Calling all triple negative breast cancer patients in the UK
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Happy Sunday Everyone,
Sylvia, I was curious about the question that you raised about testing, mammograms, and ultrasounds. Apparently, ultrasounds are not as detailed as CT scans or mammograms. Not long before I had cancer, I was very closely monitored due to other issues with my breasts. I went in for very detailed, lengthy, uncomfortable, full-breast ultrasounds. Those tests may have missed the beginning of my tumor. All I can guess is that though the ultrasounds are less damaging, but maybe the technicians can't see much unless they have a decent-sized lump or bump to go after visually. As for my lumps and bumps, they are in a line along the incision of my non-cancer breast. They are perhaps not as concerning, given the fact that they follow the line of the stitches. I also have one where the drain came out of my skin on that side. On the radiated side, everything is as smooth as can be, which tells you something about the effect of radiation on the skin.
When I was going though chemo, I vaguely remember understanding why the protocol was Taxol/Carbo before AC. I don't remember now, but it may have to do with the fact that Carbo was considered the latest treatment innovation, and that my case was considered aggressive.
I don't know many others with TNBC, outside of this forum. I think it's great that you have a couple of very good medical reference books. Years ago, I used my most trusted one to self-diagnose an issue. It's powerful to have some research behind the firsthand knowledge of your symptoms, along with visits to a doctor. As for the Devon Cream Tea, I would probably try it once. It's probably delicious. It's designed to appeal to the reward centers in our brains, with carbs, sugar, fat, and dairy.
I'm off to start my food prep for the week, which will include few of those things, but will have olive oil roasted vegetables, lean meats, and the Instant Pot "grassmilk" yogurt that I finally mastered. I've lost 10lbs since late Jan, on Weight Watchers. That's a very slow rate, but I'm happy with it. I was able to do some other chores and laundry that keep my week running smoothly, too. I needed some downtime time at home badly.
I just finished a book called Tattoos on the Heart: The Power of Boundless Compassion, by Father Gregory Boyle, a Jesuit priest who has been running a gang-intervention program in East LA for over 20 years. I've followed his story in the local paper, and heard him speak at our university. He's just an extraordinary human being who literally practices what he preaches. He's also a very down-to-earth priest who empowers broken and lost people by creating kinship, and providing jobs, coaching, love and support. The book itself could do with some editing and clarification, but his stories are incredible.
Adagio, thanks for thinking of me and my recovering ankle. As a fellow traveler, I'm sure you understand how grateful I was to have time for it to heal. Have you said where your next trip will be?
Mary, I've enjoyed your pictures of the flowers on the table, with the tree sprouting green leaves outside. I also liked the one with the forsythia flowers. It looks like spring is finally coming to the Midwest.
LoveandLight, I had Taxol, without neupogen injections. I only recall having back pain during that time. The bone/joint pain came after treatment, and most of that pain has passed.
Hanieh, It's so good to read your posts and see your lovely family. I hope you're feeling a little better every day.
Have a good week,
Pam
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Hello Pam,
I think that with reference to scans, we have to leave it up to the individual patient to decide which ones they want. None of these scans is perfect and there is a lot of discussion lately about whether scans are picking up things that would never have amounted to anything. I know that in the New Scientist magazine there is an article about over diagnosis by the medical experts.
There are also a lot of false positives with mammograms and also mammograms missing out on tumours. I tend to think we are all being subjected to too many scans, but that is my opinion.
Radiation is very damaging to the skin and we do not know what is going on beneath the skin. My oncologist told me that radiotherapy could cause inflammation of the lungs and other people have skin that has burnt. I was reading a post recently in which there was mention of 3D radiotherapy and MRT with the implication that 3D was better. I do not know anything about this. I do know also that radiotherapy can cause lymphoedema.
As for books, I shall always refer to my medical books for information rather than the internet. I am in the process of reading a recent and most interesting book entitled "Tripping over the truth – How the Metabolic Theory of Cancer is overturning one of Medicine's most entrenched paradigms" by Travis Christofferson, MS. I have not got that far, but I am finding it eye-opening.
I discovered that this year that almost 600,000 Americans will die from cancer and that equates to 1 in 2 men and 1 in 3 women. What truly astonished and concerned me was to learn that "real death rates from cancer are the same today as they were in the 1950s".
