere), and whatever steroids and anti-emetics they have mixed with this.
You have had a Neulasta shot and whatever medication you brought away with you. One of the side effects of pegfilgrastim (Neulasta) is a rash or urticaria. It could be the Neulasta shot that has caused the rash, so it would have been nice to have been told that Neulasta might cause a rash and it would have been nice to have been told that the Neulasta shot might have caused your rash.
I know that Aveena Colloidal products to put in the bath are a great relief for itching. Aveena have some very good products and I always use Aveena hand cream.
It must be very difficult trying to concentrate on your job when you have uncomfortable itching. The steroids can make you jumpy apparently and full of energy making it impossible to sleep.
I am so glad that you have some pleasant occupations to keep your mind occupied. It must be very nice to be able to sing.
Do you play all kinds of music as a pianist? I do love piano music.
I do hope you will be able to ease up on the medication when it is possible. We just do not know what all this mixture does to the body.
I hope you had a good night's rest.
Take care of yourself and let us know how you get on.
Fond thoughts from the UK are coming your way.
Sylvia xx
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Thanks Sylvia.
I have played the piano for 49 years - have been a church pianist since age 12. Took piano and pipe organ in my BA and MA work. Generally a fair technician, although never classified myself as a "classical" pianist.
I worked all day today - I'm high on prednisone for the rash (that is still there, but NOT itching). I'm the road runner and the energizer bunny in one - BEEPPPP BEEPPPPP.
Finally contacted the after hours service and talked to an oncologist I have not met - he thought the rash could be related to the chemo (DUH?) and that prednisone was the only way to go. So I doubled the antihistamine AND took a sleeping pill - so I got a good nights rest. Good thing - today has been full speed here at work.
Now, it's come to my mind that side effects from Chemo "might" hit us at those physical points where we have previous conditions; i.e. I have skin problems, I'm highly allergic to poison ivy and never touch the stuff, but come down with 1-2-3-4 times per year where I have to take prednisone. (AND, got a S/E skin rash) Also, I have highly myopic eyes with reading lenses in my -18 lenses plus prisms. The S/E on day 3 and 4 after chemo was double vision. Is that what you all have experienced? THANKS!!!
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Hello FernMF
I was very interested in your musical career. It must be lovely to play the piano for yourself.It must be a relief not to have the itching. The rash could come I would think from any part of your treatment. Remember that your immune system will be suppressed, so it will not be fighting things as it usually does. If you look up the side effects of each individual chemotherapy drug, you will find a whole list of possible side effects. The same goes for Neulasta. I actually read up about it on the internet and there was a whole list of side effects. Of course this does not mean that you will necessarily have any of them.
I can speak only from my own experience and what I did or would do in certain circumstances. I decided from the start, after realising reluctantly that I would have to go for the standard treatment or face the consequences. My policy during treatment was to have the prescribed chemotherapy drugs and keep all other medication to a minimum. All I did was have the chemotherapy, take the few drugs given to me for three days, and then absolutely nothing else. That is what I did. I was lucky to experience just fatigue and for that I rested. I did drink lots and lots of water. Anything else I had was natural and to prevent things I was told I might suffer from. I had lemon and ginger tea, with sliced up ginger root in it to prevent nausea for example.
Because I knew my hair was to fall out and that I might have a very dry scalp, I washed my scalp daily with a little Baby Johnson shampoo, massaged in pure avocado oil and rinsed it off. I did not get my hair shaved, as a lot of women seem to do, as I thought this would damage the roots anyway. I let my hair fall out naturally, and did not completely lose all of it, and it grew back quite quickly. Those are my personal tips for dealing with hair loss.
I think the cyclophosphamide (Cytoxan) may affect the eyes, but I cannot say that I had any problem. However, the chemotherapy nurse did say that she could see an effect on my eyes as this was administered.
I hope you have a good weekend. Try to focus on other things and relax.
