Calling all triple negative breast cancer patients in the UK
Comments
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hello sylvia - edited prevention musts -source..
mostly whats written is pretty standard what everyone is saying and is out there everywhere.
agree totally, its a lot to do with luck but in saying that, whatever it was or is going to be, its probably made its path already and just resting till its ready to pounce and rear its ugly head and devour. the cancer that is!
everything in moderation- life is to be lived the way one enjoys it, subjective, so i dont believe any exact way is right for all.
ive switched my white basmati to brown and like it.
xx
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jenn ((hugs)) so happy to hear the bones scan was clean, sigh of relief xx
lol telling your colleague that you would go and sleep with a crack dealer to get aids.
next hurdle, everything crossed for tomorrows scan.
try and keep strong,
thoughts with you.
xx
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carol (hugs) - sometimes all the positive talk gets me riled especially when they insist on using a pretty pink ribbon to be cancers logo, cancer isnt pretty like a rose, it does not smell sweet like a flower.
and yes can imagine it would have been quite refreshing to hear your nurse saying it as it is. im still grateful though that i live in australia where eveybody has the opportunity to free medical and as much as you need after hearing horrific stories of people not being treated.
i have my days too when i look down at the empty space which was not that long ago filled with a voluptuous "d" silicone implant, false but i loved it. not too bad though, not much anxiety for me as im definitely having reconstruction this year and in a way lucky that i dont have a partner so have no sexual hangups re breast and can mentally deal with it as looking forward to reconstruction.
what i found really good for mouth which was my worst side effect when started original chemo was to gargle in olive oil and swig a little bit. worked wonders, the bioteine never helped me.
interested to hear you do yoga, thats one of my goals this year. what type of yoga?
carol the aussies are everyone arch rivals to everyone just about, you guys, india, nz.
we just lost one of yours tony greig - link>
http://www.abc.net.au/news/2013-01-03/australia-sri-lanka-remember-tony-greig/4451764
hope your feeling much better and got rid of that migrane.
enjoy the weekend.
xx
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Congrats Jenn on your excellent results!
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Hello Carolben
I do hope all will be fine at your first check up on Wednesday. I am sure we shall all be interested to know how you get on. It is useful for all of us in different countries to compare notes. Here in the UK these physical check ups do not last long, and mine have been identical whether it is the check up with the oncologist or with the breast cancer consultant surgeon. With me they run their hands over the area of the mastectomy and do a physical check of the other breast, much as I would do myself. I have asked them what they are looking for over the mastectomy area and they have said that they look for everything to be smooth to the touch. They also have me raise my arms and do a good check under and around the armpits. They are obviously looking for any abnormality of the lymph nodes. They also do a thorough check around the neck area, again probably looking for abnormality of the lymph nodes. When I first started check ups they used to press over the stomach area, again probably looking for abnormalities.
I was told that the most likely place for recurrence would be along the line of the mastectomy scar and that a rash would be the first sign of this.
Apart from this, they have a general chat with me, ask how you are feeling etc. This is a good time to bring up anything that is bothering you. Remember that your consultants are also depending on you to tell them if you are experiencing anything that is not normal for you. I think that with all things medical it is a two way thing between the medics and the patient. No one knows your body as well as you do and you have to meet the medics half way.
I know from my own experience that you will find it difficult to try to forget about the fast approaching check up. I know that I get concerned near check up date and that on the day of the check up and the night before I seem to be breathing as if I am in a panic.
The good thing is that you feel such relief and euphoria when you are told all appears to be in order. After my check up I never feel like coming straight back to the apartment. I feel I need to let off steam but do not know quite what to do. With Raymond we usually go into Exeter and have a good walk around and goof off. I am not into consumerism, so retail therapy does not work for me. What I do like to do is to go into Waterstones bookshop and have a good look at all the books and perhaps treat myself to one. There is a Costa Coffee shop in this bookshop and we have green tea and sandwiches. The staff there know us well and always make us very welcome.
Your hair will gradually become normal, but it does take time. Mine grew back much darker than it was, but it is now its normal brown colour. I think that it is best to treat it gently and use gentle shampoos and a little conditioner. I do not think it is a good idea to dye or perm it, but that is my own view. Dyes and perms do not do hair any good.
