Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio,
It was good to hear from you. I should think after your holiday in Jamaica you will have a good supply of vitamin D.
I have just ordered the book about which I was talking by Mosley, The Fast Diet. I do not need to lose weight but I want read about intermittent fasting and how it helps the immune system, in more detail.
Have a look at the latest posts on TNS and tell me what you think about the latest discussions on vitamin D.
I have had a very busy day, so I shall write in more detail tomorrow.
What is your weather like out in BC?
Fond thoughts.
Sylvia xxxx
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Hello Michael,
This is just a quick post as I am feeling pretty tired, but I shall write more tomorrow.
With reference to the blood transfusions and breast cancer, I do remember Gill saying that it was all very recent and that some of the doctors at her hospital were not aware of it. I shall try to find out more tomorrow, as I think this is extremely important.
As for the drugs that have been taken off the cancer drug fund, I know that there were about three related to breast cancer treatment, some to prostate cancer and others. They are on a fairly recent post of mine, so you might want to look back. I shall look back tomorrow and repost them.
It could be that Tom may be able to help us with this. He is probably busy looking after his wife as she continues on chemotherapy.
I shall post more tomorrow.
Best wishes.
Sylvia
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Hi everyone and lovely to hear from you all and to know we are here for each other.
I have booked a week away in Tenerife for a week on Saturday, going with my daughter for a bit of r and r and hopefully some sun, that vit D as you say Sylvia. I am taking a cod liver oil capsule which of course contains vit D each day and I also think my joint stiffness is improving.
BTW does anyone know if we can get our vit D levels checked on the NHS? My good friend who has tnbc had hers measured after having abnormal liver function tests and her vit D was found to be very low and she eats the most healthy diet with lots of fish. She is now prescribed a high dose vit D medication
Love and best to everyone
Sue x
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Hello adagio,
I am posting to get your opinion about vitamin D. I was very surprised to read on TNS a post saying that it was prudent to be careful about vitamin D intake because high doses can cause osteoporosis. I was surprised because the medical profession treats osteoporosis with vitamin D and calcium. I was also surprised to read in that post that vitamin D can cause high levels of calcium, leading to hypercalcaemia, hardening of the arteries and heart disease.
I have read quite often about the danger of calcium supplements, the leaching of too much calcium into the blood and heart disease. There has been quite a lot of publicity about this, but I have not read anything about vitamin D and these problems. Do you have any information?
I know that we have all read about low levels of vitamin D and breast cancer, and that a lot of us are probably taking high dose vitamin D as a preventive and that a lot of us are getting checked out for our vitamin D levels and trying to increase the level if low.
I remember that you have osteoporosis and you will probably remember that I have it as well. Mine was caused by an undiagnosed parathyroid gland (now cured since 2009) and chemotherapy treatment. I am taking 3,500 units of vitamin D and have been doing it for some time. I had my vitamin D level checked at the hospital, probably in 2009, and was congratulated on my high level.
What do you think about all this?
I would love to hear what you think about the 5:2 diet when you have done some research.
In the latest edition of my Radio Times, January 24th to Friday 30th, under the Food section, an article entitled "A vegan diet saved my life" by Ella Woodward, caught my attention. After many tests she was diagnosed with Postural Tachycardia Syndrome, a relatively rare illness and was spending most of her time in bed. On the internet she stumbled across articles by cancer patients who had changed their diets. She read a book by Kris Carr, who had been told that her tumour was untreatable. Kris gave up loads of food, meat, dairy, gluten and anything processed and is now well and healthy. Ella Woodward started to change her diet and gradually her symptoms subsided and she decided to adopt a vegan, plant-based diet fee from dairy, gluten and sugar. For motivation she started a blog and started posting new and tasty recipes. Last month that blog notched up 700,000 hits a week and Ella Woodward, now 23, has 250,000 followers on Instagram. Ella Woodward, apparently, has now been off all medication for eighteen months and is 100% healthy. Have you read anything about this? You can read Ella Woodward's blog at deliciouslyella.com. For those of you in the UK she is a guest on 5 Live's Afternoon edition on Monday. Besides her blog she has written a book.
I think I am going to try to look at this as well as to find the book by Kris Carr who was told that her tumour was untreatable.
On the other threads there have also been posts about whether people should be drinking alcohol to prevent cancer etc. I think this is a decision patients need to make for themselves. I do not think it is any use some people saying it must be alright to drink because they personally did not drink but still got breast cancer. It is not as clear cut as that, or as black and white as that. We all know that drinking alcohol is a risk factor in breast cancer. That does not mean to say it caused your cancer. There are many risk factors and alcohol is one of them. Based on that you make up your own mind what to do. It seems a pity that in the western world a lot of people seem to think that you cannot have fun without drinking. Any thoughts?
Try not to overwork and always take some relaxation time.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I have just been doing a bit of research about vitamin D and can find nothing that says it causes osteoporosis or any other damage. Everything I read points to it helping with strong bones and that it is more effective than calcium in promoting strong bones. There is information about the problem with calcium supplements and heart problems. I try to keep my bones as healthy as I can and hopefully through my diet keep my osteoporosis in check.
That is all for now.
Sylvia
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Hello Michael,
You might want to look at the following links for information about drugs that have been withdrawn from the cancer drug fund.
http://www.telegraph.co.uk/news/politics/11340860/25-cancer-drugs-to-be-denied-on-NHS.html
You were asking about blood transfusions and recurrence in cancer patients. I have been looking briefly and have found the following links which may want to look up. I am going to have a look this afternoon when I have more time. The links are as follows.
http://www.nhs.uk/Conditions/Blood-transfusion/Pages/Risks.aspx
http://www.webmd.com/breast-cancer/guide/treatment-chemotherapy?page=2
I find it mind boggling the amount of information on these links.
