Calling all triple negative breast cancer patients in the UK
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Hello Christina1961
I was so glad to know that you were finally able to have your port removed after three years. I do remember you so clearly.
I do hope that you are keeping well and living normally. I do hope you still view our thread and will get this message.
Do you ever hear from Bak94? She has not been on any threads as far as I know for some time. Is there any news of Mcrimmon324? I remember she moved from Florida and went back to her home state of Pennsylvania I think.
You three were such an interesting group on here as you went through treatment.
Wishing you all the very best.
Sylvia xxxx
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So the pathology results... the bad breast did have some residual cancer left within a 10 cm radius, my heart sank when she told me this but she went on. She reminded me that my original tumour was 12cm, that was a complete ball of total cancer, but now its only tiny bits of smattered cancer. She made reference to a Christmas pudding when only the raisins are the cancer and the rest is normal, but the raisins in this instance are smaller. So that made me feel better. Doctor said that it was a very good reaction to the chemo and was very pleased with the results. I think she saw my disappointment that it wasn't a CPR and said that she sees me now as cancer free. There was a clean line of margin and my lymph nodes were clear, she was most happy about the lymph nodes.
She wouldn't give me a stage but my own research would now put it at a IIa and at a push I, previously it was IIIa. Also, I asked her about the grade and she said it was always grade 2, I was always led to believe it was 3. Looking at stats this gives a better prognosis but reading what you said Sylvia, this might not be the good news I thought it was? Not sure whether we say the stage at diagnosis or the stage after surgery as we had the chemo first? This has always been an enigma to me. When I used the calculator I spoke about in my previous post, it does look at both stages.
All my fiends and family are so over the moon about this news, which is good news, but I can't help not jumping for joy until I reach that magic 3 year mark.
Onco on Thursday to discuss the radio and I will ask him a few more questions.
Night all,
Marymargaret
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Jacqueline, when you are having your radiotherapy, reduce your calorie intake by 30%, studies have shown that this reduces the chance of recurrence by making this regime more effective. Furthermore, following on from what Sylvia said, there have been many studies linked to long term survival and a low fat diet, there is as much as a 30% reduction in recurrence for people who follow this, particularly TN ladies. Just google TNBC and calorie intake and you will see.
God bless,
Mary
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A passage from some research:
WINS, a randomized trial of nearly 2,500 breast cancer survivors, revealed that a very low-fat diet significantly reduced breast cancer recurrence risk but only among women with ER- breast cancer. After five years of follow-up, women with ER- breast cancer who were randomized to the very low-fat diet group had a 42% reduced risk of recurrence compared with women with ER- cancer in the control group. The very low-fat group consumed an average of 33 g of fat per day (about 20% of total calories from fat) vs. the control group's average fat intake of 51 g per day (about 32% of total calories from fat).31 Women in the very low-fat diet group with ER+ breast cancer had a statistically nonsignificant 15% reduction in recurrence risk.30
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Hello Marymargarethope,
I was glad to know that you had a good pathology report. You must be very pleased about this and to know that the chemotherapy drugs worked to good effect. You now need to put this part of your journey behind you and move on to the next part which is radiotherapy. Most patients find this easy compared to chemotherapy but remember radiotherapy is toxic and you need to rest in just the same way and take care of your skin.
Your oncologist is quite right to say that she now sees you as cancer free. The cancerous breast has now been removed, so whatever was left in it has gone, so you have to forget it. Concentrate on the fact that it has gone and that your lymph nodes are clear. The radiotherapy is used to mop up any possible stray cells. That is what my oncologist told me.
With reference to stage and grade, what these were on diagnosis is what will remain on your records, but it is not of importance now. When a patient is diagnosed they are told (or should be told) what kind of breast cancer it is (the most common is invasive ductal carcinoma, IDC, which is used for breast cancers that are of no particular type), the stage, the grade and the receptor status. If you are not told these on diagnosis it makes sense to ask, unless a person wants to go through treatment not knowing these things.
