Calling all triple negative breast cancer patients in the UK
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Hello Jen78.
It was nice to hear from you and I was glad to know that you do view the thread and that you enjoy the information you find here.
I was very interested to know that you are taking metformin, but that you are not on a clinical trial. Am I right in thinking that metformin is the generic drug and that Glucophage is the brand one? What would the difference be, apart from perhaps the price?
I know quite a few people here in the UK that are taking metformin for diabetes type 2. Some of them have told me in the past they have had stomach upsets from it and diarrhoea. I was glad to know that you seem to be adapting to it.
I did read in a book about diabetes that it was best to take it after eating.
I am sure everyone reading your post will find it interesting and useful.
What do you think is in the generic version that causes upsets or is it something that is not in the generic version but in the brand one that does not cause upsets?
I do remember reading on another thread that certain shops in the US were giving metformin away for free. I think the Walmart stores were doing this.
I was also interested to know that you are taking low dose aspirin as a preventive. Here in the UK low dose aspirin is 75 mg. Is your MO monitoring this for possible adverse reactions or side effects?
Keep viewing and please pop in with any comments, information, updates or tips you may have.
Best wishes.
Sylvia. xxxx
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Hello Mumtobe (Carol).
I was so glad to see you back on the thread. I was especially glad to know that all is well with you and that tomorrow you will have your tenth dose of Taxol. You have been so strong through all of this and won the admiration of all of us. Keep looking forward to that last dose, which I think will be February 6th. It is not that far away.
I was glad to know that you are not feeling as fatigued as you were and that you have started walking again. It looks as though you are having the same cold weather as here in the UK. I do not like the cold but once you wrap up and get outside it is refreshing. I can understand that you will not be taking Emma out in the cold, especially with fog on the ground.
I think we can all understand how much you are looking forward to finishing chemotherapy. It is a feeling of relief, but at first feels very strange that you are not going off to the hospital for the treatment.
You are right about there being lots of posts about vitamin D and metformin. If I were you get through your chemotherapy and then your radiotherapy and then talk to your oncologist. I cannot see that vitamin D can do any harm as you do not know how your bones may have been affected by the cancer treatment. you might want to get a blood test to see what your vitamin D levels are.
Wishing you all the best and good luck for tomorrow.
Best wishes.
Sylvia xxxx
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Hello everyone.
I have just been looking again at the Janette Collins Foundation to see what is going on. We have not heard from Michael in a while so hope that all is well. For those that have joined recently and may not know about Janette and Michael, please have a look at this Foundation an read about Janette and triple negative breast cancer, and the foundation that he husband Michael is in the process of setting up in her memory. Some of you may be able to help in some way.
There is a lot of information about TNBC on this site. The link is:
http://janettecollinsfoundation.org/
Has anyone heard from linali (Lindsay)? Bernie and Mumtobe, have you heard anything from your fellow compatriot?
Wishing everyone well.
Sylvia.
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sylvia & carol & ben & everyone ((hugs))
will get back to you shortly, a bit busy, lots of things happening, relatives visiting etc.
thoughts always,
xx
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Hi Sylvia,
Sorry I havent been on for a while , a couple of reasons for this.
Firstly internet down but also all alloted usage used up by Leigh. Had to resort to taking him for green tea in local hotels with wifi when he was home.
Then was feeling kind of negative and down... eventually relented and went to GP today to talk. I haven't slept properly for seems like years and feeling exhausted but told him I don't want tablets but needed to regain some kind of coping ability and strength. He told me to stop worrying about things, easier said than done! I have to go back in a week to see if I want to take a mild anti depressant for a short while. May consider it as I need to be well to help Leigh and Kerry.
We have had sadness at the centre,a lovely glamorous woman Mary passed away before Xmas and a couple re diagnosed. It is busy and more new people coming for treatments or just a cup of tea and a chat. A new reflexologist started last Tuesday.
We have our healing mass on 2nd feb and on the 16th a mock wedding to raise money for the centre.
We raised 2500e from our bag packing. Every bit counts.
Also on 2nd Feb we have a consultant oncology radiologist coming for a question and answer session.
Brigid who leads our meditation sessions is going to India to a huge spiritual gathering on the banks of the Ganges. It sounds like a wonderful trip and she will be meeting her own spiritual teacher. She is taking our requests and prayers with her and they may be burnt and then scattered on the Ganges.
Her sessions help me and I really believe in the energy and light that is created during our sessions. We are a mixed bunch with a retired missionary priest one of our group but we have grown to have a special connection.
I should have made a visit home last week but was lucky that I deferred it. How are you coping with the snow?
Minus 2 and freezing fog when I was driving to doc today and I hope that we do not get heavy snow.
Although not on line I have always sent the healing light from our meditation to you all.
