Calling all triple negative breast cancer patients in the UK
Comments
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Hello Carolben and PeggySull,
Thank you so much for your very interesting posts.
I shall be answering later today but just wanted to say that I am thinking of both of you, as well as everyone else.
The heat has been getting to me and there is no end in sight. This country seems to be having a heatwave running through the population! There is definitely an atmosphere of sports fever. The population has not really cooled down since hosting the Olympics and now with Andy Murray having the men's Wimbledon trophy and the Lions having the rugby cup against Australia, there seems to be no holding back this strange country of mine. The news is now all about the Ashes (that is cricket, Peggy, and specifically between England and Australia). So far, England is winning and don't we know it! In addition to this, a Brit is all set to win the Tour de France today and a Brit won it last year. Will wonders never cease???
I am not that interested in sport, and do not like all this big-headed boasting we have here. I think we would have more to boast about if we had a more equal society and did not have children living in poverty, people having to rely on food banks and people living on the streets.
I shall post later on today.
Fond thoughts.
Sylvia xxxx
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Hello Peggy,
Thank you for your post.. I was glad to know you are happy with your new gynaecologist and that he thinks outside the box. You must be very relieved to know that your CA 125 test came out as 17 and that it is an excellent score since anything under 37 is classed as good. It must give you a certain peace of mind.
I was surprised that your gynaecologist was able to prescribe metformin. Should this not have come from your oncologist and is your oncologist aware that you are taking it? Did your gynaecologist prescribe it as a breast cancer preventive treatment? Did he prescribe it for something else? If you stay in the clear how will you know that it is because of the metformin? Let us know if you have any side effects from this medication, as I do know people with diabetes who have stopped taking it because of side effects.
Wishing you well.
Sylvia xxxx
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Hello Carolben,
Thank you for your post. I do hope all will go well on Tuesday. You are nearly through this and that is what you must keep telling yourself.
I was glad to know you had read the bc.org on PTSD and found it interesting. We need to keep informing ourselves and keeping up to date on information. We do not have to swallow it all as gospel. We can choose what seems logical and credible and have question marks about the rest.
Personally I cannot identify with chemo-brain with reference to slow thinking or forgetfulness. I feel my brain works just like it did before treatment. What I can identify with is the effect on the brain of a cancer diagnosis. My experience in this respect is just as you describe it. You cannot get the sentence stating cancer out of your mind. After that initial diagnosis, I could not get the words 'you have breast cancer' out of my head. Day or night it was in my head and I could not focus on anything else. Once I had got through my treatment and realised I had survived it, I started to regain a certain sense of normality, but of course the fact of cancer remains there for ever. Over eight years on I still cannot take any thing for granted.
I can only imagine what it was like for you to be told it had spread.
There is no doubt in my mind that it is the treatment and not the cancer that makes you sick and weak. I can only say that my elderly uncle who had mesothelioma, diagnosed very late in his life, and was given two months to live, survived two years with no treatment and had discomfort just about a week before he died.
To know for sure about quality of life and duration, we would have to be able to compare large numbers of women with cancer, and let us say with breast cancer, not having any treatment with those having treatment and try to work out whether it is the disease that kills you or the treatment. How many women are refusing all treatment after a diagnosis of breast cancer and how many of them survive? What happens when the tumours start to fungate, smell and can burst through the skin?
It could be that surgery is the most important part of cancer treatment. I have a neighbour who was diagnosed with breast cancer about thirty years ago, had just surgery and is still alive and well.
Chemotherapy has to be the worst of all. It poisons our bodies.
I was interested to know that you had been watching the Ashes. Are these teams really playing well?
You are right about the heat. It does take it out of you. One of my friends here has friends from South Africa coming to stay here soon. They come every year at this time. They live near Cape Town.
As for CA125, we had been talking about it on the thread. It is a blood test to detect ovarian cancer. We certainly do not have this test here, but I think we should have it. Apparently, with ovarian cancer, it is often discovered too late. Sometime back I posted links to newspaper articles about it.
Wishing you well and a speedy recovery from chemotherapy.
Fond thoughts.
