Calling all triple negative breast cancer patients in the UK
Comments
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Hello Michael,
Thank you for your post. It was as usual informative and entertaining. You seem to have a good sense of humour. I think Hackney has probably gone like a lot of places in this country, where certain 'professional' people have been buying up Victorian homes, some of which were modest homes for ordinary people, and have now been sold as homes with 'features' and sold for astronomical prices. This has happened in Cornwall, where the locals are suffering because of wealthy second home owners. It happens in Devon as well. In Exmouth modest little homes with no place for cars and very little garden are selling for sky high prices. London has always been a city of two classes. I remember ages ago reading a book with this theme by Benjamin Disraeli.
I can understand how you feel more comfortable in Chelmsford and Brentwood. Raymond and I spent most of our time in those two places when we lived in Essex.
It is a shame that you lost your powers of concentration because of chemotherapy. I do hear a lot of women talking about chemo-brain on these threads. I wonder why this happens. I did not think that chemotherapy drugs crossed the brain barrier.
I had to laugh at what you said about being feral youths at 60. Exmouth is quite a strange place in which to live. The seaside is supposed to be a family one, and we do see a lot of youngish people with children. They seem to like Exmouth. However, it is also a popular retirement place and we have a lot of nursing homes and retirement homes and see a lot of carers. McCarthy and Stone seem to have taken hold of the place and there must be at least six of them for the over 60s. They have just finished building a huge complex known as assisted living, and it is for the over 70s. It is very well thought out and quite luxurious and includes a lovely dining room. Needless to say, the service fees are very high, but the price of the apartments reasonable.
I was wondering whether you read the link that I posted on here from InspiredbyDolce (Debra). It was from the No Surrender Breast Cancer Foundation and it is truly interesting. It is entitled Practical Principles of Some Life-style Oriented Breast Cancer Risk Reduction. I went through the whole six pages of it and liked what I read because it seems a way of preventing cancer, and recurrence, through your own initiative. It is written under the following titles. Dietary Restriction, A Better Way to Diet: Intermittent Energy Restriction (IER), Insulin Control, Glycemic Control, Physical Activity/Exercise (PE). Caloric Restriction plus MCM Diet Adherence + Resistance Training + High-PE (High Met hours aerobic physical exercise). How to Think About Environmental Tumourigenic Exposure Reduction.
What surprised me in this was a reference to 'chemo-belly' as a result of chemotherapy treatment. I have not heard mention of this before and can only think that it must be caused by steroids.
You might want to put it on the JCF website.
It is a Bank Holiday weekend here in England. I hope after that Exmouth might get back to 'normal'. I think the schools go back on Tuesday September 3rd.
With best wishes.
Sylvia
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Hello Jackpot,
Thank you for your post and for letting us know how your appointment went with your chemotherapy doctor. I suppose you mean your oncologist. I was glad to know that everything went alright.
You are having more or less the same drugs as I had, except that I did not have the fluorouracil with the epirubicin and cyclophosphomide and I had four doses of it every three weeks over three months. Like you, I then had docetaxel (Taxotere) on its own, four doses every three weeks over three months.
I suppose I had more because I had a larger tumour.
It would be interesting to know why fluorouracil is added for some and not others.
Epirubicin is red, so do not be afraid if your urine is red. When I was having treatment the nurses called it the Red Devil.
It will be nice for you to have it out of the way for Christmas.
As for radiotherapy, I had quite a long wait for it, but remember I had my chemotherapy before surgery. The chemotherapy finished at the end of April 2006 and my surgery was on May 17th 2006. I think I started radiotherapy about mid June 2006, but remember they would have wanted the surgery to heal.
We shall all be thinking of you on September 4th when you begin the chemotherapy.
It is normal to have a pre-op assessment before starting chemotherapy.
Have you sorted out whether you will be having a port or a cannula?
Do have a read of the article that I have mentioned to Michael. I am sure you will find it interesting.
I was very interested in the last part of this about environmental exposure and what to avoid to reduce breast cancer risk. It listed avoiding HCAs (heterocyclic amines) produced by high heat cooking of animal and fish proteins (meats, poultry and fish when grilled, fried, barbecued or otherwise subjected to high heat, including oil-based wok cooking).