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Hello linali (Lindsay).
I was so glad to hear from you as I was very concerned something might be wrong and I have grown very fond of my little Irish trio of three great women.
I was sorry to hear that Leigh has been using up all your allotted internet time.
What a great idea to take him to local hotels with wifi when he was at home. I was glad to know you were drinking healthy green tea!
I was sorry to hear that you had been feeling negative and down.
I think we have all had too much bad weather in the UK and Ireland and it does not seem to want to let up. A warm sunny day is a distant memory to me. Lack of sleep can make you feel run down.
Was your GP of much help? Doctors usually resort to giving out pills as a cure-all, but I think they end up making people feel worse and there is also the possibility of becoming addicted.
It is easy to tell someone to stop worrying but he is not inside your mind and cannot really understand your worries and concerns. I find that when you go to bed and are trying to get to sleep, everything that is on your mind comes flooding into it and you cannot switch off.
It is only my opinion, but if it were me I would not take anti-depressants. They just make you very lethargic and will not help your worries go away.
You need to look after yourself and put yourself first. Looking at your details, you are doing very well and you will be three years since diagnosis in June this year. I would think you have every reason to be optimistic, but do not let worry undermine your health.
At your centre you are bound to hear a lot of bad news and it can drag you down. Concentrate on the ones that are doing well. Positive thinking is very important. Find things that are positive in your life, such as the fact that you are surviving breast cancer.
I think one of the most important parts of your centre is the visits of consultant oncologists and radiologists. It is an opportunity to ask all sorts of questions, always bearing in mind that they will be biased towards their own orthodox treatments. You might ask them if treatment such as chemotherapy will continue with the same standard drugs plus the taxanes. You might ask them what drugs they are using for recurrence and metastases, especially for TNBC. You could ask them what they think of metformin as a preventive for breast cancer as well as low dose aspirin and even bi-carbonate of soda. You could also ask them whether they are now using the more targeted radiotherapy machines. These are just a few ideas.
It has been bitterly cold here with lots of rain, but Exmouth has been spared the snow, apart from a few flakes. I, too, am hoping that we do not get any heavy snow.
How is young Oskar? He is the one who will make you laugh and take your mind off things. Children are so spontaneous and so perceptive. I went to the doctors the other day, for a few minor things, and she was running forty minutes late, but I was entertained by two lovely young children and they made me feel very happy and made me laugh.
How is your husband these days?
That is all for now. I find gentle music is very soothing.
Best wishes.
Sylvia xxxx
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Hello jenn-uk.
I was so glad to know that your cancer has not metastasised. That must be a huge relief.
I was interested to know that your breast cancer surgeon agrees that neo-adjuvant chemotherapy is the way to go. That is what I had and I had six months of it every three weeks. Treatment every week seems to affect people less. I do not suppose you know what chemotherapy drugs the oncologist will be choosing.
I cannot believe that the oncologist has said that there is no capacity for a month. This is quite a difficult situation. You need to start the chemotherapy now. Is there an option of having it in a different hospital? Let us know how you get on tomorrow with the oncologist. Since you are in pain you need to get fast treatment. Would a mastectomy be an option for you? At least like that you know you have got rid of the tumour.
I am sure all of us on this thread are thinking of you and hope that something will be sorted out.
Best wishes.
Sylvia xxxx
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Hello EmmaL.
I hope all is well and was wondering how you are feeling after starting chemotherapy. Please let us know if we can help in any way.
Best wishes.
Sylvia xxxx
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Hi Sylvia,
Just back from George, where I have my check ups, and have an all clear - almost. Blood was good, cancer markers ideal, liver and internal organs clear. My lung xray showed what my doc called a shadow behind a rib that they were not sure about, so I will have a CT scan on Monday. When I looked at the form for the radiologists it says xray shows solitary nodule on lower left side. So everything else is in the clear, doc was really sure it's nothing to worry about, and the CT scan is erring on the side of caution. So if there is something there they are not sure of, I'd rather they get a good look at it to make sure it's nothing. A solitary nodule means nothing, especially as they couldn't really see it, it could be many things. I'm sure that Doc Jenny would not lie to me or sugar coat anything and she was very emphatic that I do not need to worry about this, which is reassuring.
Going by how I'm feeling physically, I'm doing great - have more energy, not getting so tired as much anymore, and I'm only not quite 3 months since the end of treatment. I have no cough or shortness of breath, no indications that all is not well. So I'm believing it's all ok. I'm seriously not going to let myself get into a state about it, as I did with these tests!!
