Calling all triple negative breast cancer patients in the UK
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Our first snow fell overnight, a bit early but looks nice.
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Hi, Val
It's very good to hear from you, and glad you are doing relatively well. I guess we always have to be glad about our NED status, and put up with the rest. I am with you, I have bad knees, a bad shoulder, and my ankles swell if I stand or sit too long. My neuropathy bothers me, but acupuncture helps it a lot. I'm glad the cortisone shots help you, I get them too but my last shot in August didn't do much. Or maybe it did. Sometimes I think they are not working until 3 or 4 months pass, and then the added degree of pain makes me think maybe it was working. I am sorry you are afflicted with lymphedema, I hope you can deal with it allright.
A new normal is right, it has taken me a long time to come to grips with that.
Are you planning, or have you been, on any trips with your DH? I hope something is in the works for you, it's always something to look forward to for me. Me and sis-in-law have one in planning stages, but it's not finalized yet, somewhere warm in January, I think.
Thanks for appreciating my presence on this thread, Sylvia is the tireless one, she is always ready to help and advise, and is constantly studying.
I shall talk to you soon I hope, love,
Mary
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Hello All,
First Zometa infusion today, seen promptly and all done in 15 minutes. Already booked in for my next in May. Funny to think that there will be people in the chemo unit next May who don't even know they have cancer yet. Not funny-haha, obviously.
I asked the nurse who gets it. She says that it used to be just women whose BC had already gone into the bones but that the evidence that it stops spread to the bones is now overwhelming. At the moment it's routinely given to Triple Negs and to post-menopausal woman (presumably we are assumed to have weaker bones) but it sounds as if it will soon become a routine treatment for everybody.
She also said that I was unlikely to experience side effects with this preventative dose. So I have decided not to have any.
Susie
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Hi Flora,
I wish your mother the best next week as she starts her Taxol (paclitaxel) treatment. It is possible that it won't cause her so much grief as the first rounds did, everyone responds differently to different drugs. And I think it's good she will be at Oxford with Dr. L, since you all got along well and respected him highly. The details can be worked out later, as you said.
The taxane drug that I had was called Taxotere (docetaxel). Or there is paclitaxel (Taxol), which I understand is what your mother is going to be given.
I have also talked to people who breezed through their chemo, but also many who didn't have an easy time. I look forward to the day when these drugs are no longer necessary. I thought I was quite healthy, and 61 and active when I started this journey, but it wasn't easy. My oncologist retired on my last day of chemo, which I found disturbing. A month later I returned to the center for a check-up, and in walked a very beautiful woman who turned out to be my new MO; she promptly informed me that I had not done enough Taxotere and would have to have 2 more infusions! I was so shocked I was speechless, and then just started saying "no, no, no", and cried. She and the nurse left the room, the nurse came back soon and patted me on the back and said after reviewing my records they agreed I was finished according to the previous doc's orders. Of course by then I was doubting everything so I asked "Which doc is right?" She said they all have different protocols, and not to worry about it. What had happened was that because of my side effects, the first doc had started shrinking my doses as they went along, so I hadn't done enough of the drug according to her regimen plan. At any rate, here I am, for better or worse. We all have different paths through this maze, and have varying levels of difficulty. I hope your mom finds some good luck and can get through this in good shape.
Is your mother thin? I started out quite slim, and lost a lot of weight because of very little appetite. Sometimes it's necessary to make oneself eat, or drink protein drinks if you can find the ones that are not loaded with sugar. The drinks the Center gave me were awful, I thought. I had a friend who would bring me much better ones sometimes, they were pricey but I should have done more of them and perhaps not have lost so much muscle. Sometimes I think the people with extra weight on do better with chemo, but that's just an opinion.
I am sorry about your father, but it does sound as though his life is quite idyllic for the state that he is forced to live in. Very sorry of his sudden injury, I'm sure that was hard to adjust to for you and family.
I will talk to you soon, love
Mary
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What a horror story, Mary. I would also have shrieked 'No, no, no!' if told I had to have more Taxane when I thought I'd finished, what with the vile taste in the mouth for ten days after. I drank a lot of banana milkshake -- not the healthiest thing, I know, but it tasted good and gave me some much-needed calories.
Susie
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Hello Val,
Thank you for your post. I was so glad to see you back on the thread.
First of all I want to say congratulations on reaching three years since diagnosis and congratulations on getting a clean bill of health from your medical oncologist. The lymphoedema is a chronic side effect from breast cancer treatment and it can come from the surgery, the chemotherapy (the taxane drugs) and radiotherapy. I think it is quite common and has not been given enough attention until quite recently. I know from your previous posts that you have suffered a lot from it. My lymphoedema does not bother me that much and I just do the exercises and manual massage. I think my biggest fear now is getting stung when gardening, because of the danger of infection and cellulitis.
