Calling all triple negative breast cancer patients in the UK
Comments
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hi Again Sylvia
I am still taking Xeloda but it causes low neutrophils so I have had a few extra weeks between. I have just started my fourth round and have been reduced to 3000mg per day. I also suffer from lots of tingling in limbs and extremities and my mouth gets numb but otherwise fine. I will continue till February. That should be the end of treatment for me. My radiation burns have healed and I am exercising along with massage to try and soften the scar tissue and mass. Lymphedema and scars be gone! My try some prosthesis soon!
Best regards to you all.
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Hi Mary,
I would think that you're very happy watching your early snowfall melt away. Maybe you'll be lucky and have a mild Autumn coming your way.
Mary Queen of Scots is perhaps one of the saddest stories in Scottish/UK history. Poor woman should have remained in Catholic France. There was absolutely no-one to advise her and after the murder of Darnley, no-one she could trust. We visited Holyrood and the room where Mary's private secretary, Rizzio, was stabbed - 56 times! The room was so small too.. As a somewhat ghoulish child I enjoyed the story with all the twists and turns and the truly awful end. No Catholic priest and an incompetent executioner, Queen Elizabeth1 must have known more about it than she ever admitted to.
Henry viii is thought to have remained a Catholic after the break with Rome and after announcing himself as Defender of the Faith. All very confusing as he executed so many others who kept the Catholic faith. A case of do as I say, not as I do.
Before chemotherapy on Thursday I was given a super anti-nausea pill which lasts for five days. So just felt nauseous for 24 hours and not ill at all. Very relieved and now only have one FEC treatment to go. My Oncologist visited me on the chemotherapy unit. She's very down to earth and friendly and had a long talk with my husband about the next phase of treatment, the dreaded T. She wanted him to know that I'll become very tired but that it was important that after resting for a day or two, I should carry on as normal, not just for physical reasons, but psychological ones. She has a PhD in this very subject. I'll have a longer appointment with the Oncologist on December 21st to discuss all the other things I have on my mind, including lymphoedema.
So many people missing in the California fires, after reading some of the terrifying escape stories in the newspapers it seems that many won't have survived.
Your brother is certainly determined to carry on as normal. Perhaps someone should hide the chainsaw though. My father-in-law had problems very similar to those you describe in your brother and was finally found to have a faulty heart valve. Hope your brother's health is sorted out very soon.
Love,
Gill X
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Hello Sylvia,
Thank you for your informative posts. I'm constantly surprised by how little research people do when they have cancer. I have a close friend who has just completed treatment for her TN breast cancer. An intelligent and generally well informed woman, she has refused to learn anything more about her cancer than what she's been told by her Surgeon and Oncologist. This means that I have to be careful about what I tell her about my cancer, which, because of it's rarity has no treatment pathway of its own and is treated in the same way as any other TN cancer. Hospice patients varied between being expert patients to those who trusted their doctors to do the best they could and went through the treatment as a process about which they knew very little. I suppose that some people are frightened by the facts and statistics while others feel that knowledge is empowering. I have the impression that my Oncologist is relieved that I've done so much research.
I had my surgery at the end of August, and my underarm is still numb, probably more due to the partial node clearance than the mastectomy. I've been offered reconstruction, but have decided to leave well alone as further surgery may trigger lymphoedema which I don't, as yet have any sign of.
You've given us a lot of information about lymphoedema. I think it's important to be reminded from time to time. I found myself carrying a heavy bag only the other day - so easy to forget.
Last Thursday's chemotherapy was much easier after my extra powerful anti-nausea tablet. My veins, never good, have disappeared. It took two goes at getting the cannula to work last time, and two painful attempts this time. I only have four treatments left and my Oncologist is a bit reluctant to fit a picc line but asked me to do some research over the weekend and let my oncology nurse know on Monday. The nurses on the chemotherapy unit also want a picc line as it's very difficult and time consuming for them.
Enjoy the weekend. Lovely sunny day here in Norfolk.
Love,
Gill X
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Hello HelenLouise,
Thank you for your latest post. Taking Xeloda does not sound easy and it is not good that it causes low neutrophils, so it is good that you are getting a bit more time in between to recover.
February must seem very far away at the moment, but if you can keep busy, try to live normally and do things that you enjoy, the end of your treatment will come before you even realise it.
I was glad to know that your radiation burns have healed and it is good that you are doing some exercise and massage.