Chemotherapy does affect the normal working of the body. The drugs are used to kill of fast growing cancer cells, and they are successful at this, but they also affect other fast growing cells that are healthy, such as hair, mucous membranes in the mouth, toe and finger nails. I know that mouth ulcers can make you feel miserable and once they start they usually take a couple of weeks to go away. Bi-carbonate of soda made up in a solution of warm water can help. I find that I have a sore mouth after dental check ups, so before I go and afterwards I use a very good product called Gengigel. You can get it in liquid form and swish it around your mouth, before spitting it out, or you can get a gel of it and cover the ulcers with it.
I think lots of patients have trouble with their nails and they can turn brown or even fall out. I had just a bit of discolouring on some of the toenails, but I know that some have had trouble with fingernails. I think ice helps to discourage this.
I know it is quite current now for women to wear ice caps on their head during treatment with chemotherapy to save their hair from falling out. I have been told it is quite an ordeal. It was not current in the UK when I was diagnosed, but I did ask my oncologist about it, but she said she was against it because of fears of infection. I have also heard of sucking ice cubes during chemotherapy to help with nausea.
The cancer journey is a long one and it takes a chunk out of your life, because normality seems to be on hold, but there is an end to it. You will slowly pick up and feel better and better.
If you like to read, you may want to read a really interesting book about cancer. It is entitled The Emperor of all Maladies, and it really tells the in-depth story of cancer. We talked about this book sometime ago. Another good book is Your Life in Your Hands, by Professor Jane Plant, as well as Anti-Cancer, a New Way of Life, by Dr David Servan-Schreiber. When I was first diagnosed, in shock and upset, I spent a lot of time reading from cover to cover The Cancer Directory by Dr Rosy Daniels. It helped me to go armed with a load of questions to put to my consultant, so that I could make an informed decision about my treatment. In fact, I posted it to her so that she had it ready with the answers for my appointment. She was quite alright with it and said that usually people did not ask many questions!!!
That is all for now. Wishing you well.
Sylvia xxxx
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Hello jenn-uk
I am just popping in to say that I am so glad you had good news at the hospital and that your bone scan was clear.
I hope all has gone well today.
I had to laugh at what your friend at work said. I cannot imagine where she got that information from!
I hope you will be able to have a relaxing Sunday.
Thinking of you.
Sylvia xxxx
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a quick rant - people I dont even know see me and insist I take x y or z - never mind that you are seeing specialists and have good access to accurate medical information - no, everyone knows there is a magical cure - be it bicarbonate of soda, vit B17, going vegan, seeing their homeopath/nutritionalist, NOT having surgery or any medical treatment, standing on your head, you name it - I get very tired of it - the AIDS suggestion must be tops off all the stupid lists!
I'td be so great if instead these people would say, let me make you a meal, take your dog for a walk, come over for a visit, things that could really be of help!
I'm not against looking at all suggestions, but also need to know where they come from.....
Love
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Hi Sylvia,
So nice to get up, switch on my computer and catch up with all that's been written - think I'm getting the hang of this slowly - I've never been part of a bulletin board type of thing before!
7 years, 7 months today!!!!!! Wow, that's fantastic - I got goosebumps all over!! It gives me a lot of hope, thank you and I'm so happy you are around with all your wisdom and compassion to share!
Thanks for the info re checkup - have a list of things to discuss and ask - find I need to write it down as my head kind of goes blank infront of the onc. I may just see the GP at the oncology clinic, which would be fine too as she is my favourite!! I'm sure once I hear those magic words - "everything looks just fine" a huge weight will lift - yes, that panic breathing, which is not breathing!! I sit quietly in a chair, focus on my breath and breathe in, saying 1 as I breathe out, then 2 up to 10 and down to one again. Just focusing all the time on the breathing. That does calm me so well!
So agree with letting the docs know what's happening with our bodies, even the silly little stuff sometimes can mean something. I think we are all so superaware of all the workings of our bodies now, the docs are not psychic and if we dont speak up they have no info to go on.
I have to drive about an hour to the Onc Clinic - but it's a beautiful drive, Sylvia - maybe you'd like to google it. I live in an area called The Garden Route - on the southern coast of SA - so I travel from Plettenberg Bay, along the coastline most of the way - beautiful long beaches, lakes, forests, mountains, it's so beautiful here! I really am aware that I live in paradise. So after it all, we'll stop somewhere along the way home and have lunch. I'm going with a friend, which is always reassuring.