I do understand that pain from arthritis is very debilitating. Did you have it before you had the cancer treatment?
Thank you for posting those words of wisdom to those newly diagnosed and those going through treatment. We all know, having been through it, how important it is to keep hydrated. We all know that it takes time to recover from this dreadful treatment and that your body is not going to bounce back overnight.
Above all, none of us must ever underestimate the importance of good nutrition all of the time.
Many thanks for your kind words to Mary and me. They are much appreciated.
Take care of yourself, Val, and keep in touch whenever you can.
Are you still busy writing?
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post and your photograph.
I agree that in these dark winter months it is very important to keep our intake of vitamin D.
As for Brexit, we are supposed to be getting breaking news from Theresa May next week. One thing is for certain, it will not be the Brexit for which a lot of people in this country voted. Theresa May was and is a remainer.
I agree that it is good that we still get occasional visits on the thread from those that have finished treatment and are doing well. We need these visits to encourage and motivate the newly diagnosed and we must support, comfort and give them lots of hope. I do hope we shall hear from Marias, because we really do not know if she has finished treatment and can put everything behind her. As for Hanieh, I would really like to know what has happened to her and whether she did go to live in Turkey and left Iran. I was watching some news item about Iran yesterday and saw pictures of Tehran. What struck me was that most of the men appear to be dressed in Western style clothes, but the women are not. It is like looking at two different ages, the modern and the medieval. With Hanieh, we still do not know what happened with her recurrence of breast cancer. As for Gina, I do hope she is fine and has got through her treatment for recurrence.
I can recommend the magazine What Doctors Don't Tell You. It has so much information in it. I was surprised that you think the ozone dental treatment is not very widespread in the US, because Raymond and I Googled it about available dentists and most of them seemed to be in the US. I think the magazine WDDTY has been around for some time. We used to read a smaller format version of it in Canada many years ago.
That is all for now. The rain is absolutely falling down here and there is a weather warning for high winds.
Have a good weekend.
Love.
Sylvia xxxx
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Susie,
You always make me smile, I am over here across the Atlantic smiling because of your post. You have decided not to have any side effects, that's the attitude to have!
Yes, eating is difficult when most things taste like paste, I liked eggs, and yogurt when I had chemo. I think I had eggs almost every day. I had a blood test after chemo and my cholesterol was higher than normal, not sure if eggs were the cause but they kept me going. Banana milkshake sounds good now, actually.
Love, Mary
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Hello Gill,
Thank you for a most interesting post. I was so glad to know that you are feeling extremely well and full of energy. I do hope all goes well next Thursday when you have your next chemotherapy treatment. Remember that with chemotherapy treatment fatigue can build up as the treatment progresses so make sure you do not overdo things and above all keep well hydrated.
I was very interested in knowing about your life and seeing you as a whole person who happens to be going through cancer treatment.
You certainly lead a very busy life and you have done a lot of interesting and greatly needed voluntary work. Given some of the voluntary work you have done, you must be a very strong person.
I do understand why you have taken a break from the hospice work and I do hope all goes well and that you are able to build a more modern spacious hospice. Hospices do such good work. My older brother died peacefully in a hospice back in 1995 and I spent a lot of time there with him. I saw the wonderful work that the staff did.
I can understand what a busy life you lead with all that you do. In a way, it is a good thing as it stops you from dwelling on the breast cancer. When I was going through treatment I kept pretty busy as well and kept my life as normal as possible. I remember my oncologist asked me when I was first diagnosed whether I would like visits from the Hospiscare nurses in Exmouth and I decided that I would. We used to have really interesting talks and I still bump into them in Exmouth.
That is about all for now. Keep up all your good work and we shall all be thinking of you next Thursday.
Love.
Sylvia xxxx
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Hello Susie and Flora,
Many thanks for your contribution to the thread this week. I hope you both have a good weekend and that you do something relaxing and enjoyable this weekend, despite the weather.
Thinking of you both and sending best wishes to you and to Flora's mum.
Love.
Sylvia xxxx
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Dear all,
How nice to hear a bit more about you, Gill, and thank you as ever for your humour, Susie, and your wise words, Mary and Sylvia.
A little bit about me: I'm 42 and a stay-at-home mum to four lovely children- 3 sons and a daughter. The oldest is just 10 and the youngest (boy/girl twins) are 5. There is an 8 year old in the middle (who is a very typical middle child-just gets on with things much of the time).