Sylvia xxxx
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Sylvia,
I asked my oncologist for metformin and until the 2016 clinical trial results are in he was unwilling to prescribe it. I told him it was my life not his and I was going to get it from another doctor. He was fine with this.
I had liver function blood test before starting and will be monitored closely re side effects (and haven't been on it long enough to really have any (2 days)). I will also get liver function tests every 3 years.
I know what the dangerous signs are and will have to discontinue if I have them. In the meantime I see it as a personal decision to possibly, and I mean possibly, reduce my risk of recurrence along with exercise and a healthy diet, etc.
Metformin has been on the market for many years and is inexpensive with a known side-effect profile.
Smaller studies have shown promising results particularly for some tnbc patients,, but until the 2016 data from the big clinical study are in there is no "strong" science behind it. I'm willing to go with promising results in the meantime since I'm worried about surviving the next 3 years. Again, personal decision all the way around...
Hope this makes sense even if people disagree about whether or not to take it.
Peggy0 -
Hello PeggySull
Thank you for your post. I do perfectly understand your point of view and your decision to take metformin. As you say, it is a personal decision for you and I respect that. I think we are all into making personal decisions with this disease and really with everything that confronts us in life.
We all make personal decisions about our diet and I know that I did that when deciding eight years ago what I was going to eat and drink for the rest of my life. I think it is the same for exercise. I have been eating bitter apricot kernels since diagnosis because they are supposed to kill cancer cells. I have heard negative things about them but I ignore it all. I am still here! It was the same when I decided to take Iscador and other homoeopathic treatments with all of my cancer treatments and to stay with a breast cancer consultant and homoeopathic as well. I went through all my cancer treatment with relative ease. Did the homoeopathy help? Who knows?
I do hope all will go well with the metformin.
Fond thoughts.
Sylvia xxxx
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Hello InspiredbyDolce,
Thank you for your PM. There are many kinds of calcium and the one commonly prescribed here is calcium carbonate, but I have read that it is not easy to absorb and I think it is prescribed because it is very cheap. The calcium that I take is calcium citrate and it is in a bottle of Solgar Ultimate Bone Support (advanced calcium complex with vitamins D3, K2, zinc, and boron. It has also got magnesium citrate, manganese, copper). I think this is probably the best supplement you can find. I take extra vitamin D3 and I get it from a bottle of Solgar Vitamin D3 Fish Liver Oils soft gels. 1000IUs or 25ug each capsule. I also take extra magnesium in the form of magnesium citrate 100mg tablets. I also take extra Vitamin K2 50ug tablets.
I take all this to try to treat my osteoporosis.
Every morning I take 640mg of strontium citrate in a bottle of Drs Best Strontium Bone Maker (Strontium citrate).
You need to wait about two hours after taking the strontium before taking any calcium.
Apart from this, all I take for my general health is a good vitamin and mineral supplement and a vitamin B complex supplement.
I hope all is well with you and I hope this helps.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Liz's friend had her portacath put in today so blood tests can be taked easily and the chemo can be given easily too.
She has her first chemo, Taxol this Friday.
When they arrived at the hospital this morning at 8.15am they said that they had no bed for her anywhere in the hospital. She said see would sit in a chair instead so they said yes and she finally had it put in at about 11.30am.
Liz did not like it at all at the hospital on the ward as it brought back a lot of bad memories.
Better news is the holiday was great at Torbay. There are some lovely places in the area. We went to Kents Caven which is a group of caves in Torquay. Not as good as Cheddar caves but worth a visit. The steam train ride from Goodrington to Dartmouth was great and Cockington village is made up of old thatched houses with horse and cart rides.
We have had the hottest day of the year so far in Norfolk today.
We are planning a trip to North Devon in a weeks time if the weather stays nice.
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Peterandliz,
I am sorry Liz has to go through taxol and am hoping she finds it easier than previous chemo.
I drive past the place I got chemo every other day and it always gives me the creeps. I know if I were back sitting in one of those chairs I would do a good bit of raging and sobbing.
I found taxol much more tolerable than AC. No nausea and bone pain taken care of by good pain meds. Toward the I was extremely tired, though. I could not even make it up a flight of stairs. Now I am doing aerobic 45 minutes a day. So all this goes away. A few weird things with my nails. But when all is said and done the re-starting of chemo is traumatic for you both.