I try to eat healthily, lots of veggies and fruit, I use a whey protein powder as I'm not a big meat eater. Every now and then I get a craving for red meat and then I do have that, I believe in listening to my body. I do eat fish, brown rice, drink 1, maybe 2 cups of filter coffee a day (not letting go of my coffee), otherwise I drink water or a little fruit juice diluted in a lot of water. I drink a bush tea called Rooibos, which is a natural product. I dont drink alcohol (anymore) and dont smoke (anymore). I'm just trying to get a balance in my life with work time, time with friends, time for exercise, time with my dogs and time with me. I rest when I need to nowdays. I take Vit B complex supplement and a multivitamin for over 50's, Omega 3 oil in capsule form, chia seeds (also omegas) and I take a 9-strain probiotic. I've never taken any supplements before, but take these on the advice of my onc. I get 400 units Vit D in the multivitamin and make sure to get early morning sun exposure for 20 mins or so.
Have heard of a powder called Green Power Powder, that a friend of mine, who was an oncologist, recommends, so I'll get to the Store where they stock it and take a look at what's in it - spirulina and all the good green stuff we need, as I understand so far, essentially a great immune booster.
But that's it really, just trying to live a healthy, balanced, happy life, with the accent on the 'trying'. But I'm keeping an open mind and read the info and try to get more knowledgeable about this all. I agree with Liv, we need to go with our gut and right now I feel ok with what I'm doing. Bottom line is I don't feel sick, no reason not to believe that all IS well.
As my sister says "a good day is when I wake up in the morning"!!
Love xxx
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Hello everyone.
For the newly diagnosed. I am once again posting the names of drugs that are used in chemotherapy for breast cancer. The name beginning with a capital letter is the brand name. It was originally on page 6 of the thread for anyone starting to read this thread from the beginning. We need to repeat things for new patients joining us.
With TNBC, when you are newly diagnosed, you will be told of the three basic tools for treatment. They are a combination of surgery, chemo and radiotherapy. It is with the chemo treatment that the list of drugs start to grow. Unless there have been big changes since my own diagnosis, I think, especially in the UK, that the treatment remains much the same. The drugs are as follows. Others are now being added to this.
Chemical name Brand name
doxorubicin Adriamicin
epirubicin Ellence
cyclophosphomide Cytoxan
docetaxel (Taxanes) Taxotere
paclitaxel (Taxanes) Taxol
cisplatin Platinol
carboplatin Paraplatin
There are other names of drugs that keep appearing, but I am not sure when they are used for TNBC or indeed for other breast cancers.
We all know that the real challenge in the treatment of breast cancer is often not with primary cancers, which often respond well to chemotherapy treatment, but with metastases (spread to other organs), or recurrence.
These are names of some of the drugs that keep appearing.
capecitabine Xeloda
This is an anti-metabolite drug. It stops cells making and repairing DNA, which stops cancer cells reproducing. Xeloda changes capecitabine to fluorouracil in the body, if I have understood correctly.
zolendronic acid Zometa
This is a bone targetted therapy for patients with bone metastases.
It is being used for breast, lung, renal and prostate cancer.
It belongs to the group of drugs known as bisphosphonates.
bevacizumab Avastin
This is a drug that is used for various cancers, including breast cancers. It is a drug that is used to stop angiogenesis, that is the formation of new blood vessels, that cancer cells need to reproduce themselves. I think it is used for lung metastases.
ixabepilone Ixempra
This drug is used for advanced breast cancer. It acts in a similar way to the taxanes, but is said to be more effective and to have fewer side effects.
I hope this list will be of some help.
Two drugs often mentioned to deal with the side effects of chemotherapy are Neulasta and Neupogena. These are used to fight infection and build up white blood cells.
If you are wondering, from one of the postings, what a muga scan is, it is used to monitor heart problems.
EPO is a blood boosting drug. EPO = erythropoietien = a hormone that boosts red blood cell production.
If there are other drug names or terms that you do not understand, please ask as we can all sort them out together.
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Hello Carolben.
I was glad to know that everything went well at your check up and thank you for such a detailed account of what your check up involved.
I do hope everything is fine when you have the CT scan, but it seems as though your oncologist is confident that there is nothing to worry about.
You do seem to be progressing well just a short three months after the end of treatment.
It sounds as though you are doing everything you can to have a healthy lifestyle and you are to be congratulated on that. I agree with you that it is important to listen to your body.
I have a similar diet to yours, but I eat no meat or poultry. The main part of my diet is fruit and vegetables, but I eat a little oily fish, prawns for iodine but only cold water prawns from the North Atlantic. I steer clear of farmed fish or seafood. I eat grains, nuts, seeds, pulses and beans, but in moderation. I try different grains. Recently it has been brown wholegrain Basmati rice, so now I am going to have a change and switch to quinoa which is supposed to be very healthy and high in protein. I do not drink coffee, but mainly decaffeinated green tea and if I fancy a change I also drink rooibos which I really like. I know it is a South African tea. If I can I buy organic. I have never smoked and drank little alcohol, but have not had any alcohol for about nine years and have no desire for it. I also have natural soy yoghurt with probiotics and fresh, enriched, unsweetened soy milk. I steer clear of dairy products. My treats are 90% dark chocolate and cherries. I absolutely love these two things. When it is cold as it is right now, I enjoy hot unsweetened organic cocoa.