I'm still using baby shampoo for my hair, and children's toothpaste. I use Aloeclair mouthwash for the rawness, Daktarin Gel and for the ulcers Kenalog in Orabase, which is like cement, but works a charm! Also not into dying my hair anymore - used to put streaks in, but went natural silver/grey years ago and left it alone.
Thanks for the book suggestions - I will try and get hold of them - the only book I've read so far about cancer is Patrick Holford's 'Say No to Cancer', that's a nutritional guide. I usually read to escape - I love novels and am a real slut in my taste, I like crime, courtroom dramas, family sagas, some historical stuff, humour is always good too! My sister who lives up country keeps collecting books and sending them down to me, so I get to read a lot that I wouldn't usually pick out, which has widened what I read. When I go up to Johannesburg to visit I take an empty suitcase and come home with it filled with books! My favourite authors are John Steinbeck, just adore Tortilla Flats and have most of his books. The other one is Pat Conroy who wrote The Prince of Tides, among others. He writes so beautifully.
It's a lovely, sunny day here today, so I think going to the beach and having a swim would be in order. Haven't anything that I HAVE to do today, which is how a Sunday should be, for me. Hope you have a happy and restful Sunday too!
Lots of love
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Liam doing well. Out of hospital and now annoying my sister.
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Hello Carolben.
I know that it can be very frustrating when people start telling you what to take to deal with breast cancer. I think this comes from the fact that there is so much information floating around about what may help with breast cancer, and all you can do is to make your own decisions. It is even worse when the advice comes from people who have not actually had breast cancer!
If I remember correctly, there are rules about what you can say and not say on this forum. We are not supposed to give advice and this is common sense, because we are not doctors, oncologists or breast cancer consultants. We are patients who have been through treatment or are going through treatment. All we can do is relate in as much detail as we like our own cancer journey and say what we did to help ourselves or what we would do if we found ourselves in the situation of patients posting. Individuals cannot go by what others have experienced or what decisions they have made. That must come from the person. What we can do is encourage, motivate, inspire, comfort and help.
My own personal view is that for the present if we are diagnosed with cancer our best chances are with standard orthodox treatment of surgery, chemotherapy and radiotherapy. There is no magic bullet.
These days there is a lot of talk about bicarbonate of soda, low dose aspirin, and metformin. I would be very vigilant about them, as we are not competent to know the effects on our body.
I took a long time to make up my mind to go ahead with treatment and you know if you have read this thread that I did have my treatment in conjunction with homoeopathic treatment at Bristol hospital and I was referred there by my breast cancer consultant. I had different medication for each stage of my treatment, and all I can say is that I did not have any of the problems that other women seem to have. I was prescribed oral Iscador in particular (mistletoe extract) and took it from diagnosis for about three years. I know that Iscador is used in the treatment of breast cancer in Germany. I had regular check ups at Bristol and very meaningful and long appointments with the consultant, who was also a previous cancer consultant. She told me from the beginning that only the standard orthodox treatment could treat my cancer. I am sure that if I had not had the standard orthodox treatment I would not be alive today.
I agree with you that for cancer patients practical help is more important than talking about what you should be taking.
You have done the right thing making up a list of things to discuss at your check up and if I were you I would write them down as it is easy to forget. It is useful to have someone with you as two sets of ears are better than one. I never went to any consultations without my husband.
I have Googled your drive to the oncology clinic and the scenery does look stunning. I saw that you can see whales. You are right to make it an outing, to go with a friend and to stop for lunch.
I have also read Patrick Holford's book Say No To Cancer and found it most interesting. He has written so many books. I do wonder where such people find the time. I do not seem to have enough hours in the day to do everything that I want.
I am not reading much fiction at the moment, but over my lifetime I have read a huge amount and in particular love Charles Dickens, the Bronte sisters, Dostoevsky, and all the great classics. I used to read a lot of contemporary novelists, such as Margaret Atwood, Anita Brookner, Susan Hill and Martin Amis. For some time I have been reading non-fiction.
It has been a very cold day here and it has been a day for staying at home.
That is all for now.
Love.
Sylvia xxxx
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Hello BernieEllen
I was so glad that you popped in with the good news about your brother Liam. It must be a huge relief to you to know that he is out of hospital. When brothers start annoying their sisters it is a sure sign they are on the road to recovery.
How often do you see them? Where do they live in England?