Fingers crossed that Liz tolerates taxol well.
Hugs,
Peggy0 -
Hello peterandliz,
Thank you for your post. I do hope all will go well with Liz's friend when she has her first chemotherapy on Friday. I am sure we shall all be thinking of her and we shall all have our own vivid memories of what it was like when we went through chemotherapy. I get the impression that Taxol (paclitaxel) is being used a great deal. I think we all know that it belongs to the group of chemotherapy drugs known as taxanes. The other one is Taxotere (docetaxel) and I would think they must be very similar. They are both supposed to be very effective at treating breast cancer with triple negative receptors.
All that hanging about at the hospital must have been very draining for Liz and her friend and I can understand how it brought back memories for Liz. I know that when Raymond and I go to Exeter and pass by the road that leads to the RD&E Hospital, where I had all my treatment, I get funny feelings going through my body.
Let us know how Liz's friend copes with her chemotherapy and any side effects that she might experience. She will need to drink a lot of water, get plenty of rest and keep looking forward to when the chemotherapy comes to an end.
I was glad to know that you had a good holiday in Torbay. You certainly had good weather. We are not all that familiar with the areas around Torquay. We have been to Torquay itself but always found it too busy for our taste. We have been to The Willows shopping centre to the big Marks and Spencer store but found it all a bit hectic.
We know East Devon, Mid Devon and North Devon much better. North Devon is really beautiful and we used to go regularly to either Bideford or Barnstaple and most of the time would take the scenic route there, going from Exmouth, Exeter, through Crediton and then on to Torrington to Bideford or taking the other road and going to Barnstaple. I am always amazed at how beautiful and empty the countryside is once you leave Crediton and head for Torrington. Sometimes we came back from these places via the North Devon Link road.
Another favourite drive was the scenic road from Exeter to Tiverton through Mid Devon. It is very peaceful and not built up as is the road between Exmouth and Exeter. Tiverton is a quiet little town and has the attraction of the Great Western canal. You can take a horse drawn barge trip on it.
In the past other favourite drives have been from Exmouth across Exmoor to Minehead, and Exmouth across Dartmoor, stopping near the prison and going on to Tavistock.
We also liked the coast near Croyde.
We do not do as much travelling now.
That is about all for now. The sunny weather continues but we are really desperate for rain.
Best wishes.
Sylvia.
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Hello everyone,
I hope the week is going well for you.
To Carolben, I do hope all went well with your chemotherapy today and that you are not feeling too bad. You are nearly there now. July will soon be out. If you feel up to reading and can get hold of it, you might find the book I am reading of great interest. It is “The 10 Secrets of Healthy Ageing” by Patrick Holford and Jerome Burne. It is very readable and a good reference book. Of particular interest was Secret 6, page 177 to 198, Stay Free from Cancer. What is good about this book is that you get a summary of the chapter at the end of it. I shall try to post some of it.
Patrick Holford is very well know here and has written more than thirty books.
Take care of yourself.
To sam52, I hope you are now on your long summer break from school and that you will have a bit more time for yourself.
To Michael, how are you and how is your treatment progressing?
To adagio, I hope you are having a good summer over there in Canada.
To linali and Mumtobe, I hope all is well with the two of you.
To PeggySull, and InspiredbyDolce, my fond thoughts are always with you.
Thinking of you all.
Sylvia.
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Hi Sylvia,
We have just heard from the hospital concerning Liz having her ovaries removed.
It was only a couple of weeks ago that Liz went and talked it through at the hospital. Because Liz told the gentleman that the main reason for having them removed was because we have a handicapped son so she would do anything to stay alive for him so wanted them removed.
We received a phone call today booking her in for a pre op talk and test? on the 21st August and the operation on the 17th September. Now considering she has no major medical reason for this it has come through very quickly. She only had the blood test for the BRCA gene on the 2nd July so will not have those results back until the end of August. It is actualy written on the medical notes "reason for removal because of her handicapped son"
Our problem now is we have planned to holiday up to the end of November on and off so do we postpone the op until the end of November? bearing in mind Liz's friend is dieing of ovarian cancer or go with the earliest dates?