As for vitamins, I also take a multivitamin/mineral for the over 50s. I also take calcium, magnesium and vitamin D capsule to help with osteoporosis caused, I think, by my cancer treatment.
I have read that the spirulina and all the green stuff is good for you, but it is just too expensive here, as is wheatgrass. I take kelp powder and supplements for iodine and occasionally green Nori sprinkle (Japanese) for the same reason.
I was wondering whether you have started reading this thread from the beginning. It is a big undertaking but it does help to fill in gaps and provide information that you may have missed by coming in on the most recent pages. I do want to go back and reprint some of this, but it is finding the time.
By the way, chia seeds are one of the latest things to appear on the shelves here. Again, they are very expensive. I buy brown or golden linseeds, grind them up and eat them with the soy yoghurt. I keep reading about the benefits of tempeh, miso, miso soup and tofu. Do you eat any of this?
That is all for this evening. Very best wishes.
Sylvia xxxx
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Hello everyone.
It looks as though the birth control pill, and its possible connection to the development of breast cancer, has come back into the news. We did discuss it at some point on this thread. As always, I would value your contribution about this matter.
Hope you all have a good day.
Sylvia.
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Hey Sylvia,
Managed to get the CT scan re-scheduled for this afternoon - there is no way I want this hanging over my head till Monday - very relieved, so I'll know whatever there is to know tomorrow.
More later, am at work now.
Love
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sylvia- been so busy the last week, had my uncle and aunt come from over east and one of the grand kids stayed with me. we had a blast, went to adventure world, the movies, shopping and ice skating which im useless at and have a sore butt as proof. nice to be in a kids mindset, so refreshing.
today i went for a brain ct scan. 3 weeks ago when i was at onc for bloods, mentioned that i had been getting headaches every day. how good is this onc, he asks what do you want to do? do you want scan or do you want to wait till next bloods in 4 weeks? i replied dont know, thats it he said, 'ill send you off for brain scan'. get results next tuesday.
my onc is right on the ball and if in doubt he shouts, scans, bloods and always asks my opinion. dont think he would mess with me because my mother comes to every appointment with me and she can be quite authoritative looking, not as much these days though, shes getting old but shes a true warrior, she always puts in her thoughts and gets him to check me from head to toe every time we go. sure she thinks im still her little baby..love her so much.
mum used to work at this hospital some 30 years ago, she was the head of medical records and she lets them all know how the place should be run, bless her she is so non technical, doesnt seem to bother her she lets them know regardless, they all fall in love with her. she still gets invites to all the medical records celebrations.
did you try the macrobiotic diet - i had a look and it could only be good for you but this type of diet is not for me, dont like to be so restricted but for sure it all very healthy.
yes the most likely place for recurrence is along the scar line, two weeks after mastectomy i had 2 nodules appear and luckily with radiation they disappeared.
dont think you can do much wrong with just bicarb soda, but only small doses, there is a lot of salt.
no never taken bitter apricot kernels, that would be an easy one for me as i love dried apricots and the bitter ones.
havent had any side effects that i can pin point to metformin. every day i take my chemo & for about an hour i feel nausea's.
agree completely about clinical trials, one person gets the pacebo, no way, going all that time without treatment is not for me & would never be in a trial that gives a placebo and thats why i got metforim from another source, not my onc.
luvs xx
placid- hooray and well done finishing chemo. sounds like you had a good response, so well worth it. you will feel a bit tired for a while until bloods build up. time to nurture yourself.mastectomy and expanders, wishing you a positive and painless surgery. you will be fine, dont know about the expanders but for me the mastectomy was much easier than the chemo.
ive only recently started metformin and dont have any side effects that i know off yet.
luvs xx
PeggySull - welcome you will have so much support here and knowledge from sylvia is so valuable, we are very lucky to have her.
luvs xx
carol & ben - thank goodness you got to re-schedule your scan - good on you for taking the initiative to what your needs are... fingers crossed. your doc saying its nothing to worry about as xray showing a solitary nodule & that everything else is clear, thats sounds good to me as they usually go with the worst scenario.the new latest theory on coffee out there in australia in the media is that coffeee is now very good for us where as last decade it was on the outer. enjoy your cuppa, ill go with it too as i have 3 cups a day.
in regards to supplements i mainly go with mainstream recommendations but also by my gut.we are not fools to kid ourselves everything is peachy totally on whatever supplements or meds we are taking. all these supplements, my bullet list is huge and seems to be adding to it all the time, i dont care and think it has a lot to do with our subconscious. if it feels right i do it.