Thinking of you
Sylvia0 -
Hello Dulcie
I do hope the week has not been too bad and that you will post soon to let us know how things are going.Best wishes
Sylvia x0 -
Hello linali
I hope all is well with you and that you are still getting a sense of fulfilment from your work at the cancer centre.Best wishes
Sylvia x0 -
Hello Michael
I hope you are managing alright and that you are making progress with the setting up of your charity in memory of Janette.I am hoping finally to get to look at Horizon on the computer today. I have had a very busy week with my volunteer work as a director in the apartment complex where I live, as well as trying to support a close cousin of mine who was admitted to hospital with complications in the foot from diabetes.
Did you hear about the woman who gave David Cameron a piece of her mind because of not being able to get the cancer drugs she needed for her bladder cancer? It was a drug known as bacterium BCG that was being obtained from Canada. There had been some kind of problem at the company. It begs the question why we are reliant on foreign companies for the supply of these badly needed drugs? I feel so strongly that the PCTs have no right to withhold drugs, especially on the basis of cost or cost-effectiveness. I do not know whether you can fit this in to your charity? Access to drugs should not be based on ability to pay.
Wishing you all the very best
Sylvia0 -
Hello InspiredbyDolce,
Thank you for your PM.I am so glad to know that my profile and my seven year survival has inspired you and made you smile. This is what the thread is all about. The message is that you can survive TNBC and more people survive than do not.
I was glad to know that you are doing well. It is early days for you, so take it easy.
I found the easiest way to get through the first year was to live as normally as I possible could. Since I had chemotherapy before surgery, and for six months, that was the longest part of the treatment. I was lucky to have maximum support from my husband, who came to all my chemotherapy sessions with me. I carried on doing the normal things. I did housework etc. but just made sure I got lots of rest and avoided crowded places and any people with colds and flu etc.
Of course, inside of me, I was afraid and wondered whether I was going to make it through treatment. I had concerns about what the drugs were doing to my body and whether I was going to die. All this is very acute in the first couple of years, especially inside of a person. It goes into a small corner as the years go by. I never take anything for granted and am aware that the cancer can come back.
It is normal to have moments of happiness and moments of sadness. Remember that all your emotions will be in turmoil. I remember I cried so much after a day at the hospital during which I had mammograms, ultrasound, core biopsy and so on. It was a long day and one during which I had a splitting headache. After that I used to get a bit teary, but never again cried as much.
Take one day at a time, take great care of yourself and see each day as an achievement.
Sending you best wishes
Sylvia0 -
Thanks Sylvia . . . I'm anxiously awaiting a phone call from the oncologist office on Monday. It seems my oncologist was off from wednesday through friday, so he has not heard of my ITCH/RASH problem (inconvenience). Also on the "table for discussion" is the eye condition/side effects which were worse on day 3, 4, 5. I have written a letter to my eye specialist and asked him to review the list of medications/chemo therapy and give an opinion to my oncologist about those particular drugs and possible interactions or REactions for my eyes, specifically. Hopefully, all that has taken place and the oncology nurse who calls me on Monday to confirm my appt times for ROUND 2 will know the answers. I don't, however, have much faith that medical offices run as efficiently as I would "run them" and anticipate that I will have to do some leg work to make the eye doc / oncology connection happen before the 21st (round 2 date). I am, however, FEELING JUST FINE. I know that prednisone is a mood elevator, almost euphoric in effect. I LOVE THAT!. I am also a deeply spiritual person, so I connect my spirituality with my feeling of well being right now. The prayers of many pray for all of we cancer patients.
I love to play the piano and sing and conduct church choirs. My goal was to learn all I could and eventual teach in a college setting. Closing in on later 50's, that goal/dream/fantasy seems to be washing away, but I will definitely continue to share in music at church, which is my favorite type of music (a very eclectic mix of church music as well). I have sung with the symphony chorus in Charleston and also in every college choir I could get into. My maiden name is "medley" and so, I've often thought my birth and name meant that I must be musical.
Thanks for your insightful, well thought out, well written offerings.