It is very cold here and I do not like it. I do not know how I survived for seventeen years in Canada. It was very cold, snow for months, but not damp like it is here and we had plenty of sunshine. I did a lot of snow clearing.
How is your husband doing these days?
Keep well and look after yourself.
Fondly.
Sylvia xxxx
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Sylvia,
Thank you so much for checking in on Friday. I finished Taxol on January 9 and will have BMX with expanders on February 12. So that's about five weeks of rest. I'll have radiation after expansion.
I certainly feel better than while on chemo, but still tired (overall and in the legs). I would like to start walking/exercising, but with the flu going around, I don't want to risk going to the gym. It's too cold to walk outside. So that is my biggest frustration at this point. I haven't exercised since mid September given my low blood counts and difficult time with chemo.
I have moderate neuropathy in my feet and a little in my hands. My hair coming in is the fine gray fuzz everyone talks about. My normal hair is thick brunette and I am hopeful that over time the hair will return to normal. I've seen some of the photos of others showing that happening.
I sleep better and hot flashes are not as bad as while I was on AC chemo.
I had a good response to chemo. MRI halfway through chemo showed only "minimal" cancer remaining - just on the outside of the tumor, as if the skin of an apple. Now the tumor is not palpable by me or the docs. I won't know until surgery/pathology how much is left. I am hoping for a pathological complete response. My MO said if I do have residual invasive disease, there are a couple of things we can try - she hasn't said what as yet. I've read about metformin, but the possible side effects sound pretty bad.0 -
carol-ben , sylvia,
agree so many people are saying try this or that. myself i take many off the wall supplements and meds that arnt standard treatment and thats my choice and i dont know if they are working or not.
as far as being detrimental to me, dont think you can get more toxic then 'recommended' chemotherapy and dont know if that is working or will continue working as we are mostly guinea pigs because there is not a cure for cancer.
so i do like to hear anyones opinions, views, like to hear others alternate recipe's and what they are taking., - doesnt mean i will take it on board. the majority of people going through bc have common sense and would not necessarily do anything to harm themselves more than what the chemo is already harming them.
freedom of choice and speech so i encourage anyone to put their thoughts on posts and things dont always have to be backed up with a source and many do, im not a child and will mainly go on obviously sources but many times ill go on gut instinct. i would not require to have a backup sourced for vit d, its out there we all know about it and say it.
i would never tell anyone they should try or have to do this or that but anyone can say anything to me of their thoughts or opinions and im completely fine with that. on my thread bicarb and maple syrup i actually show both sides, the bad and the good, no one is telling anyone but its there for those who wish to have a look.
many cures for certain illness have been found by fluke like oranges for scurvy., so again i encourage those that wish to partake in off the mainstream let us know. not like the getting laid by someone with aids..common sense!!
i certainly dont believe that certain breast cancers should be treated 'by the book' with standard treatment, too many people dying and obviously we cant hear their opinions. for me if i had just standard which was chemo mastect radiation and no more chemo i would be in a lot more strife. was me that sacked my first oncologist because she was too much by the book and wouldnt give me more chemo and as ive said before with my path report being very average and having so many nodes involoved the chances of recurrence were higher..
sylvia think you mentioned that having more nodes does not make any difference in regards to recurrence or treatment, ill have a look back. ive been told by onc that it does and have read many times too that how many nodes involved make a different in recurrence factor and obviously it does because you can be a stage 2 with a large tumor,no nodes instead of a stage 3 with large tumor with more nodes involved.
recurrence:
Lymph node involvement. Finding cancer in nearby lymph nodes at the time of your original diagnosis increases your risk of the cancer coming back. Women with many affected lymph nodes have a higher risk.
http://www.mayoclinic.com/health/recurrent-breast-cancer/DS01078/DSECTION=risk-factors
who knows maybe one day one of these claims like bicarb which i take might be proven through research in years coming that it actually does something for cancer just like the orange for scurvy, at the time there was not source of back up until they discovered the orange and scurvy cure which clearly saved many lives..
doubt that any pharmaceutical company will ever endorse bicarb as they would not make a cent, bicarb is cheap $3.00 a box! same as metformin another that i take, only $8 very cheap and can get on script easily. there is a lot of research going into metformin so it may be included in treatment in years to come. i figure i dont want it toooooooo late when its all tooooooo late.
bernie - great news love and thoughts for you and your brother.
cheers
xx
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Hello Liv
Thank you for your post.
