Calling all triple negative breast cancer patients in the UK
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Hello Mary,
I am just reading the posts Monday morning August 20th. I actually left the laptop off during the weekend, as I felt the need for a bit of rest. Thank you for your interesting post and for your dedication in catching up with everybody. It sounds as though you have had a very busy week, especially the trip to the airport to take one of your sister-in-law there. At least you had the reward of some nice fresh fruit.
I do hope your acupuncturist can help you before you go away on September 1st. I am sure the trip to Alaska will be very exciting. From where are you sailing?
I had forgotten that our birthdays are so close. I shall definitely think of you on September 5th and please think of me on my birthday September 1st.Of course, we are a couple of Virgos.
It is true that we have periods on the thread when it is very active and then we have lulls. I am keeping the names sorted out by keeping them grouped by countries.
I do hope Pam will pop in from time to time. She is part of the US contingent, which at the moment I have as you, Val, Monica and Bryce99, who is posting for her sister.
As you say, we have not heard from adagio in a while or from 53Nancy in Manitoba Canada. I hope they will post as the holidays come to an end.
Like you, I hope all will work out with Hanieh. It is a lot for her to do.
We do have a UK contingent as well, but I think that Susie and Flora are busy. Susie is going through radiotherapy and I think Flora who is posting on behalf of her mother, will probably be supporting her through chemotherapy. We also have Ellen (Ellewebs) posting for her mother. I do hope we shall hear from them soon. It is quite difficult, sometimes, to keep up with all the treatment, so it is useful when posting to remind us what is happening.
There is still no news from Marias and Gina, but I am sure they will get in touch when they can. As you said we did hear from Jags in India but no news from Sid in the same country. I do hope I have not forgotten anyone.
We are still not getting enough rain in Exmouth and it is still quite mild. I feel our country is in a mess and there is so much poverty and people sleeping rough on the streets for such a rich country. We keep being told we are the fith richest country.
That is about all for today.
Love.
Sylvia xxxx
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The animals keep coming in as the drought worsens. They are show no fear and most people leaving water and feed
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Hello Kath,
Thank you so much for those interesting photographs. They really made me laugh. It looks as though they had turned up especially for the match.
It is so interesting to learn about all the wildlife in different countries.
I must say I was always a bit wary when living in Ottawa, Canada, about wildlife turning up in the garden, even though I was in the town. We did have skunks turning up and the police would come and take them away. A neighbour had a racoon turn up and we had groundhogs. The most frightening thought for me was the possibility of a bear turning up. There were occasions when there were sightings in the centre of Ottawa. Being a 'townie' at heart, I am very nervous about all wildlife. It could be that the most dangerous wildlife here is humans! Manners and good behaviour have disappeared!!
Sending you very best wishes.
Sylvia xxxx
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Wish I could post a big laughing smiley face at your pics Kath!
We don't see many emus down this way but where they do live they are consistent at hanging out. Makes me wonder if the boys playing footy have compete with them for oval space on a regular basis! Lol.
But I see you say it's the drought
.Thanks for the smile!
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HI, MOTH
Your dogs sound like wonderful companions. I looked up the English setter, just to see if the picture in my head was right. Beautiful dog. I have had a Lab mix too, they are simply the sweetest of dogs. When I was single I would have dogs and cats, they would always be animals that just "happened" to me. They would have been found in a ditch, or in a shelter, and my French poodle was left with me for dog-sitting but the owners never claimed her; they told me they didn't want her back. I loved that little dog and miss her to this day. When I got married we continued to have pets, only once did we carefully pick out a dog of a certain breed. That dog turned out to be the only difficult dog we ever had, and lived a short life because of getting hit by a car.
I have had a lot of cats over the years too, my last kitty passed on about 2 years ago, she was 21. She is the one I still feel around me at times, she was a sweetie. I have no animals now because I am doing a bit of traveling, but I probably will again.
I have heard that the coyotes prey on housecats and small dogs in and near the cities, we have coyotes but I think there are plenty of rabbits and other critters around for them. I wish something would eat an armadillo!
