Calling all triple negative breast cancer patients in the UK
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Hey, Rhonda,
You might as well shave it. I went to the salon I usually went to, she didn't charge me, but just shaved it off. It was a relief. What I was not prepared for was losing the eyebrows and eyelashes. But there is probably a program at your cancer care clinic or hospital called "Look good, feel better." They will show you how to put on makeup to disguise this somewhat. I didn't go, because it was a half-hour drive and I didn't usually feel like going there any more than I had to. But it should be available. They will probably also give you a wig there, and they have some nice ones.
Talk soon, Mary
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just had my bloods done pre Chen and ALT slightly raised for the first time. Scared the hell out of me but I did have a massage at 839 before bloods at 9. Muscle trauma can cause a rise
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Hello Rhonda,
I am just popping in to say that I am thinking of you as you go through the trauma of hair loss. It is up to you how you deal with this, but I let my hair fall out naturally and it was chin length. It fell out pretty quickly and I just let it do this. I mainly found it on my pillow in the morning! It is very upsetting but I would not have shaved it off. I always had a little stubble of hair and I think that helped it to grow back. For my second session of chemotherapy I was wearing my wig. I found I was completely at ease with my wig and people close to me thought I had not lost my hair!!! Indoors and at night I used to wear a very smart ready made turban. Everything seems pretty draughty with no hair.
The only way to avoid hair loss is to discuss ice caps with your oncologist before treatment. Some patients do go for this. I asked about it, but my oncologist was dead against it for fear of infection. Remember, that was back in 2005 and in the UK.
Keep your scalp well moisturised while you are bald. It can get very dry. I put avocado oil
over it before shampooing with a very gentle shampoo.
Sending you very best wishes.
Sylvia xxxx
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Hello Kath,
Try to relax and stop worrying. I hope all is OK for you to start Taxol on Thursday. You can do this. Remember, we have all been there and got through it.
Very best wishes.
Sylvia xxxx
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Hello Mary,
I was sorry to read that you had lost your post after doing a long one. That is very frustrating and tiring. Take your time doing another one. If you type your post on the thread, it cannot seem to cope with long posts. It is probably better to type a little bit, submit it and then do another short one and so on. There is a way of typing in a word processor and then copy and paste into the thread. I find it a bit complicated, but it does work and it also means that if you are answering someone's post, you can have it in front of you. I am not that computer savvy but my husband is and if needed he puts it into the word processor for me.
I am very impressed with the nutrition information of Dr Axe. Most of it I think we know, but it is useful to have those simple lists. They are easy to follow and all you really need to remember is to eat a varied diet. The sheet on 10 Health Foods you should Never Eat is particularly useful.
I hope you have a good week. Talk to you soon.
Fond thoughts.
Sylvia xxxx
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Hello gmmiph,
Thank you for your post. I agree with you about the raw turmeric and I am going to buy some in a local fruit and vegetable shop here. I shall probably just put it in with some vegetables, but shall try it in a blender with other vegetables. I am not keen on juicing fruit, as it concentrates the sugar content. I do not use a juicer, either. I use a blender and only blend occasionally. Blending keeps all the pulp, so nothing is wasted.
Thank you very much for your information about coconuts. I shall remember to drink my coconut water before breakfast. It is probably refreshing and cleansing.
I was most interested in the fact that you mentioned guyabano. I am sure that is what we call soursop in English and it does have a reputation for being anti-cancer. Someone I met who had lived all his life in tropical islands told me about soursop, but I have never seen it in the natural food stores where I live.
I was most interested in what your friend was eating to rid herself of her tumour. It all sounded very healthy and eating green leafy vegetables is highly recommended here. I am going to make a note of the vegetables you mentioned that are unknown to me. I think we in the west have a lot to learn from the foods of other countries. Some of those you mentioned could become known here in the west and the next thing you know they are the flavour of the month. Of course, orthodox medicine would just say that your friend had instantaneous remission.