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Hello Michael,
I thought I would let you know that my husband and I have just sat and watched Horizon, about fasting, living longer and reducing the risks of the degenerative diseases, such as cancer, heart disease and dementia. We both found it most interesting.I was particularly interested in the remarks on IGF1 - insulin like growth factor 1. This was because, as I have mentioned in previous posts, my breast cancer surgeon mentioned it to me seven years ago when I asked her if she had any thoughts on causes of breast cancer. She immediately said IGF1 that is found in dairy products. I did not have much in the way of dairy products before diagnosis and have steered clear of them ever since. What I did not realise, until this programme, was that you could measure levels of IGF1 in the blood. I did not realise either that we humans create IGF1 ourselves in the liver. I have certainly never had my IGF1 level measured according to my knowledge. If it is so important why is it not part of a normal blood test? It looks as though IGF1 is created in the body when we have too many calories. If we are also taking it in our food, then it is no wonder we are getting overloaded. In this respect it is a bit like cholesterol. The body makes its own and we overload it by eating cholesterol laden foods. However, the body needs cholesterol, makes its own, and we do not really need it from food. I do not know if the body needs some IGF1.
I do not know what to think about the four-day fasting. Do you have an opinion? I think a person would be extremely tired. I taught in Morocco for three years, mainly all boys, age 14 to 18. During Ramadan they would be very sleepy and lethargic in class. As for calorie restriction one day and then eating what you like the next, would that not be a bit like yo-yo dieting? I would appreciate your opinion.
What I do think is wrong with the western diet is all the fast food, it is so high in saturated fat, salt and sugar, and so lacking in nutrients. It is definitely too high in meat, poultry and dairy products. The meals are also too big and laden with calories.
What did you take away from the programme? I would be interested in your comments.
Hoping you are having a relaxing weekend.
Best wishes.
Sylvia0 -
Hello FernMF,
Thank you for your post. Try to relax until Monday. I realise how anxious it can be waiting for a call on a Monday. It will be much better for your own oncologist to deal with a rash arising from the treatment. In order to deal with that call, you might want to look up, in more detail, the side effects of Cytoxan (cyclophosphamide) and Taxotere (docetaxel) as well as Neulasta.http://en.wikipedia.org/wiki/Cyclophosphamide
http://en.wikipedia.org/wiki/Docetaxel
http://www.drugs.com/neulasta.html
As for Prednisone, a useful link is
http://www.drugs.com/prednisone.html
Prednisone does affect your eyes and can cause eye pain and blurred vision.
I do hope that everything will be sorted out in your medical offices on Monday. You sound like an organised and efficient person, so I can understand your doubts about the efficiency of your medical offices. I am also very organised and efficient and do not have much confidence in other peoples' ability to match my own efficiency. I never leave anything to chance, especially when it concerns my own health.
I am glad that you are feeling fine. I wonder what it is in steroids that make people feel energetic and euphoric? With the few steroids I had I did not notice any change in my mood etc.
Did you have the same steroids with your chemotherapy treatment?
I was glad to know that you get so much enjoyment out of music. I am sure that will help you through your treatment. What a coincidence that your maiden name is Medley!
Best wishes.
Sylvia0 -
Thanks again Sylvia . . . I have had skin reactions to poison ivy my whole adult life- and have been on 4mg prednisone pack (you take 6 little ones the first day, 5 the next, and so on, all equaling 4 mg) . . it is a EUPHORIC drug and keeps me awake, but I am so happy, I don't mind being awake. It is NOT the same as the steroid given during CHEMO - which is called Dexamethasone.
I have had a gloriously wonderful day . . . worked in my flower beds all morning, sat in the hot tub and then read a book on the deck for ~ an hour . . . then took an oatmeal & bubble bath . . . then briefly went shopping - bought fresh corn, plums, peaches and a book . . . and ate greek salad and clam chowder at a good restaurant here . . . planted some mums this evening . . . . altogether perfect, and I feel fine. I did notice that ~ 20 or more hairs dropped out while "scratching" my head, sitting after gardening . . . . an indicator of what is coming my way this week . . . EACH hair, I'm trying to say OK - one dead cancer cell = 1 dead hair follicle . . . yea team!