I was interested to read about what I think will be the theme of the book: "The prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar".
I have yet to work out exactly what this means.
You sound very organised in the way you prepare everything in advance for your working week.
Congratulations on losing 10 lbs since late January. I think that is very good progress. We are told it is best to lose weight slowly.
Have a good week.
Love.
Sylvia xxxx
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Hello everyone,
I hope you all had a good weekend and are ready to face the coming week.
Thank you Mary, adagio, Hanieh, Lou and Pam.
I do hope all is well with Sarah and her mother, Kathesward, Val and any others I have missed.
Best wishes.
Sylvia xxxx
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Hello Marias,
I somehow forgot to mention you yesterday. Of course we have not forgotten you on the thread and I do hope you are making good progress. As soon as you feel you are able to, we would love to hear from you and catch up with your news.
Hello Suzy in London, England,
I know you were having to make some decisions about your treatment. How are things going?
Sending you best wishes
Sylvia xxxx
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HI, Sylvia
There are a lot of words for a rash, I guess that's because they are so common and make people suffer a bit. My mouth sore is gone, the blister under my eye is almost gone and I am only left with cracks on the side of my mouth. Things just go haywire sometimes, and sometimes come from irritation.
I have not seen or used a toothpaste with black charcoal . I think if a person is religious about flossing and brushing well, then gums will stay well. And then there's the Dental Diet, a good diet will help. I'm sure if one has a bad diet it will also affect the gums, and not in a good way.
It makes sense there would be a link between gum disease and cancer, there is also a link between mouth disease and heart trouble. Perhaps because if a person is not taking care of their mouth, they probably are not taking care of other things.
Devon cream sounds like a lot of trouble, I would try it just once if I was in UK, but whipped cream sounds a lot easier and is good too if I was in the mood for something like that. It's interesting that the cream from Devon and Cornwall has a "Protected Destination of Origin" by EU directive, I guess the milk from there is superior for making this dish! Thanks for the info, I used to read about it in the Gothic mystery novels I read when younger. Victoria Holt etc. Although I put "Rebecca" in a class by itself, so much better.
I am going for my twice-annual oncologist visit near the end of April, and I got a phone call that she had ordered a breast MRI for me next week. Probably because a couple of years ago I told her that my screening mammogram 3 months before cancer diagnosis did not see anything. At least an MRI isn't harmful, just expensive. I think I am going to take along the books on BC that I have and leave them at the Cancer Center, I am keeping a couple of them; The Cancer Whisperer, and Anti-Cancer, A New Way of Life.
I think we are finally going to have spring, after a very nasty day yesterday things have turned around!
I shall talk to you soon, love
Mary
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Hello Mary,
It was nice to hear from you. I think that we all get a bit run down from time to time and then things start happening with our skin or are just visible on the skin and not elsewhere.
I also think that it is important to keep our mouths healthy and so we need to take great care of them, but I also think we can take care of them and still get problems.
I have always taken care of my teeth and gums and yet I have problems. My dentist always tells me that he can see that I take care and that it is just unfortunate that I have inherited genetic gum disease from my parents. I do not know what to believe. All I know is that my brothers and I all have gum disease, despite being scrupulous about cleaning etc. and seeing the dentist.
Diet is important but I do wonder whether it is a guarantee. I feel that it is in the mouth that all our chronic illnesses, and that includes cancer, may begin. It is the gateway to our body. I am not surprised to read about the proven research that finds there is a connection between gum disease and cancers. I also wonder whether we are getting over-treatment at the dentists.
I know that over here in the UK the dentists seem to be going away from the idea of flossing and we are all being told to use interdental brushes. My hygienist told me that it is not good to get too much cleaning done because it makes the teeth too sensitive. I wonder about all the different toothpastes and whether a lot of them are doing more harm than good.
I remember the periodontist I had in Canada at the University Hospital Department told me that he treated some of the elderly patients there who did not clean their teeth and had filthy mouths, but had no sign of decay or periodontal problems. We probably have problems in the West because of our over-processed diet.