That is about all for today.
Best wishes.
Sylvia
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Hello everyone,
I have just looked up about donating blood on the following link and it states quite clearly that you cannot give blood if you have had cancer. I have not given blood, but nobody at my hospital has ever told me this. If you go to donate blood are you asked whether you have had cancer or is nobody checking? If you are not checked could possible cancer cells be being passed on to healthy patients if they happen to need blood? Could cancer be passed on in this way?
Food for thought.
http://www.cancerresearchuk.org/about-cancer/cance...
Best wishes.
Sylvia
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Hello Sue,
I shall post to you later on today.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I posted about the cancer drug fund etc. on my post to everyone on January 15 at 10:01 on page 192, so you can read it there.
I have not finished answering your latest post as I do have comments to make about this coalition government. I do share your view that they are completely messing up our NHS and I fear that it will be completely destroyed if they get back into power. I shall post more later.
I hope your dog is getting better, What is her name?
Best wishes.
Sylvia
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Hello Sue,
It was nice to hear from you. I was glad to know you are going to have a week in Tenerife. It will do you and your daughter a lot of good after all you have been through. As you say, you will be able to top up your vitamin D level naturally in the sun but do not stay out in it too long. It does not take that long in the sun to get a maximum dose. After that the vitamin D is wasted.
I was brought up on bottles of cod liver oil as a child and I am sure your cod liver oil capsule can only do good. It does not usually contain a lot of vitamin D but it does have valuable omega 3 oil and that is very good for stiff joints.
You should be able to get your vitamin D levels checked through the NHS. I certainly did in 2009. It is probably better to request it through your oncologist or breast cancer consultant. Let me know how you get on.
I have read a lot about low levels of vitamin D and breast cancer. It is mainly about breast cancer patients being checked and found to have low levels of this vitamin. I have also read that vitamin D is not really a vitamin but a hormone.
I hope you are managing to keep in good spirits.
Have a good holiday.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
As I said in my previous post, I was very interested in what you said about this coalition government ruining our NHS. They should be ashamed of themselves. I think that in 1948 when the NHS started it was our proudest moment and I do not think any politician, any government has the right to spoil it. It belongs to us, the people, not those self-seeking people in politics today. All this government does is cut, cut, cut. They are making life so difficult for all the medical staff on the front line. They do not like public services and yet they are public servants themselves and get paid out of our taxes! The first duty of any government is to take care of its citizens and I believe that care extends from the cradle to the grave.
I was very concerned to read in the i paper yesterday under Health, an article entitled "Waiting times for cancer care 'will only get worse'" by Charlie Cooper, Health correspondent. The article is about how the health service will need a government bail-out after the election to prevent a further deterioration of services.
The article further said that problems in the NHS went beyond all the pressures on A & E and that neither the Conservatives' spending pledges nor those of Labour would be sufficient to improve things. Waiting times for cancer treatment worsened in 2014 and that the number of patients waiting more than eighteen weeks for treatment hit its highest level in November 2014.
if you want more details about this, please read the article.
I am pretty disappointed with the Labour party. It was ruined under Blair and I think it needs a new leader with more life and a much better understanding of ordinary people.
I am very concerned about where cancer treatment will be going in the future. The NHS needs more money and more staff, but not more bureaucrats.
I do hope you have a good weekend and I do hope these nasty cold temperatures in the UK will go away.
Very best wishes.
Sylvia
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Hello Sylvia and everyone else,
I have been meaning to post but every time I have come to this thread I have not found the motivation to actually post!
We have had many changes since I last posted, I think in May when we thought Liz's cancer was back. That experience changed my outlook on life and Liz's concerning what we would do if the cancer does return.
Around July Liz's friend with terminal Ovarian cancer fell out with Liz over a small disagreement and they have not spoken since. Liz's friend is still able to drive. We have heard she is finding everything more difficult as the cancer spreads.
Another friend who was also triple negative that went through chemo the same time as Liz at the Norfolk and Norwich hospital started to get head aches in February last year. The doctor told her it was nothing. A few months later she was taken into hospital were she was diagnosed with brain cancer. As she lived on her own she was taken to a type of recovery/care home were she died just before Christmas at 52 years old.
Liz was told by her doctor that she would possibly be prescribed HRT if she lost 2 stone. Liz managed to loose 1 stone 5 pound. Liz went back because she had very painful hip pain and a different lady doctor prescribed her HRT straight away and told Liz she should have been put on it when she had her ovaries out because there is a big chance she will develop osteoporosis because of the early menopause. Liz has been on HRT for 3 months and the hot sweats have stopped and is feeling better generally but still has aching joints.
In September when our 14 year old son returned to school (he has cerebral palsy down his right side) he found the work harder and he finally agreed to home schooling. To be honest we have not taught him much in the last 3 months but we are happy for him to learn at his own pace. The experts say it takes 6 months for children to be "de schooled" before you can start teaching them and for them to take an interest in learning again.
As he writes with his wrong hand we have made sure he writes a few sentences each day. Often by watching a tv programme like "The Apprentice" or "Horrible Histories" and then writing about it afterwards. He has to walk 2 miles with me each day unless we go swimming.