I made a big chart of the past 11 days - and will have it in front of me when I talk with the oncology nurse on monday - - I think I ask more questions than most - but, as you say . . . WE HAVE TO BE OUR OWN BEST ADVOCATES.
Have a pleasant evening! (It's August 11 - normal temp in WV is ~ 90-95° with high humidity - today it's been low 70's and little humidity - - WONDERFULLY PLEASANT.)
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Hi Sylvia
I need to watch Horizon again as I was interrupted mid-way by a phone call. I do remember thinking there is no way I could do the 4 day fast. I will try and watch it tomorrow and post my thoughts as I am off to Norwich on Monday to see my step daughter.
Over the past week I have been beavering away on the charity work and today I went to see my cousin who developed bowl cancer almost 5 years ago and has defied all statistics. She was on a clinical trial until a month ago but had to be taken off. Last week she developed jaundice and is seeing her oncologist next week to see if there are any treatments left for her.
While I am here could I ask members how there self perception changed after diagnosis. I remember Janette saying "I am not the same person". She didn't need to tell me, I knew.
Michael
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I watched Horizon again and I must say I think that the diets are a no brainer. If I were going down that route I would choose the 5 day feast 2 days fast. I only wish I had known about this 5 or 10 years ago, I am sure it would have given Janette a better chance.
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Hello! Just popping in to share a link with some good news. I saw this tonight on the triplenegativefoundation.org website. I don't know anything else about it, but it looks promising. I have always been intrigued by the vaccine research.
http://www.ncbi.nlm.nih.gov/pubmed/22868370
I'm actually at work, but I was able to ride my bicycle twice this weekend. My husband and I rode 10.9 miles yesterday and 10.5 miles today. It felt so good to be riding again. I have some discomfort in my left arm which may be the beginning of lymphedema but for some reason riding actually seems to help it. It bothers me the most after I have been spending very long hours in front of the computer at work. Riding the bicycle made me totally forget about breast cancer and all my fears just seemed to vanish. It was a beautiful day here, warm but not hot - and we saw several deer as we rode through one of the local parks.
I hope everyone has a good week. I will try to catch up on posts this week!
Christina
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FernMF, I definitely had visual disturbances from the chemo - it seemed to make my vision "wavy" like looking through a pane of hand blown glass. I also got strange bumps scattered about but they went away about two months after the last TAC chemo.
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Hello FernMF
Thank you for your post. I do remember now that the chemotherapy steroid was dexamethasone, but I do remember some women were going away with prednisone. I think steroids are very dangerous. That is my own opinion and I will not have anything to do with it. I said as much on my consent form. I had the absolute minimum.I have a cousin who is on regular doses of steroids for COPD and she has already developed osteoporosis, which is a known side effect of long term use. She has also been warned that she risks developing diabetes from the use of steroids.
I was glad to know that you have had a good day doing things that you enjoy.
I hope that everything went well on Monday and that all your questions got satisfactory answers. The more questions you ask the better and you are right that we have to be our own best advocates.
It is certainly very hot where you are.
Take care and keep up your good positive attitude.
Thinking of you.