My mum lives locally to me and has been a very involved grandmother for 10 years. It is the least I can do to help her out now.
We live in Headington, a lovely part of Oxford, with wide streets, nice parks and a truly wonderful community- and, most importantly, a recently-acquired Waitrose! It is the part of Oxford that houses all the hospitals, which has actually proved very useful what with all the medical issues our family has been dealing with recently.
I never found a defining career for myself as such, but, pre-children, spent 5 years working in museums, then went back to uni and did a Psychology degree at Oxford Brookes. The intention behind this was to become a Clinical Psychologist, but I had no idea how competitive a career this would turn out to be! I spent three (interesting) years trying to do the necessary work experience in Psychiatric hospitals to get onto the training course for Clin Psych, but failed to get onto the course two years' running. At this point, I was early-30s and truly wondered if I might spend the rest of my life trying to get onto this elusive course, so my mind turned to children, and the rest is history...
All 4 children are are at school now, and I find myself doing quite a bit of volunteering in various community-related projects, which suits me very well (even if it's not very trendy for mothers to do this sort of thing these days. I think I'm only "excused " by society for not going back to work because of the number of children I have!).
Anyway, that's a bit about me, to flesh out the remote "flgi" persona a bit more.
I hope you all have a good weekend
Flora x
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Flora - just to add to Maryna's experience of Taxol. I had what was called dose dense chemotherapy - which was 4 treatments of Adrimaycin + Cytotoxan followed by 4 treatments of Taxol - called dose dense because each of the treatments was only 2 weeks apart - so it was fairly aggressive. It was difficult because I was super sensitive to the chemicals and of all of the 8 treatments only my first one was the full dose. After that the dose was reduced to keep side effects at bay. My reaction to the first drugs was rash and itch on my upper body and hands. The taxol was the worst for me, and the 2nd treatment I had a severe systemic reaction - which was most unpleasant. I did not want to continue with the taxol, but did so at my MO's behest but at only 60% dosage. I was paranoid about getting neuropathy and would happily have quit the treatments early - but I did complete them at the reduced dosage.
All of this just to give you another view point and to help understand that we each react differently to particular drugs and we really do not know how they are going to affect us. However, I am now five and a half years since the end of all my treatments and I was discharged from the Cancer Agency this past April. Cancer treatments are a nightmare, but we each have to choose our path and sometimes the direction changes along the way.
Wishing only the very best for your Mom. And also for you as you go through this with her - she is most fortunate to have you.
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Hello Flora,
Thank you for your post. I was very pleased to read a bit about you and your family. I can imagine how busy you must be with four children and I should think there is never a dull moment. I was interested in what you said about the middle child, because I am the middle child of five children and the only girl. I probably fit the picture of just getting on with things, but I think I sometimes felt lonely. I would love to have had a sister.
I think you are very lucky to have your mum living locally to you and I am sure your children have enjoyed having their grandmother close to them.
I do not know Oxford very well, but I have been there a couple of times and it did look very interesting. It has probably changed a lot since I was there. I think you are very lucky to have those hospitals in your part of Oxford.
I was very impressed to hear about your studies. That all sounded very challenging and I do admire you for doing volunteer work when you have four children. You and Gill certainly do your bit for society.
You now have the added responsibility for looking after your mum as she goes through her cancer treatment and I can tell from your posts that you are completely dedicated and that your mum is in good hands.
I wanted to add my bit about my chemotherapy experiences to those of Mary and adagio.
I had my chemotherapy before my surgery, a mastectomy, to shrink a large tumour. I had epirubicin (Ellence) the same drug group as doxorubicin (Adriamycin) and cyclophosphomide (Cytoxan) for the first three months and I had it every three weeks. Apart from the hair loss after the first dose, I had no side effects at all, carried on as normal and just rested if I felt like it and made sure I ate well. I then had docetaxel (Taxotere) every three weeks for three months. With this I lost my eyebrows and eyelashes and developed a bitter taste in my mouth. I may have been a bit more fatigued.
At the end I was told that I had sailed through chemotherapy. The large tumour shrank a bit but it did not disappear.
I do get puzzled about doses that are mentioned, because I was told that the dose you are given is based on your weight and height. I suppose this is still the case but that the overall dosage will be worked out differently if you are having it weekly or two weekly at each infusion, but it will still add up to your weight and height.
It was only sometime after I had finished the chemotherapy that I realised that the soles of my feet felt strange, rather stiff and rough. My oncologist told me that is was neuropathy caused by the taxane drug and that there was no cure. Since then I have had my feet tested several times by a podiatrist and they are still without feeling. There is no pain but some patients say that they feel pain. I suppose it depends how the nerves have been damaged.