I was interested to know that you are going to see your oncologist at the end of April and I do hope you get good news. I must say I was surprised to read that you had received a phone call to tell you that she had ordered a breast MRI for you for next week. It seems a bit over the top. I cannot believe that a breast MRI is needed for a check up, but that is just my opinion.
Are you sure that MRIs are not harmful? An MRI is a really powerful magnetic field and we cannot know how it will affect the body. It is in the same category as EMFs Electro Magnetic Fields) which are of great concern with reference to cancer. I think over here MRIs are used only for something major.
You are right that they are very expensive.
That is a good idea to donate some of your breast cancer books to the Cancer Centre.
I have just received my LymphLine Spring edition from the Lymphoedema Support Network. I have read it through and conclude once more how neglected and ignored lymphoedema is and how ignorant GPs are about it. I cannot believe that some of them have been treating patients for simple oedema by giving them diuretics!
One of the case studies was about a woman who was prescribed an antidepressant drug that caused her to have lymphoedema. She was taking a drug called Mirtazapine for three years and ended up putting on three stone (42 lbs). The patient went to see a different doctor and he diagnosed lymphoedema. The drug company did not want to know about it.
As I mentioned before, in the magazine What Doctors Don't Tell You, I read the short article there entitled Link between gum disease and some cancers proven. Some research found "that the bacteria in gum disease have also been found in colorectal cancer tissues".
I have also been reading the latest edition (April 7th) of the New Scientist and read with great interest the article under Profile entitled "Look too close and we're all sick" - "Diagnostic tests are becoming too good for our own good, warns H. Gilbert Welch, who believes it is time to reassess what medicine is for".
This man became a physician and academic researcher "and has spent the last 25 years warning of the dangers of overzealous medicine. He worries that doctors are detecting problems too early, convincing healthy people they are sick, and treating them too aggressively."
I think you would find this article very interesting. It is on pages 44 and 45 of the magazine.
On page 12 of the same magazine there is a short article entitled "Our unknown organ may help cancer spread". It is all about a newly discovered network of fluid-filled channels in the human body may be a previously unknown organ, and it seems to help transport cancer cells around the body.
I found it a bit difficult to understand but it seems that investigation is now underway about whether analysing the fluid in these channels might lead to earlier diagnosis of cancers.
Articles about cancer seem to be popping up all over the place, so we seem to have over-information difficult for ordinary people to understand and over diagnosis, too many tests and scans just because they can.
Iodine is also in the news.
By the way, have you any views on fluoride in the water supply? I know there are strong views for and against. I have read that fluoride displaces iodine in the body and we know that iodine deficiency is found in breast cancer patients, so I am wondering about all this.
I do hope that newly diagnosed breast cancer patients are benefiting from all the information they get on these threads and that they are questioning all their treatment and all the possible side effects, so that they can make truly informed decisions.
That is about all for now.
Love.
Sylvia xxxx
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Hi, Pam
Glad you liked the flower pics, haven't had many so far, we've had a very cool spring. Things are supposed to change though, with a few days of 70+ degrees coming up.
I only knew one other person around here that had TNBC, although I know probably a dozen or more that have or have had hormonal BC. The TNBC lady had mets to her lungs at the time of her diagnosis, so it was found late. She still lived on for several years, and was on chemo of some kind all the time.
I hope all your little lumps and bumps on the incision are found to be completely harmless, and can be forgotten about. I have little bumps where they took out my port, I think they are stitches that didn't dissolve.
Congrats on losing the 10 lbs! That's so encouraging to get such a good start. Are you satisfied with that or do you want to lose more?
Speaking of trips, I will be going to Amsterdam in May, then down the Rhine River, ending with a few days in Switzerland. Trip time is coming up fast, I am always anxious about things till I get away.
Have a good week, enjoy all the cooking you did!
Love, Mary
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Sylvia,
I'm puzzled about fluoride, I know it is said to be bad for us. When I was growing, on one of my early dentist visits I remember the dentist saying that my siblings and I all had good, strong teeth but we had a lot of cavities. 20 years later when I started out with a new dentist, he looked in my mouth and said he could tell I had grown up in the country drinking well water with no fluoride because of all the fillings. You are right, it can't just be diet because we ate all fresh food, drank fresh milk and everything homemade when we were growing up. Then when I was in my 20s I did neglect my mouth and diet somewhat, and ended up with bleeding gums. Which was the periodontal disease I still battle today. So fluoride apparently helps avoid cavities, although I know people older than I that never had a cavity and didn't grow up on fluoride water. And perhaps if I had stayed vigilant through my 20s I could have avoided the periodontal disease. More unanswered questions!