Sylvia0 -
Hello Michael,
Thank you for your posts. I was interested to know that you might watch Horizon again. It is probably the type of programme that you need to watch more than once. I also think that I could not and would not want to do a four day fast. I think you would become very lethargic and not functioning very well. I think that your body would go into starvation mode and that when you started eating normally again you would probably put on weight. Even if your IGF1 went lower, I would be wondering what was happening to all the other hormones that make up your endocrine system. I remember at the end of the programme that the journalist said the fasting had worked for him, and he was not doing the four day one, but that it might not work for everyone. I think that was a way of the doctors covering themselves!!! I firmly believe in small meals at regular intervals and not binge eating. I also believe in keeping animal protein to a minimum and keeping away from fast food, which is high in fat and low in nutrients.With reference to the programme, I was a bit dubious about fasting days and then eating what you like on feast days!! If you fast and then eat bacon, sausages, battered food and so on, you are not getting nutrients. When I shop the bulk of my food is fruit and vegetables, some grains, pulses, beans, nuts and seeds, and some good bread. I buy fresh soy milk, enriched with calcium, some fish (usually wild salmon, cod and haddock and some fresh cold-water prawns). I buy proper peanut butter (no additives), soya spread, Sojade soy yoghurt with live culture, frozen soy beans and for cereals I buy bite sized shredded wheat and Dorset Muesli.
I hope you have a good time in Norwich with your step-daughter. It is so good that you have Janette's children as company as you must be good support for one another.
I was so glad to know that you have been beavering away on the charity work. It is such a worthwhile thing that you are doing and I am sure that Janette would be very proud of you and her children must be proud of you as well.
I was interested to know that you went to see your cousin who has survived five years after diagnosis of bowel cancer and has defied all the statistics. This is what I try to convey on this thread. We cannot assume that what happens to others will happen to us. Cancer is very individual.
I was sorry to hear that she had to be taken off a clinical trial last month. I do hope she will be alright. Did she develop the jaundice because of not continuing whatever she was taking on the trial? I would be interested to know what she was taking. Has she developed problems with the liver? When you say she has defied all statistics, do you mean that she has been in remission against all the odds and that she has been in a trial to prevent recurrence or metastases? It is strange how things work out. The two sisters-in-law of my last surviving uncle were both diagnosed with bowel cancer. One went through intensive treatment, even receiving treatment at the Royal Marsden, but seemed to die pretty quickly. I think the other had less treatment and is still alive. It does make you wonder.
I was most interested in what you said about the self perception of members after diagnosis. I do hope that others on the thread will respond to your question. It is a good opportunity for members to express exactly how they perceive themselves after diagnosis and treatment of breast cancer. I was most interested in what Janette said about herself - "I am not the same person". I was also very interested in what you said - "She didn't need to tell me. I knew".
After reading your post, I immediately asked my husband how he thought I had changed. His reply was that I am a lot angrier and more impatient than I used to be. He also said that I do not seem able to relax and that I am not as relaxed as I used to be.
I think that when I was diagnosed I felt a lot of guilt and shame, as though I had somehow let myself down and brought on the breast cancer. I know that when I started to tell friends and family they were very surprised and said that I was the last person they would have expected to develop breast cancer and had always been healthy and looked after myself. I think I have become less outgoing and a lot more anxious. I think this is because, with cancer, you cannot say that it is all behind you and I feel that should I get a recurrence, metastases or a new primary, it would be a much more difficult ordeal.
I was glad to know that you had watched Horizon again and I think I agree with you about the diets. I am still not convinced that fasting is good for you. I know that I have to eat regularly or I start to feel peculiar. I think that a good breakfast is very important.
From the programme I think that it is important to have blood tests and to have your IGF1 level monitored regularly. I do not think we have enough routine blood tests in this country and I think those we do have are too basic. I keep reading about the importance of having your homocysteine levels checked in a routine blood test, but I bet a GP's eyes would pop here in the UK if you asked for one. I am thinking of asking for my IGF1 level when I next see the doctor, just to witness her reaction! It will probably cause the same reaction as when I asked the GP to do a parathyroid hormone blood test. It was as though I had asked for immediate keyhole brain surgery!!! Realistically I think the only way we are going to get these tests in the UK is to pay for them if we can. We also have to make sure that we do not allow ourselves to suffer from the tyranny of the average.
Wishing you all the best.
Sylvia0 -
Hello christina1961,
It was so nice to hear from you. Thank you for taking the trouble to post the link that you found on the triplenegativefoundation.org website. I have just read it and found it most interesting. It is good to read anything that gives optimism for treatment for distant metastatic TNBC disease.The concluding words are reason for optimism but you still wonder how many years will go by before a vaccine based on this research becomes available.