Of course it is up to you what you take in the way of supplements and medications that are not standard treatment and of course you have no way of knowing whether they are working or not or whether they are detrimental. I agree that nothing can be more detrimental to our health or more toxic than the chemotherapy treatment that we receive in the hope that it will get rid of the cancer cells and put our cancer in abeyance. I agree that in a way we are all guinea pigs because there is not a cure for cancer. As in all things, we have freedom of choice and we do not have to accept the standard treatment that is all the medical establishment has to offer us at present. In fact, when I was first diagnosed, my consultant did tell me that not all her patients had accepted the treatment. I, for one, at first refused treatment and on my consultant's advice went to see a reputable homoeopathic consultant and she told me she could help me along the way with certain treatments but that I should have the standard treatment. I also saw a very reputable alternative doctor and nutritionist. She said the same thing and gave me lots of information about nutrition, most of which I already knew. She told me that she was treating breast cancer patients with various things, but these were patients who were dead against conventional treatment and knew the consequences of not having it. I also was in contact with a reputable herbalist and took wormwood and astragalus as prescribed by him. I did all this for about three months and then went back to the hospital where I had booked an appointment and told my consultant that I was ready to go ahead with treatment. With hindsight, I think I was wrong to delay, but that is my opinion. It could be that some of the medications I took while making my decision may have helped because I think I was lucky to have just one node affected.
The problem is, as was explained to me by all, the tumour continues to grow without standard treatment, begins to fungate and smell, and can come through the skin of the breast, which is exactly what happened to me.
As far as chemotherapy is concerned, it may be that it works initially, but then stops so the cancer comes back or spreads and for some, for some reason, it works and does not come back. All we can say is that most of the time it works.
Of course these threads are all about people expressing their own opinions and experiences. That is all I have ever done. If I find any kind of information in books, magazines, cancer charities etc., I post them but I make it quite clear what source the information is from and that it is not my information.
As far as standard treatment is concerned, that is all a lot of patients need and it keeps them in the clear for a long time, but of course, if you need more treatment after this, it is available. There are lots of cases where patients need more chemotherapy, especially if they are not completely in the clear or if special extra treatment is needed. I can only speak from my own experience with invasive ductal carcinoma with tripe negative receptors. I was told after my surgery, chemotherapy and radiotherapy that there was no visible evidence of cancer, that standard care had nothing to offer in the way of a preventive, but that should the cancer return, chemotherapy treatment would be available.
If at some point I have mentioned about nodes and risk of recurrence with number of nodes, it would be quoting from something I have read. I would not have the arrogance to express this as my own point of view, because I am not an oncologist. I do not wish to get into any arguments with anybody on this thread, and it has always been a peaceful one based on mutual respect. I think we always know on this thread that we have to take any problems that we have to our medical teams. If this thread ever got nasty, as some threads have done, I would bail out.
I suppose what I really think is that none of us knows the path that our cancer will take, whatever our stage, grade and size of tumour or node status at diagnosis. I was told my prognosis was not good, but after mastectomy, chemotherapy and radiotherapy I had a good pathology report and was told there was no visible evidence of disease. Radiotherapy is given at the end of treatment to mop up any stray cells that may be lurking.
Thank you for the link about the Mayo Clinic.
I agree with you that it could be that some of these inexpensive products, such as bicarbonate of soda or low dose aspirin, may be the answer. You can bet your life that the big drug companies will fight this as chemotherapy drugs are big business. The drug companies are in this to make money and cancer treatments are big money for them.
There is now a lot of publicity about metformin and even statins to prevent breast cancer. Both of these drugs have nasty side effects.
Recently, in the papers here, the headlines were all about a marvellous breakthrough with breast cancer. The drug Tamoxifen has now been approved here for use as a preventive for women who are at a high risk of developing breast cancer, that is women with a family history or who have the defective genes BRCA1 & 2. They want to prescribe Tamoxifen to all women over thirty who are at a high risk. This only represents 1% or 2% of breast cancer patients. This decision concerns me. First of all, I would think women would need to be tested genetically before Tamoxifen is suggested. It is a nasty drug with all kinds of side effects, the most awful of which are blood clots and the risk of developing ovarian cancer. Since Tamoxifen is used on women who have gone through treatment for hormonal breast cancer as a preventive and to control oestrogen, I do wonder what this will do to healthy young women taking this as a preventive.