We have bears in the southern part of our state, I do hope they don't move up here anytime soon. I like to feed hummingbirds and other wild birds. Black bears will tear up all feeders, I have heard from my sis-in-law out East. She has bears coming up on her patio in the city, and they are not allowed to curb the bears at all, they are quite protected by the law. We have had mountain lion sightings in some parts of our state, but are told they are just lone cats that have "gotten lost". Not sure about that.
You will be done with rads before you know it, progress! Glad it's not slowing you down.
Talk later, love, Mary
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Hello Mary,
I am just popping in to say that the Dead Sea product that I have been using is rich moisturising cream in a tube. In the shop where I go, Holland and Barratt, it is about £7.99 a tube. I wanted to point this out because there are so many products under the Dead Sea brand.
I have found a good deal on line where the product is priced at £5.71 each, postage free, if you buy four. Raymond tells me that he does not think you can buy it from the US. The company is Dolphin Fitness, so you might like to try.
There is an excellent programme on RT television entitled Renegade Inc. It is an interview programme, one to one, and I hear so much sense spoken on it. It is on for half and hour on Mondays at 6:30 pm our time.
The weather has been oppressive and humid today, really awful.
That is all for now.
Love.
Sylvia xxxx
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Hi Sylvia, Maryna and everyone else on this thread .....
I am alive and doing OK. It has been an incredibly busy summer - we have had house guests consistently since June 23rd and this past few days have been the first that my husband and I have had the house to ourselves. It has been exhausting, and I have not had much of a chance to take care of me - but I seem to have held up just fine - albeit, exceedingly tired. I am still stumbling through laundry and changing beds - but at least now there is no rush to get it all ready for the next guests.
Although I have not posted on here, I have been reading and catching up with news about once a week or so, so I do have an idea what is going on in people's treatments and their lives.
British Columbia is having a horrible time with around 600 forest fires burning - our province is in a state of emergency - even though the fires are a considerable distance from Vancouver where I live, the smell of smoke is prominent and the atmosphere is very smoky and unhealthy. Apparently our air quality has been the worst in the world in the last several days - so that gives you an idea of what it is like. I find that it bothers my eyes - stinging them and making them quite uncomfortable - people with compromised respiratory conditions are being advised to stay indoors. The last news I heard is that there is no improvement coming any time soon. We need rain - everywhere is so, so dry.
Hopefully by the time you come to Vancouver, Maryna - things will have improved somewhat and that we will have had rain by then. I have never been on the Alaska cruise, but I have heard that it is beautiful. I sure hope that your health will continue to be good for your upcoming trip - I am happy that you have the opportunity to travel the world - it is a privilege for those of us who have the strength and energy to do it. It would be lovely to have a visit with you while you are here in Vancouver, but since I will be leaving the day after you arrive, I do not think it will be possible. Will you spend any time in Vancouver after the cruise?
My husband and I will be travelling around the same time as you, Maryna - we leave September 2nd for Turkey - it will be a long trip to get there, but from what I have read it is a country full of fascinating history and wonderful architectural delights. I am looking forward to it very much indeed. I do feel the need for a break from the routine here at home which has been all work and cooking for the last couple of months.
Family life keeps me very busy - but I continue to have gratitude for LIFE itself. I look after my little granddaughter every 2nd Friday and she is pure delight - it seems no time since she was born, and now she is a 16 month toddler who gets into my cupboards and loves exploring every nook and cranny. Everything is new and exciting for her.
Sylvia - your gardens look beautiful - and I can appreciate how challenging it must be to keep them watered in the hot water. We have had water restrictions since May - my grass looks like straw, but fortunately my flowers and shrubs are doing great except when the slugs get at them - I just read about using beer for slugs - have you heard of this?
I am off to bed now, since I am still catching up on sleep - but just thought I would check in to let you know that all is well.
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Hello adagio,
It was nice to see you back on the thread. I know that you lead a busy life, especially during the summer.
I hope you have a good time in Turkey.
Thank you for the kind words about the grounds in the apartment complex where I live. We still need a lot of rain to get back to normal.
I have heard about using beer for slugs, but must admit I have not tried it.
I am glad to know that all is well with you. Keep up the good work.
We do have a few new people on the thread going through treatment, so if you have any information or tips that might help them, I am sure they would be grateful.