Avoidance of environmental smoke (including all second hand smoke, and third hand smoke (for example, from being in the proximity of the clothes of a smoker, although the smoker is not actively smoking at the time)).
Avoidance of other ingested carcinogens (alcohol, pesticides, including dietary oestrogen-promotors, such as grapefruit and grapefruit juice).
I must admit I was shocked to read about grapefruits and grapefruit juice. It stated that one quarter of one medium grapefruit per day increases the risk of breast cancer by 30%, via the highly antioxidant oestrogenic furanocoumarin components. I shall have to research this as I cannot believe that a healthy fruit such as grapefruit can be a risk factor in the development of breast cancer. Does anybody have any information?
Avoidance of light at night, as it is now an established carcinogen. I have read a lot about that in the past and the risk that night workers face.
That is all for now. I hope you have a nice Bank Holiday weekend up there in Liverpool. Do you have any special plans?
Thinking of you.
Sylvia xxxx
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Hello linali(Lindsay),
I do hope all has gone well this week with you appointments on Tuesday and Thursday.
Fond Thoughts,
Sylvia.
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When I had the "red devil" one of the chemo nurses said to try thinking of it as the "red soldier". The first time I had chemo I didn't think of it as my friend, or my weapon against this horrible disease, although it'd been suggested I try! I was scared and needed to just get through it.
However, when I started my 2nd lot of chemo this year, I so totally felt like the chemo is my weapon and wanting to try and let it do its job, without me putting up any mental obstacles. Does that make any sense?
Yes, Sylvia, I'm stressing about the scan a bit - the thought that it's in a week's time now wakens all those pterodactyls that live in my tummy! But then I try and redirect my thoughts, or go do something etc. But they sneak back in. But it'll be done soon enough, and then we'll at least know what's going on in my lungs.
I just finished Taxol too, Susanicking, the fatigue is incredible. And you had previous chemo right before the Taxol too! My past experience is that after chemo ends it takes a little while, but the body recovers and the fatigue will get better slowly - in time! I get flattened by climbing stairs. Also showering, washing, drying, creaming and dressing can just finish me off. I learned to break it up:- Shower and wash and dry. Put on dressing gown, sit down and rest. Put cream on slowly. Sit down and rest. Get dressed. Sit down and rest. Oh my gosh it's quite sad! I'm almost 3 weeks off chemo now and am slowly starting to feel more human.
Been very emotional since finishing chemo though. I cry at the drop of a hat, sad things, happy things, the waterworks start. I still have very scratchy and watery eyes (not the tears), but finally figured out that it's partly because of the chemo messing with the mucous membranes, but also I have no eyelashes to filter dust etc for me!
Talking of books - I just read "Bald in the Land of Big Hair" by Joni Rodgers. It's her story of going through non-Hodgekins lymphoma and chemo - she does it with a lot of humour, but also a lot of the hard truths. I gobbled it up in 1 sitting! She had me laughing out loud at times, and the occasional tear too.
Have a lovely weekend all
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Hello Carolben,
It was lovely to hear from you. I have had a very busy day, so I shall reply tomorrow.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
I am doing well - continuing with exercise and good diet and supplements. I have had a lot of house guests this summer so it has been busy especially preparing meals for more people has been challenging. Thankfully my husband helps a lot.
Just met a young woman in her early20's who had just had surgery to remove a huge growth in her abdomen - it was cancer and she said it was everywhere - ovaries, colon, appendix, diaphragm, uterus - I found this very distressing. She is such a beautiful young woman - now she is waiting to recover from her surgery before starting chemo. It really unsettled me to know that this horrible disease can be so intrusive in all ages and stages of life.
I have not started preparing for my holiday in South Africa yet, but I should start thinking about it soon.
I still read the posts most days and love to hear everyone's news. I got the Patrick Holford book, but haven't read it yet.
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Hi Sylvia,
I actually posted yesterday, quite a lengthy one but must have pressed something and it disappeared so hopefully this one will appear.
I am much improved but still on steroids and antibiotics. No chest xray because my GP feels that I have had too much radiation already. I am going to see him next week to go through a few things such as medication and the fatigue.