I don't think there are any guarantees about anything!
About the breast MRI: Apparently my insurance will pay for the MRI once a year if a cancer patient has dense breasts that are hard to read with a mammogram. My MO goes by the book, if the insurance says they will pay she will order it, I don't mind having it although it is a bit uncomfortable, I don't have a lot of confidence in mammogram after realizing it didn't see my tumor back in 2013, and I told her just that a couple of years ago.
I wonder if the lady who put on weight because of lymphedema caused by an anti-depressant got better after stopping them? It might have been a misdiagnosis, and simply been edema. Many of the anti-depressants cause weight gain, I have not explored why or how that happens.
Very interesting idea about the doctor who thinks perhaps we are detecting problems too early, and overtreating. I guess it is possible that some things would just go away by themselves, but how do we know the difference?
I also read an article about "the newly-found Organ" called the interstitium, or interstitial that is the system of fluid channels in the body. Doesn't it sound similar to the lymphatic system?
I have to close for now, love
Mary
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Hello Mary,
I think that fluoride was put in water to try to prevent cavities in teeth. Putting fluoride in water seems to be over the top. I think the way to prevent cavities is to stay away from sugar and all sugary products. The supermarkets are inundated with sugar and here in the UK the politicians think a tax on sugary drinks will solve the problem. They are the tip of the iceberg and most days now I am asking myself what planet do these politicians live on?
Very recently I have been reading and researching fluorine after talking to someone. Apparently, fluoridation of water has some serious consequences. It displaces the much needed iodine that is used by all cells in the body and replaces it with fluoride. I have read that many people are suffering from low iodine and even iodine deficiency. The main sources of iodine in the human body are in the thyroid and female breasts. You can see the problem when this gets displaced by fluoride.
I have also learnt that chlorine, bromine, and fluorine all eject iodine from the human body.
Common sense shows that lack of iodine will cause a lot of hormonal issues and chronic disease.
If we add to this vitamin D deficiency, or very low vitamin D, it seems we could be going along a path of serious disease caused by deficiencies.
With iodine, we have to be careful to get the right amount. Apparently an adult needs 150 ugs (micrograms) a day. If we are under we get an under active thyroid and over we get an over active thyroid. Expectant mothers need extra iodine for their babies and babies need it from their mother's breast. The mothers will not have it if they are iodine deficient.
Once again I am wondering why we are not tested for iodine deficiency in regular blood tests. It makes me wonder how useful these blood tests are. We are not tested for vitamin D and we are not tested for parathyroid hormone (PTH).
You are right about a lot of unanswered questions. I think all we can do is get informed and in a way do self care.
As for scans, I think we just have to make up our own minds. I have had four when I had no choice during my breast cancer treatment. I had a CAT scan and a bone nuclide scan before treatment and the same two scans after treatment. I do not think I shall ever consent to any more and I certainly do not intend to have any mammograms. My aim is to steer clear of hospitals and doctors.
The lady with the lymphoedema problem did resolve her weight problem. She had put on 42 lbs in three years and she took it all off. However she was left with the lymphoedema problem because there is no cure. There is a big difference between lymphoedema and oedema.
I have to stop now. I shall continue later.
Love.
Sylvia xxxx
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Hello again Mary,
I forgot to list foods that are rich in iodine.
Iodine Rich Foods:
Sea Vegetables. The ocean hosts the largest storehouse of iodine foods, including Kelp, Arame, Hiziki, Kombu, and Wakame. ...
Cranberries. This antioxidant rich fruit is another great source of iodine. ...
Organic Yogurt. ...
Organic Navy Beans. ...
Organic Strawberries. ...
Raw, Organic Cheese. ...
Organic Potatoes.
There are other sources, such as white fish, wild caught, green vegetables, eggs, prawns (not farmed) and seafood in general, Lima beans (I think these are the same as broad beans), organic corn, green peas, bananas and prunes.
A lot of these products depend on the quality of the soil.