We have Moth from Canada doing radiotherapy, HelenLouise from Australia recovering from surgery, Susie from the UK should be going through radiotherapy now and we have Flora, UK, posting for her mum and Ellewebs (Ellen) posting for her mum. Both of them could be going through chemotherapy now. I am not sure what their final decision was.
That is all for now.
Love.
Sylvia xxxx
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Hello Ladies, I am back from Portugal and mum's decided to go for the chemo so we are seeing the oncologist on 4th Sept again to sort out the treatment plan. Do you know, we were delayed at the airport and I started chatting to a lady whose mum had got triple negative breast cancer too and had the chemo before the mastectomy and then was going to have the radiotherapy. Hers was also found (like mums) due to another issue - she had gone to the GP with her knee !! You know they say that triple negative is usually found in younger women or those with black ethnic backgrounds but I am beginning to wonder if thats true. Perhaps another study is needed - is triple negative not as uncommon as it used to be perhaps ?? Anyhow, hope all you lovely ladies are keeping ok at the moment and sending lots of love and positive energy your way. Ellen. xxx
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HI, SYLVIA
It's a nice break to get off the computers, phones etc. sometimes, isn't it? I often forget to take my phone along to places, and it's okay.
I always enjoy seeing the acupuncture doc, I do believe it is a beneficial thing to have done, and it works for some things but not others. Last night my knee woke me up with pain, I tried ice, tylenol, and finally used a hot pad which seemed to help the most. I am not sure what that was all about, usually my knees allow me to sleep all night. Possibly caused by the shoes I wore yesterday, I won't wear them again. I have become incredibly sensitive to shoes, I have been giving away all shoes that are too flat-bottomed and unsupportive. Anyway, acupuncture cannot cure structural damage to joints, but it does help neuropathy.
I will be thinking about you on your birthday September 1, that is the day we are traveling to Alaska, so I had better say Happy Birthday before that.
I see Adagio and Ellen have returned to check in, everyone is busy. The fires out West in California and Canada are really bad, I heard yesterday that the smoke is causing a haze here all the way to the East Coast of New England. We will be flying into Vancouver on Sept.1, and it's probably a lot smokier there. from what Moth and Adagio say.
We did have a couple of nice rains. Twice we had an inch and a half in the last 2 weeks, the ground is so dry that it barely soaks anything up, or else it soaks it up so fast that we can't tell it rained a couple of hours later!
I will talk to you later, Love, Mary
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Hi KATH
It looks like the emus are wanting to play with the boys, I imagine they can land quite a kick! Great pics!
Mary
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Hi, Adagio
Glad you are alive (ha) and have popped in, it sounds like your summer was exhausting and enjoyable. Glad you can make those beds now and not be in a hurry!
The fires have been incredible, up and down the West Coast. The smoke must be awful, we have the haze from the smoke here, and I heard it is seen all the way to the East Coast.
We will be in Vancouver in a little over a week, I hope you have rain too by then. We will only be there long enough to pick up our luggage, go through customs, and meet our bus to take us to the ship. No time for anything else, unfortunately. I remember Vancouver being a beautiful city, I hate to hear it's so dry. We have been that way too for most of the summer and just last week got a nice rain and another this week, so hopefully things are turning around. After the cruise we will go on the land portion of the trip to Mt. McKinley and Denali Park; and will fly home from Fairbanks.
I'm glad you have a trip too, I have not been to Turkey, wouldn't it be nice to run into Hanieh there?! (Actually I don't think she is there yet.) Turkey was supposed to be on our itinerary on our Oceania cruise but the cruise line cancelled it because of unrest in the area we would have been visiting. I have not been paying much attention to that part of the world recently, but I'm sure you will have a wonderful time.
Your granddaughter sounds very sweet, I'm sure she keeps you on your toes.
Life is a gift. The only good thing I can say about the BC diagnosis we all share is that it made me sit up and take more notice of the beauty around me, and if I have the energy to do something I do it. There are times though, when I do run out of steam!
Good to hear from you, have a great time on your trip.
Talk to you soon, love, Mary
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Hello, all,
Went for my Preparing for Radiography session early this evening. I was the only person there. You'd think people would want a chance to come in and ask questions. Two very nice young radiographers. The machine is massive. I had no idea. Better idea of treatment schedule, as in I shall be given an appointment for a CT scan and then they will spend two weeks planning my treatment before I start, which sounds like a useful window to get away for a few days.