Damian is to go into the Galway clinic on Tuesday to have his gall bladder removed. He saw the consultant on Thursday and had a choice of when he wanted surgery, the joy of private health care!
I had my appointment that day too and saw a registrar who appeared to have no idea about TNBC, very unsettling. He asked me was I on Femara or Aromidex...not sure on the spelling and I had to keep saying I have TN and so no medication and just body surveillance as a check. I did have a list of questions and in particular was concerned re the fatigue. He said to ask my oncologist and I said to him that he was it as I didn't see an oncologist because I was TN. Very frustrating and the nurse not much better. Exercise and vitamins which I already know and do whenever I can, in particular walking and Tai Chi.
He did go to talk to Ms Merrigan and had my questions with him, I also asked re glucophage and metaformin. He told me that there had been a case conference about me to discuss the scans and MRI and what to do in the future, so that did reassure me. I was told that nothing proven re metaformin so it wouldnt be used until it was. I have another MRI scheduled for April but still couldnt get an answer on how to link up my different consultants and who should I go to with my concerns.
I have registered for a conference on 20th September for cancer survivors and will attend 2 workshops. I really want to be able to help others connect in with their treatment and doctors and for them to be able to take control of their situation. To support people and encourage them not to take no for an answer and to get through to those consultants who feel they breathe a more rarified air than us cancer patients and survivors.
On Thursday we had the privilige of sitting with Sharon's mother, sisters and brother and they shared with us their stories of her last days and we spoke of her serenity and love for her family. It made me feel so thankful to be alive and so sad for her family whom I felt were so brave to do it as she only died on Sunday. I hope that it helped them to know that she got comfort and strength at the centre and we also drew on her courage. Her mother will become a volunteer in time.
I was at a retirement dinner last night and I am feeling the effects of rich food and a couple of glasses of wine. I don't do it often but it is amazing how your body objects to things. It will be good to go to Tai Chi and I will make a light vegetable Thai curry for dinner.
Sorry about the rambling but when I am posting I fell like I am chatting away to you all.
Thoughts to everyone and Happy Bank holiday x
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Hello Carolben,
I can understand that you are stressed to some extent about the scan but just think of the end of the month as liberation day. It will be done and dusted and we are all hoping that the news will be good. Try to keep busy and occupy your thoughts with pleasant things. Think of all the pleasant things you have planned for the future.
It is good to know that you are gradually feeling better. I was told during chemotherapy that cyclophosphomide affects the eyes. I was not really aware of it, but my chemotherapy nurse at the time told me she could see my eyes changing as the drug was administered.
The book you have read sounds very interesting and it is good when these books are written with humour. It was like that with a book I read quite a while ago now. I think it was entitled How I Said BLAH to Cancer. One of the first books I read years ago was most inspirational and kept me going through chemotherapy. It was by Jane Tomlinson and described all her experiences. I cannot remember what it was called.
Take care and relax this weekend. Think nothing but good thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for your post. It is always nice to hear from you. Keep up the good work with exercise, diet and supplements. It is all we can do.
I can understand how distressed you feel about the young woman in her early 20s with cancer everywhere. There has got to be something causing this. We keep being told that cancer is a disease of old age. I have been very saddened and upset by some of the posts on Calling all TNS where some women are having terrible times with this awful disease. I am convinced that a lot of it is to do with lifestyle and our environment. I also think that the birth control pill and binge drinking play a role in the development of cancer.
Did you read the information on the link that InspiredbyDolce (Debra) posted on the other thread. I posted it on ours after reading it, because I thought it was one of the most interesting and most important links that I had read in a long time. You might want to read it. It is from the 'no surrender breast cancer foundation', Practical Principles of Some Lifestyle Oriented Breast Cancer Risk Reduction. I printed all the relevant headings in a previous recent post. I would value your comments. What shocked me was the information about grapefruit as a cancer risk. Do you know anything about this?
You must be excited about going to South Africa. When are you leaving?
I was glad to know you got the Patrick Holford book. I am sure you will find it interesting.
Keep well and keep in touch.
Sylvia xxxx
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Hello linali (Lindsay),
I was sorry to hear that you accidentally deleted your post. That must have been most frustrating.