Keep up the good work and try to keep in touch with us.
We have not heard from your fellow Australians, Kath and CocoonCat for some time, so I hope they are both well.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I know there are patients who seem to want to go through treatment without much information, but I think that is not a very good idea. I think that information is powerful and I think it probably gains respect from the medical teams dealing with us. If they do not like it, that is their problem. We have a right to be in control of our bodies of our bodies and to say yes or no to what they recommend. I think you are doing the right thing to be informed.
I would think that in today's world it must be very difficult not to be informed and I think it would be worse going through treatment and picking up on bits of information without having all the facts.
I was glad to read that your chemotherapy last Thursday was not too bad.
I know that having chemotherapy through a cannula can make it difficult as the treatment goes on and veins become difficult to find. I experienced a bit of that as I had all of my treatment through a cannula but I did manage to get through it all. All you can do is read up about the picc line and decide whether to have one installed or not. I know that these lines need to be kept very clean to avoid infection. With four treatments left and already having a vein problem I am wondering why your oncologist is a bit reluctant to fit one.
It will probably take quite a while for your underarm to become normal. Mine did become normal but I do not remember how long it took.
That is about all for now. Enjoy the weekend.
Love.
Sylvia xxxx
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Hello Gill, again,
I forgot to ask when you are starting paclitaxel (Taxol).
Try to go into this next stage of your treatment with a positive feeling. It should not be any different to other chemotherapy.
As you know, I do follow Chris Woollams of Cancer Active through his regular emails that you can join up to receive free. He not only gives information about cancer, but also has Health Watch, which also has information about a lot of the chronic illnesses. This latest email had a section on pancreatic cancer, which caught my attention, because in 1995 my brother died at age 56 from cancer that had spread to the liver and pancreas and we were told that the primary cancer was unknown. I found this a bit strange. I was reading an article about natural compounds that can fight pancreatic cancer and one of them was ginger. I was interested in this because I do have fresh ginger root in my diet and I know that it is an anti-inflammatory. Reading through this I noticed the following: "Ginger has been shown to be more potent than the drug Taxol against cancer cells. It should not be underestimated." Remember, I am not saying this, I am just quoting what I read. During my treatment I did drink a lot of ginger tea and put grated root ginger in it. I also, even now, regularly use fresh root ginger and often cook it with carrots or sweet potatoes.
If you are interested have a look at the Cancer Active website.
Best wishes.
Sylvia xxxx
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Hello everyone,
I hope to conclude the information on lymphoedema today, but I do urge you if you want to be an informed patient to obtain the book The Complete Guide to Breast Cancer – How to Feel Empowered and Take Control. The 24 chapters of this book can take you through your cancer journey.
Back to lymphoedema:
Treatment is in three ways. Massage, Compression and Surgery (MLD).
Massage involves a special technique called manual lymphatic drainage. This is done to slowly move the fluid from your swollen arm. "It must be done by a trained lymphoedema therapist. They may teach you to do MLD yourself."
Compression. This involves wearing a compression glove or sleeve for the rest of your life, which prevents further swelling. You can get these free on the NHS if you are in the UK.
Surgery. "New surgical techniques have recently been developed in Europe where lymph nodes from other areas in your body, such as your groin, are transplanted into your arm. These transplanted nodes are then able to help drain the fluid from your swollen arm. This operation may soon be available in the UK."
I must admit I was surprised when I read about this possible surgery. It got me wondering about removing nodes from the groin and putting them in the arm. It seems to me that, if you do this, you will then have damage to the lymph system in your groin and the risk of lymphoedema in your legs and stomach. It may not work in the arm. It all seems a bit risky to me and I would not want it. It makes me wonder what will happen next. Will they be tampering with the nodes in the neck. Shall we be getting into removal of nodes from dead people? What happens if you have lymphoedema in your chest area as a result of a lumpectomy?
This information came mainly from chapter 7 of the book I mentioned, which goes from page 75 to page 100. It is entitled Breast and Armpit Surgery and has lots of diagrams to help you with understanding.
This book is very helpful and easy to understand.
A book which dedicates itself entirely lymphoedema is Let's Talk Lymphoedema by Dr Peter Mortimer and Gemma Levine.
I was wondering if any of you have read either of these books.
Best wishes to all.