I would think that being grade 2 was good because most TNBC tumours are grade 3. The grade indicates how different the cancer cells are from normal cells. I am not a doctor so this is something you could ask your oncologist. I think it was Tom, not me, who said that being grade 1 or 2 where the cells are less differentiated than grade 3 made it more difficult for the immune system to attack. If I were you I would not fill my head with all of this as it serves no purpose and can cause worry and anxiety. Concentrate on the fact that you have got through chemotherapy, got through your surgery and now need to get through radiotherapy and then give yourself time to recover and then get on with your normal life and live every day to the full with your husband and young family.
Please do not worry yourself about statistics and percentages. They serve no purpose except to worry you. You are not a statistic, you are you.
I can understand that your friends and family are also over the moon about the good news that you have been given. Remember how hard and stressful it is for all those who care about us and have to watch us going through this lethal treatment.
I do hope everything goes well with your appointment with the oncologist on Thursday to discuss the radiotherapy. Do not be shy about asking any questions. I remember when I had my appointments for radiotherapy that I was positioned on a prototype of the radiotherapy machine that would be used, and that the area to be exposed to the beams was marked up in something fairly indelible. I was given a special smock to put on at each appointment which was made so that the part covering the mastectomy area and to be exposed to radiation could be easily uncovered. I was told I could shower but not to use Dove soap as it had metal in it. I was told also not to use deodorant or talcum powder. I was also given a tube of cream to put on my skin. I chose to use Simple soap and aqueous cream. I was also told that I would have three weeks of radiotherapy with boosters integrated into this. The treatment is five days a week with a break at weekends. I was lucky not to have any problems but it can be tiring getting to the hospital five days in succession. The treatment itself lasts no time at all. You will get through all this.
I think we have to be very careful when talking about low fat diets in a generalised way. We all know that there are good and bad fats and that on a typical western diet people are eating too much saturated fat, which the experts tell us is not good for us. Saturated fat comes mainly from animal products, meat and dairy. The other problem with meat and dairy is that they have growth hormones in them which are said to be a risk factor in breast cancer. However, our bodies do need fat in order to function and omega 3 oils in oily fish, nuts and seeds, and other fats, such as mono-unsaturated, are healthy. Common sense dictates moderation and variety in everything. There has been a lot of negative comments about low fat diets. The cells of our body need a variety of fats. Obviously if you are overweight you will have unhealthy fat on your body and will need to restrict your calorie intake to get to your ideal body weight for your height and your ideal body fat for your weight and height. Fat around the middle is not healthy. I think with this trial you have to know how much undesirable fat they had on their bodies to begin with and whether they were overweight. You have to know what kind of fats they were on with this low fat diet.
I think we all know that we need to eat sensibly, have a variety of food and keep ourselves as healthy as we can and stay with our ideal weight and body fat.
Once again, I am so happy for you and wish you all the very best with your radiotherapy.
We shall all be thinking of you and Jacqueline as you go through this last part of your journey.
We still have Tom's wife to support and see through chemotherapy and to await the birth of her baby.
There is also Carolben who is still going through chemotherapy for her metastatic cancer. She needs our support and kind words.
Fond thoughts.
Sylvia xxxx
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Hello everybody,
This is the next quote in the book about the p53 gene. It introduces chapter 3, entitled "Discovery".
"In which we: a) meet the scientists who stumbled across p53 while investigating the cancer-causing oncogene in a monkey virus; and b) hear how, every time they tried to purify the protein made by the oncogene, they found another protein in their test-tubes that they could not shake off."
Quote by Horace Freeland Judson:
"How uncertain it can be, when a man is in the black cave of unknowing, groping for the contours of the rock and the slope of the floor, listening for the echo of his steps, pushing away false clues as insistent as cobwebs, to recognise that an important discovery is taking shape."
Any comments?
I hope these first days of the New Year are treating you all well.
Best wishes.
Sylvia
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Hi, Sylvia
Regarding the fluid removed from my mastectomy site, there seems to be no answer to why some people build it up and others don't. The surgeon did say that it was usually her overweight patients who have the problem, and I am not that. Other than that, she said that since the fluid had been there a while the surface of the chest wall becomes slick, and it doesn't absorb well. She said if other methods of draining don't work, she can go back inside and rough up the skin which will make it easier to absorb. I don't really want to go there, but it felt so much better with the fluid gone, that I will probably do whatever I have to, to get rid of it.