As you say, all our breast cancers are individual so we cannot say that one size fits all. I think a lot depends, also, on the state of our health and body at diagnosis. Why I survived after being given a poor prognosis, based entirely on the fact that I had triple negative receptors, will always remain a mystery. All I can say is that I did apply alternative treatments and I did have homoeopathy, but I was still advised to accompany this with orthodox treatment. My gut feeling is I would not have survived without it.
Do not have any regrets about your past decisions. I can see from your details that you delayed your surgery for quite a long time after diagnosis – over seven months. I delayed my treatment for nearly five months after diagnosis. I then had chemotherapy before surgery. I think the alternative treatments I was using may have stopped the tumour from spreading but I took a big chance. The tumour actually broke through the skin of my breast and that was not nice. The alternative doctor told me that she had patients who would not accept orthodox treatment for various reasons and that she treated them but it was difficult. Tumours that are not removed fungate, which means they become hard and do not smell very nice.
We all have to make a choice. My orthodox doctors kept an eye on me and let me decide on my own about treatment. Once I decided I went in to treatment with a clear mind, gave everything my all, and had no regrets. The most difficult part was the hair loss and being in hospital for five days when I had a mastectomy.
Keep in touch and let me know what you decide with your oncologist and keep up your excellent nutrition all through treatment.
I see were both diagnosed with IDC, TNBC, and have had a mastectomy of the right breast. I also had one node affected, but I had a much larger tumour, 6+ cms which appeared to come from nowhere.
Take care. Very best wishes.
Sylvia xxxx
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Hello gmmiph again,
Thank you for your previous post before the last one. Thank you for more information about your beautiful country. I can already imagine people on this thread heading for the nearest airport.
I do not know what to say about the Nutren Optimum that you are taking. I know we have something here called Complan, which is in powder form, and another called Ensure that is ready made. I have a friend of 89 who has been diagnosed with shingles, has no appetite and is taking Complan. It does have a lot of sugar in it I would think. It is probably there to give energy. I do know that these products are given to the elderly, but they are also given to patients with metastatic cancer and have a condition called cachexia (wasting syndrome) in which the cancer is taking its toll on them and causing massive weight loss. My brother, who died from cancer back in 1995 at age 56, was given this. He was a very healthy person who suddenly became unwell. He was diagnosed with disseminated adenocarcinoma that had spread to the liver and pancreas. He died just five weeks after diagnosis. The death certificate said that the primary cancer was unknown. I tend to think it was bowel cancer. I remember him having Complan and Ensure.
Of course, this is not your case.
Avocados are said to be a very healthy food and high in calories. If you have them near you, why not try some of them? You can just cut them in half, take out the big stone and spoon them out, or you can blend them with something else. You could also eat healthy nuts, such as walnuts, almonds, and Brazils. If you want, you could grind these up and eat them with healthy yoghurt.
I do hope all will go well with your scans and that you will have a good conversation with your oncologist about potential treatment. I do not know anything about eosinophil.
I think that white blood cells are elevated when there is infection in the body. We are not doctors on the thread and it is wise to discuss things like this with your doctors. It could be, I would think, that your white blood cells are elevated because of the breast cancer. Again, this should be discussed with your doctor and not researched on the internet, which can be problematic.
I think those of us who have looked at Dr Axe appreciate the simplicity of some of his information. It is straightforward and not sensationalistic. I have printed off the following sheets:
12 Cancer fighting foods you should eat every day.
Top 15 anti-inflammatory foods.
Do you eat fermented food yet?
10 Heath foods you should never eat.
Top 10 calcium rich foods.
They are good references.
That is all for today.
Fond thoughts.
Sylvia xxxx
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hey maryna8, the same thing happened to me, all my long tedious post went poof in a second. now i have to do it all over again. bummer! next time guys!
hugs to all of you especially to Sylvia!
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Hi, Sylvia, and all here,
I am going to try again to get Day 2 in here. And it was my fault I lost the previous post, I use a regular keyboard and accidentally hit F12 key instead of Backspace. Presto, all gone!