Susie
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Hello Ellen,
It was nice to see you back on the thread and I hope you had a good time in Portugal.
It is good that your mum has now made up her mind to have chemotherapy and I do hope all goes well when you see the oncologist on September 4th to sort out the treatment plan. I am sure it will be a relief to get started on the treatment.
What a strange coincidence that you started chatting at the airport with a lady whose mum had got breast cancer with triple negative receptors. I was interested to know that the lady in question had had chemotherapy before a mastectomy. This often means that the tumour was large and chemotherapy was done first to try to shrink the tumour to make surgery easier.
You are quite right about the information about TNBC is that it usually affects younger women and black ethnic backgrounds, but this may be changing. Cancer is a very complicated disease and is multi-causal. Perhaps we can have a more detailed conversation about this another time.
It could well be that we need more recent statistics and information. It could still be that younger women are more likely to get it but the number of older women may be increasing.
That is all for this evening.
It is good that everyone is coming together again as we get towards the end of summer.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. You are so lucky to have had some rain and I do hope some will come to Exmouth soon.
I do hope you will manage to set off for your Alaskan cruise in good shape and free of pain.
It must be awful to be living with those awful forest fires. It seems to me that the weather has gone completely mad.
I do hope you will manage to send some photographs while you are away. The members of this group have turned into world travellers despite all the trouble.
We are heading for the late summer bank holiday on Monday, so I hope to be able to have a good rest as well as sorting out quite a few things.
Thinking of you.
Love.
Sylvia xxxx
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Hello Susie,
I was very interested to know that you have been for your Preparing for Radiography session early this evening. I am sure you would have found it very useful. I still get the impression that there are patients out there who just want to get through the treatment without asking too many questions.
I do remember how big the radiotherapy machine was and how small I felt lying on it.
Let us know when you have your CT scan and when you have a date for the radiotherapy.
You are quite right when you say it might be a good idea to get away for a few days while waiting, as waiting is always the worst.
Take care.
Love.
Sylvia xxxx
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Hello everyone,
I thought i would post a diagram of a radiotherapy machine for the benefit of those about to start radiotherapy or going through radiotherapy and have not seen such a diagram before. I think the wording is legible and explains the procedure. I got this diagram from the large version of the Complete Home Medical Guide, British Medical Association, the essential reference for every family. I bought this some time ago in 2016 when it was newly published. I find it very useful and informative. There is a similar book, entitled A-Z Family Medical Encyclopedia, which has a similar diagram but I thought the one in the bigger book would paste better.
Wishing everyone a good weekend.
Best wishes.
Sylvia xxxx
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Ah, the machine at Charing Cross is much bigger than that, looks a bit like a space alien! I asked how long this particular model had been in use and was told about two years.
Susie
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I think this is the alien's big brother.
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Hello Susie,
Thank you for the close up photograph of the actual part of the machine that moves over the area of your body. The diagram that I pasted from my medical book is just that, a symbolic diagram of the machine, showing the principle of the mechanism. It is not a photograph. The photograph you posted is much the same as the one I had thirteen years ago. In the UK we do not have Proton Beam therapy yet, although they do have it in other countries and that is why we had articles in the papers about the parents who took their little boy out of the hospital to Eastern Europe to get Proton Beam therapy. My information is that two Proton Beam centres are being built in the UK, one in Manchester and one in London. Apparently it takes a long time to build these. The one in Manchester is due to be finished first. Apparently Proton Beam radiotherapy is said to be safer and more accurate.
I do not think any of us who went through the weeks of radiotherapy will ever forget the feeling of feeling so small lying on the table under the machine. I certainly will not.
I noted with interest the other photograph you posted. It looks like a robot and looks pretty ugly.
I hope all goes well with your radiotherapy.
Have a good weekend.
Love.
Sylvia xxxx
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Hello everyone,
I am just popping in to wish you all a relaxing weekend, and to all the Brits, make the most of the extra Bank Holiday Monday. There are no more public holidays until Christmas!
Best wishes.
Sylvia xxxx
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The robot is Russian and has attracted much mirth. It's like something out of Lost in Space (the 60s version).