Regarding the fluid removed from my husband's pleural cavity, the nurse told him that there is no way to prevent it, it happens and has to be gotten rid of. We use fluid limits and low sodium intake to regulate his body fluid, but apparently that makes no difference with this kind of build-up. I guess it goes along with his lung and heart disease, just another complication. I keep thinking I've seen it all, and then something different comes along.
I need to get ready for my physical therapy appt., we are having a very cold few days and I dread going out in it but I want to keep progress going!
Talk to you soon,
Mary
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Hello maryna8 (Mary),
Thank you for your post. It would be nice to have a proper answer about mastectomy sites, the build up of fluid and why this happens. The answer that it usually happens overweight patients is of no use to you since you are not overweight! I do hope that the fluid will be absorbed with the drains or other possible methods. I do hope that your doctor will not have to resort to going back inside to rough up the skin which will make it easier to absorb, so she says. I can understand that you would prefer to avoid this. If that were me, I would not want that area disturbed in any way and I think I would say no, but that is only my own preference. How much is the fluid bothering you? Perhaps someone viewing will post in and then we could have a discussion about fluid etc. It would be interesting to know how many patients are affected and what they have done to solve the problem.
I do hope that everything will improve for your husband. This must be very stressful for him.
You two have really been through it. You must be sick of hospitals and doctors.
I do not envy you your cold weather. I sometimes wonder how I ever coped with the Arctic weather in Canada and yet I used to be out shovelling snow and dealing with ice. I remember huge icicles hanging all the way round our bungalow. I could not do it now and I do not like the horrible damp and sunless days here in Exmouth.
Please keep in touch. It is important to keep the thread active so that we can share information and keep up to date.
The news about cancer drugs here is not good. The government set up a special cancer fund for certain advanced cancers but some are now being withdrawn because of cost. One of them is eribulin (Halaven) for advanced breast cancer. I shall find out more during the day.
Thinking of you and sending fond thoughts your way.
Sylvia xxxx
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Hello everyone,
This is the next introduction, chapter 4 of the book p53 The Gene That Cracked The Cancer Code by Sue Armstrong.
Chapter 4: Unseeable Biology.
"In which we peer into the machinery of the cells to see how the genes make the proteins that do virtually all the work in our bodies."
Quote by Bill Bryson:
"Every cell in nature is a thing of wonder. Even the simplest is far beyond the limits of human ingenuity. To build the most basic yeast cell, for example, you would have to miniaturise about the same number of components as are found in a Boeing 777 jet liner and fit them into a sphere just 5 microns across; and then you would have persuade that sphere to reproduce."
It would be nice to have some comments about this important p53 gene.
If there are any newly-diagnosed patients viewing, please post as we are all friends here and we do not want you to make this cancer journey alone.
Best wishes to all of you.
Sylvia
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hi Sylvia and everyone
Just to let you know I'm home from hospital and it wasn't a very good experience at all, I arrived at 7.30 am to find I was the last to go down so didn't go into theatre till 3.50pm which I know can't always be helped but if they knew their schedule beforehand I would of thought bringing me in at lunch time would of been better
It was meant to be a two hour operation through keyhole surgery but I did know it could turn into abdominal surgery which would be from bikini line to the navel if things didn't go to plan during surgery,
When I was going in theatre the anaesthetist came to put a cannula in and I told him that my left arm was not to be used for anything because of the ANC surgery which he agreed, during surgery a blood vessel was cut and I started to bleed out and I lost two litres of blood so they had to open me up hip to hip to find and repair the bleed, so I ended up in theatre for four hours and woke up with a cannula in my left arm
They didn't tell me any of this initially and I had to ask to see my notes in the end to find out what happened and even then it doesn't explain fully, just that the cannula was fitted ready for emergency blood transfusion
The following morning I felt pretty bad and they done a blood test and found my blood was only 7.5 and that I would need a blood transfusion but then the surgeon came to see me and said that new evidence just coming though now is indicating that blood transfusion in breast cancer patients are triggering recurrences and they were no longer considering doing one, I'd never heard of this before but it's new researched evidence, even some of the other doctors didn't know about it
So it's something to consider for anyone needing blood transfusions anytime in the future, my bloods are now 8.3 and they've let me home with iron tablets and said my blood will recover in time but it will be monitored
So not the best stay in hospital after major surgery but I'm home now and recovering just thought I'd pop on and let you know as I know you like to keep up to date with any new information like this
Take care
Gill x
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Oh Jill you poor love what an ordeal! I have never heard of blood transfusions triggering recurrence, how strange!