Saturday morning,October 15. We attended the presentation of Dr. Joe Mercola. He is rather a rock-star in the natural health world. He walked onto the stage wearing a pair of large orange-tinted glasses. He explained that he always wears them when he is in artificial light for extended periods of time. The blue light is harmful to eyes in these cases, he says. He also recommends them for people who sit at computers in artificial light, or who are using cell phones, tablets, etc. at night before bed. He said the blue light of these electronics disturb the natural sleep patterns, and the production of melatonin. He first said the glasses were very expensive, then laughed and said we could get them on Amazon for about $8. He does not approve of the LED bulbs, but has a stockpile of the old incandescent bulbs which he uses. I suppose the light is more like natural light.
Observation: A doctor who spoke the next day said incandescent bulbs are not good, and we should use LED bulbs. I say.......Let there be light!!
Dr. Mercola is a proponent of a ketogenic diet, as well. This subject came up before on Day 1, it is a no sugar, low-carbs less than 40 gms., and no starchy vegetables. It includes unlimited green vegetables, no grains, limited fruit, low to moderate protein, and fats are very important to this diet. He believes cancer is a metabolic disease, and not caused by genes. He has written books, and also recommended many books. One was "Tripping Over the Truth" by Travis Christofferson about this subject. He believes there are benefits from intermittent fasting. He says one way to do it is to have no food 3 hours before bed and do not eat again for 13-18 hours. Eat for 6-11 hours throughout the day. He has a book coming out "The Complete Guide to Fasting". Good fats are avocados, coconut oil, raw cacao butter, nuts, seeds, pastured animal butter, tallow, lard. DHA is very important. Eat seafood, not supplements. (easy for him to say, he lives in Florida!) He touts Alaskan salmon, mackerel, sardines, anchovies, and roe. Avoid most shrimp, unless you know where it's caught and it's very fresh.
Observation: All of the doctors I saw, to a man, (or woman), were very thin, with a few of them being also very muscular. Their spouses were also thin as rails, so they obviously follow their own diets. We were also told that most of them never ate in the restaurants of the hotels, they went to the local Whole Foods store and purchased enough food to last them over the weekend, since most of them did stay for the whole weekend. Dr. Joe said he would often go to his room and have a lunch of sardines and avocado.
Dr. Mercola is also a proponent of natural light for Vitamin D production. (once again, he lives in Florida the Sunshine State!) He runs barefoot on the beach every day, and does not take D in supplement form, but says for we who live in cloudier climates it's better than nothing. He thinks everyone should have a full spectrum Infrared Sauna, but since they cost about $3000 he agreed they were pricey. He blasted fluoride in the water supply, I believe that has been outlawed in much of Europe, we are often behind the times in our toxin dispersal systems. He believes in movement, doesn't have to be running, or high impact. Just a lot of body movement every day.
Observation: My own story, I was a grazer as far as eating, did not like to eat late dinners, moved constantly. Most days I did not sit down until evening, loved to walk, walk, walk. I liked lots of fruits and vegetables and salads, was not overweight and took my vitamins. I got cancer anyway. Just an observation, means nothing, I suppose.
Closing for now, will pop back on in a bit.
Mary
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Adagio,
Thank you so much for your condolences on the loss of my kitty, Rascal. I find myself looking for her so often, and then surprise myself when I realize again that she is gone. She was with us for 21 years, and had her same favorite hanging-out places for most of that time. Sorry about the loss of your pet too, this is the first time in about 35 years I have not had one or more animals around me.
A very good pic of you and your husband in Brisbane, you look so happy! And healthy. Wishing you continued happy travels!
Talk soon, Mary
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Hi Sylvia , Mary and all
Sorry for my delay in response . I miss you all here but unfortunately my hectic life doesn't let me keep up with the posts. However , tonight I decided to to spend some time alone in my bedroom posting here while listening to music . I really needed to be alone by myself . Thankfully , my husband and daughter are such sweet people who have always understood me.
My life is as always full of routines : housework, teaching , observation , studying, helping my daughter with her lessons, jogging and etc.