It looks again as though the answer is to have a very mixed diet.
A bit later on I might try to post the common signs of an iodine deficiency.
I also shall continue about the difference between lymphoedema and oedema. It is of concern to read that doctors seem to know little about lymphoedema and show no great interest, often treating it with diuretics as they treat ordinary oedema. Of course, the diuretics do not work. One definition of the difference between the two is that oedema will go away but lymphoedema will not. Oedema in the feet gets worse when standing but if you elevate your feet it goes away, temporarily. I saw this in my mother and her feet. She suffered from heart failure and valvular heart disease.
On a different matter, on some of the threads I keep reading about women with a new primary, recurrence or metastases after being in the clear for a long time. I have seen quite a few posts mentioning 13 years in the clear and then the cancer coming back. It is quite frightening and discouraging, although I know that I have to realise that I do not know the details of each individual case. It will be thirteen years for me on June 20th this year. I have one neighbour with metastases that came back after thirteen years and that was a few years ago now. She had hormonal breast cancer. The other friend here is 34 years out from diagnosis and she had it in her twenties. She had a lumpectomy and radio active pellets back in about 1983. Hers might have been triple negative, which was not mentioned at that time.
I still have to go through the rest of your post when I can. I am not sure if it will be today.
The thread has been quite inactive this week, just you and me and Pam.
Love.
Sylvia xxxx
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I thought this was an interesting article, and I followed one of the links, also interesting; about pre-op chemo for BC
https://www.statnews.com/2018/04/11/cancer-tumor-c...
Mary
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Hi Sylvia, Mary and all
Mary, thank you so much for all your nice words. You made me laugh by your last sentence. Also, thank you for all the encouragement you give me about my hair growing back. These days my head is getting darker and I check my hair growth in the mirror at least 20 times a day. That seems ridiculous to others who have never experienced what we have gone through but I'm sure you can symphatize with me.
Sylvia, I hope the the rash is disappearing and it's nothing important to demand treatment. You are our great inspiration here and I deeply pray nothing and even the smallest issue ever bother you. Thank you for this thread and all the information you always give us.
Now, we are in the North for our weekend to refresh. The weather is so lovely and everything seems perfect at this time of the year. My father's small garden is full of flowers. I feel my energy is back and I m again on my feet full of hope for good days to come when I m completely healthy and my hair is flown in the wind.
Love
Hanieh
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Hanieh,
I'm glad you can get away to the North where it must be so beautiful, and so very different than the city where you live. You always sound so happy when you talk about going there.
I have seen on some other threads here how people used the cold-cap during treatment and saved much of their hair, but it is not an easy process. But it shows you that hair means a lot to we ladies, and we are happier when we choose what length it will be! I think I have told you before about the first time we went out to a dinner with me not wearing a wig, after chemo. My hair was very short, just long enough that it was in curls. I was so tired of the wig that I told my husband I was not wearing it, he was a little doubtful about it, but it felt wonderful. I'm not sure how I looked, but I didn't care and people were very kind. My hair started to grow back a little while I was on the Taxotere.
Have a wonderful time, and soak up the sunshine and beauty of nature!
Talk to you soon, love, Mary
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Forsythia now in full bloom, maple trees have buds.
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Sylvia,
Thanks for posting the list of iodine-rich foods, some of them are easily available to me, others not as easy. The store I visit most often has one organic sweet potato, but it is almost tasteless. Doesn't seem worth the money. I really like beans of all kinds, but have to be careful to only have very small servings or they bother me for a couple of days. I do find navy beans easier to digest than some of the others. I have been avoiding all the farmed fish and shrimp too. I did buy a bottle of nascent iodine, and I take 3 drops a day. When I was at the cancer symposium in 2016, there was a speaker there who had started a line of supplements. He explained the process of producing all of them, he seemed very sincere and knowledgable and I have been buying a few of his products since then. Powdered bone broth and a probiotic, and now the nascent iodine. The "nascent" form of iodine is easier for the body to assimilate, apparently.