After I had finished all my treatment I had a puffy right arm and hand. I was told it was lymphoedema from damage to the lymph system after surgery and removal of some lymph nodes. I was told that it was incurable and there would always be some swelling. I had two appointments with a lymphoedema specialist but never wore a compression sleeve. I was able to be discharged and really until last year I never thought about the lymphoedema in the arm and there was not much difference between that and the left arm. The lymphoedema came back October last year, 2017, but it seems to have more or less normalised again and does not really bother me. It seems that the flu jab in my left arm may have started the lymphoedema again in my right arm. Since then I have learnt that the taxane drugs can also cause lymphoedema and that radiotherapy can as well. I have also learnt that you can get lymphoedema from surgery whether it be a mastectomy or a lumpectomy.
I hope this helps. I was diagnosed with IDC (invasive ductal carcinoma) with triple negative receptors just before my 63rd birthday.
I tolerated treatment very well.
I wanted to give you this positive experience as I know you and your mum must be anxious about this.
Sending you very best wishes.
Love.
Sylvia xxxx
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Hello everyone,
I was having another look at chapter 7 of the book I have been reading for some time, The Complete Guide to Breast Cancer – how to feel empowered and take control by Professor Trisha Greenhalgh and Dr Liz O'Riordan – expert doctors and breast cancer survivors. Comment from Macmillan Cancer Support: "Humane and based on robust evidence".
Chapter 7 is entitled "Breast and armpit surgery". It goes from page 75 to page 100 and has plenty of diagrams to explain the different surgeries.
On page 96 there is a section on lymphoedema. This is what it says at the beginning "Lymphoedema is when fluid collects in the soft tissues of your arm (and sometimes your breast) because the lymph vessels were cut during surgery when your surgeon removed the nodes, which causes your hand and arm to swell. After a sentinel node biopsy, your risk is 5-10 percent (1 in 10-20) in your lifetime. After an axillary clearance your risk is 25 percent (1 in 4). It can take several years to develop, and there is no cure, which means that once you develop it, you will always have a swollen arm."
There are more details in this section about what signs to look for and also how to reduce your risk of developing lymphoedema, and the exercises and massages that you can do to keep it from getting worse.
Once again, I must say how useful this book is. On lymphoedema there are three pages of information, 96 – 98, easy to follow.
I hope you find this useful.
You can also find all you need to know in the book "Let's talk lymphoedema", which came out last year.
When I was diagnosed and treated for my breast cancer, 2005/6, nobody at the hospital mentioned lymphoedema.
I hope you are all having a good weekend.
Best wishes.
Sylvia xxxx
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Hello Mary,
Beautiful photograph of snowy trees. Hope you're not snowed in though. I revert to childhood if snow looks as though it might settle long enough for a snowball fight with the husband or to build a snowman. This doesn't happen very frequently in East Anglia nowdays and often the snow we do have is too powdery to do anything with. It's fun to watch the cats running around in it though - until they realise that their paws are frozen and that an hour or two on the rug in front of the logburner is the only way forward.
Interested in your potted history of the Catholic Church in your part of America. I knew about the German settlers, but hadn't realised that they were Catholics. As you'll know, our history was very bloody. Mass was outlawed for centuries and the many priests who hid and the head of those households which hid them went to the scaffold. We have two Recusant chalices from Norfolk in our Archive dating back to the 16th Century - frustratingly we don't have any other details.
I agree that the Vatican should sell off a few treasures to fund missions. We have far too few young priests here and the older ones never seem to be allowed to fully retire. Well, we plough on and hope for the best.
I have only one friend with triple negative BC, she finished chemotherapy eleven months ago and is just beginning to feel relatively normal again, she's been left with neuropathy, but in her case it isn't too bad. She doesn't seem to have been warned about side effects by her Oncologist though. One day, soon, I hope, we'll look back on chemotherapy as barbaric, a sledgehammer to crack a nut. Until then I guess we just have to get on with it. We should be told about possible, likely, and common side effects by our Doctors, how can we make informed choices otherwise?
I was sorry to read about the Californian fires. People must be terrified and it seems that many are unaccounted for. Hoping for better news soon.
Wrap up well and keep warm.
Love,
Gill X
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Hi Susie,
The Zometa infusions sound very positive. Unfortunately, I googled and was left feeling very much should I, Shouldn't I? I think I'll have to go with you on this one, particularly as the evidence is so strong.
You seem to have been very lucky on the side effect front so I doubt if Zometa will dare to stick its head above the parapet and misbehave.