Sylvia xxxx
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Hello Sylvia,
I've just joined Chris Woollams of Cancer active. I too am interested in pancreatic cancer having just lost a friend to it. From diagnosis to end of life was just six months. His first symptom was a mass of small blood clots to his leg. The abdominal pain came later, so no warning to suggest pancreatic cancer. He was an officer in the Salvation Army - not allowed to smoke or drink and no family history. I always thought that pancreatic cancer was a primary tumour, spreading to the liver and other sites, but not from them. I might have got this wrong though.
I did know about the benefits of ginger and enjoyed ginger tea, butternut squash and ginger soup and so on. When I first met my Oncologist I gave her a list of my medication and supplements, just vitamin C and turmeric with black pepper. I was asked to stop the supplements until after chemotherapy. I can take them again once the treatment is complete.
I begin paxlitaxel on December 30th. Which will be a relief after FEC. Apparently, some people are exhausted by it and sleep far too much which makes the body very weak and takes much longer for it to get back to normal.
Like you, I'd be very worried about transplanting lymph nodes, especially from the groin. Lymphoedema in the legs is worse than in the arm and I see no reason why this wouldn't happen in many cases. I'm keen to avoid any unnecessary surgery, we can never be sure what damage could be done and general anaesthetic stays in the system for a very long time.
Take care,
Love,
Gill X
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Update on Zometa side effects. I did start to feel bone ache 5 or 6 days in. Started in my legs, then moved up into my back, so that I was wincing every time I moved. How do people with chronic backache manage!?! Anyway, day 8 and the aches are passing off.
Seeing my oncologist on Monday and, I think, the woman who is running the aspirin trial.
Susie
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Oh Susie,
Sorry to hear about the horrible bone pain. I don't know how people who are already plagued with backpain cope either. It sounds very bad if you winced every time you moved. Glad it's calming down now.
Keep warm and take things slowly for a while.
Love,
Gill X
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Hi Gill,
I wouldn't call it horrible, just that I'm not used to it. Didn't last long anyway and it's only once every six months. I'd have been far more annoyed by flu-like symptoms.
Susie
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Hi Susie,
You're right, a few days every six months isn't too bad at all. Like you, I'd much prefer that to flu-like symptoms. Your Oncologist might have some suggestions for next time.
I expect your picc line was removed after your first infusion of Zometa? I have to ask my oncology nurse for one to be fitted before my next chemotherapy session, my veins just don't work. There seems to be a lot of emphasis on the nuisance of a weekly hospital visit for flushing, which doesn't really worry me. I don't know anyone who had an infection via a picc either, another concern of the oncology nurse.
I'd be interested to know more about the aspirin trial, though I can't take aspirin myself. If the trial shows a strong connection between aspirin and non- recurrence, science may come up with aspirin that doesn't need to be taken orally.
Take care,
Gill X
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Hi Gill,
My PICC line was removed at my last chemo session back in August. They do the Zometa through a vein. There was never a hint of infection with the PICC line and I suspect that the risk is tiny. Getting it cleaned each week is a bit of a chore. I ended up going into the hospital to get it done when the district nurses repeatedly let me down, but I live quite near the hospital.
Are you coming up for your next chemo session? A friend has recently been diagnosed with cervical cancer and had her first chemo last week. Different drug to us, of course, and it made her wet herself! Oh, how I would like my consciousness tranferred into a nice android.
Susie
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Hi, Sylvia
As for the topical vaginal cream I mentioned, the oncologist didn't know, she said if I found such a cream and it didn't work, then next year she might approve a very small amount of topical estrogen. Not sure if I want that or not. She only wants to be consulted on cancer, she seems to have no interest in any of the other ravages of time and chemo. She directed me to the GP, he sent off my urine to be tested and it came back with a report of candida yeast. He prescribed me 5 pills, one every other day until gone. Sounds easy, but the first pill made me flushed and a little itchy the first night, and the next morning my nose was running like crazy. Not sure if there is a connection, I'll try one more and if it happens again I'm not sure I'm taking any more of it. I am going to start drinking my organic unsweetened cranberry juice, and whatever else I can find that can help this issue.
Speaking of Hanieh, I have my view of Iran from news reports, but also just from things Hanieh has said. She painted a picture of a place where women are repressed, the pollution is very bad, the politics are not popular with many of the people who have no voice. She and her family still see themselves as Persians, and do not like being under the sway of the Khomeini. She loved going to the North, as she called it, to a farm still owned by her family. I gather there are no jobs in the North for herself and her husband, or perhaps they would stay there.