I am very familiar with edema, my husband also had congestive heart disease, and it was a constant problem when the fluid built up not only in legs, but also around the lungs. Sometimes my ankles will swell slightly, I think this was aggravated when I had the injections for varicose veins. I have to be aware of this on long air flights. I will look up my grandfather's old ledger when I get back to my home-place, I remember seeing in it a "Cure for Dropsy", which was another name for edema, circa 1900. And yes, it's different than lymphedema. Some time after mastectomy, I went back to my surgeon because of swelling around my surgery site. She put in a needle and drew out a syringe full of fluid. She said it was a seroma, and that she was glad it was not lymphedema. She would not have been able to help in that case.
I have also seen some of the posts on other threads about women who have had a recurrence after many years being cancer-free. It is disheartening, I agree. I guess we are all vulnerable at any time, those of us who have had cancer and those who have not. I hope you do not let it bother you too much, you live in such a clean and structured way that you are doing all you can to keep yourself in good shape. It emphasizes again to me that we all have to enjoy what we can when we can, because none of us know the future.
Closing for now, love, Mary
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Hello Mary,
Thank you for the link. It makes interesting reading but once again it is all about mice and drugs!
Thank you for the lovely photograph. Spring is definitely here now.
Love.
Sylvia xxxx
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hi everyone
Back from my holiday in Kuala Lumpur and had an amazing time! The humid environment did wonders for my aching joints and didn’t have a problem while I was there. Need to get my head into gear still though and stop obsessing about everything. I have had a red area on the skin near the corner of my right eye for many years and have had milia or white skin spot near there. Once again I started obsessing anf squeezed and scratched it until it became very irritated. Now I’m paranoid it’s something insidious. I know that it was there around 5 years before my diagnosis and didn’t become irritated until I squeex d it and put alcohol wipes on a very tender area under m eye, it’s slowly get better if I don’t touch it but still
Scares me so much!
I hate this fear! Other than that I feel good. Have put on a little weight and my aching joints are slowly feeling better, I need to breathe and start enjoy my life but it’s like I’m too scared.
Uni is very busy and I am
Doing well so far. Back to work on Tuesday, I have enclosed a couple of pics of me in KL and the propels for the giant wind farm they are building near Broken Hill. We travelled behind them on the way home from Adelaide. Hope u are all
Doing well
Cheers
Kat
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Hello Hanieh,
Thank you for your post. Yes, the rash is slowly disappearing.
Thank you for your very kind words. I have been only too pleased to help others.
It sounds as though you are enjoying your time in the North and I do hope you will come back fully refreshed and feeling full of optimism. Your father's garden sounds lovely.
I can understand how anxious you are to get your hair back. That day will come and you will feel back to normal.
I am reading a very interesting book as a way of relaxing. It is entitled Histories of Nations – How their identities were forged, edited by Peter Furtado and published by Thames and Hudson. It has a lot of illustrations. It covers 28 countries, including Iran, which naturally I have been reading about. It is good for me at the moment as it is short chapters and can be read in any order. There are eight pages on Iran and the title of the chapter is Iran – A long history and short-term society by Homa Katouzian. I found it very interesting, especially about how for a very long time it was called Persia. It is a potted history, really.
I am also keeping up to date with what is going on with cancer. I am reading a book entitled Tripping over the truth by Travis Christofferson, MS – How the Metabolic Theory of Cancer is overturning one of medicine's most entrenched paradigms. I have not got very far, as I always seem to have something to do. I have lots of duties as a director in our apartment complex, trying to keep everything in order at home, with lots of help from Raymond, doing the thread and I always want it to be of good quality and helpful and something of which we can all be proud and from which we can find help and comfort and feel a sense of togetherness. If only our politicians could do the same!
Take care and I want to say you are a very sweet young woman.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your interesting post.
Like you I also like all kinds of beans but eat mainly red kidney beans, chickpeas, soybeans, broad beans and lentils. As you say, they need to be eaten in small doses, but are very important in the diet.
I was glad to know that you are staying away from farmed fish and shrimps. I am also doing that.