I know these are very easy decisions and sound very small compared to many others on here but our main point from day one has been to make the most of the time we have been given, have as many holidays and nice days out with our son as possible. These dates will stop us going to America and Canada for 2 weeks at the end of September. We all know there is a 20% chance it may not be possible next year if the cancer came back
Regards
Peter
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peter - that is a tough decision for you to make. I would think that since you both really want the surgery that it would be best to go with it ASAP. I haven't had an oopherectomy, but I think it is a fairly straight forward procedure with a short recovery time - so perhaps rather than cancel your trips - simply postpone them until after recovery. Good luck with your decision.
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I have had this surgery and so have 2 of my 3 daughters.the 2 daughters both had it done within a month ago, and both of them are away camping right now.we all carry the brca1 gene and I had mine fone 6 yrs ago while all 3 of my daughters did the bmx .3rd daughter is 9 months pregnant so after this baby she will also be going for the ooph.the one daughter had a bit of problems the first week but she is also a type one diabetic and has a 10 yr old and a 1 yr old so couldnt lift the baby, but she is fine now, and my other daughter said she didnt have any problems but because she is a mail carrier she will be off for 6 weeks because she isnt supposed to lift and carry mail.if surgery is at end of sept I csnt see why you cant go on vacation, just dont let her lift or carry heavy items
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Hello peterandliz
Thank you for your post. I was surprised to read that Liz's operation is going ahead so quickly, given all that is going on in the NHS. It is very difficult to say what to do for the best, so I think I can only say what I would probably do. I think I would definitely wait to get the blood test result to see whether I was positive for the BRCA gene before undergoing any surgery, especially as you say at the moment there is no major medical reason for all this to be happening quickly. I do not remember how old Liz is but I was told that if you develop breast cancer as a young woman you are more likely to carry the BRCA gene, especially if other family members have developed it at a young age.
I feel that surgery is not something to be undertaken lightly. There are always risks from anaesthetic etc. and surgery is a trauma to the body and will have effects on the immune system. Why not make a compromise and have your holidays in America and Canada and then think about everything when you get back?
Ultimately it is for you and Liz to discuss and then really for Liz to decide. I can understand the concern and fear she must feel because of what is happening to her friend but she still needs to concentrate on herself and do everything she can in her daily life to try to prevent the breast cancer coming back. This is what all we cancer survivors have to do.
I hope this helps.
Thinking of you and wishing you well.
Sylvia.
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Hello everyone,
I thought I would just post the summary of the section in Patrick Holford's book that I mentioned in a previous post. This is: Secret 6 – Stay Free From Cancer. Here is the summary that is on page 197. It reads as follows:
To strengthen your body against cancer.
Do not smoke.
Eat plenty of antioxidant-rich and anti-inflammatory foods.
Keep your Omega-3 levels up, to reduce inflammation.
Keep your glucose and insulin levels down with a low-GL diet, such as our Anti-ageing Diet.
Control your weight.
Minimise the amount of dairy produce you consume.
Eat plenty of beans and greens (they are rich in phytoestrogens and oestrogen blockers).
Minimise your intake of deep-fried and crispy foods.
Eat organic fruit and vegetables as much as you can.
Do all you can to minimise your exposure to carcinogens and hormone disrupters.
In terms of supplements:
Increase your intake of vitamin D through exposure to sun and taking supplements – whatever you need to achieve a blood level above 100 nml/l – normally 2000 IU.
Supplement at least 2 grms of vitamin C a day and, ideally, an all-round antioxidant formulae.
Check your vitamin B levels to ensure you have good methylation and DNA repair.
If you have or are at risk of cancer, supplement salvesterols and consider upping your vitamin C intake dramatically.
There is an added note saying “See Part 3 Chapter 7 for your general supplement programme and Recommended reading for other helpful books on this topic”.
In case you are not looking back at previous posts, which you should be doing if you want to follow information properly, the title of the book is “The 10 Secrets of Healthy Ageing by Patrick Holford and Jerome Burnes”. You will be interested to know that there is a free online bio-age check.