I was glad to know that you are feeling better and I do hope that you will soon be able to finish with steroids and antibiotics. They do not do the body any good and have all kinds of side effects. Are you taking them long term?
I do hope all will go well with Damian. It looks as though if we do not want long waits and bureaucracy then private health care is the only answer if we have insurance or can afford it.
I cannot believe what happened to you with the registrar you saw. It is very worrying that he appeared to have no idea about TNBC. I would have thought he would have gone through your records before talking to you. It just shows you you have to be in command of your own disease and be on the alert for mistakes and ignorance among the medical staff. I cannot believe that he asked you whether you were on Femara or Arimidex, which are aromatase inhibitors and are given to post-menopausal women with breast cancer with hormonal positive receptors as an alternative to tamoxifen or as treatment after so many years on tamoxifen.
You do have the right to ask to see your oncologist, especially if you have concerns or questions. I still see my oncologist, once a year now, and I am now eight years and two months since diagnosis. Just because you are TN does not mean that you cannot see an oncologist. I do wonder how much knowledge nurses have.
I do agree as I have just said to adagio that good nutrition, exercise and vitamins are important and the things we can control. Have a look at the link that I mentioned to her.
I do not know what to think about metformin. By the way, Glucophage is the brand name for metformin. I do not know what to think about it. There is some information about metformin on the 'no surrender breast cancer foundation'. I quote “metformin has been shown to inhibit the growth of cancer cells, including breast cancer, in vitro and of tumours in vivo, via activation of the AMP-activated protein kinase (AMPK), leading to decreased serum glucose and a secondary lowering of serum levels of growth promoting insulin/insulin-like growth factors (IGFs).....”. I think you would find all the information interesting. It also mentions that metformin appears to be more effective for TNBC than non-TNBC and brings about apoptosis of cancer cells.
I think that if I were you I would take firm control of my own case. Trying to link it all up may be impossible. I think that in England the NHS is having a tough time at the moment due to the government's policy of cutting everything and doing a lot of damage. I suppose this is happening in Ireland too. Our opposition party seems to be content to let it all happen. It is very short sighted.
I do hope you will let us know what happens at the conference on September 20th. I am proud of you in wanting to help others. It is definitely a fight we have to encourage to fight when we are dealing with cancer and we must not take no for an answer.
I was so sorry to hear that your friend Sharon had died. There are still so many deaths from cancer and this should not be happening after all these years of research. More emphasis needs to be on prevention and this has to come through education and people taking command of and responsibility for their own lifestyles.
That is about all for today. Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Sending you all some great news - Steelerfan had posted on the Calling all TNS thread that she is almost at 5 years out from TNBC, and after an appt with the ENT who recommended a CT scan they didn't know why she had balance/falling problems. She had a brain MRI last week and it was returned as normal. So letting you all know because I'm not sure if she knew how to find her posts again to provide an update. She had only posted this one time, the week before her appointment. But she recieved excellent news.
Also ladies, some information for you, from the cancer.org website:
Right now, there are: Right now there are more than 2.9 million breast cancer survivors in the United States.
If 15% of those are TNBC, that means 450,000 survivors, and we probably have less than 500 (conservative estimate) of those who are posting on these boards. If you read something that upset or worries you, please remember that in general the majority of women will survive TNBC. What we see here on these boards is a very small population.
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I've been coming across this word lately, and today my Uncle mentioned it! What is it and what does it do? PeggySull, did your doctor explain it more?
lactic acidosis
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Hi Sylvia and Everyone,
Posting my updates for you all!
Had BS appt on Thursday and all was great. He agreed to u/s now and in 6 months an MRI. I had a rib that seems pronounced near my top chest near port site. It was x-ray'd last year and showed normal, but he said I could have an u/s of it to ease my mind.
Had u/s appointment on Friday. Radiologist took an extreme amount of time and was very thorough. Everything came out normal. The one area (the high rib at top of chest) is a normal rib and cartlidge. The BS said I notice it because I'm hyper sensitive now. I think I notice it since I've lost weight and gained muscle.