I was interested to know that you had bought a bottle of nascent iodine and take three drops a day. I have a good natural food store here in Exmouth, called Mother Earth, so I buy quite a lot there. I am very vigilant about what I buy as I find the natural food industry is going the way of the supermarkets and getting too many processed products. I tend to buy what is in the fridge there, organic tempeh, Sojade organic soy yoghurt, a coconut spread for toast etc., Karma kombucha drinks, and fresh sauerkraut. I do believe what I read about the importance of fermented foods for the gut. I do buy the 100% Montezuma chocolate there as well. I buy the plain but you can also get it with almonds or orange flavoured. I buy most of my seeds there, as well as Japanese seaweed products for iodine. I have been buying Clearspring green nori sprinkles for some time and sprinkle it on stir fries or coat fish with it. Yesterday I bought Clearspring Japanese sea vegetable salad. It says to soak it and it will swell quite a lot and then to cook it with whatever you want. I have been buying kelp powder for years but can only get it in Sidmouth, which is twelve miles from here.
How much iodine is there in the three drops that you take daily? Everything I read says that adults need only 150 µgrms and not to go over it.
I was most interested in what you had to say about oedema. My mother used to get it in the lungs as well as the feet and legs. It is very serious.
In the book Let's Talk Lymphoedema there is a section on varicose veins on pages 30 to 40. They are described as stretched tortuous veins that are engorged with blood because they are not emptying properly. Pressure builds within the varicose veins when you are sitting or standing, forcing fluid into the tissues – a good deal more fluid that would be expected from normal veins. Unless the lymph drainage is robust and capable of dealing with this extra fluid, oedema will occur.
What is of interest in this section is that it says "Surgery for varicose veins will often reduce the swelling but if it does not then the cause is probably lymphoedema. Furthermore, as lymph vessels are positioned anatomically very close to surface veins in the leg, any surgical treatment of varicose veins can damage the lymph vessels as well."
I am not sure how orthodox medicine treats varicose veins nowadays in the UK. I do not know if they do surgery. They used to strip out the veins. The problem with this is that they can recur. There is also laser treatment but the veins still recur.
There seems to be a genetic connection between inherently weak veins, susceptible to become varicose and a weakness in your lymph vessels which could make you more susceptible to lymphoedema.
I was interested in this because since I developed the lymphoedema back on Friday October 13th, after a flu injection on Tuesday October 10th, I have developed a varicose vein on the right leg and have some of that staining mentioned at the bottom of both legs. Have you got any ideas?
Again, throughout the book, it is mentioned how common lymphoedema is.
I was interested in what you said about a seroma. I believe that is also quite common after breast surgery.
I do agree, Mary, with what you say about how we have to enjoy what we can when we can, because none of us knows the future.
I do hope you have a good weekend. Here in Exmouth it is dry, but no sun. I hope to post some photographs of the grounds over the weekend.
Love.
Sylvia xxxx
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Hello Sylvia, Mary and all here
Mary, the picture you posted seems lovely as you, yourself. Spring has come with all its beauties and we should all try to make the most of all its beauties. Thanks to this disease, we are able to enjoy the slightest pleasures of this world. I think you live in a very beautiful area. I hope to escape the apartment life and be close to the nature when we get the chance.
I used cold cap in my first round of chemo 4 years ago. But it failed to save my hair after all the excruciating pain I tolerated for two sessions. This time I decided not to try it again. I also was very proud of my short hair when it grew back and wasn't afraid to show it to everyone.
Sylvia, you are also so kind and sweet and have a great motherly look to all suffering from this disease. It sounds interesting you are busy with so many tasks in your daily life. Being busy is really healing if it has a positive attitude behind it. I think my father also saved his life from the advanced colon cancer five years ago by doing lots of gardening in the North and also being busy with so many tasks. I'm sorry to bother him and my mom by my disease especially the second time even though they were not my fault. Yet, they seem to get on well with it now.
Your studying so many books is also a great thing you do. My dad also does the same thing too. When you find out more about different areas of knowledge, the wisdom you gain can help you make the best decisions in your life. Sylvia, you are a great model for me to follow. I hope I also achieve healing, too. These days, I search YouTube a lot to hear the words of those who were healed of cancer. Some of them never did the conventional treatment and were able to restore their health back again. But this needs a great courage.
Kat, your pictures are so lovely. I'm really happy that you seem to have a good time there. Always be happy, healthy and travelling.
This is a picture of me, my mother and my sister today.
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Hello Kath,
Thank you for your post. It sounds as though you had a very enjoyable holiday.
As for squeezing that red area on the skin near the corner of your right eye, if you have concerns it is prudent to show it to your GP and explain that you have squeezed it.