Yet, there is a strange headache(mainly a feeling of pressure in head) that bothers me nearly every day and sometimes scares me out of my mind. I have done a blood test and the results were normal except a little high cholesterol . I have seen some doctors and as I had an MRI about seven months ago, dont consider having another brain scan necessary . They all think it's out of anxiety . But I really don't know where this anxiety is. All around me think I'm happier than anyone who has not been through such an experience . I'm leading a normal life trying to be organised , successful and having lots of plans and wishes for my future . Yet , it seems my unconscious or even subconscious mind are not with me, still dealing with fears.
I really don't know what I can do . I have the least inclination to see a psychologist or a psychiatric. If only I could be a 34-year-old scare-free person.
4everstrong , you made my day when I realized you are OK and cancerfree .
Lots of love
Hanieh
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hi sylvia, mary and all,
today is the day i go back to my mo with all the lab results. i am really really nervous about what she would say. my bone scan and 2d echo look ok but i am really worried about my ct scan and blood tests because they both seem to show funny results which i really dont understand. at this point, prayers seem to be my only weapon against my problems and worries. i really believe in group prayers being more effective than individual. so let's all try to pray for all of us to be delivered safely from our afflictions.
be back soon after my mo appointment.
take care,
gmmiph
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Hi gmmiph
My deepest thoughts and prayers are sent to you for the best results .
Love
Hanieh
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Gmmph,
My thoughts and prayers are with you, I pray for all of us to have abundant health and joy in our lives. And only good news for you right now!
Talk again soon, Mary
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Hi, Hanieh,
it does sound like your life is very good now, you are busy and needed. You have a lovely caring family, and some time occasionally to be alone. As for the pressure in your head, is it a physical pressure? Such as I have right now, which is allergies and my face and head feel tight and full and achy, very unpleasant. Or is it a worry or slight depression? That is understandable, after what you have been through. I think with a lot of us who have been through what we have, it is almost as if we are afraid to be happy, because we know that something else may happen at any time. If it is physical, could it be something like a chronic sinus problem, or ear problem? If not physical, perhaps you do need to talk to someone about it. Our families, no matter how loving and caring, want us to be better, they want the cancer to be behind us. So I think sometimes we don't tell them all our fears and worries, because we don't want to worry them. Then it is nice to talk to someone outside. Finding someone good is another story. To find a professional counselor you are simpatico with is not easy. I have been briefly to two of them over the last couple of years, but didn't think it was getting anywhere. I have been a few times to a cancer support group, and I find it is mostly for the people there who are actively going through treatment. That can also be rewarding, we are there to support them for the most part, but also to find camaraderie in the company of others. Do you have something like that available? You may meet some people you can talk to and go out for a cup of coffee or tea.
Let us know what happens, you have been having this problem for quite a while. I miss seeing you on the thread but I am glad you are so busy and your life is full.
Talk to you soon,
Love, Mary
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Hello to all,
Continuing Day 2 at Conference:
We listened to Mike Adams talk about "Biosludged". Briefly, it was a horrifying tale of how some cities are taking their toxic wastes, mixing them into a cocktail of sorts, bagging it up and giving it to farmers in some areas. The farmers accept this free "fertilizer", and spread it on their fields and pastures, not realizing what exactly is in this stuff. I did not take detailed notes on this, so cannot tell you exact ingredients but it is cleverly packaged and one has to read the very fine print to know anything about what it contains. Scary stuff!
After lunch we listened to Ocean Robbins. He is a public speaker, and co-founder of Food Revolution Network. He has a very interesting back story, his grandfather was one of the founders of the Baskin-Robbins ice cream shops. His father John, was in line to step into the leadership of the business in his 20s, but had come to realize that ice cream was not the healthiest thing to be pushing on people. So he stepped away, and moved his family to an isolated cabin off the coast of Canada, where Ocean grew up. He grew up eating vegetarian diet, and now travels around speaking on Food Revolution, and the problems with eating meat for one thing. He is a very good speaker, and a very emotive speaker. I found myself in tears a few times during his speech, he comes across as a very caring, intuitive person very capable of touching an audience and has a very warm presence. I found out later he has 2 autistic children, he did not bring up that subject.