You rest up now and take care. Let us know how you are getting on
Love Sue x
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Hi Marymargaret and I am thrilled with your reassuring news, life is on the up!
Love Sue xx
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hi sue
It's new research my surgeon said, the risk was only a small one and it only seems to be happening in breast cancer patients...it's just something to consider in the future if one was ever needed
Take care
Gill
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Hi Sylvia and thanks for your message re some advice for my diet. I met up with a friend yesterday who has eliminated sugary goodies from her diet for over a year and has slowly lost more than a stone. I was able to do the same for a while but lapsed but now I am determined to get rid of the cake/biscuits/ sweets that tends to dominate my life when I feel low.
So today is day 2 of my healthy eating programme so I will keep you posted.
How are you feeling Sylvia? it is nearly 10 years since your diagnosis, does the anxiety leave you or do you just manage it? I am still at the stage where any twinge or pain makes me anxious.
Love Sue xx
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Hello Gill,
I was glad to know that you are home from hospital, but really appalled at your experience. This is just not good enough. I know how you must have felt, because I went through the same delay in November 2009 when I had to go into hospital for a parathyroidectomy. I was in there at the crack of dawn like you, but was not taken into theatre until about 4pm. Even then the anaesthetist told me I was lucky to get my operation as they were about to send me home. The consultant surgeon (also my breast cancer surgeon) came to see me while I was waiting and apologised for the delay, saying that the powers that be had messed her around as well. I think I got my surgery done thanks to her. She said it was not good to keep patients waiting as they need to be well hydrated before surgery. Anyway, it is now behind you in that respect.
I was really sorry to read that your surgery had not gone according to plan.
How awful that a blood vessel was cut during surgery, that you started to bleed, lost two litres of blood and had to be opened up hip to hip to repair the bleed, which resulted in four hours of surgery and a cannula in your left arm where nothing is supposed to be put. Even if the cannula had to be fitted for emergency blood transfusion, I do not understand why they did not put the cannula into the other arm.
I was not surprised that you felt pretty bad the next morning and that your red blood cell count was really low. It was not on for you to be told that you needed a blood transfusion and then to be told that you could not have one because new evidence indicates that blood transfusions in breast cancer patients is triggering recurrences. I have certainly never heard of this before and they should have known your medical history and informed you of all this before your surgery. It is something that I am going to try to look into. If this is true, how do we account for all the women that end up having to have blood transfusions during chemotherapy treatment? I remember seeing women hooked for blood transfusions in the chemotherapy ward when I was going through my chemotherapy treatment and we know that some are hospitalised for this. I am wondering why this would apply only to breast cancer patients.
It reminds me of a discussion that was taking place on one of the threads sometime ago about whether cancer patients could give blood. I do not think I found out the answer to this. Does anybody know whether cancer patients can give blood? Does anyone know or has anyone experienced not being given blood transfusions because they have had breast cancer?
I was glad to know that your blood count is increasing and that you have been put on iron tablets. I am wondering how long it will take for the level to become normal again. I think it is supposed to be about 13.
thank you so much for getting in touch so promptly. Take great care and remember you can come here and talk about anything you like if it helps to pass the time and put your mind at rest.
Fond thoughts.
Sylvia xxxx
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Hello Sue,
It is always nice to hear from you and I am sure you will persevere with your healthy eating. It is best not to think of being on a diet but to adopt a routine of eating for everyday living. Gradually wean yourself off cakes, biscuits and sweets and look for sugar if you buy any ready made foods or anything in tins. Apparently corn syrup and fructose is put into lots of products and is very fattening. Look upon sugar as your enemy and not your friend in times of stress. If you really need something try Lindt dark chocolate which is 90% cocoa and has very little sugar. I buy this from time to time but actually prefer Lindt dark chocolate at 99% but it is difficult to find except on line. If you have to have a biscuit then probably the best alternative would be organic rough oatcakes, sugar free.