She was trying to get to Turkey as a stepping-stone to get to Canada. She then hoped to bring the rest of her family there. At the same time, she is recovering from her second cancer treatment and trying to keep up with work, it sounded like a lot to take on.
I also saw Chris Woollams' post, I noticed one of the posts included a post from a woman who had survived 10 years from her TNBC diagnosis, you have that one beat! I think Chris would approve of your diet and the way you live.
As for telling my brother not to do so much work, I won't waste my time. My whole family is the same, we think we should be busy from dusk to dawn. I think that mindset came from my German grandmother and my parents too, if my grandmother caught me hiding somewhere with a book in the middle of the day, she would set me to work scrubbing the sidewalks or some such duty. I have gotten more relaxed about things, simply because I couldn't do as much after the cancer treatment, otherwise I would probably still be the same.
I have been reading your posts about lymphedema, very interesting. I think the surgery of transplanting lymph nodes sounds like a bad idea, because then the legs would very likely be affected. I had a friend who had this very problem, after having his prostate removed his legs would swell very large with lymphedema. He had no idea what to do, he said, and was so relieved when a home health nurse would stop by and give him massage and wrap his legs. When they were swollen he could only walk in his house, and not much.
I was not an educated cancer patient, I was rushed into everything so quickly it was only later when I had time to catch my breath that I learned more about the way things worked. Since my husband was also ill, I was also learning about heart disease, failing kidneys, and emphysema. He used to call me Dr. Mary.
My husband had knee surgery in 2013, it became infected and we had to do at-home antibiotics. The doc put in a PICC line to use, I would administer the drug and after every dose I would have to flush out the line. I think I would also flush it before each treatment. The line worked well, and we had no problems with it.
I shall close for now, but will be back later, hope you are having a peaceful Sunday!
Love, Mary
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Hi Susie,
Next chemo session is December 6th. My final dose of FEC. Can't believe how quickly the time is passing.
I'm not having radiotherapy, so I'll probably keep the picc line in for the first Zometa infusion and hope that my veins are in a better condition by the time the second infusion comes round six months later.
Hmm, hope your friend was still on the unit when her little accident happened. Awkward if she wasn't. We're told to drink a lot though and I often wonder if I'm going to make it home when I'm about halfway through the journey.
I've just looked up chemotherapy for cervical cancer and it seems that in some women it causes incontinence. I hadn't realised. Hope your friend's accident was a one off. That's one symptom that I'm very happy to have avoided. Always someone worse off.....
Gill X
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Hi, Gill
This month we watch one snowfall melt, and then another one comes right after. December looks like it will be mild however. I do like sleeping on these cold nights.
After reading about quite a few of these doomed queens, I don't know why any of them would really want to mess with the whole thing, I guess they are just thrust into it with no way out. Nobody could be trusted, and in Mary's case, not even her husband Darnley.
I was glad to see you only have one FEC to go, it seems from my vantage point that it has gone fast, but I'm sure it's different from where you sit! For me, I was not as tired on T as I was on the first 2 drugs, but yet it was the T that gave me the neuropathy for a going-away present. My hair started to grow again while I was on T, so that was good. So you will get to enjoy Christmas and then go with the T for the New Year. It sounds like you have educated and empathetic doctors, all to the good.
The authorities working with the wildfires in California think that many of the missing are perhaps somewhere with famlly members and just haven't checked in with them, I can only imagine it's mass confusion when a whole town is destroyed and people have scattered everywhere. Anyway, I hope that's the case. Still it's a huge tragedy, there are many fatalities.
I do hope my brother can find a cause for his problem, that would be good. I will see him today at a birthday party, and will check his progress.
I was also offered breast reconstruction, and my surgeon said it might help with the nervy, sometimes painful feelings under the arm. But I didn't do it either, it is a lengthy process and one has to be cared for because of the restrictions on lifting, stretching, etc.
My husband had knee surgery in 2013, it became infected and we had to do at-home antibiotics. The doc put in a PICC line to use, I would administer the drug and after every dose I would have to flush out the line. I think I would also flush it before each treatment. The line worked well, and we had no problems with it. (I copied this paragraph from my post to Sylvia above.) I think it would probably be a better method than sticking your poor veins over and over.