Then there was a Round Table Discussion. 8 of the docs sat on stage and took questions from the audience. Dr. Joe, Dr. Axe, Ocean, Dr. Quillan, Mike Adams and 3 more. There was much talk about the emotional component of illness. Emotional conflict and constant stress can cause illness, we need to have forgiveness in our lives, for ourselves and others. Dr. Menendez said we should write a letter to someone we are angry with, say everything we want to say, and then rip it up and burn it. We should give thanks for what we do have, see the glass half-full. Meditation at least 20 minutes a day, very beneficial. Dr. Axe talked some more about the Health of the Microbiome of the gut, so important. Someone asked this question: she had breast cancer, was treated, and now is in the position of wondering if there is anything growing in her body that she doesn't know about. Apparently there are tests that aren't commonly done. OncoBlot, RGCC, (an expensive test that deals with circulating stem cells, and tries to predict probability of cancer relapse), Electrodermal Screening and Thermography. They also talked again about the benefits of cannabis, and its' many properties.
We had another break and then listened to Dr. Galina Migalko MD talk about Thermography, Ultrasound, 3D Bio-Electro Scanning and other Diagnostic Modalities. (Whew!) This was interesting, lots of video and slides. This doc travels around the world doing scans and speaking. She does not use radiation in her testing, only in very rare cases. She talked of the superiority of the results of, for instance, thermography (which uses heat) and ultrasound instead of mammograms. She does 3D Full-Body Bio-Electric Scans for people, which she recommends for anyone who wants to know what is going on inside. Also Medical Diagnostic Non-Invasive Blood Analysis. Website for her: universalmedicalimaging.com She also talked about the total picture: emotional, spiritual, stress reduction, hydration, diet, supplements detox, exercise (rebounding), no mammograms, thermography and ultrasound instead.
Note: 2 days after I returned from my trip, I was slated for my annual mammogram. I went for it, since it was so imminent, and I talked to the technician about thermography. She said in her opinion, thermography was very undependable and the mammogram was very superior. I told her that mammogram did not see my tumor 2 months before I found it, she said that happens sometimes. I had my remaining breast zapped again, and once again left with the question, who to believe??
Next we listened to Dr. Rashid Buttar. He is one of the muscular docs. He spoke on the 3 Foundations for health. Systemic detox, immune modulation, and physiological optimization (exercise!) He believes that we all have many toxicities in our bodies that have to be removed. He has a clinic and has written several books, "9 steps to Keep the doctor away" is, I think, the latest. I do not have many notes for him, but he seems a very interesting doc who works with all kinds of people, including children.
That brought Day 2 to an end for us, we were once again quite saturated with info and ready for the evening off. Also quite inspired by all we had heard, we were really having a great time.
Talk again soon, Mary
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Sylvia, Hanieh, gmmph, and all,
I have my 6-month checkup with MO today! I didn't sleep well last night, need to sit down, gather thoughts and write down some questions for her.
Wish me luck!
Mary
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gmmiph...thinking about you today and sending prayers that you hear the best of news. ❤️
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Hi Mary ,
Thank you so much for your kind words . My deepest thoughts and prayers are with you . I can't wait to hear your good news.
Today , I visited my Gp and he,upon sering my blood tesr,believed it could be due to lack of vitamin A in my blood. He prescribed some multivitamin and propranolol as well as a spray that could deal with a probable sinus problem . I wish they work for me.
Mary , you , Sylvia and all are such great people that I would never want to miss .
Here we all share our good news and probable problems . We pray for each other and get thrilled when we see our prayers are answered.
Waiting to hear your great news of health and thanks alot for sharing all the valuable information in the conferences you are attending.
Lots of love
Hanieh
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Hello Mary,
With reference to Dr Joe Mercola, I get the impression that nobody seems to agree on what light bulbs we should be using. Warm white LED lights should be alright, because they mimic regular incandescent lights that we have had for over 100 years. As for most things, we just have to make up our own minds.
It is the same for diet and nutrition. We all have to make up our own minds. I think the main thing is to have everything in moderation. Life is risky and we never know when we are going to die.
My own observation is about the same as your in all of this. I had a reputation for eating healthily and had never been ill until I was nearly 63 and was diagnosed with this triple negative breast cancer. My friends and acquaintances all said I was the last person they would have expected to have had cancer, but I had it!!!