Let us know what your healthy eating programme is, because we are all interested in healthy eating and what we are all doing. The secret is not to make it so strict that you cannot keep to it and to think of the way you eat as permanent and not being on and off a diet.
I do feel fine most of the time and anxiety after nearly ten years is still in the background, but I still cannot take anything for granted, especially when I read of people getting recurrence after longer than ten years. If I get any aches or pains or feel out of sorts I do have moments of worry. I was really upset when the neighbour here died of her breast cancer last summer. She was triple positive and such a lovely person. On the other hand, I have a friend who had breast cancer in her twenties and is now in her fifties. That makes me feel better. On the whole, you just have to get on with a normal life and hope for the best.
Keep well, Sue, and keep in touch.
Sylvia xxxx
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hi Sylvia
The cannula was put in my left arm because they said they couldn't find a good vein in my right arm but surely there are alternative places to put cannulas than the arms
my surgeon did say that this was new evidence and other doctors like the one who came to take blood because the nurses couldn't find a vein was unaware of it when I mentioned it....infact she was certain a blood transfusion was to be done if it came back below 8
I wouldn't of thought there are many breast cancer patients who have experienced this problem yet with the information being so new but i know we can't donate blood because my friend Ellie who used to donate regular was told this
Take care
Gill x
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Hello Gill,
I do hope you are slowly beginning to feel better and recover from that awful surgery.
I was wondering what dosage your iron supplements are.
Often people on iron supplements suffer from constipation, so you may want to eat some prunes as well. They are very rich in iron and I eat them as a regular part of my diet and they are also said to be low glycemic. I also eat canned red kidney beans regularly as part of my diet. Lentils are a good source of iron as well.
Thinking of you and wishing you well.
Sylvia xxxx
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Hello everyone,
I hope you are all managing to have a good weekend and doing something relaxing.
Congratulations to InspiredbyDolce for having an excellent result from her routine check up.
Thinking of you all.
Best wishes.
Sylvia xxxx
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Thank you Sue, I am relieved!!
I spoke to my oncologist last Thursday and he confirmed that it was indeed stage 2 and grade 2. I did question it, asking if the large size would would make it stage 3 and he said no, in his eyes it's always been stage 2. He said grade 2 was a more positive outcome for me. I feel much more positive and hopeful about the future, it's a feeling I haven't had in a while.
Gill, that's awful that you went through all of that and then the extra stress of the cannular, why can't the professionals talk to each other? Never use the bad arm!
Jacqueline, I researched that trial and found it so I asked my onco about it too. He is going to look into it with the view to joining.
Thanks Syliva, you're always there with kind words and great advice.
Question for everyone: when chemo/surgery/radio was all over for you, did you have any scans? My onco said it would just be monitoring for me if I felt that something was unusual.
Keep up the good work all, positive vibes are being sent,
Marymargaret
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Hello Marymargaret,
You asked about scans after treatment. I do not think there is a standard procedure for this, but I may be wrong. I had a CAT scan and a bone nuclide scan after treatment and I also had the same two scans before treatment. I think it is true that here in the UK we do not get the scans automatically that they seem to get in the US and that our oncologists depend on us to get in touch with them if we feel there is something unusual going on with our bodies. The only thing I have been having regularly over the past nearly ten years is regular mammograms every two years and the the physical check ups. These were three monthly for the first few years and then six monthly for a further few years, and then once a year. It started off alternating between the oncologist and the breast cancer surgeon and then when it went to once a year I was discharged from the breast cancer consultant and continued once a year with the oncologist.
I do remember the oncologist telling me that the most likely sign of any recurrence would be a rash along the line of the mastectomy.
The best thing is just to keep an eye on your body and look for anything that you think is not usual for you.
I have said in previous posts that in my opinion patients should be asking for DEXA scans before and after treatment to see whether there is any sign of osteopenia or osteoporosis because our breast cancer treatment can cause damage to our bones. A DEXA scan is low in radiation.
On the whole, I do have concerns about exposure to radiation, but it seems to be a no win situation. The scans most often show up things that may be wrong, but the radiation exposure may cause problems in the future. I have had the mammograms but with reluctance because we do not know what the radiation exposure is doing to us.
I hope this helps.