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It is like being in a sci fi movie. I look at the technology and wonder how did someone think this up??
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Sylvia, Helen, Susie
I hope everyone is doing well, and maybe having decent weather? Here it is very hot and windy today, with a promise of rain and cooler temps tomorrow. Friday I will leave for Alaska, it is very odd to be digging out gloves, scarves, stocking caps and warm sweaters when it's 94F (35C). That's what I've been doing this morning and getting very tired of it. I decided to not wait until the last day before starting to pack, we'll see how this goes.
Plus everything in my body aches, joints and muscles both. Plus a headache. I am hoping it is because of the rain coming in, I remember a couple of weeks ago something similar happened. One day I felt as if I'd been beaten with a bat, and the next day we had a good rain. Anyway, my knee has been giving me problems for the last few days, now everything else has joined in. There's my whine for now!
The radiation machine is very intimidating looking, I didn't have rads so have no personal experience, I hear one is only laying under the machine for a matter of minutes, it doesn't take long to get the dose apparently.
Talk more later, love, Mary
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Hi all,
I started radiation yesterday and the few minutes under the machine turned out to be much longer. They take extra scans and measurements for the first three days. Be glad when that's over. Holding arms above head is tricky with cording.
MO has also prescribed Xeloda / Capecitabine starting tomorrow and for up to 6 months. More chemo. He advised this is now recommended in TNBC where Neo adjuvant chemo did not get a complete response.
Has anyone any experience with Xeloda? Understand the main SE is foot and hand syndrome. Any advice would be appreciated.
Have fun in Alaska Mary!
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I was told the first two sessions would be longer while they made absolutely sure of the targets. I'm grateful that they are taking such care but not looking forward to having to hold still as that's something I'm very bad at!
I had a letter from Charing Cross today which I hoped would be my CT appointment but it was just a copy of a letter to my GP telling her the latest. I was described as having tolerated chemo 'rather well'. It's funny how that makes you feel as if you've done something clever rather than it just being the luck of the draw.
Susie
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Hi, Helen
I am not well-versed on Xeloda, but I do know of people who have taken it. I think there is a thread on this site about people on the drug. I do believe it's in a pill form. At least 6 months is not forever, that is good. I hope that you don't get the foot/hand syndrome.
A male friend of mine did have this temporarily, it caused him to have blisters on his feet. My brother-in-law took this drug for a while too, he had no ill effects. My husband had this blistering of the feet, too, but he was not on any chemo treatment. The best thing we found to treat it was Urea Cream, had to have a doctor's prescription for it. At any rate, you will not necessarily get that side effect, I wish you smooth sailing through the radiation and new medication.
I didn't know you had the cording, how do you treat that?
Talk to you soon, love, Mary
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Thanks for the positive thoughts and wishes Mary,
The cording is treated with physio and massage. My husband helps me with a daily routine to drain the lymph and we add in some gentle rubbing along the cords to release them. Cording is the lymph system response to the trauma of surgery. Sometimes they simply pop and release. Fingers crossed that happens!
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HI, Sylvia
Thanks for your answer. I think I get panicky before a trip because I'm afraid I won't be able to keep up, which frustrates me because I have to even think about it. And then I remember I need to count my blessings instead.
We are being told to pack warm clothes for Alaska. Vancouver is supposed to be in the 60sF Saturday, but as we go north it will get cooler, and we are all now used to 90F+ degrees for the last few months! The Alaska natives will probably think it's warm however, and will think we are crazy tourists! But we will be outside a lot and there will be a high probability of rain, and once we get to Denali it will be the coolest temps of the trip.
I think the knee surgery your brother had where the debris is cleaned out is called arthroscopic surgery. It was mentioned to me but 2 docs told me it was not a good fit for my case, because there was a high possibility it wouldn't be successful.
I'm glad the mole on your arm is finally completely cleared up, I didn't know you had those complications; it's no wonder you were so worried about the whole ordeal. I hope there aren't any more of those things appearing.
Weather report: we had a very large rain yesterday, I checked my rain gauge and couldn't believe my eyes, it held 4 3/4 inches! Very good for the creeks and ponds. I hope you have had some rain by now?
Talk to you soon, love, Mary
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