There are so many risk factors, outside of nutrition and exercise, that can all add up.
Thank you for that detailed post.
Love.
Sylvia xxxx
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Hello Hanieh,
It was nice to hear from you. I was glad to know you had decided to have some quiet time to yourself with some music and to come and say hello to your friends. I was glad to know, too, that you have a husband and daughter who understand it. You must try to have some more "me" time and to slow down a bit. It is not that long ago since you were diagnosed with breast cancer, went through treatment and had various problems post-treatment. I think you might be overdoing things and that stress and anxiety may be at the root of your problems. I read, some time ago, profiles of the type of people who diagnosed with cancer. They are usually nice, selfless people who are always trying to please others and do not think of themselves enough. These people have to learn to put themselves first sometimes and to stop trying to please everyone all the time.
I have been thinking about this quite a bit lately as my days are busy as well with one thing or another and I end up not having enough time to do the things that I really love, especially keeping up with French and English literature, reading about current affairs and generally just sitting quietly thinking. I am trying to change this but am not being very successful. I am trying to walk quietly around the grounds of the apartment complex where I live and just concentrate on the beauty of nature.
I think you are doing too much. Give yourself time.
Love.
Sylvia xxxx
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Hello gmmiph,
I do hope you had good lab results today.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for the second post. I do not know how you managed to take all that information in. I know that in the UK we are really behind the times with cancer treatment. We have outdated radiotherapy machines that they are slowly replacing, but treatment will continue with the old machines which make up 50% of the whole pool. We are years away from proton beam therapy. All the talk is of cuts. They say they will cut back on chemotherapy for a lot of patients. I do not know how the National Health will survive. We are being told that two billion pounds a year is being spent on many treatments that are not necessary and are not useful.
When will you get the result of your mammogram?
My oncologist also told me that thermography was not reliable when I asked about it.
Thank you for all the hard work you have gone through to post all the information about the symposium.
I am cynical enough to believe that behind everything that is going on the main motive is to make money on people's fear.
Once again, thank you for all your help with the thread.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am just popping in to say I hope all goes well with your MO today. I can understand you had trouble sleeping the night before. I do hope you wrote down some good questions to ask.
Very best wishes.
Sylvia xxxx
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Hello Cathytoo,
I have been reading your posts on Calling all TNs as well as on your thread about low vitamin D3. The news about low vitamin D levels and development of cancer has been in the news for quite some time. I have read that vitamin D is more of a hormone than a vitamin. I have also read that in more northern countries there is a lot of deficiency in people. I do hope that the high dose pills that you have been prescribed will bring your levels up to par.
You get vitamin D mainly from sunshine on the skin and the advent of sunblock has made the deficiency worse. It was wrong, apparently, to tell people to stay out of the sun. in the summer we should get some sunshine on our skin for about 20 minutes between 11 am and 2 pm. Do not stay too long and definitely not long enough to burn. During three seasons of the year, in cool countries, you need to take vitamin D supplements. Vitamin D is not easy to get through food.
I have been taking 4,000 to 5,000 IU Solgar soft gel vitamin D capsules for many years, in fact since 2005 when I was diagnosed with TNBC when I was nearly 63. Vitamin D is also essential for healthy bones and to prevent osteoporosis. You can get a DEXA scan to test for osteoporosis.
I do hope you will soon see some improvement with your vitamin D level.
Wishing you all the very best.
Sylvia xxxx
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Checking in, keeping thread going i hope.Having trouble after mild stroke. Taste buds have disappeared suddenly. But I'vehealed fast and quick (didn't seem like it at the time) from really bad rad burns. And from mild stroke. Immersed in my hobby of doll selling and collecting.
I guess all the long term side effects are showing up. My cancer center as a survivor ship class for when you are done with chemo, rads etc, it was very helpful.
I guess I want to be back to as I was a year ago and that is not happening. So I have to learn to deal with the lack of energy, fatigue, aches and pains after doing what I consider normal things. Yes I work out, and almost stumble to my couch afterwards. I am thinking less and less about recurrence. Partially due to all the scans I've had that you would normally not get. So I'm grateful for the all clear. Just wish I felt better. Thanks for letting me vent.