Love,
Gill X
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Hello Sylvia,
Thank you for the reading advice on lymphoedema. Wouldn't it be useful if we were fully informed prior to surgery and chemotherapy? I paid for my mastectomy and partial clearance and was given one session of physiotherapy three weeks later. The emphasis was very much on exercises to prevent scar tissue forming and restricting movement. I've lost all feeling under my left arm and still have a seroma although this is now being absorbed.
I'm very aware of the problem of lymphoedema from the Hospice patients, but have long felt that it was way down on the priority list. I also wonder why more physios are untrained/under trained in this area?
My next chemotherapy session is on Thursday afternoon and my Oncologist may visit whilst I'm having treatment. If I have the opportunity, I'll ask about aftercare and lymphoedema. I do wonder if much has changed since you had your surgery 13 years ago. I guess it depends largely on the hospital lottery.
Thank you for keeping us all up to date.
Love,
Gill X
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Hello Sylvia,
Thank you for the reading advice on lymphoedema. Wouldn't it be useful if were fully informed prior to surgery and chemotherapy? I paid for my mastectomy and partial clearance and was given one session of physiotherapy three weeks later. The emphasis was very much on exercises to prevent scar tissue forming and restricting movement. I've lost all feeling under my left arm and still have a seroma although this is now being absorbed.
I'm very aware of the problem of lymphoedema from the Hospice patients, but have long felt that it was way down on the priority list. I also wonder why more physios are untrained/under trained in this area?
My next chemotherapy session is on Thursday afternoon and my Oncologist may visit whilst I'm having treatment. If I have the opportunity, I'll ask about aftercare and lymphoedema. I do wonder if much has changed sicne you had your surgery 13 years ago. I guess it depends largely on the hospital lottery.
Thank you for keeping us all up to date.
Love,
Gill X
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Hi Gill,
Three days in and no sign of any side effects from Zometa so far. No 'flu-like symptoms' or aching joints.
Susie
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Hello Flora,
Staying at home to look after four young children is a full time job and you also fit in community work!
No, looking after children isn't very trendy and I remember being called a ' traditional housewife' and made to feel inadequate by some. Being a parent is extremely challenging at times and I felt that my children needed even more of my time (and patience) once they became teenagers. They did eventually grow up to appreciate the time I spent with them as yours will. They'll also appeciate the close relationship they have with your mum.
I envy you your time working in a museum. Even better than an Archive. As a child I was hooked on Egyptology and spent more time than was healthy staring at the mummies in local museums. I still love to wander around museums, old Churches, old streets and old houses. I'm pleased to say that I grew out of my mummified bodies phase.
I guess that with mental health services being in meltdown for many years, clinical psychology posts must be very few and far between. The knowledge you have probably he!ped you as a parent, so never wasted.
I think about your mum often as do others here, all wanting her experience this time around to be much better than last time.
Look after yourself too.
Gill X
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Hi Susie,
Hooray! Well you did decide not to have any SEs so they probably didn't bother turning up.
Gill X
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Hi, Sylvia
We have had another snow, and it's very cold. Rather unusual for us to have 2 snows and it's not Thanksgiving yet. Usually the leaves of autumn have time to fall and blow around and need raking, this year many of them were still on trees and quickly fell and now there is a thick layer of them under the snow. It might be a long winter here, or it could all go the other way as well and be a balmy December.
I told you I would fill you in on a General Practitioner appointment I had last week. I have been having a urinary issue, things just did not seem normal. He tested my urine sample in the office and it was all good, but said he would send it off for further testing. I have not called to check those results yet, but after hearing the first results were good, I am pretty sure the problem is because of dryness caused by lack of any hormone presence. Before I was diagnosed with BC, I used a topical estrogen twice weekly, but was told to stop it when diagnosed. Since then things have gotten decidedly more uncomfortable. If anyone has any recommendations for a good non-hormonal product, please let me know. My oncologist told me she would approve a once-weekly topical hormone, but not until next spring and only if a non-hormonal product didn't work.
The doc also talked me into getting a flu shot. He said they were better this year, (we will see), and that there was a high-dose shot for seniors. I am glad to say I have had no adverse effects from the shot, I hope it works better than last year's vaccine! He also told me I could get a low-dose CT scan on my lungs as part of a cancer-screening for ex-smokers. I tend to forget I ever smoked, I quit 22 years ago but I did smoke for 28 years. And was around smokers as well since it was just more common then. I haven't decided on that yet.
I think about Hanieh often too. It is worrisome that she had the recurrence and we have no idea how she is doing. Also I have wondered if she can communicate freely from where she lives, or perhaps she has succeeded in moving to Turkey as a way of getting to Canada, which was her goal. When she was communicating after her recurrence, it did seem she had a better doctor, and better care. I hope all is well with her, her husband and her daughter.