Having read the book Bad Pharma, I am under no illusions about what the pharmaceutical industry can get up to.
In the meantime, like you, I shall continue to make up my own mind about what I do to help myself. I shall not eat any meat or poultry, shall certainly keep away from dairy products, shall eat some fish, especially oily fish, shall eat plenty of fresh fruit and vegetables, plenty of salad, organic where possible, nuts, seeds, grains, beans and pulses, drink plenty of decaffeinated green tea, eat apricot kernels daily and drink enriched fresh soy milk and soy yoghurt. That is my preference, but I would not presume to preach it to anyone else.
Best wishes
Sylvia xx
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Hello placid44.
Thank you for your post. I was so glad to know that you have finished with the Taxol. You must be very relieved.
At least you can have a bit of a rest now and a bit of time to recover before your bilateral mastectomy with expanders on February 12th. Do you know how many weeks of radiation you will have?
Give yourself time to recover from the chemotherapy. It is early days yet and it takes a long time for the body to recover from these toxic drugs. You are very wise to keep away from people at the moment, as you will be very vulnerable to picking up germs and infection.
Thank you for giving details about what is happening after chemotherapy. It is so helpful to everyone. Your hair should get back to normal in time. It seems slow at first but gradually picks up. I was glad to know that you are sleeping better as that is important for helping the immune system to pick up.
Let us hope that you will have a complete pathological response and that you will not need further drugs, as they all have side effects.
Wishing you all the very best.
Sylvia xxxx
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Sylvia, of all the books you have read regarding diet to fight cancer, which ones have you found to be most helpful? Every time I read your tag line I mean to ask. (I know there is a recommended resources section and I am starting to comb through that).
Thanks for all the helpful posts you provide.
Peggy0 -
hey peggy ((hugs))
i see the link worked & you found us, well done and welcome.
you will get all the support and knowledge you require and feel free to ask away.
xx
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sylvia ((hugs))
maybe i worded that wrong about standard treatment, what happened with me, had 6 months chemo, then mastectomy then rads, thats all good, totally agree with that bit but what i didnt agree with my onc at the time refused me more chemo. i wanted more as path report was awful and only getting 0.3 margin and the tumor was 10cm with 17/24 nodes i believe i should have been given more chemo which is not standard here in australia because of the 0.3...hardly call that a huge victory...
they came to the conclusion that 0.3 margin they had done all they needed to.
give me more chemo i politely asked and thank goodness i found a onc that had a look at my path and agreed
., even without having the scan which showed the nodes were back on my chest and above my collar bone he said with a path like this you should have had more chemo...he is one in a million..luv him.xx
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Hello PeggySull
Thank you for your post. I would like to offer you a warm welcome to our thread. I do hope you are feeling reasonably well post-treatment.
You asked about the most helpful books I have read regarding diet and help with cancer. There are two that stand out, one is Anti-Cancer, a New Way of Life by Dr David Servan-Schreiber, and the other one is The Rainbow Diet by Chris Woollams of CANCERactive in the UK, but you can get it from wherever you are, just look at the CANCERactive website and you might want to sign up for the free e-mail.
I was glad to know that you enjoy the posts on the thread.
Very best wishes.
Sylvia xxxx
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Hello Liv.
Many thanks for inviting Peggy to our thread.
I do understand what went on with your oncologist and the fact that she refused you more treatment. I definitely understand why you wanted more chemotherapy and I cannot understand why an oncologist would refuse it, if a patient needs it. I do not blame you for changing your oncologist and I am so glad that you have a new one and that you are on new drugs, and I know that all of us here are rooting for you. Thank goodness you have found that one in a million oncologist.
Take care of yourself and always be yourself. I for one admire that. Please feel free to express yourself.
I know we have moderators on the bc.org and I know they must keep an eye on things to make sure nothing unacceptable is going on. Sometime ago I do remember reading a thread where someone was being reprimanded for swearing. On another occasion there were problems with trolls!!! On our thread there have been no problems so far but a while ago someone sent me a PM pushing wonder cures for cancer. I reported it to the moderators and was told it had happened to a lot of people. They put a stop to it. I do not really know who the moderators are but I see they have two permanent threads at the top of the triple negative forum and they do not change position, even if there are no recent posts.
Love.