My results were normal! I will be at 20 months out beginning of September. I worked really hard, and at his urging to go celebrate, I did. I had pancakes (took in my own organic syrup though and bottled water, lol) and then later in the day had a very sinful small caramel shake.
Today, I have to go undo what I did with all my a la carte victory celebration foods yesterday, and off to the gym I go!
Just wanted to share some great news with you and tell you all, that while it has been hard work for me, I have accomplished something I never thought I would ever have to think about. For those of you who are newly diagnosed and feel overwhelmed with modifying your lifestyle, ... think positive, set your goals and just tackle day by day what you can. Before you know it, one foot is in front of the other, and one day become one week, which becomes one month which becomes one year. And if you don't reach your goal for a particular day or week don't be discouraged, you can start the goal again.
A goal is a guide to get you where you want to go, it doesn't mean that you can't take a scenic route once in a while!
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Hi Debra,
That's brilliant news and so agree with your words re changing your life style.
In Ireland they only do mammograms as a check and for any of us that have any kind of ongoing pains or differences in our bodies it can be quite worrying.
Whilst I had an active job before the cancer I cannot say that my lifestyle was the best. I was a union rep aswell and that was very stressful and draining and left little room for enjoyment of the important things in life.
After Tai Chi at the centre yesterday a few of us had a discussion about how important exercise is in any recovery and survival of cancer. We live in a rural area and many of the people coming to the centre would live in very small communities. Somedays I just dont feel like walking and I am not fit enough to keep up with friends that love to walk and so we thought in the future it may be good to have kind of a buddy scheme where people can encourage each other, meet up and can understand each others limitations. Someone to give you a gentle kick when you are too lazy to get out there.I suppose it would be small walking groups for cancer survivors.
I also would like someone to come to our centre to demonstrate some good tasty vegetarian cookery and use of spices. We tend to be very fond of our meat here in Ireland and we do have people who are trained chefs amongst us.
I think that getting to the 3yr stage makes me realise how much I want to get to the 33yr stage! and become a graceful old lady and enjoy the wonder of my beautiful grandson.
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Hello InspiredbyDolce (Debra)
Thank you for all your posts and for the encouragement to everybody with those statistics.
I am sure we are all glad about the good news for Steelerfan. She must be relieved. However, there must be a reason for her balancing problems. If that were me I would still want to get to the bottom of it. You can have balance problems with your balance because of problems with your ears.
We have not had a post from PeggySull on here for a while but hope she will pop back in soon. I cannot remember reading a post from her on another thread about lactic acidosis, but I may have missed it.
According to my medical book, lactic acid is normally removed from the blood stream by the liver. If this does not happen the lactic acid accumulates in the body and causes a condition known as lactic acidosis.
Lactic acid is a weak acid that is produced when body cells break down glucose by anaerobic metabolism (chemical processes that do not require oxygen) to generate energy. Lactic acid is produced by muscles during vigorous exercise and is one of the factors that contribute to cramp.
Lactic acid is also produced in body tissues when they receive insufficient oxygen through impairment of their blood supply. This situation may be the result of a myocardial infarction (heart attack) or shock.
I hope this helps in some way.
You may want to read more at the following link:
http://www.patient.co.uk/doctor/Lactic-Acidosis.htm
You might be interested in the fact that there appears to be a link between metformin and lactic acidosis. You might want to read the following link.
http://www.medsafe.govt.nz/profs/PUarticles/5.htm
Let me know what you think about all of this.
Has PeggySull got a problem with lactic acidosis?
I was glad to know, Debra, that all went well when you had your breast surgeon appointment on Thursday. I was glad to know you had a bit of a celebration by having some pancakes. Were they what we know as American pancakes? I used to love having them for breakfast when I had breakfast in Canada at one of our local restaurants. In the UK we tend to have large thin pancakes, a bit like the French pancakes known as crêpes.
Thank you for all your words of wisdom. I am sure they will give encouragement and motivation to everyone viewing and posting on the thread.
Your link about calorie restriction, healthy diets and exercise was really interesting and I have read it many times over. (No surrender breast cancer foundation).
Have a good weekend and have a good week. Keep posting. Tell PeggySull we would love to hear from her.