Liz has recently been having a few headaches over Christmas which she claims is nothing but I am scared to death every time she mentions it. If the cancer is back I do not think Liz will have any treatments that will stop her enjoying life. Liz has not had a headache for a week so it may have been a head cold. We shall see.
We are off to Iceland on 23rd February and plan to go to America or Canada by early summer so our son will get to see the world if nothing else over the next year.
Best wishes to all.
Peter.
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Hello peterandliz (Peter),
I was so surprised but pleased to find your post.
I was sorry to read that you have been going through so much and I hope you have found some relief by coming here and writing it all out. We have a small supportive and understanding group here, many of whom are also going through difficult times.
I am sure we all understand about this fear of the cancer coming back and the anxiety that any ache, pain or anything unusual creates in us. It is something we all have to learn to live with but not let it take over our lives. This is very difficult.
The good news is that Liz's cancer has not come back and that eight months on since those fears in May she is alright. I think it is hard to know what we think we would do if our cancer comes back and that we shall react only if and when it does come back. I can speak only for myself, but at the moment, because I have seen what continual cancer treatment does to a patient, and because I think that patients seem to die of the treatment rather than the cancer, I tend to think I would refuse treatment. However, faced with the cancer having come back, I might react differently. In the meantime, you just have to try to live normally and to the full each day.
I was sorry to hear that Liz's friend with terminal ovarian cancer fell out with Liz over a small disagreement and that they have not spoken since. I hope they can find a way back to friendship, because Liz's friend probably needs her support as she lives with this terminal cancer.
I was so sorry to read that another of Liz's friends died of her TNBC. This must have been very frightening for Liz. My friend and neighbour died of her metastatic triple positive breast cancer last summer at 57 and it really upset me. All we can do is focus on the fact that more patients survive than die and that all our breast cancers are different.
I was sorry to read that Liz has been having a very painful hip and that the HRT is giving her some relief. Liz is to be congratulated on losing 19 pounds in weight. That shows determination. It is true that women who have been through the menopause are at risk of osteoporosis and of course breast cancer treatment damages the bones and also puts a patient at risk of osteoporosis. Did she have any other options than HRT for dealing with her premature menopause? Can anything be done for her aching joints?
I do hope all will turn out well for your 14 year old son as he adapts to being schooled at home. It must be a big change for him, but I hope things will improve with his learning with time.
I was sorry to read that Liz has been having a few headaches over Christmas. If they continue she should get them checked out. It is better to know what is going on and deal with it than not to know and imagine all sorts of things.
I do hope you will have a good time in Iceland when you go there on February 23rd. Is there any particular reason why you have chosen Iceland? What kind of holiday are you planning in America or Canada? Where in these countries are you thinking of going? It is good to have plans like this.
Do you know what happened to the young boy you used to mention in your posts? I remember he had made a miraculous recovery.
What about Lulu? Somebody else on this thread knew her and said that she was still fighting her cancer.
I hope you will stay with us on the thread and remember you can talk about anything you like. We have Tom on here whose wife is going through chemotherapy for TNBC and is also expecting a little girl soon. The two of you will be able to relate about your feelings in these situations. We also have Michael whose wife died of TNBC that came back.
Thinking of you and sending best wishes your way.
Sylvia
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Hi, Sylvia and all
I did some reading and caught up a bit. I find the fasting interesting too. I don't know exactly what effect it would have on cancer, but I have heard that many long-lived people are light eaters. Perhaps it starves the cancer? I don't think it would work for me; I have such problems with constipation anyway, and if I eat lightly or don't eat it just seems to make it worse.
I have been busy here, our problems continue. Last weekend my husband had fluid in his pleural cavity, in the sac between the lungs and the ribs. If a lot of fluid gets in there, it collapses the lung and makes it almost impossible to breathe. So we went to Emergency Room, and they took him to drain it out. It doesn't take long, they stick a needle and catheter into the cavity and empty the fluid. They had to do it on both sides and then they brought him back. They took an x-ray and said all was good. He looked good, and they said we had to stay an hour to make sure all was ok. Well, we were there more than an hour, and I could tell he wasn't feeling well after a while. I told the nurses that came in; they looked at his numbers and said the numbers looked okay. But they didn't look hard enough at him! At one point the doc came in and said he could go home or spend the night. Husband wanted to go home, I said no. We would spend the night. Thank goodness for that! Eventually they took us to a room and as soon as we got there he crashed. Blood pressure 60/30, couldn't breathe and he was sure he was dying. I thought so too and kept running back and forth to the nurses. They finally got hold of a doc to give the order and they took him to Intensive Care. The doc there told me if they did not put him on a ventilator and put a drainage tube in his chest he would die. What had happened was: when they did the original procedure they had nicked a blood vessel, and the chest cavity refilled but this time with blood. So not only was his lung collapsed but he was bleeding to death. So they worked on him and he survived but it was a rough couple of days. This week he was put on dialysis for his kidneys too, so it's been some week. We're both feeling pretty down, he has a new list of foods he can't have and we're just in new territory with this dialysis. I guess it will take time to see if it's doing any good.
I hated to read about the TNBC women that have had recurrences and died, My sympathies to their friends and families, our hold on this life is tenuous at times. Things happen so fast.
We just had a visit from an Occupational Therapist, she is a ER+ BC survivor of 10 years, she said it still makes her nervous at every ache and pain. We compared notes and we both have/had lots of aches and pains!
I had better close for now, I wanted to check in!
Hope you are well, it sounds like you are and congrats on your 10 years!