Have you been reading about all the breast cancer drugs that have been withdrawn from the special cancer fund because they are too expensive. I do not think it is right that manufacturers produce medication that is too expensive to give to all who may benefit. Drug treatment given on ability to pay is morally wrong.
February is not that far off now so I do hope all will go well with your radiotherapy treatment.
Thinking of you.
Best wishes.
Sylvia xxxx
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Hello everyone,
Breast cancer and cancer in general seems to be back in the news again. I do hope you will keep your eyes and ears alert for any information and post it in. Remember, threads have to be two way.
On Tuesday I read an article under Good Health in the Daily Mail that I found interesting. It was entitled "Simple steps that could stop cancer coming back – Just going for a stroll slashes the risk of recurrence by up to a half". It is by Lucy Elkins and is the story of Elaine Frazer's breast cancer journey. It is well worth a read. After finishing her cancer journey the words of one doctor resonated with her. They were "You have another chance of life if you change your lifestyle". Those words really hit home to her and she acted on them.
The article goes on to say there are more cancer survivors now than ever before – two million in the UK. Figures from Cancer Research UK now show that half of all those diagnosed with cancer will be alive ten years later.
The article points out that people who have had cancer are more statistically likely to get it again and points out that this may be because the treatment itself, such as radiotherapy, increases the risk of another cancer or because the lifestyle factor that contributed to their cancer in the first place has not been addressed.
The article also points out that cancer patients are more prone to other diseases such as stroke, heart disease and diabetes and that these can sometimes be due to cancer treatment.
The article in the newspaper is a whole page, so please try to read it. There is a bit about certain cancer drugs that weaken bones, putting people at risk of osteoporosis. There can be weight problems because of steroids or hormonal treatment such as tamoxifen and this can increase the risk of diabetes.
Scientists are now identifying how we can try to avoid our risks. The main factors are diet, a healthy weight and regular physical activity. We have discussed this a lot on this thread. Again, the importance of emphasising fruit and vegetables etc. and avoiding the standard diet we have in the west of red meat, processed meat and deep fried food, which are thought to trigger inflammation which can boost cancer cell growth.
Physical activity comes out tops as well and it does not have to be overdone. A thirty minute walk a day is stated as cutting the risk of dying from the disease by 40%. I think on the thread we all know that keeping physically active is important.
The article says that for information packs about physical activity you can go to macmillan.org.uk/movemore or call the Macmillan helpline 0808 808000.
Also in the news is information about all the cancer drugs that are being axed from the Cancer Drugs Fund because they are too expensive for the NHS. There is an article in the Daily Mail on Tuesday by Jenny Hope, Medical Correspondent, entitled "Anger as 21 cancer drugs are axed for being too expensive". There is a photograph of a breast cancer patient who is saying "I am still here five months later". She has terminal cancer and has been taking the drug Halaven since September. A section of the article has some of the life prolonging treatments that are being withdrawn and Halaven (eribulin) is one of them. It costs £10,000 for a six month course and is made by Elsai. Another breast cancer drug being is Afinitor (everollmus) for advanced breast cancer. Trials have shown it can stop tumours spreading for nearly eight months – twice as long as alternative drugs. This costs about £36,000 per treatment course. Made by Novartais. Yet another is Tyverb (lapatinib) for aggressive breast cancer. Patients taking it survived an extra four months. Cost £1,600 a month, made by GSK.
The drugs being withdrawn are said to be "insufficient value for money". There is much more information so you need to read it all for yourselves.
I do hope the week is going well for all of you, but especially for those going through treatment or recovering from it. I am thinking in particular Marymargarethope, Jacqueline1963, and the wife of Breastcancerhusband Tom, not forgetting Carolben, and Jackpot (Gill), recovering from hysterectomy surgery.
Thinking of you all.
Sylvia xxxx
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Hello everyone,
I am just popping in again to ask if any of you have heard of baobab that I saw mentioned in the Daily Mail on Tuesday. It is being described as the new super fruit and the star of the fruit bowl. I have certainly not seen it as a fruit, but I do know the name. In the Mail under the title "Savvy Shopper", I can only see products processed from it. As you know, I am wary of processed products. It is described as being packed with antioxidants, potassium, magnesium and calcium and as having six times the vitamin C of an orange, double the calcium of milk and tasting delicious, not to mention B vitamins. Apparently it has a pear like taste.