Sylvia xxxx
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Peggy Sull is on vacation and I suspect without WIFI. We stay in fairly close touch and I've heard nothing for a bit.....she'll be back I'm sure!
Loving the good news here lately. Hang in there ladies!0 -
Hello Susaninicking
Thank you for letting us know that PeggySull is on vacation and probably without WiFi. It could be also that on vacation she may have decided to have a little break from the threads. I think we all understand that.
I always feel concerned if someone disappears on our close knit thread. i always wonder what has happened. So many people have been through this thread and then stopped posting without explanation and you always fear the worst.
I have told my husband that if anything happens to me he should write on the thread and let people know.
To all of you who have been on the thread over the past three years (on September 12th), I hope you are all well and leading happy lives. If you are still viewing, pop in and say hello.
Best wishes.
Sylvia.
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Hello linali,
I keep meaning to say that I was reading information about co-enzyme Q10 and how it helps if you feel tired and low in energy. Apparently it is something that is natural to the body but diminishes as you age. You might like to mention it to your doctor. In supplement form it is quite expensive and I have read that, if you are over 50 you need the Ubiquinol form and if you are under then Ubiquinone is best.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I am just popping in to say that I finally got to listen this afternoon to that radio programme you mentioned about drips. I could not believe what i was hearing about the use of statch-based, coloidal drips in Intensive Care on very sick patients. Even after it was discovered in 1998 that the research was fraudulent, they were still being used up to 2010. There is no knowing how many deaths were caused by these drips. It seems it could be millions.
It just goes to show that you have to be vigilant all the time and that you cannot necessarily trust what is said about trials and research.
It also goes to show what influence important and well known people can have. That professor in question was followed by colleagues like so many lemmings.
I hope you are having a good weekend and that you are not feeling too bad.
What is the next step in your treatment?
Fond thoughts.
Sylvia.
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Poor PeggySull - there sure is a lot of talk about her, and now she is in the same sentence as lactic acidosis. lol I don't believe she has a problem, it's a very rare side effect that can be caused my Metformin. I think she had only mentioned it in passing as a possible risk for some people. When I went to read about it, I read that people with intense exercise can get it, so then I asked about it. The benefits of Metformin far outweigh the risks for me, but I was just curious, since I have been hearing the term recently.
I had ordered CoQ10 and then read on the internet that it can increase risk of bc, so I sold my bottle of it to someone at the gym. I don't believe the information was conclusive, but warranted, so I opted against it.
Now, coincidentally, I just went to Mayo's website to see what they had on it, and there is a warning that if you do vigorous exercise, that you should avoid it! Huh ... that was interesting. So I wouldn't have been able to supplement with it anyways. Here is the link to Mayo, but nothing too alarming here. I don't know what I read or where but it must have been enough for me to sell my bottle.
http://www.mayoclinic.com/health/coenzyme-q10/NS_patient-coenzymeq10/DSECTION=safety
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Here's one link, but this is not the original article I read on it, for sure, as this link doesn't give me a lot of info one way or the other. I'll research this week as I have more research to do this week.
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Dolce - sometimes I find it very confusing with the supplements because so many websites have conflicting information. I thought that coq10 was an anti inflammatory . I currently don't take it but I did take fairly substantial amounts (under my integrative cancer physician's care) while I was on Adrimyacin - he told me it helped protect the heart from the potential damaging side effects of this particular drug. I took it for 3 months lowering the dose each month . I still have some left and I thought that at some point I might take it again to use it up, but I will do further research before I do.
Have you heard about medicinal mushrooms for boosting the immune system? I take a product called Immune 7 which has 7 different kinds of mushrooms in it.
I appreciate your sharing of all the information!0 -
Hello InspiredbyDolce (Debra)
When I mentioned lactic acidosis I was merely responding to your question when you asked if anyone had heard of it. In your post here on August 24th you said
“I've been coming across this word lately, and today my Uncle mentioned it! What is it and what does it do? PeggySull, did your doctor explain it more?
lactic acidosis”
I was a bit puzzled by this post and thought you must have been mixing up this thread with the TNS and talking about something that had gone on there.
Anyway, there is no harm done. I have read that this is not a rare side effect of metformin, but there is so much information flying around and much of it is contradictory. I tend to look up things such as this in medical books and not the internet.