Best wishes,
Mary
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Hello Sylvia,
The fear of the cancer coming back is no where near as great as it was. Because we 100% thought the cancer was back in May we have been through and lived with that thought for a few weeks. If we go through it a second time emotionally we will both be in a better place.
Deryn is doing well. He managed to walk for 20 minutes just before Christmas so is getting back to full health after being told he is going to die 13 months ago.
Lulu has a second brain operation tomorrow to remove another tumour. Her cancer has spread to all parts of her body but is still fighting and is one of the most amazing women I know. She still posts and help others when ever she can as she was a breast cancer nurse.
As far as I know Liz was not offered any other treatments after having her ovaries removed instead of HRT. Having read the facts on HRT. Females are only 1.3% more likely to get breast cancer if they take HRT for 3 years. However I have not found any research on people that have taken HRT after having breast cancer and more importantly with TNBC.
Personally I think everyone's body is different and Liz's cancer journey has already been written, for instance I believe Liz either has a 96% chance of the cancer coming back or a 4% chance of the cancer coming back. Her body knows which one it will be but we will only find out at a later date. What ever Liz does healthily or unhealthily I believe will only make a very small difference to the outcome.
Hope that makes sence!
A retired physiotherapist at Liz's Jive club think she knows what Liz's problem is. Liz has been referred to a specialist that she sees on Wednesday afternoon. Many of the people that Liz know that have had Chemo have the same problems with their joints.
Taylor our 14 year old son is enjoying de schooling at the moment. They say it takes a month for every year a child has been at school to de school them. That's 10 months of him doing what he wants. Not sure if I agree with that.
What I can say is at 14 he did not know what order the 7 days of the week went in or the month's of the year. He also could not tell time. How can a child go to school for 10 years and no one realise this? He can do those things now. At high school he was in a "Gold group" which was for problem or disabled or insecure children so they had 2 or 3 adults in a class of 20 pupils at the most. Taylors only problem is he cannot write very well as his right hand does not work. Mentally he is very bright but is only interested in what he wants to learn.
Liz has not mentioned headaches for the last week now so looking good.
Liz wants to see the Northern lights so that's the main reason. We always hire a car when on holiday as we love to travel round and do what we want and the excursions are a waste of money. £30 each to see the waterfalls by bus when they are free to get into or £29 each to drive out of the town to see the northern lights. We plan to swim in the heated natural outside silicon mud pools. visit the waterfalls and Geysirs.
Liz really wants to visit New York, Niagra falls, Las Vegas and the Grand Canyon.
Liz had critical illness cover that paid out so we can travel for 2 years without any financial hardship if we want to.
Peter
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hi Sylvie, where in the south west are you? I finished treatment 2 years ago next month and am also in the south west. I am seeing my consultant tomorrow as have found a new lump, found another few months back which was thankfully just a cyst, this one feels very different so have very mixed feelings. Has anyone on here had triple negative come back? I have only just come across this site so ama beginner!! Thanks0 -
Hi Sylvia
Thank you for the links that you posted.
I was watching Channel 4 news tonight and they were conducting a poll in Gloucester which asked people what their top issues were for the forthcoming general election and by a considerable margin it was the NHS. It is so baffling why the Labour party are not making it there top priority, come to think of it, I am not sure what their priorities are apart from the mansion tax. My eldest Stepson is a labour councillor so I should get it straight from the horses mouth.
The wee dog is still hobbling around; I think the vet is arranging her physiotherapy this week.
Michael
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Hi Sylvia, hi all.
I hope everyone is doing ok.
Been a few weeks since I last posted, its all been so manic. Everytime i sit down to write, something else seems to pop up!
My wife is doing ok. She has now completed the four doses of FEC. The weekly taxol begins in apporx. two weeks. The chemo nurses think that since will be having weekly she may cope rather well with it based on her experience with FEC. Her hair has actually managed to survive quite well to be honest, its obviously she has lost loads, but she has retained enough on the back and sides and some on top to pass with a thick headband or hat on. We have decided that the wig doesn't suit her, and she is more comfortable not wearing it.
She is certainly very drained and each dose has taken longer than the last to recover from, but obviously most of you ladies have been/are going through the same so understand. She caught another cold just before the last session, our daugther picks everything up from nursery and of course we get it to. And she is getting chemo (ice-cream?) headaches, but paracetamol is dealing with that. I still wish i could have the drugs for her. But we are 50% of the way through now and I know that lots of people have had it much worse on chemo, so we are greatful that things have been ok thus far.
Baby is doing well.Normal size and he is kicking like mad!!! Birth is scheduled for mid-march - so its all going on!
Research wise - well the studies contiune to flow in on TNBC. Some very interesting papers being published, new theraputic targets are being identified all the time - although its very difficult to translate lab findings into the clinical setting - nonetheless the research is pushing towards new treatments. Its also becoming clear that TN is now a blanket term. There appear to be several types/classes of TN tumour each with their own unique biology. Several recent studies have also demonstrated highly increased survival rates for TNBC. Obviously people shouldn't get too hung up on this, these are just stats, but one recent study actually showed that early stage TN has comparable overall survival with the ER/PR positive tumours. This is attributed to earlier detection, quicker treatment, better chemo drug preperations and life-style interventions.
My own crazy idea has been put forward for funding. I need to provide proof of principle eveidence that it could in theory work. So I am currently working on designing a "proof-of-principle" prototype - i will keep everyone posted.
Hugs and prayers
Tom
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Hello Sylvia,
Hope you don't mind me adding my notes on your TN forum. Though I have not been diagnosed with TN, my mother was diagnosed 3 years back. She is not computer savvy, so I frequently visit TN forum to keep myself updated on the TN news to support her.