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Hello Sylvia, Mary, Hanieh, Cathytoo and all,
First of all, I want to thank all of you for your prayers and good wishes. It really touches my heart to know that in many parts of the world, there are abundant expressions of genuine care and concern about me, as well as for others, from people you haven't even met. I do believe that our universal God really has ways to put people together, for them to realize his power (be it thru his blessings or thru afflictions), for all of us to be humble and realize that we are mere mortals who need his Divine Providence and that really, "No man is an island". I thank you all for the friendship, the common bond we share, the exchange of knowledge, and for those unseen smiles and feelings of comfort that we have, knowing that we do care for each other, somehow, in our own little ways. I am deeply praying for all of us to get thru all our problems, not just the physical, but the emotional and spiritual as well. Let's continue to use the power of Group Prayers for our deliverance. Thank you.
Secondly, I see that this thread is really burning with posts. Information, well wishers, experiences, etc. I have to apologize in advance, if I missed somebody or was unable to reply/comment on your posts. As I said before, I am a sloooow reader. I wish there is a chemo drug that would have a brain-enhancing side effect. haha. I'll try to go over all the previous posts and make my comment if I can and also try to research on some of the infos given, especially from Sylvia and Mary. These two sweet angels are so full of energy and so wise and knowledgeable. A true source of inspiration and hope for all of us. I see Cathytoo also being very active in the other TNBC thread.
Speaking of chemo drugs, my MO finally gave her "verdict". I was sentenced to 6 rounds of FEC for illegal possession of breast cancer. Yes, I can still take it lightly, coz I'm not on chemo yet. Haha. My MO says it is the most appropriate treatment at the moment, considering my early breast cancer stage and cost-wise. Next week, after Halloween, Nov. 3. will be the first session. Why did my MO give me this? Well, my CT scan showed a subcentimeter non-calcified nodule in the right lower lobe of my lung measuring 0.4 x 0.5 cm. and a small nodular density in the right upper lobe, although still undistinguishable yet. I also got an enhancing lesion in the liver, measuring 0.5 x 0.8cm in hepatic segment V and a hypodense focus in segment VII measuring 0.3 x 0.c cm, whatever and wherever those may be. At any rate, my MO seems so confident that the FEC will cure all of these mysterious nodules etc. I began to do a little research afterwards and found a clinical research entitled "Systemic treatment for Triple Negative Breast Cancer - NCBI" done in 2014 (www.ncb.nlm.nih.gov, by BS Yadav) which says FEC is effective against TNBC and has a 56% 7-year DFS (disease-free survival rate). That's good enough for me. However, that research also says that if FEC is combined with Paclitaxel, the DFS would achieve an even higher rate at 74%. I'm keeping this info to myself for the first two FEC sessions, to give a chance for the MO's recommended regimen, but based on my blood counts (which my MO says will be taken periodically after each treatment) I will discuss this clinical research with her and suggest the Paclitaxel addition. My MO's planned regimen for me is 6 sessions of FEC every 21 days. The clinical research with a better DFS says only 4 sessions of FEC every 21 days and 8 weekly sessions of Paclitaxel.
Ok, my post is long already and I wouldn't want it to get accidentally deleted like the last tedious post I made. So, I am submitting this post right now and do another one soon.
Keep in touch everyone, God Bless!
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Hello all,
I'm back.
Hanieh, I read your post about you having a pesky headache. I am sure you already got tons of advice from others here, but I have a feeling it's a migraine due to your hectic daily routine and worries. I'm sure all of us have our own fear of cancer and its recurrence embedded in the back of our minds and it is not easy to remove that, especially after what we have all gone thru or still going thru. Since migraine is a mysterious thing, no medicine is recommended except maybe for aspirins approved by your MO. As Sylvia said, try to take it easy and do some meditations. And since your doc said that your headache may be due to lack of Vit A as seen in your blood test, then, it would be much simpler to follow his advice of vitamin intake and nasal spray. This is all I can say.