Secret 6 page 177 Stay free from cancer, is highly readable and divided into useful headings, starting with The Possibility of Prevention and then What Causes Cancer and How You Can Cut Your Risk, How Diet Affects Your Cancer, Are Drugs the Answer – or is Prevention Better?, Positive Steps We Can Take, divided into Increase Vitamin D, Clean Up Your Carcinogen Act, Load Your Diet With Antioxidants, Protect Yourself With Vitamin C, Balance Your Blood Sugar, Keep Inflammation Down By Eating Fish Oils, Take Sufficient B Vitamins, Keep Exercising.
The last heading is Fruit and Vegetables Can Target Cancer Genes.
I shall treasure this book as a reference book and I shall buy others of his.
I like the fact that the books have been categorised and colour coded into different general subject areas. They are Essentials, Weight, Mind, Body, Children.
You can always look up www.patrickholford.com.
Another week is drawing to an end and it has been a busy one for me. At least we had a lot of rain in Exmouth during the night and everything seems much fresher and cooler this morning.
Best wishes to everyone.
Sylvia.
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Hello everyone,
Please keep this thread active.
Best wishes,
Sylvia.
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Good afternoon Sylvia,
I was watching a TV programme on the IPlayer last night called "Landlords." There was a 35 year old single mother who has advanced breast who was being evicted from her home because the landlord wants to redevelop and as it is London she was finding it impossible to find alternative accommodation. She approached her local council but they couldn't help her as she was capable of walking unaided. I was staggered at the inhumanity. She does find somewhere eventually.
I echo your comments to peterandliz earlier re surgery.
I hope everyone has nice weather for the weekend.
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Hello Michael,
Thank you for your post. It is always a pleasure to hear from you. I shall try to watch the programme Landlords that you mention. What a sad story about a single mother with advanced breast cancer being evicted from her home because the landlord wanted to redevelop. I often get very disillusioned about this country and the great inequality and selfishness we have in it. I think the council was out of order in not being able to help her. I think that having a roof over your head is a basic human right for everybody, along with food and heating.
I was so glad to know that the woman does find somewhere to live in the end, but there is something really wrong with this country that a person can be evicted like this, especially a single mum with advanced breast cancer. I can understand how staggered you were at this inhumanity, but it is going on all the time. Man's inhumanity to man knows no limits.
I do hope peterandliz will resolve their dilemma.
Have you been reading about all the extra deaths that have been happening over the past eighteen months? I believe it is about 600 deaths a month extra. It seems a lot but we would need more information to understand what is going on.
How are you getting on these days? How is your treatment going and how are you feeling? Do you spend most of your time in Northern Ireland?
It is still hot in Exmouth but there is supposed to be a lot of rain this weekend. We really need it.
How are things going with the Janette Collins Foundation?
Fond thoughts. Take care.
Sylvia.
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Hi Everyone,
Even though our problem is so small compared to what a lot of people are going through We have decided that it is in Liz's best interests for her to have her ovaries removed as soon as possible. We have moved both appointments back by 2 weeks so we can still go on holiday but instead of flying to the USA and Canada we are going to drive to the French/Swiss Alps instead. This way if Liz finds out she does have the cancer gene and gets an earlier appointment we can cancel the trip without any cost to us. We will still book the holiday at the end of November to the Canary Islands as Liz should have recovered by then.
We had heavy rain for 2 hours here in Norfolk last night. We have the tent and everything else packed ready to leave for Devon again tomorrow morning but have decided to leave it for a few days as its not looking good for camping. We can still remember 4 years ago having 3 inches of water in the tent after a lot of rain.
Regards
Peter
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Hello peterandliz,
I was glad to know that you seem to have sorted out what you want to do. You have done what you think it is best for you to do and that is all you can do. I hope that all will go well with Liz when she has the surgery. I hope you have a good time when you go the French/Swiss Alps.
Please let me know what happens about the genetic testing.
We are waiting for the heavy rain to hit Devon as we desperately need it for the grounds. At present we are just getting showers but the experts keep threatening us with lots of rain. The weather has cooled in Exmouth but is still very pleasant. We actually got back to walking today and felt so much more energetic than we did during the heatwave. I hope you do make it to Devon for your camping holiday.
I cannot think of anything more miserable than being under a tent in wet weather!!!