Recent discussion on blood transfusion caught my attention and raised concerns, as my mother received transfusion at least twice that I can recall while she was undergoing her treatment, as her count were low. I was esp concerned about "blood transfusions from donors with undiagnosed cancers" and the risk of recurrence associated. I spent quiet bit of time trying to find something on internet to gather information, the closest I was able to trace is this old article
http://www.sciencedaily.com/releases/2007/07/070720095342.htm
I didn't want the time I spent on internet researching limited only to myself. I wanted to share with you all, in case if it is of any help.
Thanks for maintaining this thread and fabulous job you do at supporting everyone.
Kind Regards,
YJ.
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Hi Sylvia,
Sorry it has taken me so long to reply to your posts, Sylvia. There is just so much information out there and I am having a difficult time processing it all. Some days, I want to try all the new things, and other days, I think I should just keep doing what I am doing. Right now, my focus is on my food intake. I did overeat on cakes and desserts over the holidays and I am said to say that I did gain some weight, so I am trying to lose it by reducing portion sizes. I generally eat very healthily, but I did overindulge, much to my regret.I have also developed the habit of having a cup of coffee every afternoon, and with it, I do like something sweet. Oh well. This is one of the reasons I wanted to research the 5:2 diet. I don't think this is for me, because I like to eat regularly, and I do enjoy my food.
I have been experiencing some pain at the base of my spine and have discussed it with my MO - she is not concerned in the sense that she doesn't think it is bone cancer. (which is what my mind immediately suspected) I have had the pain since October - it is worse upon rising from a sitting position. I went yesterday to my GP, and she has ordered an x-ray just to see what could possibly be causing the pain - again - she said it did not sound like bone cancer. So my fear is somewhat allayed, but the pain is ever present - not enough to take medication for, but I am always aware of it. I also wondered if it had anything to do with the osteoporosis, so I asked about a bone density - she said that they can only be done every 3 years, so I have to wait one more year.
The GP ordered several blood tests - fasting blood sugar, cholesterol, thyroid, hemoglobin and my Vitamin D levels (the Vit D test I have to pay for, but it has been over a year since it was checked, and I would like to know what it is).
In the main, I am well - just little irritants, and then my mind likes to go to dark places.
One new thing I have added to my diet is bitter apricot kernels, and I eat 15 of them each day. In a couple of weeks time, I am having a consult with the pharmacist at the integrated cancer facility that I attend, just to talk about the supplements that I am taking - I have heard from other members that it is very worthwhile.
It seems that there is more and more knowledge about triple negative cancers, and that is a good thing, so that people newly diagnosed will hopefully benefit from new and better treatments.
Just out of curiosity, do you know what the score of your bone density is? I got a copy of my recent one from the doctor, and plan on doing some research into how to read it. It is -3.7 in Lumbar spine - not sure what the significance of this is?
For those still going through treatments, hang in there, it does get better!
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Hello Mary,
It was nice to hear from you.
I was so very sorry to read that you have been going through such worry with your husband and that he nearly died. I do hope that he is improving now and that the dialysis treatment will improve his quality of life.
You are going through a lot of stress with all this so please remember to take care of yourself. I do hope things will improve for you too.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello peterandliz,
Thank you for your informative post.
I was so pleased to read that Deryn is doing well and that he is getting back to full health. It just shows you that you cannot take notice of what the orthodox experts and doctors tell you. They are not always right. I read a book last year written by an oncologist who did not dismiss other treatments and the book was about terminally ill cancer patients who had been written off, went to try other treatments or did nothing and made full recoveries and were still alive! I do hope Deryn continues along that good path.
I do agree with you about Lulu. It is hard to believe what she has been through. She is amazing and I do hope she will be able to pull through. It is unbelievable that she can still find the strength to post and help others whenever she can.
I do not know a great deal about HRT but it has had a bad press. One of my neighbours here was diagnosed with hormonal breast cancer after being on HRT for quite a few years and she told me she was convinced the HRT had caused her breast cancer. The good news is that she went through treatment for her breast cancer and is still here fourteen years on.
I hope if anyone has more information about HRT that they will post in.
it is true that everybody's breast cancer is individual and different and no one can say for sure what their journey will be.
It does seem to be that chemotherapy leaves a lot of people with pains in their joints. I know that women on this thread have complained of chronic pain in various parts of their body after chemotherapy treatment and I think we all know now that chemotherapy and radiotherapy have, or can have, quite devastating effects on the body. We all know that these treatments affect the bones, damaging them and leaving women with osteoporosis. I suppose it is the price we pay to stay alive. Women with these pains resort to different remedies. I think other remedies are probably worthwhile trying rather than swallowing down different pain killers with all their possible side effects.
I was very interested in what you had to say about your fourteen year-old son Taylor.
I do wonder what goes on in school these days and I do think all the education system has been messed around with and that the basics are not being taught. I remember at my first year in primary school many years ago how we were drilled daily about learning tell the time, to count and to spell. I think we need to get back to that strict way of teaching. I remember when I was teaching French that there were fourteen year olds who could not read. It has got much worse since then. Children need to know reading, writing, spelling and arithmetic as their basics. Schools are too busy worrying about other things such as sex education in primary schools. We also need to get back to some discipline and more professionalism with teachers. There is nothing wrong with rote learning such as your multiplication tables.
I do hope he will make good progress at home.
I do hope Liz will remain headache free.