The news about all these cancer drugs being withdrawn is in many of the newspapers, so take your pick or look on line and if anyone spots a baobab, please let me know.
The tree is known as the upside down tree.
Looking forward to comments.
Best wishes.
Sylvia xxxx
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Hello everyone,
The thread has been very quiet for a few days, so I am hoping that no news is good news, but we do have to try to keep the thread active.
To Jackpot (Gill), I do hope that all is well with you and that you are making a good recovery from your surgery. I think you said that you would be off work for six weeks, so I do hope you are finding something to occupy your mind during this time. Do you have a date for any check ups?
To Marymargarethope and Jacqueline1963, do you now have definite dates for your start of radiotherapy and have you had pre-radiotherapy appointment?
To breastcancerhusband (Tom), I hope all is well with your wife and that she is managing to get through her chemotherapy. Have you had any follow up to that proposed project of your?
To Suewirral, I hope you are managing to keep your spirits up and that 2015 will be an easier year for you.
To Carolben, how are you these days? Care you still having a chemotherapy break?
To Chatterbox (Michael), we have not seen you on the thread for a while and I do hope all is well. Are you hibernating up there in Northern Ireland or have you gone off to warmer climes? Are you still doing various surveys?
Best wishes to linali (Lindsay). I thought about you today when I was listening to a programme about mindfulness. I remember that you mentioned it once on one of your posts.
Best wishes to InspiredbyDolce (Debra), maryna8, adagio and Susaninicking. Thinking of you all and hoping all is well and that you will pop in to say hello.
To anyone newly diagnosed, do not embark on this cancer journey alone. Come and join us.
I was reading a new section in the Radio Times today, a book section, entitled Your RT. This one had as the heading "The Fast Diet just got better!" it goes on to say "Thousands of people have lost weight using the 5:2 diet – but it can combat cancer and ease asthma too, says Michael Mosley".
He mentions his book written two years ago entitled "The Fast Diet" and says how much has changed since then, including research into the effects of intermittent fasting on inflammatory disease such as asthma, eczema and psoriasis.
I know we are all interested in eating properly and maintaining our ideal weight and I know that on other forums there is a lot about women trying to lose weight.
I was really interested in reading about a study published in June 2014 in which a Professor Valter Longo, director of the USC Longevity Institute and his colleagues showed, for the first time that fasting can switch on stem cells and regenerate the immune system.
2Stem cells are cells that, when activated, can grow into almost any other cell. They can become brain, liver, heart tissue, whatever. The study findings are exciting because, as we age our immune system tends to get weaker. Being able to create new white cells and a more powerful immune system will not only keep infections at bay, but may also reduce your risk of developing cancer; mutating cells that could turn into a cancer are normally destroyed by the immune system long before they can escape and multiply."
There is a lot more in the article about the benefits of fasting. The 5:2 diet is about eating normally for five days in a week and then fasting for two days by cutting your calories for those days to a quarter. I know this is the latest trend for losing weight and I was wondering whether anyone is following it.
There is more information than I can put here but one important factor was that this kind of fasting clears out damaged white blood cells but also lowers levels of Insulin Growth Factor 1 (IGF-1), which has growth promoting effects on almost every cell in your body. As you get older high levels of this seem to lead to accelerated ageing and cancer.
Other parts of the article explain how this diet helps your asthma and banishes eczema.
All this is in the Radio Times of 17 – 23 January 2015, for those of you in the UK. Others might be able to find something on line.
Wishing everyone all the best.
Sylvia xxxx
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Hello everyone again,
I should have said that the article states that "Intermittent fasting seems to give the OK for stem cells to go ahead and begin proliferating. This research certainly suggests that if your immune system is not as effective as it was (either because you are older or because you have had a medical treatment, such as chemotherapy), then periods of intermittent fasting may help regenerate it".
I would appreciate your comments and would be most interested to hear from anyone who is trying this 5:2 diet.
Thinking of you all.
Sylvia xxxx
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Hi Sylvia
Just catching up on the thread. I was interested in what Gills surgeon said about blood transfusion and relapse. Janette had to have transfusions because of a bleeding. So, I wonder?