Glad you are looking at Chris Woollams posts, always interesting. Pancreatic cancer can be very bad, my aunt died of it a couple of years ago, she had complained of a stomach ache and suddenly, it seemed, she was at death's door. I also have a distant cousin with pancreatic cancer, but a different type; she has lived with it for many years, but I think it is a constant battle. Here is a very simplistic explanation I was given; the pancreas is like a sack, with a top and a bottom. If the tumor is on the opening at the top, it will be a very bad prognosis. If the tumor is on the bottom, it can be worked with, partially removed and treated.
My onco also suggested I stop all vitamins, he said they might actually protect the cancer cell.
I had better stop for now, duty calls. Glad you are carrying on well!
Love, Mary
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Hello Mary,
Thank you for your latest post. In all honesty I think your oncologist sounds somewhat narrow minded. Probably so much of what has happened to our body since cancer treatment is directly connected to that treatment. Each part of it, surgery, chemotherapy and radiotherapy, has been a trauma to our body and attacked it mercilessly, will probably be with us for the rest of our life.
I liked my oncologist very much and she was always direct with me when I asked questions. She told me without hesitation that the taxane drugs would have caused the neuropathy in my feet and that there was no cure. I know that she believed in her drugs and did not believe in alternatives. She did admit that the drugs were poison and told me she had to poison my body to get me to no evidence of disease. I never discussed with her anything I was taking of my own initiative.
I remember a conversation with her about my chemotherapy induced osteoporosis and she recommended bisphosphonates. I know they are poison too and I just said I would not be taking them, and that was the end of it.
As you know, I took homoeopathic and other alternative treatments during all of my cancer journey.
I found my breast cancer consultant surgeon more open minded. When I told her that I was not going to proceed with my treatment until I had pursued other avenues, she was quite alright about it and told me to come straight back if I changed my mind. She even referred me to the homoeopathic breast cancer consultant at the hospital in Bristol and I stayed with her for five years and took Iscador all that time, along with various powders at each stage of my treatment. Had I not had to wait quite a while for that appointment, I would probably have started my orthodox treatment earlier and I tell everyone I meet not to delay their treatment. That homoeopathic consultant told me I needed to have the orthodox treatment but that she would work with me throughout. She worked with the breast cancer consultant and sent her reports to her.
I also had that one consultation with a private nutritionist but I was already doing most of what she recommended.
As I have said before, right at the beginning of my cancer journey I discovered icon magazine (Cancer Active) at my hospital and have followed it ever since. Through that magazine I contacted a well known herbalist and he prescribed wormwood and astragalus. I stayed with him until I decided to start the orthodox treatment.
I think that wormwood (artemisinin) may be good for candida yeast, which I think indicates that good bacteria is being beaten back by bad and also caused by sugar.
I do hope your problem improves, but I do not like the sound of those pills. I think unsweetened cranberry juice will probably help, but even better would be fresh cranberries. I am buying a lot of them at the moment. They need very little cooking and I eat them with plain soy yoghurt.
I think often of Hanieh and really wonder what has happened to her. I shall post some more a bit later because I want to tell you about a really interesting documentary on Iran that took us right through the country. It was on TV5monde in French and really showed you different aspects of the country.
I shall write more later.
Love.
Sylvia xxxx
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Sylvia,
I wanted to say that I blame many things that affect me physically on my chemotherapy, my first MO told me he didn't think I had ever really recovered from the first dose, when I was given all 3 drugs together and didn't tolerate it.
Since I am almost 5 years away from diagnosis, I have not commented as much to people about it, because it even sounds to me like I'm making an excuse for not being able to participate in some activities to the extent I did before.
I did take the second pill of 5 last night that I was prescribed for candida in urine, and I had no adverse effects this time. I asked my niece the nurse about the drug, and she said it was the go-to drug for this problem. I do wonder if the problem was caused by a dose of antibiotics I was given last February when I had the flu and it lingered for weeks. That was the only dose of antibiotics I have had since I was hospitalized with fever during chemotherapy. Or who knows, it may be from from the large doses I was given at that time. I do take probiotics, and eat probiotic-rich foods. Kim-chi, tempeh, soy yogurt, kambucha etc. and I eat a lot of raw fruits and vegetables.
As for Iran, I do know what you mean about making knee-jerk decisions about the state of that country; it seems to depend upon where one gathers their information. This applies to all countries, I think. If you just listen to headlines, it sounds as if USA is filled with serial killers, gang members and rioting groups. But that is what makes news, and I'm sure all countries are the same in this respect, to varying degrees. In Hanieh's case, I did take note of the things she said that affected her decisions.