gawd forbid, if i sorta believed in something and didnt give it a go and i died i'd be p'd off because i didnt give it a go..not that i would know i would be dead..lol
carol you must be so flexible with doing yoga. im all new to the yoga world, done a few classes, did body sculpture which is yoga & thai chi this week & cannot believe how inflexible i am. there were ladies there over 70 and ladies that were at least 2 stone over weight and they can bend and stretch 100 times better than me..
during my new thai chi yoga i was just about to give up after half way through the class then i had a look around at everyone and thought they must have started like me and look at them now, they were amazing. i can walk with weights for hours and do weight training but never realised how inflexible i really was until i started all this yoga business.
it makes sense though, when you look at the body builders even tho im lean, im definitely not a body builder ido light weight training every day. if you have a look at them they walk like "the hulk" because they have no flexibility and same with my footy team over here in aus which is the (bombers - essendon). they pulled more hamstrings than any other team last season and i know why? they had a new fitness trainer that made them do heaps of bulk building exercises with weights, yes sure they bulked up but every game they had injury after injury, all pulled muscles. no flexibility. he should have made them after every set of weights do stretches like i need to do between my weight training.
i also use baby shampoo, my hair has never been softer, very fine and i hate short hair, still wear my wigs mostly.
like you say i also hope metforminstarves off all the murderous cancer cells and kills them dead. wouldnt have a clue if it works or not but im doing it. again wouldnt forgive myself if i died~~~~~
luvs xx
jenn - fantastic news - your cancer hasn't mets....sosososo happy for you. (hugs) and sorry to hear you have pain & they wanted you to wait for a month. dont they realise that we could die of stress from all this waiting before the cancer kills us.. good luck and dont be shy telling them what YOU DESERVE.have the tummy cramps from the metformin gone yet? im on 750gm and will up that next week. strange about the genetic version and the cramps and i read also they are only using the genetic for the trials. best as you say cant get into too much strife if we follow the trials.
luvs xx
mumtobe -almost finished your taxol, whoop whoop. well done.
luvs xxlindsay - sorry to hear you feeling down and tired. perhaps if your not coping it is best to speak to you doc and mention again that you are not sleeping. a mild antidepressant tablet maybe but make sure you let them know your not sleeping as some antidepressants give you energy and make you more anxious.
when i was first dianosed my gp not my onc suggested that if i was not sleeping and were anxious to try CYMBALTA, i did for the first 4 months and helped a lot. lots of antidepressants lift your energy side and are supposed to lift your mood up, i definitely would never take that sort as im usually too up and dont need to be more anxious.. you sound like you want one with a antianxiety that you take before bed.
the spirtual meeting on the banks of the ganges, ive been there it is so dirty & filthy but i absolutely loved it, not that i would go in the water but loved the spiritual side of it all. adore india.
luvs xx
~~~~~~~~~~~~everyone, thoughts and best wishes for you all...((((((((hugs))))))))~~~~~~~~~~
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Hello Sylvia
I have been so busy this last week or so, and am just posting quickly now before I collapse into bed!
Like you, I have been 'discharged' from endocrinology, and it has been presumed that the surgery has cured my hyperparathyroidism.I am not really happy with this situation,as I would like to know whether the calcium and PTH levels are still within normal range.However, it appears that I am not going to be followed up.Similarly, I want to know whether there has been an amelioration of my osteoporosis, by having a DEXA scan; I think the only way forward will be to ask my GP to refer me back to endocrinology - if they are prepared to do so.
No-one has followed me up for a mammogram, either - it is now about two years since the last one , so I suppose it is up to me to try and get seen again.I find it very annoying that we have to be constantly chasing medical people to keep on top of things.
Did you see the article in the Mail Online today about bitter apricot kernals?http://www.dailymail.co.uk/health/article-382848/Poison-warning-apricot-seeds.html
I know that they contain cyanide, and would be a bit concerned about long-term consumption.I don't want to alarm you, but thought you should read the article.
Hope you are well.
With love,
Sam x
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Thank you Liv & Sylvia & All,
Wishing you all a happy weekend from rainy Ireland, my goodness the weather is miserable here today. Emma is upstairs having a good lie in so I nabbed a chance to come on here.
I was so upset on Wednesday after meeting my breast care nurse. She fitted me with my prosthesis (yay) and we discussed reconstruction. She suggested that when I go for my next preventative MX (which Im adamant I want) that the reconstruction could be done during the same surgery, all good.