I do hope you will have a good time in Iceland. It really sounds as though you have planned a very meaningful holiday. Please let us know all about it.
I do hope everything goes ahead for your trip to the US. Canada is well worth seeing as well. Niagara Falls on the Canadian side is truly awe inspiring and something that you never forget. I saw it many times when I lived there in all seasons and it was always beautiful.
Sending you fond thoughts.
Sylvia
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Hello poohbearnorman,
A warm hello and warm welcome to the thread. I was interested to read that you have been through breast cancer treatment and that you finished two years ago this coming February. What kind of breast cancer did you have? The most common is invasive ductal carcinoma (IDC). Did you have chemotherapy and radiotherapy, lumpectomy or mastectomy, what stage and what grade? It is useful to put these details in your profile so that it comes up after each of your posts. It is useful for all posters to know one another's history. How have you been keeping since you finished treatment?
I do hope you had good news from your consultant yesterday and that you will post to let us know. Let us hope it is another cyst or a benign adenoma. All of us on the thread know the anxiety and fear we experience when finding something that we think is not normal. It is best to know what it is because at least we know what we are dealing with and how to proceed.
At the moment on the thread we have one lady dealing with her triple negative breast cancer that came back and spread. She is Carolben in South Africa. She has been having treatment with chemotherapy and the last time we heard from her she was having a rest from it all. She is a wonderful lady with great strength, optimism and a zest for life. I hope we shall hear from her soon.
I am so glad that you have found us. We are a small group of very supportive people and we shall do all we can to help you. I started this thread for the UK because I thought TNBC was in the dark ages here. It is certainly not there now, but I still do not know how much UK patients are told by their consultants and oncologists. The secret is to be informed and to ask questions.
I was particularly interested to know that you are from the south west. I am in Exmouth in Devon. Exmouth is about ten miles from Exeter and I had all my treatment at the Royal Devon and Exeter Hospital (Wonford) and had an excellent oncologist, excellent breast cancer consultant, excellent breast cancer nurse and had excellent treatment. I learned from diagnosis to get informed. Where are you in the south west?
Thinking of you and hoping to hear from you soon.
Fond thoughts.
Sylvia
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Hello Michael,
Thank you for your post. I do hope you find the links useful.
I was most interested to read what you said about the poll in Gloucester on Channel 4 news. I was not surprised that the NHS comes out as one of the top issues. The NHS is far more important that anything else and just try to imagine our country without it. When the NHS was formed in 1948 under the Attlee government that was our proudest moment. I think that government was the best government we have ever had and certainly the best Labour government. It was doing what government is all about, looking after the people from the cradle to the grave and making sure that people had a decent lifestyle. It put the utilities and transport in the hands of the public and ran them for the benefit of the public and not for profit. It nationalised the Bank of England and gave independence back to India and Burma. It is hard to believe that after all that government did it did not get back into power in 1951. I think people abused the new system and cuts had to be made. No Labour government since then has matched the Attlee government.
Blair and Brown were not Labour and Ed Miliband is not up to the job. We have to remember that it was Blair/Brown that started to privatise parts of the NHS and I do not think Ed Miliband is planning to reverse this. All we have at the moment is a sparing match over the economy versus the NHS. We now have former Blairite ministers coming on the media to meddle. I think the Labour shadow lot are very weak and do not have the courage to speak there mind. They should mention Attlee and the wonder that was the NHS more often and pledge to restore it to its former glory. We need patients to be more responsible and doctors to be more responsible too. They need to stop dishing out repeat prescriptions like Smarties, this wast is costing millions and patients need to stop running to the doctor for every little sniffle. All in all the NHS needs to have a good injection of common sense.
As you say, Labour needs to pronounce some good policies and to be more open and honest with the public.
I was very interested to know that your eldest stepson is a Labour councillor. Where does he live? My younger brother here has spent forty years of his life as a Labour party member and is the chairman of the local branch. He is very active in the Campaign for Labour Party Democracy. I do not know how he does it all because Exmouth is not very progressive and our MP is one of those awful Tory Toffs!
I do hope your little dog will get better soon.
Keep in touch.
Fond thoughts.
Sylvia
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Hello Tom,
It was nice to hear from you. We miss you on the thread, but I thought that you were probably very busy.
I was glad to know that your wife is doing alright. She must be relieved to have finished the four doses of FEC. She must be glad to have a couple of weeks during which to build up some strength before beginning paclitaxel (Taxol). I do hope she will cope well with the weekly doses rather than the regime of every three weeks. Women on the thread have said they found weekly doses much easier.
It was interesting to read that she has not completely lost her hair. I had a little bit left as well. From the beginning I just let it fall out of its own accord rather than have it shaved off. I thought leaving a little bit of hair would be beneficial for it to grow back, rather than shaving it off.
I was not surprised to read that she is very drained. With chemotherapy the fatigue builds up as each dose progresses. This is inevitable as the drug is having a devastating effect on the body. The secret is to try not to pick up colds etc. but with a young child this is almost impossible and of course she is going through pregnancy in addition. All in all your wife seems to have done well going through FEC and let us hope it will be the same going through Taxol. As least she has a couple of weeks to try to build up some strength. The way to go is to keep looking forward and tell yourself that this will soon be over.
I was glad to know that the baby continues to do well. Mid-March is not that far away so not long to go now.