Cathytoo, I hope your doc's advice on Vitamin D intake works. I just wonder how much of it we can take without altering each of our systems. I am also very much interested in taking Vit. D myself but since I am scheduled for chemo, I might postpone the heavy doses and just take the natural sunshine 15 minutes 3 times a week to boost my system.
Valstim, I will pray for all your problems to go away. I believe in the power of group prayers especially if we are praying for a common cause, and that is to be completely healed from our diseases. Do post here often, to release your tension and stress as well as to catch additional info about our ailments. I find this thread really helpful. Take care friend.
Mary, I am praying that your 6-month checkup will be fine. I wish all of us would have NED. Thank you for your long informative posts about the symposium you attended. I really find it interesting and a good source of research materials. The last time I was trying to post, it got deleted. I was saying then that Dr. Axe is really a hunk and that if ever he comes to the Philippines, I will give him that great big hug for you, give him a peck on the cheek for Sylvia and then a long hot French kiss for myself. Fair enough? Hahaha. A funny mixup also happened, I gave Sylvia an article about 12 cancer-fighting ingredients and thought it was from drake.com. I just randomly searched for it on the net and found it interesting. Then you sent me a post mentioning about Dr. Axe, which puzzled me a bit. Why did you suddenly give me that post about somebody I didn't know. And then I noticed, I read it wrong. The article I gave to Sylvia was from draxe.com, not drake.com... hahaha. This confirms my claim, I am a slooow reader with a chemo brain minus the drugs. This emboldens me to undergo treatment in the hope that the chemo drugs would do some good on my chemo brain. : ) And thanks for expressing interest in my country. I hope you can visit.
Sylvia, now that I am about to go the chemo way, I look at you as my inspiration. 11 years and 4 months is quite a feat for a cancer survivor. Lucky if I reach 5. I was hoping I would be given the same chemo regimen that you had but my MO doc is really confident about the FEC for my case. I would give it a try for the first 2 or 3 sessions and then evaluate whether to continue or not. I read that Paclitaxel does well after FEC too. No pre-chemo med was recommended. She says to deal with the side effects as it happens and then plan the next moves. Thank you for your wonderful posts. I would try to send you some info on the local green veggies that my officemate used to cure her tumor.
This is all for now folks, talk to you again...
gmmiph
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I've been taking 3000 units of vitamin D3 and my level is 114. Is that sufficient or should I increase. Very difficult for me to get though sunshine even tho I live in Australia because I have very fair skin and burn easuly
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Hi, Sylvia,
I was reading your response to Hanieh about taking more time for herself. I read the same thing you did a year or two ago. "The nicest people get cancer, the ones who worry about everyone else before themselves." When I get to Day 3 of the Conference, I will tell you about the first speaker's message to us, partly it was to be selfish, to practice self-love, to take care of ourselves. It is a hard thing to grasp, when we are probably all brought up to be selfless, to put others first. And there is a place for that too. But his message was if we don't take care of ourselves in this, OUR life, we will not be able to help others.
I saw the MO yesterday, my mammogram was normal. I told her that I didn't have a lot of faith in mammograms since that test did not pick up my cancer 3 months before I found my lump. I also told her I had had a Gyno visit a month before finding my lump, and she had felt nothing when she checked my breasts. The MO said she was going to order an MRI for me, since my breast(s) were so dense that apparently lumps didn't show on mammogram. It was rather an odd visit, the whole staff seemed very rushed and in a tizzy. We are having problems here as is your NIH. I think they are cramming so many patients in a day, that they have no time to spend with them.
I'm not sure how we soaked up all that info from the conference either, our heads would be spinning at the end of the day. But we were always ready to hear more the next day! My rear end did get very sore, not used to that much sitting, I would get up and stretch and we would walk whenever we had a break. I felt very well there, it was in a huge, climate-controlled hotel, we only went outside twice in 5 days. My allergy problems disappeared while there, when I got off the plane back here, my stuffy head was back in a couple of hours. Boo! The hotel had a huge glass atrium with a forest planted inside, so we didn't feel confined at all.
Going for acupuncture today, I do keep up my appointments there.
Talk to you soon, Mary
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