Then I went on to ask her about my fellow TN sisters in our hospital, she said it is certainly a disease most common in younger women. I asked her how other young women fared after treatment and she never answered my question. She just said that every person is an individual and her work has shown that sometimes women with good prognosis sometimes don't do as well as women with not so good prognosis. Then she said that the scales aren't tipped in my favour for a recurrance but my attitude will get me through a lot as I have 'positivity in bucketloads and I have always had the attitude that I would beat this". True, but I really needed something a bit more concrete than what I got. I guess I shouldn't ask questions if I'm not prepared for the answer. I know she hasn't told me anything I didn't already know in regards to TN but it'd be great to get some positivity!!!
BLAH!
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Hello Liv.
Thank you for all your posts and PMs. I was glad to know that you had an enjoyable visit with your relatives. Children, especially, can be very enjoyable.
It looks as though you have a good oncologist and I hope you will have good results from the brain scan next Tuesday.
I was glad to know that your mum goes with you to all your check ups. Everyone needs someone by their side. It is good that she is known at the hospital, can be authoritative and not afraid to speak her mind. At least your mum has had breast cancer, so she will know how you feel, much better than any medical expert who has not experienced it.
I have not tried the macrobiotic diet, but I was interested in it because one of my cousins has one of her cousins over here on a visit from the US and she is on it. I think it is too restricted if you follow the strict guidelines, but apparently there are modifications. This cousin seems to follow it strictly and appears to have some nutritional deficiencies. I tend to make up my own mind about what I want to eat and do not let others dictate to me and I do not dictate to them. Sometimes people get on your case if you do not follow what they think you should be eating. That is their problem, not mine!
As for the bitter apricot kernels, I know there is a lot of controversy about them, but I was recommended them by a reputable nutritionist in 2005 on diagnosis, and I have been taking them ever since. The medical establishment is obviously against them, but they will come out against any simple and relatively inexpensive product that might prove competitive against lethal chemotherapy drugs. The medical establishment says there have been no trials performed with them, so they cannot be touted as a cure. Since there have been no trials, in my clear logical mind, they cannot say either that they definitely have no benefits. Back in 2005, they were readily available in the natural food stores here, but no one was claiming they cured cancer and then all the scaremongering started. It is because they have cyanide in them, but plenty of the products we eat have noxious things in them, but they are not banned. I am still taking them and will continue to take them. I buy them in a local shop and sometimes online. My understanding is that the Hunza tribes eat them as part of their regular diet. The ones I buy are Himalayan Bitter Apricot Kernels and I buy 300 grm tubs. They are similar in taste to almonds, but they are bitter. They are one of nature's richest source of B17. Tribes such as the Hopi Indians, the Hunzas, and the Karakoram live on a traditional rich in B17 and do not suffer from the most common western diseases. B17 is supposed to have amazing powers. If you want a link it is:
These kernel obviously are taken out of the stone of fresh apricots. B17 is supposed to be one of the most powerful antioxidants. If I should die any time soon, Raymond will be sure to let you know!!!
I tend to chew them but they can be ground and sprinkled on cereals, salads, etc.
I have cracked open fresh apricots just to prove they are inside. They are also in Hunza apricots. These apricots can be found in natural food stores, are hard and need to be soaked overnight in water. They are then delicious.
I think I am like you. I do what I think I will!!
I do not eat them on an empty stomach, only after food and often with decaffeinated green tea.
The medical establishment denies any benefit from a whole host of things that alternative doctors may recommend. It is strange they are so against this stuff, because their medications come from plants in many cases. I think Taxotere comes from yew trees and I read recently that metformin comes from the French lilac!!!
Thank you for your PMs. I am posting the link which I have just looked at. It seems very useful and is like having a medical encyclopedia at your fingertips.
http://www.cochrane.org/cochrane-reviews/top
Have a good weekend. It is wet, windy and cold here today.
Best wishes.
Sylvia xxxx
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Hello sam52.
Thank you for your post. I very much appreciate your taking the time to post, as I know you are very busy.
I have not exactly been discharged from endocrinology. I suppose I am very lucky because my endocrinologist is also my breast cancer surgeon. She has a very large clinic and a very full week. Although she has said that I do not need to get my parathyroid hormone tested any more, I still do things through her and still see her or her colleague for my breast cancer check ups. I still see my oncologist for check ups as well. It is through them that I am waiting for my DEXA scan appointment and not through the GP. I did see my GP last week and I am arranging for a full blood test to look at the calcium level, but not the parathyroid hormone level. I agree with you, I think we should be monitored for this. The GP said she would keep an eye on my calcium level and that if it was normal then the parathyroid would be normal. I told her that I did not think this was necessarily so. I shall let you know when I know what my calcium level is.