I have not forgotten about the Dental Diet Book, and once every week or two I have a breakfast as recommended by the author of that book. Today it was little purple potatoes cooked in butter, with an egg broken into it, and along with fresh venison loin also in the butter. It's a really good meal on a very cold snowy morning! I don't usually eat a breakfast like that but it's a welcome change in routine.
About the ozone treatment used by dentists, I checked into that and there is no dentist in my area that uses it. The closest one is about 3 hours away in Kansas City, and after that about 6 hours away in Chicago. They are called holistic dentists, and most of them are on the coasts, West Coast, East Coast and Florida and Arizona. All the warm places! Speaking of dentists, I have an appointment for a cleaning tomorrow, hope everything is okay.
What Doctors Don't Tell You seems to be available online and in print, and seems quite inexpensive. I might sign on to that one. I have signed up for several magazines over the last several years because the schoolchildren sell them for fund-raising. I have been disappointed in all of them so far. They all have gone to very small print, (to save money no doubt), and they all seem quite preachy, and seem to assume their readers are in urban areas such as New York or LA. It's the impression I get, and I suppose it's just that I'm getting the wrong publications. So far I have never renewed one, but just let them lapse. I do like some cooking mags, but there are so many recipes online that it seems like a waste to buy a mag. WDDTY is allowing a free look online of an issue.
I am glad Raymond has healed up from his mishap, these things happen so quickly and then go away slowly. My brother had another spell yesterday, getting dizzy and then blacking out. Fortunately this time he did not injure himself, and was with people who got him sitting down. They had been working outside, and we still have no idea why this happens. Although my guess is a blood pressure issue, or some heart rhythm. His daughter talked him into going to the hospital, which checked him out and found nothing wrong. They did make an appointment for him to see a cardiologist and have a heart monitor put on for 30 days. Apparently these episodes are common across the population, what makes his worrisome is that our father died rather quickly of heart problems at the same age my brother is now, 68. And my brother does a lot of work outside alone, with a chainsaw cutting wood, on a tractor or working with cattle, on his roof cleaning gutters. Even though he has been told it would be better not to work like this on his own, he continues to do it. I hope his appointment is soon, it would be nice to have some questions answered.
There was quite a lot of mention here over the weekend of the 100-year mark of the end of World War I, the War to end all Wars; if only that had been true.
I will talk to you later, love,
Mary
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HI, Gill
We had another snow, this one was very polite and did not cause any problems on the road but piled up everywhere else. Sun is shining today, and things are melting quickly.
I'm sure the German settlers of the 1800's that came here were not all Catholic, but most of the ones that settled in this county were. There are a couple of Lutheran churches too, but one has a hard time finding anything else until out of this county. I recently finished reading "Mary, Queen of Scots", and she ran into a lot of problems by clinging to her faith when she came back to Scotland from France. The Scots Mary was beheaded, this book said she was given the chance to have a non-Catholic cleric visit her before her execution, and she refused.
It must be so interesting to work with archives and relics of such old institutions, and yet frustrating when you run up against a wall. I looked up a little history on "recusant", because I was unfamiliar with the word. I learned it started with the reign of Elizabeth I, who outlawed the Mass. The priests who served the recusant Masses were ordained by Queen Mary, and I have to say I always thought it was odd that Henry VIII despised the Papists later in life but tolerated his daughter's practice of the religion. It's very interesting, I can see why you and your husband enjoy it. So much history!
Your present-day circumstances are as it is here: older semi-retired priests carry on with part-time service, and not many young people are entering holy orders. I do have an aunt who survives, she is a retired Franciscan nun and is enjoying her life. She lives in a retirement community with many other retired nuns; her life has been one of duty and belief. She is 93, and still giggles, she loves going to Mass every morning and enjoys the events and activities of the day.
The California fires are indeed awful, and the death count continues to rise, and the search is on for missing people. I believe some areas are going to get some much-needed rain, I hope that helps; there are now so many people living in these wildfire-prone areas it is disastrous. I think an entire town was burned, ironically named Paradise.
I am wrapping up warm before going out, it's one of the things I don't like about this weather; all the clothes one must put on to be outdoors for any amount of time. Fortunately I have the proper clothes, it just takes longer to get out the door!
Best wishes for your Thursday treatment, if your oncologist comes in, ask him/her anything you like and let us know what he/she says. I will think of you!
Talk to you again soon, love,
Mary
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Hello Gill,
Thank you for post from November 12th.