Back in 1976, when I first knew Raymond, we went on a camping holiday to Oxwich in South Wales. It was during that long heatwave and that was really uncomfortable. It was my first and only experience of camping but I even managed to cook up some gourmet French meals!!
Sending you both my very best wishes.
Sylvia.
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Hello everyone,
It has been a very quiet weekend on the thread, but I imagine that most of you are out enjoying the summer weather (Carolben, sorry, it is your winter). We have to make the most of it as August will come and go very quickly and autumn will be upon us. I would be very interested to know what you are all doing to relax.
Thinking of you all.
Best wishes.
Sylvia.
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BBQ here in Bavaria.....so hot and since we only have maybe 4 days a year that are very hot, no one has air conditioning. Today is one of the 4 days a year that we are overheated! Storm is blowing in and the wind feels fabulous.
Stay well everyone!0 -
Hi All!
Sylvia, which book will you treasure? The Anti-aging one is the one you recommend for us? I printed out your post.
I found the discussion with Metformin interesting, when PeggySull posted her update.
In the Calling all TNS forum, there are many, many, many women who were unsuccessful in getting the Metformin from their Onc, and got it easily from their PCP or alternate doctor. It is always a topic, as many women (like me) want to be on it.
I feel the Oncs who say no and won't prescribe it, are probably denying access to it from a liability perspective.
Mine said it would affect the billirubin. I am though, on a mission to find out more about Metformin and also try to get on this drug. I've had several women send me links to information, and I've asked Peggy to further tell me about the conversation, so I can be prepared on what to say, and how to ask for it. I really do feel it is the next breakthrough, much how Tamoxifen was originally on the market and approved by the FDA for something else.
I feel the risk of taking Metformin outweigh the risk of a recurrence, as do many girls on the Calling all TNS forum.
Now, the interesting thing is, my Onc, who wouldn't approve it, tried hard to get me on Tamoxifen. Most Onc require you to be 10% ER+ before going on it, but when he thought I was ER+ of 4%, he prescribed it, but then we ran one new test (GenOptix) and it confirmed I'm not ER+ at all. So he had to say no, and he said that it would not be effective on me.
He didn't say that about Metformin though. He just mentioned that there is no proof yet that it works.
The girls on the forum, who got their Metformin from an alternate doc (not from their Onc) ... I believe all of them informed their Onc at their next appointment, and all the Oncs have said "ok", and I remember one person's Onc said "I'm so glad that you were able to get that" ... which was from an Onc who would not prescribe it. So maybe it opens up the Onc to a liability measure if they approve something off label.
I wonder if there is a way we can find out how the trial is doing right now? What are the most recent stats of it?
Have a great day everyone!
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Hello susaninicking,
What a nice surprise to hear from you. How are you getting on? Have you finished chemotherapy or are you still going through it and then starting radiotherapy in September? Am I reading the dates the right way round? I do hope all is going well.
I can sympathise about the heat. It has been hot here for about three weeks but has cooled down a bit now in Exmouth. I also miss the air-conditioning that we had in Canada.
We have had some well needed rain and cool winds and it has been such a relief.
Keep in touch and take care.
Best wishes.
Sylvia xxxx
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Hello InspiredbyDolce (Debra),
The book that I shall treasure and that I am still reading is “The 10 Secrets of Healthy Ageing” by Patrick Holford and Jerome Burne. There is so much useful information in this book that I shall keep it as a reference book. I am also going to buy other books by these people and have got my eye on “The Opitmum Nutrition Bible” and “The Low-GL Diet Bible”. The problem is finding the time to read them all.
I always look out for any posts from PeggySull as I find she is very informed. I do read the posts on Calling all TNS and have become familiar with some of the names that I find have good information and look out for them. I know that Metformin is very much in the news. I think that taking it is a very personal decision. I have noticed that lots of the American women posting seem keen to take it.
I am sure that you will do a lot of thorough research on your mission to get Metformin. Let me know what you find out and whether you end up taking it. In the Healthy Ageing book that I am reading, chapter 4, Staying Drug-free as You Age, page 45, Drugs Steal Your Vitamins, it is stated that the diabetes drug Metformin brings down your vitamin B12 levels and that B12 is needed for effective DNA repair among many other things. This chapter is very interesting and points out the downside of taking drugs regularly, especially as you age.