I think that parathyroid hormone level should be monitored regularly as part of a standard blood test as I think it is an under-diagnosed serious condition and not as rare as they say. You know that I think it is a possible cause of breast cancer and definitely a cause of osteoporosis as calcium gets out of control, leaches from the bones to the blood, and causes osteoporosis. Osteoporosis caused by parathyroid problems is supposed to be reversible, so if my DEXA scan shows that I still have it, then it must have been caused by my cancer treatment. I certainly lost no height until after the cancer treatment.
With reference to mammograms, again these are organised for me by my medical team at the hospital. I suppose, if a patient is discharged, then you will revert to being summoned by letter to mass screening organised by the NHS. If I were you, I would consult your GP and take it from there.
Thank you for your information about bitter apricot kernels. I have read that article before because it dates back to 2006. Julian Graves did a lot of scaremongering about them and in the end decided not to sell them. Julian Graves is no longer in business. I knew all the information about cyanide, but I think a different form of cyanide. If you read my post to Liv you will see all the information about it. I was recommended to take it by a reputable nutritionist doctor who could also supply it. I buy these kernels regularly.
There is one thing I do not understand. I also see sweet apricot kernels on sale and wonder whether they are from different kinds of apricot. When you see fresh apricots, they all seem the same. I have broken open the stones of apricots and tasted the kernels and they all taste the same. I have also bought dried hunza apricots, soaked them in water overnight, took out the stone, opened it up and found the same tasting kernel. Apricot kernels are usually small but some can look like almonds and I have read are sometimes mixed in with almonds!
I feel there is no difference between eating these kernels and eating any other kind of nuts or seeds. If they are good enough for the Hunzas, and good enough for Chris Woollams of CancerActive, they are good enough for me!
All is well here, just very tired from the awful weather and not having enough time to do all I need to do.
Wishing you well.
Love.
Sylvia xxxx
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Hello Mumtobe.
Thank you for your post. Your weather in Ireland sounds as bad as it is here in the UK. I am so fed up with it.
Thank you for the details about your meeting on Wednesday. Do you know when you are going to have your preventative mastectomy? If I were you I would give myself time to recover from chemotherapy.
I think your breast care nurse probably answered as best she could. Remember she is not an oncologist or a cancer consultant, and she is quite right to say that we are all individuals and no one can know for certain what will happen to us on our cancer journey.
It is undoubtedly true that breast cancers with triple negative receptors seem to affect younger women on the whole, and it would be useful to know why this is so. It could be a difference in lifestyle with the different generations, it could be arriving at puberty a lot earlier than in the past, it could be the birth control pill, and any other number of risk factors. Women have changed in shape over the generations, have bigger busts etc.
I should ignore all negative comments about chances of recurrence etc. Just do your very best to have a healthy active lifestyle and try not to worry. You just have to live each day at a time and be on the lookout for anything in your body that does not seem normal and get it checked out.
Have a good weekend and enjoy every minute of it with your family members, friends and baby Emma.
Very best wishes.
Sylvia xxxx
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Hello everyone.
I just wanted to wish you all a very good, relaxing weekend.
Best wishes.
Sylvia
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Hello again.
I thought the following might be of interest to you.
"Surviving Triple Negative Breast Cancer" by Pat Prijatel. This is a book.
These links might be of interest to you.
http://hormonenegative.blogspot.co.uk/
http://hormonenegative.blogspot.com/2011/10/tnbc-statistics-of-survival_20.html
Best wishes.
Sylvia
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Hi all, had the ct scan yesterday afternoon and spoke to my oncologist this morning. He says there is a group of nodules, biggest 7mm, a couple 4mm, others smaller, and going on my clinical history (3neg bc) and what these nodules look like, there is a high possibility that it's bc mets in left lung. Had a lung xray after last chemo in August and there was nothing there then.
DAMMIT, how could it metastasise in 3 months!!!!??
Anyway he's scheduled a biopsy for Tuesday, there's 1 nodule quite close to the skin surface and they'll go for that one. There is a risk of the lung collapsing, so they will probably want me to stay over night to keep an eye on that. But we need to find out what these things are. So the waiting game goes on, there's a lot of 'hurry up and wait' in this whole cancer story isn't there! It takes a couple of days for the biopsy results tho my onc promised he'd get them to me asap - he knows I'm worried as hell.
Am now just so exhausted, feel like I've been hit by a truck (again), have got to go lay down, just want to sleep, my head has stopped working.
Love
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Hi Everyone
I am still checking the site. Things are in one of those frustrating periods. I am having a severe problem with concentration, everything seems like a major task.
I am trying to build a new website using different software as I realise the present site lacks "kerb appeal". I seem tto remember building a few websites 10 years ago and they would be up and running in a couple of hours - now? - give me strength, I spent two hours this evening on two title banners and they were still rubbish. I could take the simple route and get a designer but it seems silly to waste charity funds when I should be able to do it myself.