When all is said and done, we all have to make up our minds what we are going to believe and what we are not going to believe, whether it is what to eat and drink, how much exercise we do do and what we do, and what we shall take in the way of supplements, etc.
I did read about lactic acidosis and intensive exercise.
We all make our own decisions and that is all we can do. Whether it is eating loads of prunes, as was being put forward sometime ago, low dose aspirin, bicarbonate of soda (baking soda), metformin, etc. I am sure there will be other things put forward as a possible 'cure' or preventive for breast cancer or cancer in general. In the meantime we all have to stay calm and carry on! The things that we can do is try to eat a healthy balanced diet and be moderately physically and mentally active and try to laugh as much as we can and not take life too seriously.
That is all for today.
Best wishes from England.
Sylvia xxxx
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Hi Sylvia
The weather has been lovely this weekend, not as hot as England but comfortable. The evenings are quite cool though. A couple of months ago I was taking the dog for a walk in brioad daylight at 10:30 - 11:00 at night and now it os dark by 9:00.
I have come across a piece of research that although only in animal models is already a licensed cancer drug so may become available quite quickly if it works in human trials.
I saw a news item this morning which said that people in Wales had much poorer access to cancer drugs compared to people in England. I fail to follow the logic of a National Health Service being run on an entirely local basis. On the same basis I have never really understood why every county has its own police service.
Michael
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Sylvia, no worries - it was meant to be a funny observation - it was not about anyone doing something in particular, but just funny how all of us are talking about Peggy Sull, she is a great contributor, so it's only natural that we are all looking for her on here! Anyways, sometimes it's hard to understand someone's humor on the posts! She was very instrumental in helping me have the right information and wording for me to talk to my PCP about Metformin. I really appreicate all that she does for us.
At any rate, it was her post on July19th that I read and was referring to, when she mentioned her doctor told her to watch for lactic acidosis.
Adagio, I too have been thinking of mushrooms lately! I will check those out that you mentioned. Oh yea, I did read CoQ10 extremely beneficial for the heart. Me too, I'll research more and share with you anything new that I learn.
Have a great day everyone. I'm trying to keep uncomplicated Monday from becoming complicated Monday.
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I had an occasion many months ago to talk to an American breast surgeon who is a friend of my cousin who is a dermatologist....and a BC survivor. One thing he mentioned as we talked was that I should probably have a mammogram after chemo and before rads to make sure all was clear. It is not the routine at my hospital but the breast doc said sure when I asked for it. Had my mammo today and dang if there is not something there at the site of my problem tumor ( I had 2 tumors, both removed by lumpectomy in January....one in situ and one DCIS). Had a good radiologist today who spent a lot of time looking and ultra sounding and comparing new and old films. In the end she could not say for sure, hopes it is scar tissue but does not like the way the spot looks. I will have an MRI on Friday but no results for a week. We all know how totally pleasant the wait is.
Anyone else had this lousy experience? I am mostly flipping out with worry over whether or not the last 6 months of chemo has been ineffective. My last chemo is in Friday. It was supposed to be a week of celebration and happiness. Sigh.0 -
Hello InspiredbyDolce (Debra)
I did have a look back on the post by PeggySull on July 19th and saw that it was on this thread. Apologies. I look upon you as a friend and a great contributor to this thread. You will appreciate that I am trying to keep up to date on all the individual posts, so I had forgotten about the PeggySull post. I can appreciate that her doctor wants to keep an eye on what is happening to her while she is taking metformin.
I do not know how many on this thread are now taking it to prevent recurrence. I have made a note of you and Peggy.
If any others are taking it, let us know and let us know of any side effects.
Will post more later, Debra, when I have more time. I did love your reference about a complicated and an uncomplicated Monday.
Michael and Susaninicking, I shall also post to you later today.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I was glad to know you had good weather at the weekend. It is so enjoyable when you have days that are comfortably warm and sunny. It is true that summer is drawing to a close and it is now dark at 9pm. It is quite cool early morning. Today in Exmouth it is cloudy and humid and not a comfortable day. The Exmouth beach is very busy and it seems as if everyone is eating huge ice cream cones. When they are fed up with those it is fish and chips!!! While we were out this afternoon huge drops of icy rain began to fall but only for a few minutes. I was disappointed because we need rain to help the grass and beds here.