Sylvia xxxx
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thx lovely sylvia
xx
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Hello everyone.
I have been reading through some threads and some magazines, some of which are not specifically cancer magazines, and I keep coming across the drug metformin and its possible use in breast cancer. I was wondering how many of you viewing or posting on the thread are actually taking it. I thought it might be useful for all of us to have a discussion about it. I am posting a link for you to read and would welcome all comments. The link is as follows.
http://www.lef.org/magazine/mag2012/feb2012_Can-Diabetes-Drug-Prevent-Cancer-Death_01.htm
I have also been reading about the macrobiotic diet and I was wondering whether any of you are following this diet or some version of it. I am posting a link to an article about this.
http://www.webmd.com/diet/features/macrobiotic-diet
I shall write more later.
Sylvia
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hello sylvia,
yes another one of my concoctions, just started and my reasoning for giving it a go is.
ive got a deadly lethal disease that i dont trust one iota and if i have the opportunity to kick its ass in the tiniest way i will give it a go..and yep im scared, this demon could make me a statistic very easily, ill give anything that my gut tells me to.
nothing is more toxic than chemo and all the research shows metformin wont harm & as they are already doing clinical trials on it, instead of finishing my chemo i jumped on board now, without consultation from onc. (not recommended)
Im not endorsing this but if you want to have a look heres the link for trials.
theres a couple with combinations and by itself.
http://clinicaltrials.gov/ct2/show/NCT01650506
http://clinicaltrials.gov/show/NCT01101438
im starting on 500mg leading up to 1500 daily.
xx
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Hi Liv,
Please don't for a moment think my rant was aimed at anything I've read here - it was about people outside that I barely know telling me all kinds of stuff. Everything I've read here I give consideration to, as you guys have all walked this path. I'm not anti alternative therapies, medicines etc, I think homeopathy and conventional medicine can be a good combination, for example. You, particularly post so much interesting information, I'm grateful for that, thank you. I llike the olive oil idea for mouth sores, thanks - cheaper and tastes better than what I've been using. Will give it a try, as well as Sylvia's bi-carb.
It must have been so hard, losing your breast twice, so to speak, Liv - I'm sure you must be so looking forward to reconstruction! Interesting you mentioned no partner and so not having to deal with the sexual part of mx - I also am on my own, and when I think, well, no man would want me like this now anyway - I give myself a swift kick in the pants, cos I wouldn't want a man who wouldn't love me cos I only have 1 breast anyway! You've had such a tough time, it sounds like, and yet still manage to be upbeat and proactive, I'm full of admiration!
Interesting about the margin - I had only a 4mm margin on 1 side of the tumour cos it was very close to the breast bone. They weren't going to give me rads at first, but then decided that a safe margin is 5mm, so I kind of fell into a grey area and they did the rads just to be sure. I feel good about having done whatever could be done to make sure they got it all.
Yes, I was sorry to hear about Tony Greig, how is that, to die of a heart attack suddenly instead of slowly from the cancer, not sure that is a bad thing.
I do Hatha yoga - started after rads with private classes as my teacher wanted to do a restorative yoga with me. From next month I'll join a regular class. The swimming is great cos I love to be in the water, and it gets my heart rate up; the yoga is more for my soul, it kind of evens me out and leaves me feeling mellow and floaty! I lost a lot of strength in both arms and was having pain from using the muscles differently, plus an old rotator cuff problem flared up during rads (possibly from the table and positioning), and now with both the swimming and yoga I can feel the strength coming back, and have very little pain!
I saw a t-shirt once that said "I support South Africa and any other team who beat Australia" - it's a tribute to how good your rugby and cricket teams are that you've everyone's arch rival!!
Lots of love
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carol & ben..feel like i know him
thx ((hugs))
your right if a man only wants you for your boobies then obviously its not real. then again different strokes for different folks.. i luv boobies.
yes tony greig dying of a heart attack, he did have lung cancer and had chemo and perhaps the chemo weakened his heart., think it was a blessing going quickly.
next few months i will incorporate yoga into my week. want it for the mind and flexibility.