We keep hearing good news from research about vaccines and genes, but we need something now.
Keep posting Christina, we need people like you on this thread.
Best wishes
Sylvia0 -
Hello sam52
Thank you so much for your PM. I shall reply later on today.Love
Sylvia x0 -
Hello everyone
I have just received the latest e-mail from CANCERactive, dated August 12th 2012.The title is What makes a cancer come back? Part 1.
The next title is Does chemotherapy make a cancer return?
The latest American research brings chemotherapy into question.The latest American research shows chemotherapy may well cause the return of cancer! This is potentially huge - It could be the death knell for chemotherapy - You may have no idea of this mega-important piece of research.
The article goes on "But what of new designer drugs?" In the first of the article eight new drugs are discussed.
It is quoted "If Professor Karol Sikora and thirty-six other cancer experts are right, the promises we have made about them do not seem to be borne out in reality".
The following links are for the above:
http://www.canceractive.com/cancer-active-page-link.aspx?n=3256
http://www.canceractive.com/cancer-active-page-link.aspx?n=2046
http://www.canceractive.com/cancer-active-page-link.aspx?n=3224
There is information about a fraud case against GSK and another one coming up on Merk.
As you know, I have no way of posting this e-mail, but I do urge you, if you want to be informed, to subscribe to it. It costs nothing. By receiving the e-mail, you will have a whole load of links to click on that will give you more information.Some of the other titles on the e-mail are:
Leading experts question new designer drugs.
Are the benefits big enough to justify the cost?Designer Drugs appears to be a fancy word for chemotherapy, as does the word Biologics.
Hardly a single one of these designer drugs has been approved by NICE.
The article says, quoting Sikora, "No healthcare system can simply afford to pay for the huge increases involved in prolonging cancer patient's lives for a few weeks".
You are encouraged to look up your potential new drug for breast, prostate, lung cancer and more. It is pointed out that, in the UK, you are unlikely to be offered it because it has not been approved for the NHS.
The next heading that REALLY caught my eye was: Does chemotherapy cause cancer to return?
Chemo "backfires""The latest American research from the Fred Hutchinson Cancer Center in Seattle explains that, at first chemo knocks back your tumour. So far, so good, but, as we know, it also attacks healthy cells - and these make a protein to defend themselves. The cancer says 'thank you' and uses this very same protein to regrow. Faster and stronger.
The results were 'completely unexpected', but it is one explanation why cancer cells are so easily killed in laboratory tests, but much more 'resistant' in the human body. If this research is confirmed, the finding is huge. Millions of pounds wasted. Hundreds of thousands - no, millions of people given false hope and their lives put in even more danger."
The next heading is important and I feel that everybody reading this thread should do this.
SIGN A PETITION
Can we make European regulation as strong as the USA?In the US ten billion dollars has been paid by drug companies in the last few years in out of court fraud settlements. In Europe NOTHING has been paid out.
The link for signing the petition, which will take you to Avaaz is as follows:
https://secure.avaaz.org/en/petition/Stop_Drug_Companies_Killing_for_Profits/?aqvhhab
The final heading that caught my eye on the e-mail was
Are Skeptics paid by the drug companies?
This is not a spelling mistake, but used on purpose instead of Sceptic.
Apparently there is an interesting book, entitled Dirty Medicine by Martin J Walker. Have any of you read this book?
http://www.canceractive.com/cancer-active-page-link.aspx?n=3231&Title=Skeptic Tank
http://www.slingshotpublications.com/dmhandbook.html
This latest e-mail, which is part one of three, is unbelievably interesting. I shall eagerly await part two, entitled Another reason your cancer may return, and part three, which will be about looking at the latest research on how you can help yourself increase your personal odds of survival.
I hope you will find all of this interesting and that you will post comments and views. This thread can function only if it is interactive.
That is all for today and hoping that the week is treating you well.
Sylvia
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