I did attempt subscribing to WDDTY, I am not sure if I have succeeded. I chose the print subscription, simply because it is less likely to get lost in all the info that comes in online. But, when I was placing the order the page froze and never responded, I was unsure if it went through. Later, I got a free download from them online, but I never got a confirmation of a subscription. Unsure about the whole thing, I will see if anything further comes from them before trying again.
I will look for fresh cranberries, always good to have the whole fruit. Around here it is much easier to get the canned, sugared version of cranberries. I was pleased to find my organic, unsweetened juice, although it tastes awful!
I will be back later,
Love, Mary
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Hello Mary,
I shall try to tell you about the programme on Iran that I watched on TV5monde.
A young French woman was in it and she was being taken on a detailed tour of different parts of Iran by another young Iranian woman and visiting well-known sites, as well as going into different families. I was imagining in my head that the young Iranian woman was Hanieh. One of the things I noticed was that the young women were not that covered up. They were not veiled and the headscarf showed the hair at the front and often seemed to be slipping off. They could be seen in cafes by themselves and a lot of them indulged in all sorts of sports. They were skiing in the mountain areas, doing motocross on dirt motorbikes, and they were mixing with the young men. I was astounded to see one young woman who was a champion boxer. It was the older women who were more traditional and often wrapped in black, but from what I saw they were not that numerous. I had to laugh as a couple of the older women, watching the younger ones, made disapproving remarks, but the young ones just laughed them off.
The tour took us from the south to the north and some of the scenes were truly awe-inspiring.
If I remember correctly, the tour went from a place called Shiraz up through Esfahan through Tehran and the holy city of Qom. It was in Qom that I was very aware of a different kind of world and felt that I was back in time. There is obviously a big difference between the general population and the Mullahs that run the country. There were some beautiful parks in Tehran with out people out picnicking. Wherever the young Iranian took the young French woman the families were friendly, welcoming and hospitable. There seemed to be a great emphasis on families and getting together for enjoyable meals.
I remember how proud Hanieh was of the Persian heritage of the country. It was in AD641 that Arabs conquered the country and introduced Islam.
I think, in the end, that the country will change.
I saw that post that a woman, a ten year survivor of TNBC, wrote to Chris Woollams. As you say, I can beat that, now having reached 13 years and 5 months as of tomorrow. I think she had done one of those personal prescriptions with him. I shall never know why or how I have managed to survive with no recurrence so far. I do tend to think that having really done integrative treatment, by myself, that it may have helped. I shall never be free of that lurking feeling that it could come back.
It sounds as though you have always worked hard and I think that is good. As you age I hope you will be able to relax more.
I was glad to know you have been reading my posts about lymphoedema and we definitely agree about the folly of taking lymph nodes from one place in the body and putting them in another. I think newly diagnosed patients should try if possible to keep their cancer treatment to the minimum.
I had never been ill before being diagnosed with breast cancer at nearly aged 63 and that diagnosis certainly played on my mind and it shocked all those who knew me. I was also shocked to learn at the same time that I had an overactive parathyroid gland that could be life-threatening if not treated. As I have said before, there is research that shows an association between the two and it could be that the parathyroid problem caused the breast cancer. I shall never forget the overwhelming feeling of having entered the world of the sick when I was diagnosed and especially when I walked into the chemotherapy ward for my first treatment. Unless a person has been through that, they will never understand what goes through your mind.
I am very impressed with the way you looked after your husband, especially when you were ill yourself.
That is all for now. Take care.
Love.
Sylvia xxxx
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Hello Mary,
I have just noticed that you have done another post to me. Once again, I agree with you. I certainly think that cancer treatment traumatises our body and although we get on with a normal life eventually, we are never quite the same.
I do hope you are feeling much better now. I do know that you make a great effort to keep healthy and that we both attach great importance to eating properly. Like you, I eat probiotic rich foods such as tempeh, soy yoghurt, kombucha. I had a break from sauerkraut but have gone back to it. I found Kim-chi too spicy but I know it is good for us. We all know that fruit and vegetables are of great importance, especially raw ones. I have tried jars of fermented raw beetroot, but found it bit too much.
I do hope you will get your copy of WDDTY.