Thank you for the link which I shall investigate later on.
I also read a couple of news articles about the people in Wales and how they had poorer access to cancer drugs compared to the people in England. There is no logic to the fact that we are supposed to have a National Health Service but it is not national. A postcode lottery seems to be in practice. I have read in the past that people in Scotland have better access to drugs than people in England. What is it like in Northern Ireland?
I think the primary care trusts, as they were called, had a lot of power and did what they liked, primarily based on cost. I remember David Cameron promising to get rid of these trusts in his election manifesto, but I am not sure what happened. He may have got rid of them or they may be the same operating under a different name.
I know that recently I asked whether I could have a CTX blood test to see whether my osteoporosis is being helped by strontium citrate with which I am self treating myself. My GP sought information from the lead consultant in the relevant department at the RD&E. The answer came back that the test was not useful and that it was not available in the South West. What kind of National Health Service is that? I bet those who can afford to pay would get it without question. The NHS is a bit of a one trick pony. If you have osteoporosis it is bisphosphonates or nothing.
This country emphasises that we are the United Kingdom but we are not united! We do not have a national education system and Scotland operates differently in many ways, especially when it comes to law and education. We would have to turn ourselves into travellers to get the best benefit from all the systems!!!
That is about all for today. Please remember to let us know how you are getting on with your treatment.
Sylvia.
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Hello susaninicking,
Thank you for your post. I do hope all will be fine with you.
It is difficult to state categorically what a patient should have during treatment. I can only speak for myself. Because I had a large tumour I had preadjuvant chemotherapy, that is chemotherapy before surgery. The chemotherapy shrunk my tumour somewhat but I still had some tumour when I had my surgery, a mastectomy. After the mastectomy when I was recovered enough I had three weeks of radiotherapy and was told I was having it to clear up any stray cells. After the mastectomy I was told I had an excellent pathology report and that there was no visible sign of cancer. I kept in mind the word 'visible' and understood the radiotherapy was to kill off any stray, invisible cells. The only mammogram I had was on diagnosis. I then had mammograms every two years.
I do not know whether when you have surgery first and then chemotherapy you automatically have a mammogram to see what is going on. I do remember that as I was going through chemotherapy and seeing the oncologist regularly that they would measure the tumour with a rule to see how much it had shrunk. It does seem a bit basic now!
Did you receive a pathology report after your surgery?
I did have CT scans and bone nucleide scans before and after treatment.
Since your breast doctor allowed you to have a mammogram, I suppose we have to remember to ask for whatever we feel we need.
I do hope that there is not a problem. You said that there is something at the site of your problem tumour. Can you explain what exactly you mean by problem tumour? I was a bit confused when you said that of the two tumours removed by lumpectomy in January, one was in situ and one DCIS. I thought that DCIS meant ductal carcinoma in situ, so I would think that DCIS and in situ mean the same. On your profile you have put IDC which means invasive ductal carcinoma, so I am a bit confused.
I do hope you will have good news about all this. Let us hope it is scar tissue.
I am sure that we can all understand what an anxious time this is for you. There is nothing worse than uncertainty and waiting for results.
I do hope you will have good news on Friday with the MRI scan. I know Friday is the day of your last chemotherapy and your celebration day.
We shall all be thinking of you. We are all keeping our fingers crossed for you.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
I just wanted to say that we do read a lot about the beneficial effects of mushrooms and there are many different kinds. I have not tried anything in supplement form as I try to avoid taking too many supplements.
I have read a lot about the benefits of Shitake mushrooms which are Chinese. I buy fresh ones and use them in an omelette once a week. I often put tomatoes in the omelette to get lycopene. I do make other mushrooms a part of my weekly nutrition, as they are full of good nutrients and a good source of protein.
If anyone is taking mushroom in supplement form please post and let us know.
I was wondering whether you eat grapefruits. I have read bad information about them but find it hard to believe they are bad for you.
Wishing you well.
Sylvia xxxx
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