I think fear is probably with everyone that has had a breast cancer diagnosis, but we still have to manage to live normally as much as we can. Fear and worry only make things worse and elevate our stress levels.
We have to make the most of every day and enjoy it as much as we can. In life there are no guarantees.
I do hope all will be fine when you go back to work. You are doing a very useful job and being busy will take your mind off aches and pains and any other problems.
Thank you for the photographs. You look like you enjoyed your holiday.
Keep in touch.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post and for your kind words.
I do hope that one day you will be able to live nearer to nature as you so desire.
Thank you for the photograph of you, your sister and mother. You all look very happy.
I think it is good to keep busy as long as you enjoy doing the things that are keeping you busy. What you do not want is to feel stressed as that will affect the working of your whole body.
I have a very enquiring mind and will always look for information about everything that comes to my attention. I still do and shall always continue to do a lot of research on good nutrition and how to use it to keep my body healthy. The more I read the more I feel that cancer, and that includes breast cancer, could be a disease of deficiency in vitamins and minerals. Because of these deficiencies our whole endocrine system has gone astray and we end up with malfunction and inflammation leading to chronic diseases, such as cancer. I believe we have to make sure we stay away from processed foods which have lost most of their nutritional value. I recently read that since 1950 the minerals in the soil have lost 80% of their nutritional value, due to modern farming methods.
I am glad that you think I am a model to follow. I just try to help and am concerned especially about young women like you with this nasty disease when they have all their life in front of them.
I am sure there are people out there who have survived cancer without orthodox treatment. You have to be very courageous to do this.
What is happening about your genetic testing?
Keep happy.
Love.
Sylvia xxxx
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you are an incredible person Sylvia
Your words have the ability to calm people so much! Thank
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Hi Sylvia,
I'm glad you reminded me of lentils, I cooked some and I can tolerate those better than some of the beans. Pinto beans really bother me, which is what I had on hand last time I cooked beans.
As to the iodine drops: if I take the dose directed on the bottle label, it is 1800 mcg. daily. I know the recommended dosage is 150 mcg. so that seemed excessive to me, and you say so too. I think the government recommendations are usually not high enough, so somewhere on the low side of middle is probably better. It's not too scientific, but I will go easy with the drops.
I have been quite down over the weekend, my legs are really bothering me, and I am very unsure of what to do next. I am supposed to see the orthopedic doc tomorrow as a follow-up on the shot he gave me, he seems to think all my problems are because of the arthritis in the knee. I am not so sure, I hope I can get some information from him about the upper leg problem with the quadricep where it connects to the knee. It is really affecting my mobility. Wish me luck.
I have had the varicose veins for most of my adult life, I suppose definitely genetic. I developed some bulging veins in my 30s. The treatment given here is varied, it is paid for by insurance so many people do get it. It is a combination of laser and injections, the second time I went it was only injection. There are also docs who do it more surgically, and actually remove the veins. As you said, the veins can recur. I never had any swelling in that area before I had the chemo treatment, it does occur at times now but probably not enough for anyone except me and my acupuncture doc to notice. As I have said before, in my opinion any weakness one has going into chemotherapy will be further weakened by the treatment.
I will go for the breast MRI later this morning, fingers crossed there too.
As to the "staining" at the bottom of your legs, my husband had that and it was brushed off by his docs. They said it was because of his vein issues, and they never seemed very concerned about it. He would get frequent severe edema in legs and around lungs because of the congestive heart disease. Have you asked your docs about the discoloration? It can have different causes apparently.
It sounds as if your health food store is large, and has a really good selection. I have to drive a couple of hours to get to a store like that. Here I have to travel to several different markets to find the things I want. I suppose I could order things online and have it all delivered, maybe!
I'm sorry my post is rather downhearted, I am hoping for things to get more cheery when the sun returns, we have had another cold weekend with snow flurries.
I'll talk to you again soon, love, Mary
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Sylvia,
About the link I posted, I know it's about testing with mice and drugs, I think what interests me is that they are doing so many studies in these areas.
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Hello Kath,
Thank you for your kind words. Keep looking forward and deal with things as they arise.
Keep well and keep in touch.
Love.
Sylvia xxxx
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