I think with all the information that is now available about breast cancer treatment, that patients can be aware of the side effects of it all and be fully informed patients before they sign any consent forms. With all the information available and all the cancer charities giving out information, there is no excuse for dashing into treatment unaware of what you are going to face. It may be that there are still patients out there who want to get on with the treatment and not ask too many questions. I do remember that back in 2005 when I was diagnosed and sent a list of questions to my breast cancer consultant surgeon, requesting for her to have the answers at my next appointment, she did indeed have all the answers and went through them with me. She told me what I had done was very scientific and unusual and that most patients did not ask questions. I am sure that with all the information available now this must have changed, but I may be wrong.
It is very important to start exercising after surgery for breast cancer and to keep your arm on the move. I remember that a physiotherapist came to see me the morning after my mastectomy and went through gentle exercises with me. I did have some physiotherapy as well, which my GP arranged for me.
Straight after surgery I did have numbness under my arm, but it did normalise.
I know that some patients have seromas so I am glad to know that your is now being absorbed.
I think that lymphoedema has been ignored over the years but I think that might be changing now. I tend to think it probably is quite a common side effect of breast cancer treatment, but was not brought up unless necessary. I think the most important thing is for the patient to be shown how to do exercises and manual lymph massage and to do this regularly. Under the NHS I think you will probably get the bare bones, be issued compression sleeves and then have visits with a lymphoedema specialist at the hospital. If you can afford it there are private lymphoedema specialists you can go to. You have to remember that lymphoedema is not confined to cancer treatment. It can happen from any surgery where your lymph system is accidentally damaged.
I think we have to learn to look after ourselves and need to read that latest book Let's Talk Lymphoedema. I mentioned it to the lymphoedema specialist that I see and she told me that they used the book and that the Professor from a London hospital was their Guru!
I do hope that everything will go well with your chemotherapy tomorrow. I do remember reading in that book that the taxanes can cause lymphoedema.
I do not think that much has changed when it comes to breast cancer treatment since I had my treatment. It is still basically the same, surgery, chemotherapy and radiotherapy, with anti-hormonal medication if you have hormonal positive receptors. There is basically the same pool of chemotherapy drugs, with the addition now of some monoclonal antibody drugs and immunotherapy drugs. I think the newer drugs are just as toxic as the old ones.
I had a friend here with melanoma cancer that had spread to the liver. She was treated with an immunotherapy drug and she went downhill pretty quickly. She was told the drug had not worked for here and there was nothing else to be done. It was all very sad. Another friend with triple positive breast cancer had it spread as well through the body. She had all kinds of monoclonal antibody drugs and probably immunotherapy ones, but she did not make it.
I think it is important to keep ourselves up-to-date and I try to do that on this thread. I think it is a good idea to be always one step ahead of the "experts" if possible.
That is all for today. Good luck for tomorrow.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. I do not envy you having snow.
With reference to the topical cream you are looking for, I have no idea. I would have thought your oncologist would have had some idea of a non-hormonal product and if not your GP or pharmacist.
I get the impression that GPs in the US follow the same patterns as the GPs here. They love giving out medications, pushing vaccines and organising scans. I am very wary of all of this.
Like you, I do wish Hanieh would get in touch with us and let us know that is fine, especially about her recurrence. I do wonder, too, whether she is now unable to communicate via the internet. We really have no idea what goes on in her country. The West is very biased when it comes to Iran, so it is hard to know what to believe.
I was very surprised when she said she was trying to move to Turkey with her daughter, as I could not understand that she was leaving family and friends.
I am going to look up here to see whether there are any dentists using ozone to treat their patients.
As for What Doctors Don't Tell You, I am sure you will not be disappointed in that magazine. You learn all sorts of things. I do not read many of the papers any more here. I feel they are very biased and really are part of the Establishment, which I do not like. I sometimes buy online a couple of magazines in French, such as L'Express and Le Nouvel Observateur, but I must admit I am growing weary of them. I tend to use my own common sense to make up my mind about things.
I was sorry to read that your brother is having problems and I do hope he will get some answers to what is going on with him. The work he is doing sounds very hard and it looks as though he needs to cut back a bit.
I have to end now but I shall write some more later. We also had a lot of mention of the 100 years anniversary of WW1 1914-18. I watched a lot of the ceremony that was taking place in Paris.
That is all for now.
Love.
Sylvia xxxx
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Sylvia
I agree about the lack of awareness about lymphedema. Until recently I was not aware that it can cause permanent tissue damage. Knowing how to perform manual drainage and encouraging your body from the get go to create new pathways for the lymph fluid to drain is paramount to recovery post great / axillia surgery and the prevention of lymphedema.
Hope everyone is tracking well xxx
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Hello everyone, especially fellow Brits.