I have been reading the latest email from Chris Woollams. I was particularly interested in the article entitled Pomegranates reduce plaque build up in arteries. It states quite clearly that artery plaque build up is caused by inflammation and that this is the cause of pretty much all chronic illness. It says the inflammation is the product of a bad diet like "too much sugar first of all, then the fat sticks".
I do eat pomegranate seeds from time to time, but I am always wary about juice of anything as I think it is too concentrated, although I do have beetroot juice from time to time, which is supposed to be good for lowering blood pressure.
It is a very quiet Monday here in Exmouth, but very gloomy and overcast. I think we are all suffering from too much coverage of Brexit.
Thinking of you.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I am sure you will enjoy Chris Woollams emails and that you will learn a lot.
I have made a note that you will begin paclitaxel (Taxol) on December 30th and shall be thinking of you.
I hope you have had a good weekend and that this week will be good to you.
I see that we have adopted the American idea of Black Friday, so it will be this coming Friday. We adopt many things but we do not adopt Thanksgiving day, which I think might be nice to adopt. I have fond memories of Thanksgiving day in Canada, which was in October.
Sending you fond thoughts.
Love.
Sylvia xxxx
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Evening all,
Saw my oncologist this afternoon (not even kept waiting!) and am now officially NED.
Also saw the woman in charge of the Add Aspirin trial (bit scatty, frankly). I am to take a low dose of aspirin for 8 weeks, just to check that it doesn't have a deleterious effect on me. Assuming that it doesn't, I shall be randomly assigned to one of three groups for the five-year trial. She gave me a cognitive test and concluded with 'Well, there's nothing wrong with your memory!' which is always good to know, especially when your mother and grandmother had Alzheimer's.
Susie
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Hello Susie,
I just wanted to say congratulations on now being officially NED. It is so good to see another one in the group safely through their treatment.
Are you going to give yourself some time for relaxation after ending treatment before going on 8 weeks of low dose aspirin, before you gone on the trial? Have you given yourself enough time to recover?
I was interested to read that if all goes well during the 8 weeks, you will be randomly assigned to one of three groups. Presumably one group will take the aspirin, one group will take a placebo and what does the third group do?
I was glad to know that all went well with the cognitive test.
I was rereading your details and saw that your tumour was 6cms+ and that for the nodes you have 1/1. Does this mean that you had one positive node and that is all that was taken out? I ask this because my IDC right breast was also 6cms+ and that I had just one node affected, the sentinel node, but six others were taken out to check.
You must be feeling in good spirits today. Keep up the good work.
Love.
Sylvia xxxx
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Hello Sylvia,
I just had the one node removed. The rest were clear and were not taken out.
The aspirin trial tests 75mg aspirin, 300mg aspirin and the placebo.
I feel very well and have no problem with starting the low dose for eight weeks at once. I think this will be a very useful trial: it's being trialled on people who have had breast, prostate, colono-rectal and oesophageal cancer. If it turns out that something so everyday can prevent recurrence, it'll be a big thing.
Susie x
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HI, Susie
A big whoo-hoo to you, The doc said you are NED and the Trial Boss in charge of Cognition says you have a good memory! That's a good day!
The aspirin trial sounds interesting, I hope a low dose of aspirin will not bother you. It would be good if it were found to be beneficial.
I think you are one of the people who have come through the cancer treatment very well, that's wonderful, I'm happy for you!
Love, Mary
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Thanks, Mary, for your kind words. I have been lucky with my treatment.
Susie
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Hello everyone,
I am just posting to say that today I reached 13 years and 5 months since my diagnosis. You, too, can do this.
I also want to wish all American ladies on this thread and the other TNBC threads a very happy Thanksgiving Day on Thursday.
Best wishes to everyone.
Sylvia xxxx
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Hi, Sylvia
Congratulations on your 13 year and 5 month survival, an inspiration to us all.
Thanks also for Thanksgiving wishes, it is a nicer day to celebrate than Black Friday, which now starts in some stores on Thursday evening. Just time to wash the dishes from the big meal Thursday and then run out and start shopping! I think I'll pass on it.
Talk soon, love, Mary
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Hi Susie,
Congratulations Susie, NED, a fully functioning memory and no major side effects! All in time for Christmas too. Amazing.
Gill X
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Thanks, Gill.
The Zometa bone pain has all gone now too, so just 3-4 days with that. Now all I want is for the last radiotherapy sore to heal and normal service can be resumed.
Good luck with your next chemo.
Susie
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