I have my scan on Monday and see the consultant on Tuesday 4th. I will be glad to get treatment underway at least I will have a schedule. Hopefully in two weeks I will have had my first treatment and motoring along on steriods. That should help the concentration........:-)
Best wishes to all
Michael
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Carol, I am so sorry you are going through this. The waiting and not knowing is just awful. I hope that the nodes are just a reaction to the radiation. Like you I would find it hard to believe that in 3 months it would spread to the lungs.
You have been having treatment and had no node involvement so it would be so unlikely to have spread. Also the fact the node is close to the skin really makes me hope it is a reaction. Left lung and left MX and left RX and RX only completed recently, there would be a lot going on to tissue on left side.
Best wishes for biopsy on Tuesday and hoping it is just a reaction to treatment.
Love Lola.
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Hello Carolben.
I was sorry to hear about the nodules and do hope that all will be fine when you have the biopsy on Tuesday. Let us hope that it is not metastases. I know we can never tell the paths that cancer will take but I would have thought that everything looked good given your diagnosis of ductal carcinoma in situ, a small tumour, stage I grade 2 no nodes and a mastectomy, with chemotherapy and radiotherapy. I noticed that you did not have one of the taxanes (Taxotere or Taxol) with your chemotherapy and these are supposed to be very effective against triple negative. If the news is not good it might be a good idea to ask for one of these. I had Taxotere.
Try to keep as busy as you can while you are waiting for Tuesday and then for the results. You need time to go quickly.
I am not surprised you are feeling exhausted and if you need a lot of sleep than long sleeps will make the time go by. I had this kind of waiting in October 2011 at my check up with the breast cancer consultant, when she thought there was something wrong with my good left breast. This happened on a Friday and I had to wait until Monday to get a mammogram and an ultrasound which told me everything was alright.
Thinking of you and really hoping that everything will be alright.
Love.
Sylvia xxxx
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Hello Michael.
It was nice to hear from you again as you have become so much a part of this thread.
I was sorry to hear that you are going through a frustrating period and are having trouble concentrating. A lot of it may be due to the fact that you are having a scan on Monday and seeing the consultant the following week. You have said Tuesday 4th but the 4th is on a Monday. Let us know which day it is.
I have no idea how to build a website, but Raymond has done this in the past. Is there any way he can help? If it saves you a lot of hassle it could be beneficial for you to get in a designer, but I have no idea how much this costs. I think all of us has to make our lives as easygoing as possible and always bear in mind that we have been through a life threatening disease, that will be on our minds for as long as we live.
I am sure you will feel better once you get your treatment under-way and all of us here will support you. I am very interested to know about how the steroids affect people, as the few I had did not seem to have any effect on me, or none of which I am aware. A cousin of mine who has COPD is on them quite a bit and says they make her feel so much better but that she is hyper on them and feels on edge.
I hope you manage to have a good weekend and I send my very best wishes to you.
Sylvia.
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Hello Lolalee.
It was very nice to see you on the thread and giving such support to Carolben. I am sure she appreciates it.
I was reading your details and saw how similar they were to Carolben's.
Did you have any chemotherapy or radiotherapy? If you did, I would be interested to know which ones you had. Were you also HER2 negative?
I hope that all is well with you.
Warm greetings from the UK.
Sylvia xx
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Hi Silvia,
I was dx with DCIS Stage 0, Grade 3 with necrosis. Lumpectomy and radiotherapy was recommended. However with MX the radiation was not needed so that is what I chose in the end. I was very averse to the Radiation and really wanted to avoid it at all cost. My lesion was 11 mm and had not broken out of the duct.
As I was a double neg tamoxifen would not have been beneficial. I consulted with 4 different specialists and all said no need for RX. According to my BS, Her2 is only tested on invasive cancer so in my case apparently it was not necessary to do the testing. I did ask but BS refused! Don't know if I should have pushed anyway, as chemo was not recommended I guess he did not see the point.
I did insist on the SNB as I had heard that it was difficult to do once MX is done. The SN was clear. I hope that it all stays clear but only time will tell.
I am midway for fills to left TE implant. The right breast was reduced and lifted and hopefully after exchange I may end up with a matching pair, well I live in hope!
Greetings from a sunburnt country.
Lola.
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duplicated
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carol & ben ((((((hugs)))))cancer you suck - how dare it put you through this again.
my heart just fell to the floor when i read this, its australia day here and ive been away for the day over seas, we call it over seas, rottnest island.
shocked, the positive thing is you had all clear in august so if anything is there they will get it quick.
your poor love, shock horror despair. just try and think back when we were hit with this news before, thought we would not be able to handle it mentally but survival takes over after shock and you will find the strength.
so bloody hard having having to wait for the results.
let it all out now then try and keep strong & I really hope the anguish lightens soon and we get good results.
warm big ((((Hugs))))
xx
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