Yesterday I was talking to a friend of mine who is a retired nurse and she told me about an excellent programme that she had seen on the television on Channel 5 on October 31st. The title of the programme was The New Secret Life of the Hospital and this particular one was about the Royal Devon and Exeter Hospital where I had my treatment. She told me that it is one of the best hospitals in England, according to the programme. Unfortunately I missed the programme but am going to have a look at it on Catch-Up.
Did any one viewing the thread see it? I was very impressed with my breast cancer treatment and found my team there excellent and caring.
Another programme that has been on the television on RT was Renegade Inc which is an in depth interview programme. On Monday November 12th it was all about how our NHS has been stealthily privatised since Margaret Thatcher came to power in 1979. pushing market forces. At first this was all done stealthily, then covertly, and now openly. This continued after Margaret Thatcher through John Major, Tony Blair, Gordon Brown, David Cameron and up to the current government under Theresa May. The interview lasted for half and hour and I was completely absorbed in it and annoyed at what has been done to our NHS, the establishment of which I think was our finest hour. I am going to look at it again because I think it is so important.
The link to the New Secret Life of Hospitals is:
https://www.my5.tv/the-secret-life-of/season-1/episode-1-hospital
The link to Renegade Inc – the NHS, a death by a thousand cuts, is:
https://www.rt.com/shows/renegade-inc/443715-national-health-service-privatization/
A book was mentioned that I shall buy soon, entitled How to Dismantle the NHS in 10 easy steps, by Youssef El Gingihy. It is being published at the end of the month.
Also in this interview was a woman named Sarah Gangoli who is fighting to save the NHS. I am going to look up more details about her on the internet.
What I picked up on was that Mrs Thatcher started the demise of the NHS and with the introduction of a managerial class ruined the NHS. The marketisation and privatisation of the NHS need to be removed. It was said that a full pro-renationalisation is the only way to save the NHS and that we need to repeal the 2012 Social Care Act and PFI. It was also said the NHS needs to be run by professional health care people. We need the NHS Reinstatement Bill.
My own thoughts are that most of the people of this country are going to be in a real mess if we lose our NHS.
I see from the thread today that it is very busy with views but that the posts do not compare to the number of views. To make progress and keep finding new ideas we need to hear from viewers as well through their posts.
Sending best wishes to everyone.
Sylvia xxxx
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Hello Monica in California,
I do miss your posts and just wanted to say that I hope all is well with you. I was very interested in reading your posts about the course you were going to connected with lymphoedema.
I do hope we shall hear from you.
Love.
Sylvia xxxx
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Hello Helenlouise,
It was a nice surprise to see your post and good to know you are informed about lymphoedema. I agree with what you said.
How are you getting on with your treatment? Are you still taking Xeloda?
Sending you best wishes.
Love.
Sylvia xxxx
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Hello everyone,
I am going to try to finish the notes about lymphoedema that I have got from the book the Complete Guide to Breast Cancer.
"Your breast care nurse will tell you what signs to look out for, and there is detailed information on rh Macmillan and Breast Cancer Care websites!.
Signs to look out for:
Swelling, tightness, discomfort in your fingers and hands (your watch or rings may feel tight).
Your long-sleeved clothing may feel tight or may be hard to get on.
You should contact your breast care nurse who will refer you to your local lymphoedema unit.
Reducing risks:
Regular exercise.
Swimming and walking.
Use your arm normally and do your regular shoulder exercises.
Try to avoid gaining weight. Weight gain can increase pressure on your lymphatic system and lead to lymphoedema.
Most doctors advise not to use the arm where you have lymphoedema for injections or taking blood pressure.
I was told not to lift heavy shopping etc.
You need to keep your arm well moisturised. If you are wearing compression sleeves during the day, moisturise the night before (I was told that if you moisturise the same day you wear the sleeve, the moisturiser can spoil the compression sleeve.
In the book it says to use strong sunscreen on holiday as sunburn can also increase the risk of developing lymphoedema.
In the book it also says "After armpit surgery, you are more likely to get an infection in your hand or arm following a small cut or graze because you have fewer nodes to fight the infection. This infection can then spread and become serious. This infection can also increase the risk of you getting lymphoedema."
I say use common sense to help yourself. Wear gloves when gardening etc., avoid getting stung, and keep any cuts and grazes clean. If your arm etc. appears red or swollen or hot and painful, see your GP as you may need to go on antibiotics to avoid serious problems such as cellulitis.
That is all I have time for today, but I shall try to do some more another time to complete the picture on lymphoedema.
If anyone has more information or questions, please post. I hope everyone is having good week.
Best wishes.
Sylvia xxxx
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