On page 43 there is a paragraph entitled “Diabetes Drugs Raise the Risk of Heart Disease”. There is concern expressed about the prescribing of drugs for diabetes type 2 and it is stated that “Heavily promoted drug strategies to aggressively reduce blood sugar in people who have diabetes have raised people's risks of heart disease and death rather than lowered them, despite evidence that lifestyle changes are cheap and effective”.
One concern of mine with taking Metformin would be what effect would it have on women, taking it to prevent a recurrence of breast cancer, who have normal blood sugar levels? What do you think about this? Is it going to lower normal blood sugar levels to dangerously low ones?
You said your oncologist said that taking Metformin would affect the bilirubin. You need to know exactly what this means. How would it affect bilirubin? As I understand it, bilirubin is the chief pigment in human bile and is derived from haemoglobin and is involved in a natural process in the body. If metformin is going to affect this process then I feel that this cannot be good.
Only time will tell if this is the next breakthrough in the treatment of breast cancer.
Let us not forget that Tamoxifen is not without serious side effects and I am glad I am not taking it. I have read that if you take it long enough you can end up with TNBC anyway. I think I have also read that it can cause ovarian cancer. As for whether women with some percentage of ER+ should be on Tamoxifen seems to depend on individual oncologists. All I know is that when I was diagnosed I was 5% PR+ and my consultant said that was negligible and counted as negative.
I can understand why oncologists are refusing to prescribe it. Obviously they will not want to take any risks at this stage. My oncologist has never mentioned Metformin to me and when I ask her there have been any breakthroughs with TNBC she says no.
As I have said before, on this cancer journey, many decisions that are taken are personal choices. For example mastectomy versus lumpectomy, bilateral mastectomies, especially as preventives versus treating only the breast affected, accepting or refusing chemotherapy, accepting or refusing radiotherapy, reconstruction versus no reconstruction, etc. A person has to make their choice and live with it.
Good luck with your research into Metformin and good luck with obtaining it if that is what you want.
Wishing you well and thank you for an interesting post.
Best wishes.
Sylvia xxxx
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Hi Sylvia,
Doing fine here, 5 more infusions of weekly Taxol then 8 weeks of rads. Having a super easy time with the Taxol and I'm GRATEFUL! My nausea was never too controlled with EC...a fairly miserable 3 months.
It is pouring rain now and went from 30 something yesterday to a current 15. In Fahrenheit 90 to 60 in one day. I vote bring back the sunshine!
Thanks for the note. I'm doing better at keeping up in this forum!0 -
Hi Sylvia - great post. Many thoughts to ponder - my MO did tell me that there was a metformin trial in process but by the time I started chemo, I was too late for it. In retrospect I don't think I would have done it anyway simply because it is introducing yet another drug into the system which the body has to process - plus, no one knows for sure that it works!!! A bit like chemo really!! I also have read about a few women who are already on Metformin for type 2 diabetes and they got cancer - so perhaps (like most drugs) it will work for some but not for others. When I saw a naturopathic oncologist he was much in favour of using metformin and would have written a prescription for me. For now, I am simply eating a good diet, exercising moderately and taking the supplements which I believe are essential for me.
I still read and enjoy the forum - but am very much enjoying not thinking much about cancer.
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Hello susaninicking,
Thank you for your post. I was glad to know you are doing fine and that you will soon be finished with chemotherapy, just five more weeks, but then eight weeks of radiotherapy. That sounds a lot of radiotherapy.
It is good to know that you are not having a bad time with Taxol and am sure that we are all happy for you. Have you been taking anything in particular to prevent side effects? I do not necessarily mean drugs but natural things. I did not have any nausea etc. but I did drink ginger tea with grated root ginger in it, took ginger capsules and had a few ginger nut biscuits.
Your weather is about the same as ours, though we have not gone as low as 15c here in Exmouth. Today it is quite sunny but we have had plenty of rain during the night. It is about 19c today. This suits me!
I am always glad when people pop in to the thread to let us know all is well with them. Keep up the good work with your treatment and remember we are always happy to hear from you.
Fond thoughts.