Thank you for keeping us up to date about research. I do remember reading about the various types of TNBC. I remember asking my consultant in the very beginning about basal type TNBC because I had read that a lot of them are basal like but certainly not all of them. I asked this after my tumour had gone for storage so I do not know whether it was basal type or not. The medical teams seem to say different things, because one clinical assistant said that all TNBC were basal type but another said not.
I think that the real challenge with all breast cancer is not getting through primary treatment but surviving with metastases or recurrence.
Keep us posted on what happens with your own idea. At least it has been put forward for funding.
Fond thoughts.
Sylvia
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Hello YJ2012,
You are most welcome to post in here and add in your notes. It is good to know that, although you have not been diagnosed with TNBC you are trying to keep up to date for your mother who was diagnosed three years ago. She is very lucky to have you.
The reason we were having a discussion about blood transfusions and breast cancer patients was that one of our friends on here, Jackpot (Gill), who has gone through TNBC treatment had to have surgery for what was supposed to be a straightforward hysterectomy. Things did not quite go according to plan and she was told she would be having blood transfusions and then told that she would not be having them because of risks with breast cancer patients. Gill said this was all new and some of the medical staff involved did not even know about it. I was not successful in finding any up to date definite information about this but there must be something in it for the medical team to decide not to do it and to put her iron supplementation to bring her red blood cells back up.
I would try not to worry too much about this as there is nothing that you can do about it. Your mother had the transfusions and so far she seems alright. I would think there are lots of women out there who have had blood transfusions because of low blood count during their treatment.
I have read the link that you sent, but of course, as you say, it is over seven years old, and we all know that you cannot believe everything you read on the internet. Perhaps someone will post in with more information.
I would think if, as we are led to believe from that article, that donated blood is put through stringent testing, then any sign of cancer in that blood would lead to it being rejected. What it does show is that there is a need for regular blood testing for any sign of cancer, rather than relying on mammograms, that only show up lumps or masses, and expose women to radiation which in itself is a risk factor in causing cancer. Chris Woollams of Cancer Active has said for a long time that mammograms should be replaced by blood tests. I do not understand why they are not routine.
I am so glad that you decided to come and join us and share your information with us. It is only by forming groups such as this one that we can share information, individual experiences, comfort and support. Groups such as these let it be known that cancer patients do not need to go through the long and stressful journey that is the cancer one.
I do hope your mother is well and living life as normally as possible. She is probably going through routine check ups and I do hope all is going well.
I hope you will stay with us and thank you for your very kind words about the thread.
Best wishes.
Sylvia
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Guys, having a huge wobble. The problem about being interested in your diagnosis is doing your own research.
I received a copy of the letter from BS to GP and she wrote that the pathology for the tumour was pleomorphic ILC triple negative, so as you can imagine I was straight on the computer researching pleomorphic. I was only checking on my i phone as hubby hates me doing Dr Google but he obviously found out when I became upset. Not only is triple neg rare, but so is ILC and pleomorphic is even rarer and called the 'deadlier strain.' It does seem that it is much worse for HER2 positive ladies and there are not as many studies for triple neg so just holding onto that thought. I am actually wondering too if I am a true triple neg, as ILC pleomorphic is just so rare. Should I ask for a copy of the pathology?
Why can't these consultants explain the pathology properly, especially when they know they are dealing with people who do the research and read the studies? I start rads next Tuesday and hope to grab someone to explain it all a bit more.
All this on top of a pain in my rib under the scar site and I am feeling that its gone to the rib bone and a pain in my shoulder, but then think it wouldn't happen this quick.
Sorry for the rant and not mentioning other people in my post, but please know that I am thinking and praying for you all.
Marymargaret
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Hello adagio,
It is always nice to hear from you and to share thoughts and information.
It is true that there is a lot of information out there and it is difficult to process it all. No matter how we process the information we are all individuals and affected in different ways. What works for one does not necessarily work for another. I find these days that it is mind boggling to me when I read books and articles so I just rely now on something sinking into my brain.
I think that your idea of just to keep on doing what you are doing is probably the best. I tend to do that.
I think you are probably wise to keep the focus on your food intake. I tend to do that as I think, and it is a personal view, that healthy eating is the key to everything, especially chronic diseases like cancer. I am not saying that on its own bad eating causes cancer, but I am convinced it is one of the risk factors and that the standard western diet is bad for us.
I am sure that lots of people overindulge on special occasions but as long as you get back on track and do not continue with eating things we should not really be eating, then all will be well. I am sure you will get back to not overdoing the cakes and desserts and I am sure you will lose the weight you have put on. Having smaller portions seems a great idea to me.
This desire for sweet things probably goes back to childhood when these were given as reward etc. It is a pity that sugar was ever brought back to what is now the western world. It started off as a luxury for the upper classes but is now everywhere and they say it is very, very addictive. Perhaps you could try a few squares of carob with your coffee. In our natural food store here there are small bars of carob that are sugar free, dairy free and gluten free. You get them plain carob, mint flavour or orange flavour. I sometimes have them with a cup of tea. I cannot remember the brand but I can check next time I go to the store. They are not too high in calories. They are about half in calories of what the 90% dark chocolate is.
I have not had time to research the 5:2 diet yet, but I understand that you eat normally for five days and then on the other two you just have smaller portions. You could proabably do that by having breakfast and dinner and cutting out lunch. The two days when you have the smaller portions do not have to be consecutive.
I think it is good that you eat regularly and enjoy your food. By the way, I discovered carob in Canada. It was in powder form and you could make a sort of cocoa or in the form of beans that you could chew. I had forgotten about it until the woman serving me in the natural food store said we had the right to a free carob bar because we had spent £10. Raymond and I shared the small bar and it was truly delicious.