Winter hasn't been too bad so far this year. I was in Portugal last week for a few days and the weather was lovely. This time of year is poignant for me and now the dog has a banjaxed leg which I am fretting over. I, somehow, have managed to let her weight get to about twice what it should be, which I am sure doesn't help her leg. She is on a mega diet and is loosing about a 100 grams a week.
Best regards to all
Michael
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Hello Michael,
It was nice to see your post and to know that all is well with you. I was glad to know you are catching up on the thread. It has been quite active but has now gone quiet.
Like you, I was very interested in what Gill's surgeon said about blood transfusions and relapse. It made me wonder how they had only just come to realise all this and how many patients have been given blood transfusions. It will be a worry to any patient having had them and make them anxious about relapse.
I can understand how you will be wondering about the fact that Janette had blood transfusions and then her cancer came back.
Since they now have this information, what will they be doing with patients going through chemotherapy and needing a blood transfusion? It sounds like a no win situation. I have heard it said that you cannot give blood if you have had cancer. Is this true? If it is, why have cancer patients not been told this or given some card to carry about it? Do you think people turning up to give blood are asked this?
What do you think about all the cancer drugs that have been withdrawn from the Cancer Fund? Are you affected by this in Northern Ireland?
It has been very cold here in Exmouth for the past few days and not very pleasant. People still flock to the seafront as long as it is not raining. We drove along there this morning and there were quite a few kite surfers quite a long way out in the sea. It does not look very enjoyable to me but I suppose for some it gets the adrenaline going. At least we have a big modern lifeboat and a big modern lifeboat station. The beach is always full of hardy souls walking their dogs, which they can do out of season.
I bet you appreciated that lovely weather in Portugal, if only for a few days. I can understand this is a difficult time for you and I can understand how you are fretting over your dog. I do hope she will be alright and that her leg will get better. You will have to get her doing lots of walking to lose the weight. I wonder whether there is a 5:2 diet for dogs! It looks as though intermittent fasting is veery good for humans, so why not for other species? I am sure your dog is your good friend and companion. People in Exmouth seem to be great dog lovers and see more here than I ever did in Essex.
I must admit I have got fed up with winter and am so glad to see the evenings getting a bit lighter and the bulbs shooting through the soil.
Do you ever read the Observer on Sundays? There were some interesting articles in it this past Sunday. I read with great interest one by Dr Roberts who is on the television. She was picking up on the headlines in the papers recently about cancer just being bad luck and chance. It was all about how everything is down to chance. We are born by chance and everything happens by chance in our lives. Nothing is pre-ordained, so why should it not be the same within our bodies? I think you would probably find it interesting. There is also an interesting article about how technology is messing up our brains and that multi-tasking is not good for us.
Keep well and keep in touch.
Best wishes.
Sylvia
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Hello everyone,
I am just popping in to say that I reached 9 years and 7 months yesterday, so just five more months to reach that 10 year goal.
I am wishing the cold days away so that I can get back to gardening.
I hope everyone is taking their vitamin D. It is so important during these cold,sunless winter months.
Are any of you planning winter holidays in warmer climes?
Thinking of you, Sylvia.
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Sylvia - that is super that you have come so far along this journey - what an inspiration. I have been somewhat too busy, but trying to slow down, but still try to read the posts most days. I had my winter getaway in December to Jamaica and it was very restorative to have some warmth on the body. Still taking 5000 units of vitamin D and am about to research the 5:2 diet you mentioned.
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Hi Sylvia
I am wondering how long the knowledge of the blood transfusions harm has been known, I must do some research.
I am not really aware of what drugs have been withdrawn and even what is available in NI. It used to be that whatever you needed you got, but I know that is no longer the case. They can't even run enough clinics. My consultant told me that he even offered his services for free, so that another clinic session could be run but the Trust refused.
I was listening to Irish radio yesterday and they were interviewing a lady with a very rare blood disease but the drug that can successfully treat it costs €435000 a year and the HSE were refusing to pay. The company is under pressure to reduce the price.
I think the coalition has totally trashed the health service and I am amazed that it is not an election issue. I would have thought that labour would be much more strident on the matter.
Michael
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