SA are leaders in rugby and cricket too.
today i had a lovely day, last week was pretty tired from increasing the dose of chemo but for some reason came good today.
down the park with ankle weights, one hour with my music blasting out all the grey matter then thought id give the gym a go. wasnt very strong but managed to stay over an hour and gently went round all the equipment at low weights. so glad, exercise definitely clears out a lot of junk up there.
you sound like you are getting back into things.
take care,
xx
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Hey Liv & Sylvia,
I read the info about Metformin and found it really exciting - a drug that kills the cancer cells but not the healthy ones - that's what they've been looking for! And the clinical trials have started. Good luck with this Liv, I'd be really interested to know how it goes. Also interesting to hear if anyone else here is taking it.
Hope it starves off all those murderous cancer cells and kills them dead, Liv!!!!
xxx
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Hi Sylvia - I still lurk on your thread quite a bit and enjoy the information I find here. I saw your inquiry regarding Metformin wondering if anyone is using it. I am taking it now - off label and not on a clinical trial. My MO advised me to ask my regular physician for it and neither one had any problem with me taking it. I'm taking 850mg/day right now and trying to work up to twice a day. The only side effect I noticed when on the full dose (1700 mg/day) was stomach upset. But, it gets better in time and you can easily treat the symptoms until your body adjusts. I found that eating carbs around the time that I take my dose caused nausea and taking it on an empty stomach caused cramping. I tend to focus on fruit and protein around the time I take it and I've noticed a huge improvement.
Interestingly, I've also heard that the stomach issues are only a problem with the generic version of the drug. I considered asking for the brand name version, but knowing that the symptoms go away made the additional cost seem excessive to me. Plus, I believe all the trials are testing the generic version, so I wanted to stick as closely to the prescribed regimen as possible.
I also take a daily baby aspirin on the advice of my MO as a possible preventative.
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Hi Sylvia & all the gang,
Just popping in to say hello. All good here thank God. 10th of 12 Taxol Tx tomorrow, thank goodness I still feel practically normal on it. Not as fatigued as I was either as I have started walking again and the fresh air is wonderful, although it is so cold today that I won't be taking Emma out in it, the fog is on the ground. I am so looking forward to finishing chemo, it'll be so great to not be pumped with drugs every week. I'm reading a lot of posts about Vit D, metformin....wonder should I speak to my onc about this in a few wks time.
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Hello Liv
I was very interested to know that you have made a “concoction” to help fight your cancer and I should be very interested to know what it is, and I am sure everyone else on the thread would be interested. Please let us into your 'secret'.
I can understand how you feel about this awful disease and I certainly share your distrust of it. None of us can take anything for granted. We should all be on the lookout for anything that may help us. I am going to go back on the bicarbonate of soda for a while. I figure if it is good enough for Chris Woollams of CancerActive to be taking it, it is good enough for me. I just put a teaspoon of it in some filtered water in the morning. I know that you have it with maple syrup, but do you still mix it in water?
I do admire your fighting spirit.
Have you ever taken any bitter apricot kernels. I have taken them for over seven and a half years. I read about them and then when I saw the doctor who specialised in treatment through nutrition, they were on the sheet of foods that she gave me. I took twenty to thirty a day when going through treatment and now take about fifteen. There has been a lot of talk about them. They are supposed to kill cancer cells, but there have been warnings about taking them. It could be again another threat to those with power. Whether they are doing me any good in preventing any more cancer I cannot say.
Have you had any side effects from the metformin? Apparently, it can cause nausea and diarrhoea, according to the books on diabetes. I also read that one good thing about it is that it does not cause weight gain.
I have been having a think about the clinical trials for metformin. If the trials are like many, where one half of a group gets a placebo and the other half gets the drug, then those on the placebo have time going by without treatment. I was also thinking that if some on the trial have unknowingly received placebos, but are taking metformin in private, this could cause problems with the trials. Those conducting the trials could end up looking at those on the placebos and wondering why some have responded to treatment when they think they have not received any metformin.
Thank you for the links with clinical trials. I am sure they will be of interest to everyone.
Best wishes.
Sylvia xxxx
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Hello Carolben.
Thank you for your post. I do hope all will go well tomorrow and I shall think of you going along that lovely route.
Is there anything in particular that you are taking to keep cancer at bay?
It is very interesting to read the information coming out about metformin. I understand it is also known as Glucophage. I suppose it will take a long time before all the different stages of the trials have been completed.
It has been bitterly cold here today and it has been pouring with rain, no sunshine at all. Raymond and I felt like a break from our busy days, so we went off to Exeter despite the weather. We both felt better for getting out in the fresh air.
Good luck.
Sylvia xxxx
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