I do hope you will be able to get to the bottom of the pain at the base of your spine. It could well be the osteoporosis. I do hope you will get to have your x-ray soon in order to get peace of mind. We all know what wondering about what might be wrong does to us.
I am wondering why it is that we can have a DEXA scan only every three years. That is what I was told here in the UK as well. It is probably because osteoporosis develops very slowly and there is not much change in the measurements that they use before three years. It is either that or they are all trying to save money. I do believe that women diagnosed with breast cance should have a DEXA scan before and after treatment, given that chemotherapy and radiotherapy damage the bones and can well cause osteoporosis.
I seem to remember that I have had two DEXA scans. I had one after my treatment which I requested and then I had one after the surgery for an over-active parathyroid gland which the consultant said had caused my osteoporosis, but I think it was more the chemotherapy. I seem to remember the last one was 2.8. I think they now do the scan on the lumbar and the hips.
I cannot understand the way they measure to give a diagnosis of osteoporosis because apparently they compare your figures to the figure of a bone healthy young woman. Is there such a person and I cannot see that doing this makes any sense because your bones get more fragile with age and especially after the menopause.
I tend to continue taking my supplements, the Solgar calcium citrate supplement, with magnesium and vitamin K. The directions are to take four a day but I only take one or two, because I keep reading that calcium supplements are not good for you and cause heart disease through a build up of calcium serum in the blood. I am also taking the Drs Best strontium. I am taking 3,500 units of vitamin D softgel capsules and I really believe these are very important in every way. I hope this helps you.
I do hope you will get good results from your blood tests and it would be interesting to know the results. You seem to be having the standard ones they give here, fasting blood sugar, cholesterol, thyroid, and haemoglobin. Here in the UK they keep changing the numbers on which they decide whether you have a problem. The doctors seem to want everyone on medication, especially statins, which are lethal. They now want everyone 30 and up on statins, even though the NHS is in dire straits here. Vitamin D levels are not routinely tested here but I think they should be. I went to my consultant in order to get one but it was done on the NHS.
Good luck with your blood test. Will they be testing the parathyroid level as well as the thyroid? I think it should be part of the standard blood test.
I was interested to know that you are taking bitter apricot kernels. I have been taking mine for nearly ten years and now usually have fifteen a day. I was also very interested to know that you are going for a consultation with the pharmacist at the integrated cancer facility that you attend to talk about the supplements you are taking. I do not think we have such a thing here and orthodox doctors do not want to know about vitamins and minerals. I try not to overdo them but do take regularly a multivitamin and a complete vitamin B supplement. From time to time I take an iron supplement.
I mainly depend on simple food with an emphasis on fruit and vegetables and some oily fish.
That is about all for now.
Fond thoughts.
Sylvia xxxx
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Hello Marymargarethope,
Thank you for your post and I was sorry to read that you are having a huge wobble at the moment.
I think you need to have a consultation with your oncologist and/or breast cancer consultant surgeon and to have all this explained to you in clear every day words. Specialists have a tendency to go off into a world of their own medicalise and they need to be brought back down to earth. Of course you have every right to ask for a copy of your pathology report but you really need to have it explained to you in simple, understandable terms.
If you analyse the terms used, the kind of cancer that you have is invasive lobular carcinoma, which is a rare kind unlike invasive ductal carcinoma (IDC) which is the term used for cancers of no particular kind. The term triple negative is used to describe the receptor status of the cancer. It means that it is oestrogen negative, progesterone negative and HER2 negative. I have just looked at one article on the internet and it says that it is quite common for ILC to be negative in the first two receptors but did not mention HER2. However, I suppose that if the report says triple negative, then it was negative in HER2. The simple definition that I have found on pleomorphic was that it is a breast cancer tumour in which greater than 50% of the cell population is characterised by pleomorphic shapes. I really think this is something you should discuss with your oncologist. If you read all the articles on the internet, they will just make you very confused.
Just concentrate on the fact that you have got through chemotherapy and that you have now have to get through your radiotherapy and then take things from there. On your details you did not mention surgery so what kind did you have? Remind us as well about your chemotherapy. It would be a good idea to put them on your profile, as it is hard to remember all the information. Concentrate on the fact that you are grade 2 and have only one node affected.
I do not think this information should have been sent to your GP and a copy to you without having had it all explained.
If I were you, I would phone the secretary to the oncologist, explain abut the copy of the report, that it has made you anxious and you would like it all explained. When you go for your radiotherapy you will be seen by radiologists and they will just want to get on with giving you the radiotherapy treatment.
If I were you, I would do this all the more so because you have a pain in your rib under the scar site and a pain in your shoulder. It is better to find out what is causing it than to be anxious and worried about what it might be.
Please let us know how you get on and remember we are here to support and help you.
Love
Sylvia xxxx
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Thanks so much Slyvia, I have updated the treatment info but it's not showing up on the profile yet. Surgery was both breasts on December 23rd, so I know there are still aches and pains as it's still early days. The rib pain only seems to hurt when I stretch and there is a swelling under the scar with the rib pain being below. I am sure it's just muscular.
Through your advice, I have called the onco secretary but he is not in this week or next so she transferred me to BS secretary who has sent a message to the surgeon. I said that someone needs to explain this new word to me and I got a bit upset.
I do have a prosthesis fitting on Monday too so hopefully I could see someone then. I said I would be happy to talk to BS over the phone if that was allowed.
I will keep you updated, thanks for such a prompt reply. x
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