Sylvia xxxx
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Hello adagio,
Thank you for a very interesting and thoughtful post. I think we have the same thoughts about metformin. As you say, taking it is just introducing another drug into the system which the body has to process. I can understand why you would not have wanted to go into a trial. I admire those who do because ultimately they are being used as guinea pigs. It will be interesting when we have some results of these trials but even then I shall have doubts. I have read too much about trials being conducted to prove what they want to prove! Some of the side effects of metformin (brand name Glucophage) remind me of the side effects of chemotherapy drugs! They are loss of appetite and a metallic taste, nausea and vomiting, not to mention diarrhoea. Other side effects may be dizziness and confusion, weakness and sweating, and rash. Apparently, there is the problem of interaction with other drugs which can increase or reduce the effectiveness of metformin.
I agree with you that, like most drugs, metformin as a preventive for recurrence in breast cancer may work for some but not for others. It is like tamoxifen (brand names Nolvadex, Soltamox) for hormonal breast cancer. It does not work for everyone and there are tamoxifen failures. Of course, tamoxifen has side effects. A friend of mine on tamoxifen, after treatment for hormonal breast cancer, is putting on weight. She does not like this and it happens despite the fact that she does a lot of physical exercises.
Like you, I am eating a good diet, doing walking and gardening and taking just a few supplements, mainly for osteoporosis but for good health vitamin B complex, vitamin C, and a multi vitamin and mineral supplement. I think we are on the same wavelength.
I was glad to know that you still read and enjoy the forum but really glad to know that you are enjoying very much not thinking about cancer. That is the way to go forward. Remember that we do need posts to keep the thread going and it is nice to look upon the thread not only as a support and comfort medium, not to mention information centre, but also as a friendship club. We are all much more than our cancers!
Thinking of you.
Sylvia xxxx
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Hello everyone,
Since we are all interested in good nutrition on this thread, I thought I would post the following information which I found in the Patrick Holford book I am reading. This is all about foods that are high in ORACs (oxygen radical absorbage capacity). On page 190-191, under the heading ORACs: your dietary antioxidants. This is all about the foods we should be eating. It backs up what we know from Chris Woollams about the rainbow diet.
Page 191: Top ORACs scoring foods.
1. 1/3 tsp cinnamon ground.
2. 1/2 tsp oregano dried.
3. 1/2 tsp turmeric ground.
4. 1 heaped tsp mustard.
5. 1/5 cup blueberries.
6. 1/2 a pear, grapefruit or plum.
7. 1/2 a cup blackcurrants, blackberries, raspberries, strawberries.
8. 1/2 cup cherries or a shot of CherryActive concentrate.
9. An orange or apple.
10. 4 pieces of dark chocolate (70% cocoa solids).
11. 7 walnut halves.
12. 8 pecan halves.
13. 1/4 cup pistachio nuts.
14. 1/2 cup cooked lentils.
15. 1 cup cooked kidney beans.
16. 1/3 medium avocado.
17. 1/2 cup red cabbage.
18. 2 cups of broccoli.
19. 1 medium artichoke or 8 spears of asparagus.
20. 1/3 medium glass (150 ml) red wine.
Source: Oxygen Radical Absorbance Capacity of Selected Foods – 2007, US Dept of Agriculture.
With reference to the chart of ORACs, it is stated that each serving contains about 2,000 units and it is suggested that you pick at least three daily of the twenty listed to hit your anti-ageing score of 6,000.
Remember that we can get hundreds of antioxidants from our foods. The main essential antioxidants are vitamins A, C, E and the precursor of vitamin A, beta carotene.
Do not forget that there are other important antioxidant ingredients in food, such as flavonoids. On page 190 of this book, they list some of these, as well as anthocyanidins. You can get some of the above in foods such as onions, green tea, chocolate, beans, berries and red grapes.
This shows the importance, as we should all know by now, of eating a very varied diet and one that includes in particular all the highly coloured fruits and vegetables.
You will notice that a lot of these foods are also quoted often as part of an anti-cancer diet and a general healthy diet.
I hope to have some comments from you. I hope that some of you will read all of this in more detail for yourselves.
That is all today.
Best wishes.
Sylvia.
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